Living and Loving Life

Highly Emotional

2012-02-02T09:15:00.002-05:00

I have been extremely emotional lately. I'm usually pretty high strung around this time of year though, being that I'm so close to my transplantiversary. Every year I start to go through my blog entries before, during, and after transplant and am absolutely amazed at how far I've come!

Just 3 years ago around this time, I was beginning to wonder if I was going to survive to transplant. I recall saying a prayer every night before I went to bed for God to just let me wake up in the morning. Just let me survive one more night. I knew my time was winding down and there was nothing left for me to do about it. I was depressed and scared and frankly, just down right pissed off that I had to go through the torture that is waiting for a double lung transplant.

4 years ago, I was just getting use to the idea that I was going to need this surgery. I wish I could go back in time to let myself know that things turned out ok, that the surgery wasnt as bad as I thought it was going to be and that I survived. That was the biggest thing that held back my going forward with the transplant process.

It's funny though if you think about it. In order to say that you want to live, you have to be willing to undergo a surgery that could very well cause you to die. You have to be on death's door. You have to be able to accept all of that and then move on slowly hoping that someone along the way had signed their donor card and told their family their wishes to be a donor AND they have to be a good match. If all of those little pieces fall into place then you get the greatest gift of all. You get to live.

Even better, you get to live with health. Something as a CF patient, was a little hard to comprehend.

Don't gets wrong, as a child, I didn't realize that I was "sick". It wasn't until forth grade that I knew that my lungs were much different than anyone elses when I got sick and had to do inhaled antibiotics for weeks. That's when things began to click. Even though I knew I had cystic fibrosis, I don't think I really understood what it really meant for my future.

Having everything happen to me the way it has, however, has been a blessing to me. It's allowed me to meet some great people online that I am so proud to say I'm part of that community. It was allowed me to look at life with a sense that I'm not taking a second for granted. I'm living life with every breath, every beautiful, deep, perfect, healthy, donor lung breath :)

With all of that being said....

Earlier this week an amazing advancement in the CF world happened. The FDA approved a drug that corrects the underlying cause of the disease. It will only work for one mutation though, even though there are thousands of combinations of the CF mutations. This drug will only work for G551D. Not the mutation I have. In fact, not the mutation that the majority of the CF world has. But it's a start. It brings hope to thousands that the cure for all of us will be found during our lifetime. And even better, that all of the children being born now have a chance to live completely normal lives!

I don't know where all of tears have come from this past week, but I do know that I am thankful to be alive because someone said yes. I am thankful for the brilliant people who are so close to riding this disease. I am thankful for all of the donations that my friends and family have given the CFF, because without them all of the funding needed to make this leap wouldn't have happened.

I am thankful at this time of year and I am blessed

Oh wow, this is hard work!

2012-01-16T20:51:00.004-05:00

So instead of studying, I've decided to update my blog a little. I know... it's been forever since I've done this. I've been a little busy :)

Cameron and I have been slowly making plans for our wedding. The date that we want is June 7, 2013, and we are looking at venues now to find one that fits us, our budget and our date. That's been a bit of a challenge for the budget part. There's just so many details that I didn't realize that I'd be having to deal with. Every spare chance I have, I'm looking at things online. Right now I'm on a flower and invitation kick. Found a few flowers I like, but hoping that they won't cost me a fortune to get them.

I think I'm going to go simple for my bridesmaids bouquets. They'll be wearing purple dresses and I think I either want tiger lilies or tulips in orange for them to carry. With it being a June wedding, both should be in season, so not too bad for price and being able to find them. I want my bouquet to have orange and purple in it. It'd also be nice to have a good amount of green in it too to fill it out a little. But I dunno. I feel a little silly spending the amount that I'm going to be spending on flowers which will just die.... oh well. It's all about the pictures, right? haha

I do have my dress and my shoes though, so the important part of the wedding is taken care of :).

I've been working my way through the last year of school. It has not been easy at all. Last quarter I took Intro to CLS (an introductory course to the program which explains how the lab is set up, accreditation and lab techniques), Hematology I and II, and Clinical Chemistry. It was the hardest quarter of school I've ever had to go through! But, I did manage to make the Dean's List!! I have never been so proud of myself :)

This quarter is looking to be just as hard, if not harder. I'm in Clinical Immunology II, Clinical Practicum I, and Clinical Parasitology right now. In a couple of weeks, we'll take a couple weeks off Practicum and do Hemostasis and Urinalysis. Also, at some point, we're going to cover our Senior Seminar class. Not really sure how that is going to go, but I figure it shouldn't be too bad. My practicum site is awesome! I'm in the hematology department right now and have been running the machines and really getting good hands-on experience. I now know that this is what I want to do, and that makes me feel a little better about my choice of degrees. It would be rather frustrating if I were to go through this year and then find out when I got in the field that I hated it.

That's the basics of what's been going on with me... not much to talk about, but my days are pleasantly filled. I have my dogs, my fiance, and my health. Couldn't ask for much more right now :)

Engaged!

2011-10-17T21:01:00.003-04:00

So I don't have a lot of time to go into the details of how it happened, but Cameron and I are engaged! He proposed the day after his birthday at his mom and his birthday party (they share the same birthday). All of our family and a few friends were there. It was simple and it was beautiful.

Here's a picture of the ring!

Now back to studying for school. I'm in clinicals now and don't have much time to spare. :)

Blogger Challenge

2011-07-28T15:07:00.004-04:00

There are a few blogs that I follow on a regular basis. Especially being post-tx, I have less time to focus on them as I have had in the past, but since I've taken this summer off from school, I've had plenty of extra time to catch up on my online community that helped me get through so much in the past few years. One of them is Piper and she is now post-tx herself and is very active in the CF community. Her blog gave a challenge to her readers, which I found interesting...

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

So here it goes...

I've mentioned in other posts that compliance is something that I feel is held over the heads of those of us with chronic diseases. Especially before transplant, I felt that it was a threat from people who held the power over us for recommendations for transplant. If we don't do our treatments as told, if we don't take our pills exactly, if we don't exercise like we should... basically, if we're human for a day and forget something we run the risk of not getting recommending for transplant, should the need arise. It's a lot of pressure to place on a person their entire life!

At the same time, compliance is not the only piece to the health care puzzle. I had one doctor who would constantly remind me that I needed to exercise more to maintain my lung function. That it would help me build muscle which would help me maintain my weight. Weight and lung function go hand in hand, so it would seem like if I could keep my weight, I would keep my lung function. (What a mouthful of twisted thinking...) All of that being said, any time I had a decrease in lung function, especially after a few weeks of IVs, the doctor would simply shrug her shoulders and tell me it was just the nature of the disease to gradually decline over the years. So in a way, she was playing both sides of the issue... You need to work harder, but if you fail, it's not your fault. It was very confusing to me. I was constantly told that it was my fault for failing lung function while in the same breath being told that it wasn't my fault, it's the disease's fault. Confused yet, because I am! That's what I feel this poor young lady is being told (from Piper's blog)

Here's what I came up with to help my own sanity:

CF is a crazy bitch.

I believe what my doctor was trying to tell me was that with regular exercise, treatments, medication, etc. we can control how quickly we decline. In some cases, people have been able to reverse the downward trend, but that isn't the case for everyone. To help not get so discouraged many fall back on the mantra "It's the nature of the disease - it's progressive and not my fault." While I feel that this is OK to get you through the rough patches, I don't feel that it is what patients should hold on to. I personally feel like this is accepting your decline and in my case, my fight declined.

Waiting for transplant, I continued to deteriorate on a regular basis. It was what was expected of me and at times, I almost felt it was encouraged to get me a higher LAS score. Get me closer to transplant. While I wanted to live to make it to transplant, I had a hard time finding the fight to continue pushing myself to try and get "better". It was a weird backwards world for me, not fighting and not feeling like I had control over myself, where we almost celebrated the decline. What was even more strange to me was that when I woke up after my surgery, it was like a switch had been flipped and I expected everything to be going up instead of down. I was willing to work again and push myself to get "better". Basically, the point I'm trying to find here is that I think our attitude to which trend we should be following (for me) is in the hands of our doctors. If they expect us to get better, we expect it to. If we fail in any way, many of us take it far too personal. Lately though, I have found that going home and looking at where I started and see where I am today (regardless of the results of the last test) I am still better off... I have still gained ground. It makes me feel a little bit better about how things are going.

Maybe, for those starting the transplant process, or those who are in the middle of it, need to realize that even though you are declining you have to keep fighting. That's what proves to the transplant center that you deserve a transplant. As long as you are trying, you are winning. I know... corny... but that's what they look for. And for all those CFers wondering if they are going to be a candidate for transplant, most centers that that you are a CFer into consideration. You can take millions of pills a day. That's a key to surviving post-transplant. You know that exercise is a key to life. That will only help speed up your recovery.

So after feeling like I've just rambled on and on... I hope that someone got something out of this. Best wishes to all of my Fibros and Cysters and I hope that everyone keeps fighting, regardless of what your current status you are at. <3

2011-07-23T21:59:00.003-04:00

Not a whole lot to report on. Life has been rather boring actually, but I'm not complaining!

I did have another ER trip a few weeks after Easter for chest pain. After some tests, the ER doc at the West Chester Medical Center decided that the most likely cause for the pain was pleurisy. That's inflammation of the lining surrounding the lungs. I had it often before transplant, but it was also linked to an infection. I still don't know what my pleurisy was from this last time. Dr. Trapnell is stumped by it too. And to make things more frustrating, I still have the pain from time to time with no connecting factor to help decide what the cause is.

The bad thing about me having the pleurisy episode was that they gave me pain killers which made it hard to finish my lab report which was due the next day. I did manage to get an extension, I only had to provide documentation for everything, which is definitely something I can come up with :) I did manage to have a horrible GI reaction to the pain meds though. I think what happened was that instead of taking 2 percocet like I've done in the past, I think I grabbed the dilaudid instead which is much stronger. I ended up being sick the entire next day, but managed to get through my classes anyway.

I am now done with classes for the summer though. I managed to get an A in statistics, a B+ in Anatomy and a B in Ecology. Not what I was wanting to get, and I'll admit, I did sulk for a few days after getting my final grades. A few days after that though, I found a new love :) Her name is Eva and my mom found her at the groomers when she dropped her dogs off. An older lady owned her before and decided that she wasn't able to care for her so wanted to find her a new home. Below is a picture of my little girl :)

Finally, Cameron and I celebrated our 10 year anniversary and took a trip out to New Mexico to celebrate. It was my first time on a plane since transplant and it was wonderful to not have issues during the flight like I have had before. It was a great trip. We took a couple days and traveled up to Albuquerque and Sante Fe, which was beautiful. We also did a day trip to the Gila Cliff Dwellings. I still can't decide if I had altitude sickness, car sickness, or both during that trip. Cameron's dad drove up to the dwellings and I think he climbed too quickly and the roads were very curvy. That didn't help matters... so I was sick when we got there. Then we climbed the trail to the cliff dwellings, which I'm glad I did because it was gorgeous, but I had my heart pounding in my ears and felt nausious the whole time... plus, I was short of breath. Not something that I like to be now that I'm post-tx. It just hits too close to home in reminding me how things were before transplant. As soon as we came down in altitude though, I felt much better. I also had taken an anti-nausea pill so that helped a lot too.

So basically, since we got back in the beginning of July, I've been doing a whole lot of sitting on the couch and training the new puppy. Jack's getting along with her, but he likes it better when she's not here. I have been officially accepted into my clinicals though, so they start on September 21st. I probably won't be writing a whole lot when those start :) Wish me luck!!

Easter

2011-05-06T15:32:00.002-04:00

So it's been a while since I've had a real health post. I guess all good streaks come to an end eventually...

I went to my family's Easter party on Saturday. That went fine and I was happy to see everyone. I had been a little tired that whole week, but all of my being tired I usually contribute to school stress. Anyway, I went to bed a little early since I planned on getting up extra early for church.

About 2am I woke up and was freezing. I got up to take my temperature (I was surrounded by dogs, there was no way that I was just normally cold) and ended up getting sick twice. I took my temperature and was at 99.5 degrees, which is a fever for me. I normally run around 97. So I took a couple tylenol to head things off and went back to bed. I didn't sleep well since I was still feeling so cold.

Around 5am I woke back up and was still shivering so I took my temperature again. At this point, my fever had risen to 102, so I knew it was time to give Cleveland a call and check in. After a brief chat with the pulmonary fellow on-call, we decided it would be best for me to head to the ER to get checked out, just to make sure there wasn't something else going on that couldn't be diagnosed over the phone.

After waking Cameron up, we headed to UC's emergency room. In hind sight, I should have never gone there, I should have tried to go to Children's... But anyway... Things ran smoothly for the first hour I was there, then they had a shift change and I got a horrible resident who insisted that I be admitted. She kept telling me that I had a pneumonia, but I don't think that's the case. I have some scaring on my left lung and the doctors not familiar with my case see it as pneumonia. I had a ton of things due in classes the following week and flat out told the resident that I hated the hospital and refused to be admitted there. I told her to set up a transfer to either Children's or to Cleveland. Children's doctor on the floor wasn't comfortable with me coming there so I thought I was heading to Cleveland.

At that point, Cameron called Dr. Trapnell and they came up with a plan for me to do IV antibiotics at home instead of being admitted. He figured that I probably had a GI thing going on, not pulmonary involvement. The UC ER doc didn't like that plan and made me sign out AMA (against medical advice). Since I had to sign the AMA, no home healthcare company would take my case to do the home IVs. Making a 12 hour story a little shorter, the next day Dr. Trapnell and I made the decision not to do IVs since we were mostly sure that I only had a stomach bug. Looking back on my weekend, I probably brought this on myself.

Earlier that weekend I had dinner at a friend's house. They weren't completely aware of my dietary restrictions since transplant and well... I didn't have the heart to tell them that I couldn't eat the food (It had feta cheese) but figured I could chance it and it would probably be ok. I'm guessing that's where the vomiting and fever came from. Regardless, it still falls under the GI bug category, so I just left the details out from Dr. Trapnell because I felt bad for being a "bad transplant patient"

Now, 2 weeks later, the only thing that I have are a few giant bruises from the IVs and a small lecture from Dr. Trapnell that I should have called him sooner than I did. You could tell by what he said that he honestly cares about me.

I only have a few more weeks left of school and then I'm done for the summer. Still waiting to hear if I got my clinicals. Figured I'd give them until the end of the week (which I have now) and then go to the office next week and talk to them face to face and see what the hold up is (which I will do on monday).

Hope everyone's having a wonderful spring!

Projects

2011-04-21T15:09:00.002-04:00

So I've decided I'm going to be more active. I mean that in multiple ways.

1) I am going to start taking care of my diabetes. Honestly, I am not the best when it comes to checking sugars or taking my insulin. I go in phases where for about a month, I'll be really good about things. Then I miss a day, and that day turns into 2, which turns into a week, which turns into a month. Then I realize that I haven't been taking care of myself, and start the pattern over again. Well I've had it with myself. I'm going to start being responsible. I am going to watch my diet and avoid excessive sugar (like having 4 sodas in one day) hopefully that won't have an impact on my weight.

2) I'm going to start running. I got it in my head that I want to run the Flying Pigs Marathon. Right now, I'm just going to train for next year (2012) and I'm aiming to run the half-marathon. If I get really good at running and really enjoy it, I may do the full... but I wouldn't get your hopes up on that one. I'm a little nervous about doing this though. Mostly because I don't have great joints from all the years of dance and I am also worried that such an increase in my cardio will cause me to loose weight. I have been trying to do my research about diets to have while running and ways to not injure myself. We'll see if I can manage that much.

I have a theory with the running though. I have been hovering around 70% with my FEV1 post transplant. I have been disappointed by that, since most people I know that are post have a lung function in the 100s. I am hoping that by running and breathing deeper that I can get my lung function to increase in volume.

I'm really hoping that now that I have these things down in writing that I'll keep myself accountable. We'll see!!

And the Craziness Continues!

2011-03-28T17:03:00.002-04:00

The Winter quarter was rough!! I had Literature (the topic was travel writing during the Romantic period) which I got an A- in, Cell Biology (the HARDEST class I've ever taken!) which I got a B- in, and the 2nd quarter of Anatomy and Physiology which I got an A. Overall, I was happy with how my grades turned out. That was pretty much all I've done in the last few months.

I did go to a couple of Kelly's dance competitions. Sad to think that these are her last ones since she graduates. I'm sure I'll see her dance in college though. She's already planning on joining the dance team at the school she decides on. She hasn't picked a school yet, but I'm sure that decision will come soon :)

Had another appointment in Cleveland last week. Everything went well and I don't have to go back for another 6 months. Finally, I have been pushed to every 6 months!! I have been waiting for that for a while since it means that I'm far enough out and that I'm stable. It makes me happy :)

I started the new quarter today. I'm taking Ecology, which is going to be rough since I am not interested in this subject at all, the last quarter of Anatomy and Statistics. My Stats class is Tuesdays from 6-8:50. That's going to be the eternal class :( Wish me Luck!!!

One quarter ends.... another begins!

2011-01-03T16:17:00.002-05:00

Since my last post, I've had sinus surgery (verdict is still out on whether or not it was successful), written a research paper on the gene that codes for alpha-1 antitrypsin, taken 2 final exams, and started my new quarter at UC.

The sinus surgery went well. The recovery was quick, which was all I was really hoping for. I'm still super congested and having headaches. The doc put me on a steroid rinse, so that hopefully will help with everything. Also on the health front, I went back to Cleveland for a checkup. All is well again. PFTs were actually a little bit higher, so the goal is to keep moving and maybe they'll go up some more! My white blood count was a little low when I was up there, so they had me re-check it a few weeks later, and it was back in normal range.

School went well. I was proud of how I did with my first quarter back. I got an A in anatomy, and a B in genetics. The B in genetics was the hardest B I've ever earned! But I think a lot of it had to do with the paper I wrote on alpha-1 antitrypsin. It was the hardest paper I've ever written due to the fact that I couldn't find information that was on my level of knowledge. Everything I found was written for people doing research on the gene. Definitely not meant for an undergrad genetics student! Somehow I made it work though and got a 100% - yay!

Had a good break and a wonderful holiday season. Spent a lot of time with family and a good amount of time catching up on sleep and relaxing with my poodle. During that time, a friend of the family, Tina, received her double lung transplant and is doing wonderful! She got out of the hospital in 10 days and is now back at home. AMAZING! I'm so proud of her and reading her story on her caringbridge site just brings back all of the emotions I had when I went through my transplant.

I started the winter quarter today, which so far is looking promising. I'm taking Topics in Literature (writings about travel in the romantic period - yawn), Cell Structure and Function (could be promising, but mostly boring so far) and Anatomy II (Getting more in depth on other systems we didn't cover last quarter) so I'm crossing my fingers and hoping for straight As. We'll see.

Hope everyone had a wonderful holiday season and best of luck to everyone in 2011!!

Oh My...

2010-10-27T19:31:00.002-04:00

So I just realized that it's been a LONG time since I've had a post. Most of that is due to the fact that I moved out of my parents' house.

Cameron and I bought a house in Westwood! :) It's already been a month since I've moved in and it has already been a lot of work. We haven't had to deal with yard work or any major repairs yet. Just little things, but it's still been a lot! The worst has been working on the kitchen sink, which despite our best efforts, is still leaking. I think it may be time to call in a plumber... or maybe a Daddy :)

The other thing that has been going on is I started school again! Yay! I'm only taking 2 classes, but it's 8 credit hours, which is a good amount considering it's been 3 years since I've been in school. Genetics and Anatomy I. Anatomy isn't too bad since I took it in high school, so a lot of it is review for me. Genetics on the other hand... wow, way more difficult than I was expecting! So far I'm doing OK in my classes. As and Bs, which I can't really ask for more since I'm re-learning how to learn.

On the health side, I've been having recurring sinus infections, so it's back for some sinus surgery for me! November 17th... and I'm going to have my dog vaccinated around then so he'll be at my parents' house for a week during that time. Figured it'd be best to have him out of the house while I'm recovering so I don't have to care for him while I'm trying to heal. It shouldn't be more than a day or two until I'm mobile, but it just times out well.

Hopefully I'll write more again when the quarter ends. Just don't have a ton of time right now!

Spoons - Revisited

2010-07-25T23:05:00.002-04:00

I was talking to Cameron the other day about my blog and have come to realize that my favorite blog entry, the one I always get the most comments about, the one that was the most personal to me was the one where I referenced the spoon theory. I wrote it about a month before my lung transplant and I was re-reading it tonight. Wow, what a difference a new set of lungs makes!

I said that on average, I had 10 spoons a day. Now, I have an easy 20 on a bad day. A BAD day... I don't think I could even comprehend that when I wrote the original! A bad day for me is when I am not getting sleep because the meds have kept me awake, the meds have upset my stomach, exhausted because my EBV titers are high from the donor lungs, but all in all, I still can breathe, I can run up the stairs if I wanted to, and the amount of care that I need is next to none. The most help that I need to take care of myself now is the occasional preparring of meals or running upstairs for me to fetch something. And that really, is because I'm too lazy to do it myself, not because I can't do it.

It's an amazing feeling to take a look back and see how far I've come. I've come so far that I'm getting ready to move out on my own... something that I wasn't sure if it was possible pre-tx. I'm making plans to travel down to Knoxville to visit my college roommate, Stefanie. Plans that are WEEKS in the future, not DAYS. I was always so scarred to make plans before. I never knew how I would be feeling, if I'd be on IVs again, plus... having to lug all of that equipment around. Seesh! Even when I went to Cameron's family reunion, I only had a duffle back and another small extra bag for toiletries - leave it to being a girl to add bags to my packing :)

Anyway, for those who would like to know... a typical day for me:

I wake up at 8am and take my morning pills. Sometimes I fall back asleep, but most days I'm up for the day. I sit around, sometimes do some house work (or, atleast I did until my dad lost his job and took those over to keep himself busy).

Come lunch time, either Dad or I make lunch for the both of us. Right now we've been trying to sit outside with the dogs and eat it if it's not too hot.

Then I run my erronds or do some more sitting around or sometimes, exercise... depending on how the weather is.

Then comes dinner and hanging out with the family and Cameron. 8pm I take my evening pills. Then I hang out with everyone until it's time to go to bed.

Once a month I do an inhaled antibiotic in the afternoon, but that's the only extra medical thing I do.

That's it... that's my post-transplant living. You have to admmit, compared to all that I had to go through on a daily basis before, it's pretty sweet living :)

A whole lot of Normal

2010-06-12T08:59:00.002-04:00

So my life has been busy and boring, all at the same time!

Not a lot going on since my last post. Just the basics, a few doctors appointments, hanging out with friends, having a good time, and then there's the trying to find a home for Cameron and I, as well as starting to freak out a little about school.

Cameron and I had found a house, and we both were head of heels in love with it. Then the mold inspection came back... oh boy... so now we're heart-broken and shopping again for houses. Unfortunately, all of the buffered time we had before I started school again is gone, so we're under a deadline to find a house now. The last thing in the world that I want to be doing is moving while trying to get use to going to school again. ick.

And while I'm talking about school, I am about as nervous as one can be about going back. I've been out of school for about, oh... 3 years now. And it's not like I was out of school and working during that time, well.. I was working, but in a completely different sense of the word. My job was taking care of myself and that was almost too much of a job for me to do by myself. Thank God for great families :) But anyway, I can already feel the anxiety building with school approaching. I have 2 months left before I start still... and my personality is to take the next 2 months and fret over it until the week before, and then I go into full panic mode. After I get through my first day, I know I'll be fine... but it's just getting through that first day. blah.

But that's all that's been going on. As soon as I have anything else going on, I'll be sure to post it, but until then.... <3

Just a normal update

2010-06-01T13:06:00.000-04:00

I really am going to try and post more often. It helps keep me a little more sane :).
So since my last update post, I've been busy! Mid-April Cam and I went to Indianapolis for the midwest CF consortium for social workers and nutritionalist. I was part of the panel discussion and got to meet some really cool CFers. We were all post transplant and I am finding, the further out I get from transplant, that I am starting to crave talking to others who are in the transplant know. I also got to meet Tiffany Christenson who wrote the book "sick girl speaks!" Which is fabulous! The book is neither about CF nor transplant, but references them both throughout.

I also met Sam, a fellow Cincinnatian, and her parents. All were so nice, and I felt honored to be on the panel with each of them.

Next was the CF walk. My team wasn't as successful as years past, but I walked most of it this year, and that's what really mattered to me!! It was a beautiful day and Sam got to cut the ribbon. I was so excited for her. Her dad took a picture of the two of us, and I'm axiously waiting for them to put it on facebook :)

Finally, Cameron and I are house shopping, so I've been a little busy! It's a fine balance betweeen what we can afford and what we're willing to put into a house. A lot of the houses we've looked at have been "handyman specials" which is kind of frightening :).

Oh! And I saw Dr. Trapnell last week and my lung function is at 70% - the highest it's been post-transplant! I figure if I really start trying to work out, I can get it higher. Maybe this is the motivation I've needed all along, especially since dance is coming to an end this weekend. Come see me in the recital if you can! :).

Growing Up

2010-05-26T07:51:00.002-04:00

Over the last year I've run into people that I haven't seen in months/years. It's almost always the same conversation.

"Wow, a double lung transplant?! I'm so glad you got that, you were so sick as a kid!"

Maybe it was just me, but I never felt sick as a kid. I played just as hard as the boys I grew up around (there just weren't many girls on my street) and I can remember occasionally having to stop and cough. That's it, just a cough here and there. In fact, now that I have my transplant, I constantly am comparing my life to when I was about 12. Health-wise that is. I hope I've at least matured a little since then ;) but to call myself sick while I was in grade school, still to this day, doesn't make sense to me.

For a CFer, I was healthy as a kid. I didn't know many other CFers growing up. The only other kid I knew was Danny, and that was strictly because our parents worked together. I knew he was typically sicker than I was, but I just figured that was because he had a more severe case or that he just didn't take care of himself like my parents had made me. But still, I never FELT sick. Mentally, emotionally, physically, I felt like a normal child. I KNEW I was different, only because how many 7 year olds have you seen grab a handful of pills and swallow them in one swallow? How many 10 year olds have you met that were voluntarily beaten by their parents each morning, sometimes twice a day (haha, CPTs, not thrown around)? Of course I complained about these things because I recognized them as "not normal" but never once did I ever sit down and think "it must be because I'm sick". I was raised to think "I do this to NOT get sick" and I think that made all the difference.

I know this now, but I think it made me push harder to do the physical things I loved to do, like dance. I seriously danced until I was about 16 years old, then I decided to get a job and there just wasn't enough time in the day to do dance, work, and keep up with school. It's one of my regrets. I can't help but think that if I continued to dance, if I kept exercising seriously, if I didn't hang around all of my friends who smoked (most of which have quit now and I'm glad I have them all in my life, regardless of their choices) that I could have postponed the transplant process. Maybe I could have gotten out of school during the 4 years, instead of taking so much time off because I just couldn't physically get to class. But these are all "what-if's" and don't matter.

Starting during the second half of my high school years, I began to get sick. I held on as tight as I could to a normal life... which is so common in the CF community, I'm now finding. We cling to normalcy, we crave it. We want it so bad and there isn't anything anyone can say to change our minds. It makes us fighters, warriors in life. Many of us experience things that most people will never come across. We're stubborn, but some of the most loyal and caring people you'll ever meet. Talk to a CF child and most of the time, you'll feel like you're talking to an adult. We grow up quick and we learn the medical field just as fast. Making decisions about feeding tubes, insulin, IV antibiotics/ports/PICC lines, GI surgeries, lung transplants, bronchoscopies, sinus surgeries, and whatever other problems arise all become second nature. Here's the problem, here's a couple of solutions, which one are you going to pick? Doubt constantly nags the back of your mind that you're making the right decision and that there won't be any further complications from the choice you made.

As a child, those were my parents problems. They tried to let me be a kid for as long as I could. As I grew older, the decisions fell more on me. I grew up quick, but never as quick as when they first brought the idea of transplantation to the table. I went into denial, through all the stages of grief during the waiting process, but am so happy I made the choice that I did. I'm alive today because of that choice and because my donor's family said "yes." I am almost certain I wouldn't be alive today if we both hadn't done what we did.

Wow, I need to post more!

2010-04-14T13:11:00.002-04:00

SO I guess the old adage holds... no news is good news!

I went back up to Cleveland on March 15 and 16 to be rechecked for the acute rejection they found in February. Cameron and I went and made a little vacation out of it :) We went to the Science Center which was geared toward little kids, but we loved it all the same. Then we went to the Rock and Roll Hall of Fame. I'd been meaning to go there since I first went up to Cleveland almost 2 years ago, but I've been and it was awesome! That Friday I got the call from Cleveland saying that the rejection had cleared... so.... I'm done with biopsies!!! Well, unless something goes wrong, and I've decided that it's not, so I'm done :p

Kelly's had 2 dance competitions and done wonderfully at them. Cameron and I have done some running around, getting dinners with friends and such. We're really trying to find a place to live now since June is coming closer by the minute!

On April 2, I had my g-tube site stitched up and my port removed, so now I'm as normal as I'm going to get :) I got back to Dr. J next monday to have things looked at, but in my opinion, it looks great!

Oh, and on a little side note, I'm officially registered for classes at University of Cincinnati! My class for the summer starts in July and it's a literature class... we'll see... I have to take it to complete my gen.ed. requirements. Wish me Luck!!

A Case of the Blahs

2010-03-12T13:59:00.002-05:00

I just haven't felt right the last couple days. Been extra sleepy and had a total lack of motivation to actually do the things I need to get done. I should exercise everyday (shouldn't we all), I should be eating healthier (again... all of us), and I should just forse my little butt into bed and take a nap. Of course, none of this has happened and I just keep feeling like I'm loosing my CF role models.

In Decemeber, a shining beakon in the CF community passed away. Her name was Melissa and I talked to her often online. She was part of the CF.com family and also made an appearance on CF2Chat.com every now and then. I knew in November that she was making her final plans and it crushed me. Her positive spirit is one of many that gave me the courage to take the risk on transplant and to push forward. I didn't find out about her death until a week after it had happened.

Now another girl, Eva, is waiting for another set of lungs. She had her transplant almsot 3 years ago and has gone into chronic rejection. If you're active in the CF web community, you know who she is and her story. About a month ago they gave her just a few more days to live. DAYS but she's stilling holding on as of now. Very weak, but alive.

Melissa's death hit me because I considered her a friend, Eva's on the other hand, I've never spoken with her. I've read her blog and I feel like I have gotten to know her. But her being this sick really stricks a cord with me. Post-transplant living is great, I wouldn't trade it for anything... but it scares the shit out of me. There's Danny, and now Eva, and there's another girl I've been talking to who is also in chronic rejection and waiting on the list at Cleveland for her 2nd transplant.

So with all of that being said, I'm just kind of in a funk of a mood. I think tonight will be a good night to cook a good dinner for Cameron and I and then sit on the couch watching a movie. Just the two of us. Maybe I'll actually get to sleep in tomorrow.

Time Flies

2010-03-02T09:42:00.002-05:00

Where did February go?! I've been meaning to sit down and put an update on here for the last 2 weeks and things have just been a little crazy in our house.

Kelly turned 17, which is a little scary. On her actual birthday she was on her way to school and got in a car accident. What a great gift, huh! Everyone was fine, but the cars were a little banged up. We've been dealing with the aftermath of the other driver since though. Neither Kelly or the other kid were given a ticket so the plan was to have the insurance companies pay for their own cars. The other driver didn't have collision coverage so they threatened to sue... people are just so friendly anymore :) But I think that's all resolved now, or at least, I hope it is.

February 9 I went back up to Cleveland for my 1 year appointment!! I spent a lot of that week just reflecting on everything I've been through this last year. There are times when it feels like my transplant was forever ago, and then in the same moment, it feels like it still hasn't happened. Like the 2 years leading up to transplant were all just a bad dream and I woke up, got out of bed, and felt fine. I also got a letter from Lifebanc, the group that handles the correspondence between donors and recipients, and they said they were unable to deliver my letter to my donor family because they were unable to locate them. That kind of deflated me for a few days... I wanted to get a letter back so badly!! I want to know who my donor was and to be able to thank the family properly. I know if it's meant to be it'll happen, but it doesn't make it suck any less.

That Friday, Cleveland called with my biopsy results telling me that I was, once again, in slight rejection. I wasn't so upset about the fact that I was in rejection (they just up my prednisone and see me back in about a month), I was upset that I had to go back for another biopsy. My last biopsy was suppose to be at the 1 year mark unless something went wrong. So March 15 and 16 (yes, it's a 2 day trip this time... don't even get my family started on that...) I go back up, see the doctors and have, what I'm hoping really is this time, my last biopsy.

February 13th marked 1 year for me and I couldn't stop smiling the whole day. To me, making it to 1 year is a HUGE step! So, in true family tradition, we had a 1st Birthday Party for dear Andrew :) So many people came... friends, family, anyone who was in town and we ate and drank and had the best time. Cameron took some pictures but I haven't had a chance to look at them yet. If I find a good one, I'll try and post it on here. I'm still working on getting all of the thank-you notes written for the beautiful gifts people brought... which was not the purpose of the party, but I loved each gift all the same.

Around that time, I also quit my job at Wendy's. I think I've outgrown it at this point. It was great in high school, but I'm ready to get through school and have a real job. Preferably something that isn't so physical would be nice too. After years of dance and all of the surgeries, my body hurts!!

Finally, last week my dad was trying to get Sam (our older dog who has cataracts real bad) back into the house. After he picked the dog up and started walking back, he slipped on some snow/ice in our backyard and fell. I'm guessing his foot got caught on a tree root, but the result was that he broke his right leg down near the ankle. So for the last week and a half I've been driving my dad to work and just trying to help him get around the house. He's on crutches and has an air cast, so he can't put any weight on the right leg... poor Daddy :( He goes back to the ortho the same day that I go back to Cleveland... Don't know how we're going to make that work, but somehow it will just have to happen.

So that's all that's been going on in around here. Nothing too exciting :) I'm going to try and get out here more often but I don't know how my schedule's going to be in the next few months. Cameron and I are still planning on moving in June and I plan on starting classes at UC then as well. Wish me luck!!

Button's Gone!

2010-01-27T11:53:00.002-05:00

So I went to see Dr. Trapnell last Thursday and things are looking good :) My weight is up to 109lbs and my PFT is holding at 65%! yay! So that meant that I could get my g-tube out. I don't think I've ever been so happy in my life! On Monday that's where Dad and I went... to see Dr. J to get my button removed. Now I have a hole in my stomach where it was, but that'll heal over some time. Hopefully by tomorrow I can stop putting the gauze over it to prevent stuff from leaking out. Just think, this summer I could wear a bikini if I want to now... well, ok, maybe not a bikini. I have a few too many scars to make that look pretty :) But maybe I will just on principle now!

On other, rather depressing news, I wasn't accepted back to St. Elizabeth's program. I didn't really get a clear answer as to why, but there ya have it. I have applied to the University of Cincinnati and hopefully they'll take me. We'll see.

2009

2010-01-03T00:34:00.002-05:00

So I thought I'd follow the trend and sumerize 2009 as I saw it.

January didn't hold anything new for me. More IV's, another trip to Cleveland, and growing anticipation for my new lungs to arrive. I remember lots of nights crying myself to sleep because I had to hook myself up to so many machines just to sustain life. All I wanted in life was my second chance.

February came and I had my first shot at my rebirth on the 9th. It wasn't meant to be that night but it sure scared the hell out of everyone involved. Little did we know that the following week would be that life changing event. February 13th at 8pm I went in for surgery and on the 15th I took my first breath on my own with Andrew. It wasn't the amazing movie moment where I gasped in air and everything was better, but it was amazing and I have a picture of me at that moment -- Best. picture. ever.

March I was still having clotting issues which would haunt me for the next couple months. But the best part of that month was the fact that I got to go back home to Cincinnati. I made it to Kelly's dance competitions for the first time in years, cheered her on, and overall just enjoyed life! I also found out that Jessica had passed, which is something that still makes my heart hurt when I think about it.

April I had to go back to Cleveland to be admitted... again... for a yeast infection they found in the liquid they drained from my left lung. Wasn't a bad trip, just long... but switched my antifungal medication around and back home we go :) I was also having a hard time tolerating some of my meds (mostly the CellCept) which were making me so sick! But again, more adjusting to meds and sent on my way.

May marked 3 months post-transplant. We had the CF walk where I was honored by cutting the ribbon to start the walk. I still have the ribbon sitting in my room... now to figure out what to do with it :) I also learned that the fluid around my left lung was back and now required surgery to remove. That was scheduled for June 8th so I could see my sister's dance recital.

June was a hard month. I went back up to Cleveland for my surgery, which was suppose to be laporscopically done, but nope. They had to hope my side up since the liquid had solidified so much. I woke up in more pain than I had when I woke up from tranplant. Of course, the drugs were different, but still... OWW!! I spent all of June battling pain from that procedure. I did make it home though in time for my "Yay Lungs!" party. It was so great to be able to celebrate with everyone... even though I don't remember much since I had so many pain killers in my system.

July wasn't much better. I was still on pain meds, which caused serious constipation, which landed me back in the hospital. Fortunately I was able to be in Cincinnati for that stay. Once I had a good poop though, the pain started to go away. Go figure ;) When I was released from the hospital, Cameron and I went to see Momma Mia, which is fantastic!

August was great! I went to a Red's game with Cameron and our friend Jesse. Walked all the way up to the top seats and didn't even get winded! It was wonderful :) I then made my way up to Columbus to visit my friend Michelle. It was great to go up there without having all of my medical supplies. I then got to go out to dinner with all of my guy friends from WKU for my 25th birthday. On my actual birthday I was sick. I think it was food poisoning from the restaurant we went to, but no one else get sick, so who knows. I then found out that Danny had passed, and that just about broke my heart.

September I started dance classes again. It had been so long since I'd been able to complete a dance class, it felt amazing to do so! I just kept living life to it's fullest :)

October was yet another bump. I went for my appointment at Cleveland to check to make sure the rejection had cleared, and when they did the biopsy, they caused my right lung to collapse. So most of October I spent trying to get that pain under control. Wasn't as bad as the decortication surgery though. I even went back to work at the end of the month. Wendy's :D

November was boring. I don't mean that as a bad thing, I was very happy with boring. I got up, went to work, came home, went to dance, slept and ate. I got to go out the day after thanksgiving for some quality Black Friday shopping. It was great to do it without an O2 tank!!

December was full of Christmas Cheer :) All I can say is that I'm happy to have the holidays without having IVs, without having to worry about being sick, just quality time with family and friends.

That's 2009 in a nutshell... I can only hope that 2010 is even better!!

Andrew's first Thanksgiving

2009-11-30T14:55:00.003-05:00

I know I've gotten really bad about updating my blog. What can I say, it's hard to do when you're busy :) and I like it that way :) but this is my late Thanksgiving entry.

I had today off work and didn't have any appointments, so I spent most of the morning catching up on my fellow CF blogs and forums. So much has happened with them, including a lot of CF deaths. It just hits on a deep level that is hard to describe. There's been a few CFers that have received their lung transplants, which always makes me smile. Then there's one cystic who's blog I've been following, she's #1 on her list right now. Maybe she'll get lungs by Christmas! Reading everyone's transplant journeys makes me remember my whole experience and I can't help but smile. While it was one of the hardest things I've ever done, the rewards I've received after have been wonderful!

It all reminds me of all that I have to be thankful for this year. I'm alive... above and beyond anything else, I AM ALIVE! Truth be told, I wasn't sure I was going to be here this year for Thanksgiving. So I leave this entry with just a simple thanks... Thank you to all of the organ donors (especially mine :) ), to all of the members of CF.com which have given me such support, and most of all, my family. Without them I wouldn't have had the strength to get through this last year.

Yay!!

2009-11-02T14:59:00.002-05:00

So it's been a month since they biopsied and collapsed my right lung. That's all healed and I'm returning to dance tonight. I didn't quite feel up to dancing since I was dealing with the pain in my lung. It wasn't constant, just when I took a deep breath. Ya know, the thing you do when you're dancing and exercising :)

I started working last week. Most of Sunday I spent with my head in the toilet because of an antibiotic I was taking for infiltrates they saw on my xray when I saw Dr. Trapnell. They stopped the antibiotic and I felt much better. Thought I should give work a try since I was scheduled and knew I wasn't contagious. So Monday I went in and tried to work 11-2. I spent most of my shift sitting in the back office because I kept getting light headed and whiting out... not black out, white. I think it was because I was dehydrated from being sick Sunday. I worked again on Tuesday and only had to take one 5 minute break because I felt a little weak. I worked again on Friday and that went much better.

Thursday I was back up in Cleveland for the repeat/9 month bronch. Cleveland does bronchs with biopsies at 3 weeks, 6 weeks, 3 months, 6 months, 9 months, and one year. Then I'm done unless a problem comes up. It was the never ending day... 7:30 started it all with bloodwork, like always, and my bronch was at 3:30. We finally got in the car around 5:30 and didn't get home until 10pm. Dr. Budev did my bronch this time and said that everything looked wonderful but wouldn't be surprised if I had a slight amount of rejection because of my anti-rejection med levels being pretty low. Well, here's the best part. I talked to Cleveland today and everything about the bronch came back negative. So I have to reduce my prednisone and I'm off all of my antibiotics as of tomorrow! yay!

So off to work I go tomorrow for 3 days and then tap on friday :) Life's good again :)

Well, Hell.

2009-10-06T18:30:00.003-04:00

So I've just about had it with my luck. Or maybe I should look at this situation as I should start playing the lottery.

So after my last entry, I continued dance classes. My muscles aren't liking me too much, but oh well. I missed classes on Thursday and Friday because I had to go back up to Cleveland. This time was to have a repeat bronch to check to make sure my rejection had cleared. I still don't have the results of this, but I was rewarded with a hospital stay.

On our way home Friday, after the bronch, I felt a little sore. I figured it was just from the biopsy and got in the car and fell asleep. When Mom and I got home, she woke me up and the pain had gotten worse. Wonderful. So I called the clinic to see what they thought I should do. "Go to your nearest ER and get 2 chest x-rays, you probably have a pneumothorax" Great! So Mom and I get back into the car and go to the Children's Liberty campus. They know me well there now...

Sure enough, the doctor came back in and I have a slight pneumothrorax - collapsed lung in fancy terms. After talking with Cleveland, they decided that best course of action was for me to be admitted for observation and to recheck my xray in the morning. I breathed a sigh of relief because they weren't talking about placing a chest tube... which is what I was expecting. So Saturday afternoon comes, it's time for the xray and I can't sit up in my own bed let alone move to a wheelchair. They had to transport me to xray in my hospital bed. I always feel so embarrassed being transported in my bed, I don't know why, just do. But we got the films and surprise, not only has the pneumothorax worsened, I now have fluid building up on the right lung. Fan-freakin'-tastic!

At that point they decided that they were going to observe me one more night and that they would give me real pain meds, not just a couple of tylenol. So once the morphine kicked in I was able to finally lay on my back. Up until that point the only comfortable position was on my left side. Sunday they made the decision that Cleveland wanted me up there, so transport was being arranged. I had an ambulance take me to Lunken airport, the plane flew me up the 40 minute flight, and then an ambulance from the airport in Cleveland to the hospital.

So now I'm back here at Cleveland Clinic. My blood culture results showed that I have some bacterial infection going on, so I'm back on IV antibiotics. Hopefully I'll be able to get home and away from the germy hospital Thursday, but we'll see. Next week I'll resume dance, I've been tutoring my neighbor after school for homework help, and I'll be starting back at Wendy's. Yes, I said it, I'm going back to Wendy's to work. What can I say, I'm poor and I'm bored and I know the manager will take care of me there! I just have to make under $980 a month and it won't touch my benefits at all.

There's more details, but I'm tired and this is getting long. I think it covers the general idea of what I've gone through this last week. Just gotta keep my head above water for right now! right?!

A little sunshine will do you good

2009-09-16T22:00:00.004-04:00

So this increase in prednisone is killing me! I can't seem to stop eating and it's making my blood sugars so hard to control. Oh well, if a few extra shots means I gain a few extra pounds, so be it. It can only mean that I get this button out quicker, right?

The 9th was Cameron's birthday and we celebrated by going to P.F. Chang's for dinner. We ate so much food but I was still hungry when we left. Go figure. But that was the extent of what we did. We're trying to save our money so we can go to New Mexico to visit his family. I don't know if that's going to happen though with all of the flu things going on, my center is a little timid about me traveling. Especially with my white blood count doing funny things.

My WBC was low when I had all of my blood levels checked Tuesday, so they wanted it re-checked when I went for my yearly labs on Friday. I also had my full yearly PFT that day and my lung function has increased again! I'm now at 67%, which makes me almost tear up since it's been so long since I've seen those numbers and felt this good. To have a test show that makes all of the struggles I've gone through completely worth it. But anyway, the WBC came back a little higher, but they weren't able to do a differential (tell what kind of white blood cells there are) because the sample was too degraded. Lab error. I understand that this can happen, but dammit!! So Cleveland wanted me to repeat my labs Tuesday. I talked to them today and they said that my prograf levels were high and they had wanted me to have all of the blood tests redrawn, not just the CBC, so back to the lab I go on Monday to be poked again. Just what everyone wants to hear :)

Last Thursday Cameron and I were able to get out of the house and go to a play. We saw Sleuth at Playhouse in the Park. It was good, but I don't think I could see it again. The part that made it good was not knowing what was going to happen next so I think it's a see it once kinda of play.

Sunday I went the to renaissance festival with Adrianne and Sherri. I had never been to it before, so it was nice to finally be able to go and do all of that walking. I was tired after, but I like being this kind of tired. It's so much more rewarding than being tired from simply breathing!

And here's the best news : I took my first full dance class in 5 years!! That was Monday night and I was by far the worst in the class... all of my technique has disappeared! The important thing though is that I was there and I wasn't that short of breath and I finished it!! I'm still so sore though!! Back for more classes tomorrow night and then again Friday afternoon. Kelly and I are in the middle of picking out a song to do a duet to, which I'm pumped about!

Oh, and my neighbor's sister's results have all come back negative! It's been a very good week :) Beautiful sunshine and wonderful news all around!

OI!

2009-09-08T23:38:00.001-04:00

So much has happened in the last month. It started out great with being able to go to a Red's game with Cameron and Jesse - a friend from WKU. They lost pretty bad, but I had a blast,even though I ripped my jeans falling on a curb! Cam and I went to his wedding a few months ago and it was great to be able to see him since he lives farther away.

A couple weeks after that I made my first road trip without a ton of medical supplies. It kind of made me giddy to just have a tiny duffle bag :) I went up tp Columbus to visit my friend Michelle. Other than the meds making me feel super sick when I was heading back home, it was a wonderful trip!

Once I got home I repacked for Cleveland for my 6 month visit/bronch/biopsy. I had such nerves going in to that visit but everything went fine during the exam. When I got home my Mom told me that one of my CF friends was sick and on a vent. His name is Danny and had his transplant almost 2 years ago. The following day Cleveland called and told me I was in the early stages of rejection again. Nothing big, just increased my prednisone and I have to go back October 2 for a repeat bronch to make sure it clears.

That Friday my boys came in from WKU and we all went out to dinner at a fancy restaurant. It was so much fun to see all of them (4 guys and me for dinner - kind of interesting) and it reminded me of how much I miss seeing them all the time like I did at school. The bad side to the night was I was home just a few hours after dinner sick in the bathroom. It was either food poisoning or a "gallbladder" attack. I say that in quotes because I no longer have one, but that's what it felt like. I spent the rest of the next day puking and in bed. Oh, did I fail to mention that it was my 25th birthday that day? Happy freaking Birthday! I felt better on Sunday and we celebrated everything then. I was even able to blow out all 25 candles on my cake in one breath - because I GOT NEW LUNGS!! It was awesome :)

Found out recently that my neighbor's sister has breast cancer so please keep her and her family in your prayers. Also, keep Danny's family in your prayers - his funeral was today. That's all I can really talk about those things, it's all still too new, too close, and too painful right now.

That's all of things for now. I should have more next week after a few more doctor appointments, Cameron's birthday and a play. Gotta stay busy and keep my mind off things. I may have to find a job to keep this much off my mind :)

Lots to report in on....

2009-07-24T19:00:00.004-04:00

A lot has happened since June 8th when I had my surgery. I spent a total of 10 days in the hospital after that surgery when they gave me my last dose of pain meds and sent me home. That was on a Wednesday and Thursday morning I woke up in my own bed at home in agony. We ended up taking me to Children's emergency room for pain meds. They got me under control and then transported me to University hospital. If anyone has ever seen my face when I hear about that hospital, you'll know how much I hate it.

I was released on Saturday and arrived back home at 3:10. My "Yay Lungs" party started at 3 that day. It was an amazing party and I'm still trying to write thank you notes to those who attended. We had over 100 people show up - including Dr. Trapnell and his son. It was so touching to see everyone there, even though I was drugged up to the moon at that point. I did well for about a week and then Thursday rolled around again.

I woke up and couldn't get my pain under control again. I went back to Children's ED (They were starting to recognize me at this point - never a good sign) and after much talking, Mom and I drove to Cleveland to let them take care of things. I spent another 10 days there where they started some other drugs that were to help with pain and suggested maybe a nerve block would be the best course of action. My white blood cells were also improving slightly so there was no need for the bone marrow sample (THANK GOD!! I've seen 2 at St. Elizabeth and almost fainted during one... and if anyone knows me well enough knows that I have a sick fascination with surgery/procedure things so for this to get to me, it must be huge!) They got my pain and most of my nausea under control and sent me home. I got home on July 4th just in time to see my neighbors set off fireworks. Awww... fireworks for my homecoming :P

Now this time I only made it to Wednesday and I couldn't stop throwing up. I was taking the pain meds regularly and they caused my GI system to slow down to the point I couldn't take anything by mouth since I was already so full. So back to the Children's ED I go. They gave me pain meds IV again and then put mucomyst through my gtube. Now... For those out there that know, mucomyst is disgusting on it's own being inhaled... but in the gtube... *shudders* it's horrible!! It smells of rotten eggs and if you get the pleasure of getting sick on it, it tastes exactly how you would think it would... horrid. But, it did the trick and I was able to have a good bowel movement. That wasn't enough to make them happy though, so they admitted me and I then had GoLytely pumped into my gtube for the next 2 days. Now I know the general population knows what that is and it's effects. Finally Saturday they allowed me to eat... that grilled cheese and tomato soup and cottage cheese and applesauce never tasted so good in my life! I continued to eat like a little piggy all day Sunday.

Sunday night Cameron and I were able to make it to the last showing of Mamma Mia! which was amazing. We had box seats that were fairly high up and close to the stage. We could see everything and had so much fun! Nothing like cutting close twice with admissions and previously planned events!

Now I'm home and starting to get back to a normal routine. I made dinner the other night, which felt great to be cooking again! Dance classes will be starting up again soon and next week I'm re-joining my gym. They have trainers for free at this gym that help you get started with all of the machines, so that'll be nice. I'm just so excited that this is all behind me and that I can get some good use out of these lungs now!! Watch out world, here I come!!

Tuesday June 16th- weathering another bump

2009-06-16T12:58:00.002-04:00

Hi everyone! It's been a while since I've written on the blog. This is Becky, Jennifer's mom. We are in Cleveland Clinic and have been since June 8th. Actually came in on Sunday evening, for her surgery. She had fluid in the plural area that had gelled, so they originally were going to go in laproscopic and remove it. When they got in, they had to make a bigger incision (about 5-6 inches) and go in, scrape and peel it out of the area. She has been in severe pain and taking iv pain relievers, oral and using a lidocaine patch along with a fentanyl patch. The pain has bee so bad, that it causes her to have nausea, so they are giving her meds. for that also. She had 3 chest tubes, but now is down to 1, and waiting to have that removed. Hopefully, if not today, they can take it out tomorrow. Just speculating, so not sure. They want to do the angiogram to prove that the BAR procedure they did when she had the lung transplant, worked, so that is today, sometime this afternoon. It was supposed to be yesterday, but didn't happen. They also found that her red blood cells aren't producing fast enough or at all and her white blood cells are low. They gave her a shot for the white blood cells yesterday and that has made it normal. The red blood cells, they have called hemotology in to decide what to do about that. They did blood smears, but it just showed they were low. They have discussed doing a bone marrow test, and Jennifer is less than thrilled about that. Still waiting on the hemotology Dr's to come in. This was supposed to be a 3-5 day stay. They didn't know the surgery would be like it was, so that isn't any one's fault. The angiogram being pushed to today, not sure what happened. I think Dr. Budev saw on my face though that I've had enough and so has Jennifer. I went to buy more clothes to get me through the next day or two and hopefully we will go home. In the meantime, Jennifer is sleeping, which is the best thing for her right now. Hopefully, she will be ready for her party on Sat. In the meantime, we're just waiting.....

Biopsy

2009-05-30T08:57:00.001-04:00

The biopsy came back Friday afternoon... no rejection again :) Always nice to have a little bit of sunshine after such crappy news on Wednesday.

15 Weeks Tomorrow

2009-05-28T11:57:00.002-04:00

Tomorrow marks 15 weeks since I've been transplanted. It's weird how it doesn't seem like it's been that long, but at times it feels like it's been forever. Then at the same time, my mind wonders when the transplant is going to happen. Guess it's good that my body doesn't recognize what is going on... it just accepts the new lungs as the old and goes on with living.

I got back from Cleveland again last night. It was my 3 month appointment with a bronchoscopy. It was a fairly good visit. I had a chest CT and Dr. Budev said that my lungs looked "stunning" which of course made Dad and I smile. My kidney function and liver function are both completely normal, which means my body is tolerating the drugs well. The only downside to the drugs is the fact that my hair is thinning, but she said that if I drink knox gel mixed with some OJ that it'll help my overall hair/nails/skin health.

My chest xray and CT both showed that I have fluid around my left lung again. I also had a decrease in my lung function which they've contributed to the fluid. Except, they're thinking it's not really fluid in the liquid sense. Turns out that the fluid has solidified and now requires surgery to remove. I thought I was done with all of this surgery and falling lung function garbage. Oh well, maybe after this one, right? The surgery is tentatively scheduled for the week of June 8. I'll post later with the results of the biopsy - here's hoping that it's negative and there's no rejection :D

All the Results

2009-05-04T19:41:00.002-04:00

So I'm going to backtrack a little here. I forgot to post about my first appointment with Dr. Trapnell since transplant :)

My weight was down (98lbs) since I'd been so sick. The Tuesday before my appointment I spent the afternoon in the ER getting IV fluids and anti-nausea meds. I wasn't even able to keep water down that day... ack! So I got a prescription for dissolvable anti-nausea pills and those helped to at least get my meds and a little bit of food down. Cleveland had also stopped my Cellcept which they think was the culprit. My lung function is still holding at about 63% and I couldn't be happier!!

The following Monday was when I got the phone call from Cleveland saying that they wanted to admit me. I had my bronch on Tuesday, came home Wednesday. On Friday they called and told me that I had (*drum roll*) No Rejection!! Plus, the fluid from my pleural effusion (the fluid around my lung that they tapped) didn't have any signs of yeast yet. Keep your fingers crossed that those results stay the same!! It takes a long time for yeast to grow, so there's still a possibility that it could show up but I've decided that it's not going to grow anymore ;)

I went for my bloodwork today and my white blood count is still climbing - I'm at 4 now. Remember 7-10 is "normal" so I'm half-way there! I should be allowed to go into public without a mask as of Friday (it marks 3 month post-tx) but I may keep it a while longer with that count being so low. But I'm definitely ready to be without that mask and not have people staring so much. Especially right now with the whole swine flu scare stuff. I guess I really SHOULD keep my mask though with all of this going on... Oh well, gotta have SOMETHING to complain about :P

Back Again

2009-04-29T18:23:00.002-04:00

So we had another little bump in the road.

I've been busy getting things together for the CF walk and preparing for my trip to Cleveland on Mother's Day. Well, that trip has been canceled since I just got back from it.

I went for my normal routine blood work on Monday and found out that not only is my white blood count low (2.3 - eek!) but the culture from my last lung tap came back with yeast in it. Great. So Monday night Mom and I drove up to Cleveland and I was admitted to the hospital. Tuesday they went ahead and did my bronch and tapped my lung again. Today (Wednesday) I was discharged since everything is looking great. The only changes I have right now is that they are holding the Cellcept and Valcyte (the Cellcept they think was causing my nausea and vomiting last week and the Valcyte can cause a low white count) and they've changed my antifungal to Voriconizole. I've been on this drug before... it's just a stronger antifungal than the prophylactic one I was on.

I go for more bloodwork here in Cincinnati on Monday to make sure my white blood count is continuing to go up. I should know the results from my bronch by then too. I'll be sure to let everyone know what that all shows as soon as I know :)

Back from Cleveland

2009-04-08T18:39:00.002-04:00

We're back from Cleveland now. I've waited on posting so that I had all of the information from Cleveland to avoid multiple non-coherent posts.

Mom and I left Sunday afternoon and stopped at the outlet malls on the way up. It was a beautiful day and I was able to walk the entire mall!!! Plus, I was able to hold a conversation while doing it - so awesome!! As a reward, I bought myself a new dress and some chocolate :) We then got in the car and finished our trek up to Cleveland. When we got there we ordered Rascal's pizza (which, if any of you remember, is the place that kept my family well fed with wonderful pizza while I was in the hospital... plus delivering beer while I was in surgery - haha!!) and then trying to get some sleep. Mom and I don't share bedrooms easily - I'm a light sleeper and she snores (tee hee)

So Monday we get up and get ready. I was more than ecstatic to be able to get ready in under an hour since I didn't have breathing treatments to do!! Plus, my overnight bag was smaller than Mom's! NO MORE HUGE ROLLING SUITCASE WOO HOO!!!

I had bloodwork at 7:45, got breakfast at the little cafe there (yummy breakfast sandwiches), xray at 9. Mom stayed down in xray and waited for my films to be printed while I went for my pft at 9:30. My pfts are at 63%!!! They haven't been like in almost 10 years! Now if I could just have my weight and muscles be the same, life would be perfect ;)

I met with Dr. Budev and she was very happy with how I am doing. The only issue that she saw was I had a little fluid building up around my left lung again. No big deal, it's normal, but they wanted an ultrasound to see if it needed to be drained again. So on my way to Infectious Disease I had an ultrasound of my back to mark where the fluid was and more bloodwork to check my INR level to see if we could even tap with with the blood thinners. My INR was 2.2, which is therapeutic for treating clots but doesn't work for sticking a needle into my back. They've decided that they're just going to see me back in 3 weeks and deal with the fluid then since I'm still improving and feeling well.

I also had an ultrasound of my arms and all of the clots have resolved except the one near my port. This one has shrunk though and there is good blood flow around it, so they're happy :) and so am I.

I had to go to infectious disease since my old lungs had histoplasmosis (a yeast) and they just want to follow me a while to make sure that the yeast doesn't find it's way back to my new lungs. Being that I live in the Cincinnati area and this yeast is naturally around the river, I run the risk of culturing it again. Being that they know this, I'll just be monitored and they have a plan for treatment should I show symptoms. It's always reassuring to hear that they have a plan before things become an issue than to have them be reactive about things.

Mom and I finally got to the car at around 4:30 and were desperate to find food since we hadn't had lunch yet. With all of the appointments and running, there wasn't time to stop! We managed to find a Skyline just a few minutes from the hospital and got some conies and I got a 3-way potato - YUM!! Poor Mom was trying to drive in rough weather and heavy traffic, so she kind of had to watch me inhale my potato before she got to start her food. I did eventually give her a packet of crackers though... she's lucky she got that being I'm on prednisone and well, you don't mess with food near me when I'm on that stuff! My cheeks will eat your first born before giving up any food :)

So overall, we had a wonderful visit and I got back in about 3 weeks for my bronchoscopy, angiogram (for the BAR study - the extra blood vessel that was attached), and possibly tapping my lung again. I don't have the date yet, but will let everyone know as soon as I do!

Also, I plan on doing Great Strides this year... and actually walking!! It's May 16th and would love for everyone to come and walk with me. I'll see most of you Saturday at the Egg Hunt, so expect to be hit up for a shirt order and a commitment to walk :)

Quick Updates

2009-04-01T12:03:00.002-04:00

So not much to report on, which I'll take :D

I got my blood levels drawn yesterday and my magnesium has fallen, yet again. Right now we're just going to increase my oral Mg intake to 3 times a day. If that doesn't work (they'll re-check the levels Monday at Cleveland) we'll either change magnesium tablets to a different compound or do IV magnesium. No big deal, at least we have a plan.

Cleveland has also decided to cancel the broncoscopy for the time being since I'm on coumadin. It would just be more difficult to admit me in the hospital for the 5 days prior to do the IV heparin to do the bronch and then stay to get my coumadin levels back to where they need to be... sheesh. The alternative would be to switch me to heparin or lovenox injections, but my kidney function isn't where it should be in order for me to have this option.

So Mom and I will leave Sunday night and go up to Cleveland for our appointments on Monday. We'll be home Monday night hopefully by dinner... I know that's wishful thinking, but we'll see :)

Kelly's competition this past weekend went much better than the weekend before. She scored a 1st place with her solo and the group dances scored "ultimate victories" - it was a weird scoring system... but the group dances also placed overall in the age categories! I was so proud of her!!

That's it for now, I'll post again after we get home from Cleveland!

Rough Days

2009-03-26T11:53:00.005-04:00

Is it just me, or is God calling a lot of the CFers back home lately? Every time I log into CF.com anymore there's at least one other post saying someone else has passed.

I found out yesterday that Jessica had passed away. My family met her husband in the ICU waiting area the night I was transplanted, she had received hers that morning. There were a lot of comlications after the surgery and they ended up having the trach her. Come to find out later that she had B. Cepacia which infected the new lungs. She passed away on March 8th.

I've heard of people having survivor's guilt after transplant but I always assumed it was for the donor. I never expected to have such guilt over hearing this news. There's a whole lot of fear attached to all of this too. I'm 6 weeks post tomorrow... Just 6 weeks. It's just hard to think, that could of been me.

On a brighter note, Kelly's competition went well this past weekend. Her team got several overall high scores and she got sterling silver with her solo. Not as good as she wanted it to be, but she did well and we were proud of her. Solos are hard and this is her first year doing them... and it's in lyrical, which in my opinion is the toughest to compete in! She has another competition this weekend, which I will be at again and I'm sure they'll do great like they always do :)

Busy Busy Busy :)

2009-03-20T15:04:00.003-04:00

Over this last week I've been pretty active. No marathons yet, but as soon as my legs are strong enough, watch out!!

Got my INR checked today at the anticoag clinic and they said it was perfect :) 2.2 so they don't need to change my coumadin levels, which makes me happy. Got a call from Cleveland about my other drug levels, they're doing great too! Only thing is one of my white blood cells is a little on the high side so they're increasing one of my meds which will knock that number back down. Glad to hear that they're so on top of things like that :D So there's the boring medical part of all this... on to the fun stuff!!

Sunday was my first outing since I've been home. I did it up big, LOL. Cameron and I went to Smokey Bones for lunch. Apparently, if you walk into a restaurant wearing a mask and want a table for 2, you get seated immediately. hmmmm, maybe this mask isn't such a bad thing :P We then went to Kroger's since I've been craving fruit and dairy. I was able to walk around the store for a good while and when I got to the car... I WASN'T SHORT OF BREATH!!! My legs hurt like I was running, but Andrew was nice and strong still. It was amazing!!

Monday was lab drawl day, so I got poked and then got some yummy McDonald's breakfast :) I spent most of the day on the couch though because my legs were a little fatigued, haha! I did go see Karen Vaske (the angel lady) that afternoon though. Just some theta healing to help with the side effects of all of the drugs. Nausea, tremors, hair thinning - ya know, the fun stuff :) Tuesday was boring, but my legs had recovered.

Wednesday Cameron and I decided to tackle Kenwood mall. I only did the lower level so we could finally get his birthday present. His birthday was in September and I just hadn't felt well enough to go to Fossil with him to pick the watch out. I was able to do that, get some new lotion for my face at Clinique, eat dinner, just overall, be normal. Well, as normal as one can be with a mask on their face that has little multicolored bandaid people on it, LOL!!

Thursday was spent doing some laundry and watching the WKU game later that night - GO TOPS!! and Today I had my clinic visit and then Mom and I went to Target (where I walked the whole store without gasping - BEAUTIFUL!) and then met Caroline, Brian and Moo for lunch at El Caporal. It was very yummy and I was actually able to eat quite a bit which was a nice change. Tonight Aunt Pam, Jerry, Aunt Lois, and Uncle Don are all coming over to watch the X game - Let's hope it's a great game!!

This weekend's Kelly's dance competition so we'll all be busy with that. It'll be nice to be able to go to one and cheer her on :D I'll be sure to update about all of that later on.

HAPPY SPRING!!

Blog Changes

2009-03-14T11:39:00.001-04:00

Yes, I like changing things around on my blog... just wanted to let everyone know that I have changed things around again. :)

Enjoying Home

2009-03-14T11:13:00.002-04:00

I'm back home in Cincinnati for a few weeks until I go back for another surveillance bronch. For right now the family and I are just enjoying being home.

I got the results back from the 1st bronch and showed slight rejection. My nurse said that it's completely normal and laughed saying if I didn't show any they would think I'm weird. We did a 3 day Solumedrol burst followed by a 3 week prednisone taper back to my normal dose.

All the aches and pains are getting better. The worst part of all of the side effects have been the tremors and my hair's thinning a little. Nothing too horrible and I've been told that within 6 months things should stabilize. Plus, if this is what I have to go through to breathe.... totally worth it!

Oh, and the blood clot thing. They think it's from all of the lines I've had placed over the years. My clotting times have always been fine and I've never had any swelling so no one ever thought anything of clots. After my arm swelled so bad (which is now back to normal - YAY!!) they searched and found several clots. I'm just on coumadin now until a few days before procedures and then switching to lovenox until after the procedure then back to coumadin. And it's only for 3 months they're thinking.

Now comes the fun part of regaining muscles... who knew staying in bed for a week would set me back so much in the physical department :D But that's all that going on here. I plan on taking my demon of a dog for walks this week to enjoy the hopefully nice weather. Plus some blood work, a trip to the angel lady (Karen Vaske) and my first visit at the Coumadin clinic. Busy, but easy week :) Hope all's well with everyone else!! It's just good to be home!

Monday Evening-Surprise!!!!

2009-03-09T22:49:00.005-04:00

Hi everyone!
Amazing day! I got to the hospital this morning and the nurse had already told Jennifer that she was being discharged today. The Dr. on the floor came in and said that they were discussing Jennifer in the meeting and said she could go home, but didn't say home, as in hotel, or home, home as in West Chester.
We made a few jokes about it but continued to sit in the room. It was 1:30 and I had not eaten lunch, so decided to go down to the cafeteria to see what special foods they had for today. As I left the wing that Jennifer was in, I ran into KeLynn, the nurse coordinator for the post-transplant and she said we were going home to West Chester. I love that lady! lol She is actually a lovely person and I really do like her, but was thrilled that we were going home. I went downstairs to call Danny, my brother, to let him know that he shouldn't rent a car to come to Cleveland, since we were on our way home! He was in Columbus delivering a load, so told him I would swing by to let him see Jennifer and of course, I wanted to see him too. We spent about 45 minutes to an hour with him, he checked my oil in the car and noticed I was 2 1/2 quarts low. Of course, I got the look over his glasses, like "I thought I taught you better than this" look and said we needed to get oil.

We went to buy oil, we visited for a while and then he had to move down the road to get another load for S. Carolina. We followed him to I-71 and got on the expressway and headed to West Chester. We arrived a little before 9, turning the corner down our street and the whole neighborhood was standing in our driveway all the way into the street. How awesome. I stopped the car at the corner, just shocked, Jennifer and I sat in the car, crying! What an amazing group of friends we have!!!!
There were posters, smiles, hugs and congratulations from everyone.
Jennifer came into the house, afraid to be outside too long. I of course, stood outside talking to everyone and just enjoying everyone being outside and the amazing group of friends and support we have.
So, we've made it back home and so happy to be here. Jack has snubbed Jennifer, but sure he will get over it. Sam has acted like a puppy, turning and running, but can't see. Kelly was crying and excited that we were home, all together again and Ray was just doing his thing, content that we are all home.
We have an appointment on March 24, so she will go back, where they will do the angiogram and not sure if another bronch is part of this or not, but another visit to Dr. Budev. I'm sure that Jennifer and I will sleep well in our own beds tonight. We are beyond thrilled to be home, especially in this wonderful neighborhood with all the wonderful friends that we have. It was truly a moment that we will never forget! And we're HOME!!!!!!
Love to all!
Becky and Jennifer

Lazy Sundays

2009-03-08T22:24:00.003-04:00

It's been rainy all day here in Cleveland - perfect nap weather. Cameron and Daddy left about mid-afternoon and Mom and I hung out in my room working on craft things that we brought. She has a tablecloth she's embroidering and I have an angel cross-stitch that has taken over 4 years to complete. Wouldn't want to rush into things :)

Nothing major to report on with health things right now... finally! My INR (international normalized ratio - measures clotting time) is a little low to come off the IV heparin but they aren't sure what to do right now. Whether to increase the Coumadin or to leave things be so that I would be able to have the angio tomorrow. Dr. Hogan and Dr. Yun both came by today and agreed that it would be better to hold off on the angio right now. There's no hurry, it's just a confirmation that the BAR is working. They are pretty sure it is because they keep saying my recovery has been remarkable - tee hee :) Also my Creatine (measures kidney function) has been creeping up. They aren't worried about it and said actually my function is going in this tidal wave. The ideal number is 1.0 and mine is 1.5 - hopefully as my body gets use to all of the meds things will settle. So with this increase in my creatine, they are even more inclined to hold off on the angio since the dye is filtered through the kidneys.

Right now we're just waiting on the biopsy results to come back and for the selection committee to discuss when I can come home finally. Mom and I are so horribly homesick right now. We talk about our dogs and our comfy couch a lot :) This Friday will mark 4 weeks since I've been here. As much as we love this town, it's about time to get out of here!! Oh well, it's in God's time, right?

Saturday Night

2009-03-07T16:57:00.004-05:00

Dr. Yun came in this afternoon and drained 600cc of fluid off her left lung. Her said the right lung had a small amount of fluid, but wasn't impressive, so he said it was less than before and would eventually absorb into her body. When he numbed her back, that was the part that didn't feel good. We've asked her if she could breathe better, but she said she couldn't tell the difference. The Dr. said that she has done remarkable with the transplant and was impressed. He said that the reason behind the fluid was that when they do the BAR process, they cut through lymphatic system and the extra fluid wouldn't be re-absorbed.
We went outside on the 9th floor and walked around. The sun even came out for the time we were up there. Cameron took pictures of her and her daddy and then her alone. She hates having her pictures taken, but obliged us with a few. lol
I did ask the nurse why she was running a slight fever and she said that it was because she wouldn't get out of bed, so therefore, that is why we walked around. I know she is glad the tapping of the lung is done and over with. She loves her Dr., but really dreaded having the draining process done. He was planning on scheduling the angiogram either Monday or Tuesday and she should be released from the hospital on Wed. Not sure when we see Dr. Budev again, she did say that she would stop by while she was in the hospital. Im sure we need an office visit before getting our walking papers though. So overall, not a bad day. Would rather have nothing going wrong, but this is ok.

Becky and Jennifer

Saturday

2009-03-07T12:16:00.003-05:00

Jennifer is tired today and running a little bit of a temperature. The surgeon is coming in to tap her left lung today, but had to wait 3 hours after the heperin had been stopped. Not sure what the temp. is about, just a little bit, but would rather her not have one at all. Ray is on his way up and should be here within 30 minutes. Cameron came up last night, slept on the pull out here in her room. Kelly is at dance until 4 this afternoon, so she won't be able to come up this weekend. She wants me home, but I just don't want to leave right now, until I'm comfortable with her being here with Ray. Other than that, just a slow day. The weather is warm, 60 degrees, but cloudy and sprinkling, so a good day to sleep. I will post when we have new information. Thanks for everyone posting! It makes me laugh and know that everyone is still here with us!
Love to all!
Becky and Jennifer

Friday Afternoon

2009-03-06T13:45:00.002-05:00

The bronch is over and she's sleeping. She keeps waking up, asking how it went and wants to see the pictures of the bronch. She keeps saying her new lungs are so pink compared to the old ones being a grayish color. The Dr. said that it all went well and it would take three days for the biopsy report to come back to show if there is any rejection. Hopefully, that isn't an issue.
I think he said that her heperin level is good so he can switch her to the cumadin pills later today or tomorrow. That was faster than the original 5 days we were told.
I had talked to Lois last night and found out that there were clotting issues on the Buescher side, told the Dr. and he said that still was ok. Not the issue with Jennifer, but would run the tests to see if she had the same thing with the clotting factor, but still not related to how they are treating the clots here. They said her clots were because of the iv's they had done. Jennifer brought up the point that they don't use heperin to flush the iv's and wondered if that was part of the issue. Good point, but I forgot to ask the Dr. Hopefully, he will be back in and we can bring that up.
She looks great and says she feels like she's sleeping off a hangover. Not sure how she would know that! hehehe
That's all the news I have, so thought I would pass the word along to everyone and will post again when we have something different.
Love to all!
Becky

Thursday afternoon

2009-03-05T13:57:00.002-05:00

The Dr's. came in this afternoon and said they have re-scheduled the bronch for 10am tomorrow. They ran and ultrasound on her legs, but there are not clots there, so that is good. I also need to correct what I wrote last night. She doesn't have a clot in the coroided artery, but the jugular.
They won't get the results back from the clotting tests until probably sometime mid next week.
They will start her on cumaden for at least 3-6 months, unless it comes back that she needs it because of the clotting and then she will be on it for life.
They will check levels on the cumaden and then let her leave the hospital after a day or so.
We always have to have things exciting, don't we? lol
Love to all!
Becky

Thursday

2009-03-05T12:53:00.002-05:00

They canceled the bronch because someone else needed an emergency bronch. I guess they will re-schedule for tomorrow, but the Dr's. haven't come in to tell us anything. They have sent her to vascular maybe for another ultrasound. She was able to eat, so I ran downstairs to get her food and when I came back, she was gone. Will let everyone know what the plan is when they come in to talk to us. Her left arm does look better though, the swelling is significantly less.
Becky

Wednesday Evening-A bump in the road

2009-03-04T21:26:00.002-05:00

Well, we started out late this morning. We were supposed to have bloodwork done at 7:30 and didn't get there until 7:45. Then on to x-ray, pulmonary function tests and then Dr. Budev. We finally made the Dr. appt. an hour later, went through all her meds with the nurse coordinator, let them know her issues she wanted answers to and was getting ready for the Dr. to come in. She came in and said that her xray showed that she had fluid on both lungs, so they wanted an ultrasound of the lungs to show just how much fluid was there. Then also wanted another ultrasound on her right arm, because it was swelling again. She said go have those done and then come back and she would see Jennifer. So we did the ultrasound on her arms first. They wanted on both arms and found that there were new blood clots in both arms now along with the corroided artery, so they called Dr. Budev, who decided to go ahead with the ultrasound on the lungs but would have Jennifer admitted back into the hospital and treat everything. She is still scheduled for the bronchoscopy tomorrow, but it will be 2:00 (ish). They will decide if they need to tap into the lungs and drain the fluid off when they do the bronch. The blood clots, they are doing a heperin iv to make sure the clots don't get any larger and said that the body would absorb them eventually. I certainly hope so. Her magnesium is down, so they are doing a bag of that, iv, and changing the dosage of the anti-rejection drugs to stronger, since the level they watch for in the bloodwork is low. Lots of little tweaking going on.
I am personally very disappointed that we aren't coming home this weekend, but so glad that they caught it now and can take care of this while we're here. I trust Dr. Budev very much and so does Jennifer. She will be in the hospital for a couple days and then will let her come back to the hotel and not sure when we will be allowed to come home. Jennifer is ok with this and that's the important part. The Dr. said that the transplant process is going "excellent", so we'll take that. Hopefully, tomorrow will be wonderful with the bronch and see no other problems and can get the clots under control. They are also checking her clotting through bloodwork, so I feel they are doing everything great and on top of things. Keep her in your prayers!
Love to all!
Becky and Jennifer

Tuesday Afternoon

2009-03-03T13:59:00.003-05:00

Hi everyone! We really are getting pretty boring here, so that's why there aren't any new posts. Jennifer's blood pressure is running high, so we have a call into the post transplant dept., they are checking with Dr Budev to see what they want to do. The high blood pressure is probably because of the drugs she is on, so assuming that they will put her on meds. They asked if we were monitoring her salt intake, but reminded them she was a cystic fibrosis patient and needed her salt and she agreed.
We go to see the Dr. and do xrays and bloodwork tomorrow at 7:30, but should be done by 10 or so. That will be our first venture out. Jennifer feels guilty because we haven't been out walking, but it's freezing here. She keeps sending me out for food and waits patiently.
She seems to not be feeling the prednisone as much either. I thought that would make her eat mucho food, but she hasn't too much. She did eat well on Sunday, but then her sugar ran high because she had a milkshake. We will find a happy medium soon, I hope. We will post more tomorrow after we talk with the Dr. She's always so upbeat, it will be good to get reassurance that we are doing what we should be and she is doing fine.
Love to all!
Becky and Jennifer

Sunday Evening

2009-03-01T18:22:00.002-05:00

Well, Jennifer and I are sitting here alone. Very quiet, compared to the weekend we just had. Ray and Kelly left, then Cameron, then Adrianne and Sherri, then Michelle, girlfriends of Jennifer's. We have switched rooms also. The suite we were in was so cold near the door and kitchen and hotter than blazes in the upstairs, so we switched to a studio room. It felt much better when we came in, but as the day as turned into night, it's cold too. I think it's just Cleveland though. That's ok. Still one of my favorite towns now! hehehe
Jennifer and I have caught up on phone calls to people we have promised to call and I have played this game on her computer that I am completely addicted to.
Now Jennifer is sleeping, trying to catch up on some long needed rest. She is doing well, breathing better than I can't even remember when, and smiles every time someone talks to her about going through the transplant and how much color she has. She isn't hardly coughing and that is a brand new thing for us. I think I cough more than she ever did. lol
So tonight, just a quiet evening, resting,watching tv and trying to get the thermostat on a good temperature.
Love to all!
Becky and Jennifer

Saturday

2009-02-28T09:07:00.002-05:00

Well, we're here in the hotel and Friday was just the day we needed to catch up on much needed sleep and rest. Jennifer sat on the computer, catching up on other cf friends, watching tv, eating, and doing all her new drugs. She truly has this down. She has her cell phone alarm set for the times she has to take her meds. I was a little worried about her blood pressure when we checked on Thursday night, but showed more normal yesterday. That is a side effect of one of the drugs she is on. Hopefully, things will even out and no more high blood pressures.
Cameron made it here last night first. He was so excited to see her and she was him. Ray and Kelly came in after. Ray went straight to Jennifer and by-passed me. Typical! lol Kelly came in and I was so excited to see her! I was tormenting her, smelling her hair, but was just to have her here and all of us in one place, even though it's just for the weekend. Ray finally came back to tell me hello. I know he's worried about his baby, and I certainly understand. It's hard for him to leave and not being able to see her every night.
Jennifer wanted Chinese for dinner last night and had shrimp mango and crab rangoons. She ate all but one of the crab rangoons and most of her dinner. It's so good to see her like to eat again, not just because she has to.
We have a home care nurse coming between 12 aand 1 today to just make sure she's doing ok.
After that 2 girlfiends have driven up here to visit, so I think Ray, Kelly and I will leave and go somewhere to give them time to visit. I need Kelly time too. hehehe
Jennifer has an appt with the pulmonologist on Wed. We have to be there at 7:30 for bloodwork, I think an xray and then the visit to Dr. Budev. On Thursday, is the bronch. where they will take a biopsy to make sure she isn't in rejection. Im sure that day will be a rough one. Even if she is in rejection, they can up the steriods or put her on a couple days of iv's and hopefully stop that, so that will be nice. I hope things are going well and we can go home. If not, then we will stay another week or so. Time will tell!
Love to all!
Becky and Jennifer

Thursday Evening

2009-02-26T21:17:00.002-05:00

Jennifer was finally released from the hospital today! yeah!!!! The fluid is still in the bottom of the lungs, but the Dr's. feel that her body will absorb the fluid once it realizes it shouldn't be there. We are staying at a Residence Inn, south of Cleveland. We have a suite, but had to go up 2 flights of stairs, which was questionable, but Jennifer did ok, with a rest at the landing of the first flight.
I walked beside her, holding her waist and hips, but stopped when she wanted to. We finally made it into the room. It is so nice! Has a living area with tv, gas fireplace, kitchen with table and 4 chairs, frig., stove, dishwasher and microwave. The bedroom on the main floor is where Jennifer will stay. it has a bathroom off the bedroom., and then a bedroom upstairs in the loft with a bathroom there also. There's tv's in each bedroom and living room, with a pull out bed in the couch. The people here are so nice. The manager knows that Jennifer is a lung transplant patient from Cleveland Clinic. She said her twin sister had 3 pacemakers placed from there over the years and she said that is the reason that her sister is alive today. They have said they will clean the room however we want, either with bleach or natural products. It was fine the way it is. Just so nice to see that people really care and are willing to do whatever need be, for another person.
Teresa came up yesterday and stayed and lead us to the hotel this afternoon. She said I was a slow driver. I told her the bumps didn't do well with Jennifer so had to drive slower. We are usually racing on the expressway with each other, so I'm sure she was wondering what happened to me. lol Especially after being in the rear on the way up on Friday, the 13th, heading to get the transplant. She never caught up, but was close!
Jennifer seems ok being out of the hospital, but know she is somewhat afraid. We sat and sorted through her pills tonight before dinner, did her blood pressure, spirometer, but haven't weighed her. The blood pressure cuff runs on 4 AA batteries, but that wasn't told to us. Fortunately, I had the batteries for that, but the scale runs on a 9 volt, so I have to go out for that.
The home care nurse is scheduled to visit here on Saturday, unless they have a cancellation and then she will come on Friday.
This journey is so incredible! Jennifer's not ready to run any marathons yet, but is improving
each day. Her legs are weak, but that will improve with the walking and doing a little exercise. There's very few times I've been speechless in my life, but am in such awe over how well she has done and how intelligent and caring the people are at Cleveland Clinic. We couldn't have asked for better care!
Ray, Cameron, and some of Jennifer's girlfriends are coming up this weekend to visit with her. That will be nice for her. I hope that Kelly comes also. It would be so nice to be a family again, if only for the weekend. She is a typical teenager though and not sure what her social calendar has on it. She wants me to come home this weekend, but still new for all of us with Jennifer being out of the hospital and just don't feel overly comfortable leaving her yet. Things will be back to somewhat a normal life again soon.
We will update everyone after a night of good rest!
Love to all!
Becky and Jennifer

Wednesday Afternoon

2009-02-25T14:18:00.002-05:00

Ok, so Im packed for the most part and Jennifer wanted to have her hair washed before we left. They don't have a shower chair or anything to sit on, so we used the room chair. I took the shower head and washed her hair and conditioned it. I looked down and my feet and the bottom part of my jeans are completely soaked. I wanted to moved to the other side, so I could finish rinsing, but slipped and she was splashed in the face. (It really was an accident lol)
Anyway, after doing that, the Dr. on the floor came in and said she had some bad news. She was looking at the floor afraid to tell me, but said we can't let you go today and I see you're already packed, but there is a little fluid on the bottom of the right lung, so they want her to stay overnight and be rechecked tomorrow with an x-ray again. If it's still there, they will probably drain the fluid and then maybe discharge her. I can take this news and was fine. Jennifer was fine also. She said at least they found it before we left, which is true.
They've always said we will have bumps in the road and we are prepared for them. If this is a bump, we can certainly accept this, after all, not so horrible. Now if it was going home to West Chester, we may feel different. lol
So, not the day we wanted, but we're ok for another night in the hospital. I feel good they are monitoring her this close and know she is relieved also.
We'll let you know when things change.
Love to all!
Becky and Jennifer

Tuesday morning

2009-02-24T11:00:00.002-05:00

Well, we made it through the bronchoscopy with flying colors! They said it looks wonderful. Yeah!!!!!! She slept all day yesterday, but had been up most of the night worrying about the bronch, so i'm glad she slept. I thought about getting into the chocolates. She couldn't stop me, right? lol Just kdding.
The Dr. on the floor came in this morning and told her she was doing well, her blood count is back up, the potassium is in normal range (it was high) and the kidney function is going back down.
We haven't seen the pulmonologists today, but they are planning on releasing Jennifer probably tomorrow. she still has to have an angiogram, so they said they will try to schedule in the morning and then release her in the afternoon as long as everything goes well.
Then she will see Dr. Budev, the pulmonary transplant Dr., in a week, so next Wed. or Thurs., have a bronchoscopy where they will do a biopsy of the new lungs, and if that looks well, they will release her to go home to West Chester by that Friday. It could possibly be the next Friday, which is ok too. As long as she's ok, I don't want to rush things. We are both looking forward to being home with Ray, Kelly and Cameron though. Back to a normal family life, only much better!!!!!
They keep giving her percocet for pain management, but it knocks her out, they want her to walk....doesn't mix. We will walk this afternoon though, maybe after lunch. She ordered Rascals pizza last night. Had half an Italian hoagie, so still has the other half and a salad left to eat, but did well. They have lost her menu she made out for today's food, so she's not happy about that. After all, the prednisone is kicking in. My arm might start looking good to her. lol
Her weight is still climbing. Hoping it's actual good weight gain. They said it's not ALL fluid, so I know at least she weighs more than she did. She is close to high school weight and that was great.
The Infectious disease Dr. came in and is deciding what to do about her coming in on antibiotics pre-transplant. Whether she needs to continue or not, but said it really is more the donors lungs than hers at this point. We will get an answer on that sometime before leaving, Im assuming.
She is so happy to be able to breathe normally. Just to see the smile on her face, the color back in her cheeks and the pink in her nails! What more could a mother ask for?
We love reading everyone's comments. It sure makes us smile and know how much she is loved, so keep them coming.
We can't get on facebook at the hospital, because the have a block on that here, so don't think we're ignoring you. We will hopefully be able to get on when we get to our residence in Cleveland after hospital dismissal.
Love to all!
Becky

Full Weekend

2009-02-22T16:32:00.003-05:00

So the results from the arm ultrasound are back... I have an old blood clot in my elbow, but since it's old and I've had major surgery, they aren't going to treat it. The only treatment they would give would have been blood thinners.... and that's just not going to work. They said not to worry because old clots are tough things which more or less just cling to the wall of the vein and don't do anything. That's the good part of ultrasound. The bad part... I had to go for an ultrasound of my legs looking for new and active clots. They took me down early Saturday morning. When I got to the table I started to cough a little.

I'm still learning the way these new lungs work. And there was a little mucous in the lungs... so I figure, no big deal, right? Nope... huge deal. These lungs don't like the share. I was able to move he secretion, but couldn't get it out. In fact, I did worse... I moved it higher in the airway so I couldn't breathe in. I was terrified. They almost had to call a code blue (pulmonary distress/emergency) but a doc was walking by. What a blessing because it was Saturday morning :) No one works at a hospital on the weekend! I was finally able to move things on my own and have been better moving the gunk, but man.... I knew this wasn't going to be easy, but I never thought I'd be that scared from coughing after surgery!! Great news though... no clots in my legs!

Lois and Don came and I got to spend some time with them, which was nice! They brought be a couple boxes of chocolate which I have yet to open because I don't want to have to share with my Mom... I don't know if many of you know this, but she has a major sweet tooth!!

Teresa, Ron and Trent also came and that was so much fun. I went for walks while they were both here and my second walk was that much better!!! I made it up to the 9th floor and was able to look around the Cleveland from the windows. It was wonderful! I also got some of the best news ever today....

I should be discharged from the hospital within the week. Thursday most likely.... could possibly be Wednesday. Then, I have a week or 2 here for all sorts of lab work and education followed by HOME! In about 3 weeks I should be back in Cincinnati! WOO HOO!! Let the partying begin :)

Friday Evening

2009-02-20T17:45:00.003-05:00

Hi everyone. This has been a busy day, so we haven't had time to do any postings. They took Jennifer down for an ultrasound of her left arm. It's still very swollen, more than the right one, so they wanted to check for any additional blood clots. That was this morning, the pulmonologist team came in and said there were old clots there,(they are assuming it is from the many picc lines she has had, but no new ones, so that was a good thing. I had asked if there was an old one, could it break away and cause issues for her. They've reassured us that it won't. they were talking about doing heparin shots for 6 months just to keep things from being a problem, but after consulting the surgeon and going to pathology to discuss with the Dr. the old lungs, they are only doing the shots until she gets up and really starts moving. They found blood in the old lungs, but thought it was because she would cough up blood on occasion and it was probably left from the last time she was sick. They are doing an ultrasound on her leg in the morning, just to double check and make sure things are good.
She's doing very well today, getting up and going to the bathroom on her own, sitting in the recliner to eat her food. She said she's very thirsty but we're assuming it's because of being on lasix an draining all the fluid off her body. She's not eating a lot, but think it's more an issue of swallowing and it hurting in her chest, than it is the food itself. She is also very tired today, but every time she gets into bed to sleep, someone comes in. Just like a hospital, isn't it? lol
We're looking forward to our visitors this weekend. Ray is bringing my car back, Lois and Don are coming and then bringing Ray back home and Teresa, Ron and Trent are coming, provided there isn't a lot of snow.
Teresa and Joe sent me a cooler stocked with beer, water and diet mountain dew, and then a storage box of snacks, everything imaginable. I'll be as big as the house when I get home, but at least happy! lol
Hope everyone has a good weekend and we will post again as soon as we have new info.
Love to all!
Becky

It's me :)

2009-02-19T17:01:00.002-05:00

Mom said I should write... so I'm going to try to give a little of my perspective here.

My hands are swollen like little microwaved marshmellows, I bruise so easy and can be knocked off balance by a sneeze from someone else. All of this should return back to normal soon. I'm hoping as I start walking the halls more that I'll slowly regain my strength.

My pain is like wearing a really bad bra that I can't take off. My skin feels very tight where the incision is on my sternum and also where the 2 top remaining chest tubes are. They bottom 2 tubes have been removed and I have two stitches instead.

We've had communication issues on the floor here, but the overall care is good. If people would just do as I asked, life would be good :) Hope all is well back home. I miss you all and we'll have to have a big 'ol party when I get back!! Love you!

Thursday Afternoon

2009-02-19T16:40:00.002-05:00

We finally have met the surgeon that did Jennifer's lung transplant, Dr. Merthy and Dr. Yan, whom we have seen every day since the surgery. Dr. Merthy was standing here talking and we asked about possibly getting pictures of her lungs. He said maybe pathology would have some. He made a comment that her lungs looked like Friday the 13th, the movie. He said they were filled with infection and had to be very careful taking them out of her, so there wasn't anything spilled into her body. Then he said that there was a blood clot on top of the heart in one of the arteries that was getting ready to go into her old lungs. He said that when they took the suction out, it was there, with scar tissue over it, showing it was old and probably from her old port. It was at least the size of a quarter or larger. He said that would have caused a major problem. Yeah, I'm sure it would have and glad it didn't. Just such a scary thought. Apparently, the transplant was none too soon.
They have removed the 2 peripheral iv's from her hands and have accessed her port, they are planning on removing the catheter at midnight tonight and hopefully she can pee on her own when she gets up in the morning. They have changed the blake tube containers to little balls, similar to the home pumps she used to do her iv's in. She is overall feeling much better. The fluid is draining well from the right side of the blake tube, the fluid in her body seems like it is going down, other than the left hand and arm. They are going to do an ultrasound to see if there is any other clot that would be in the arm or on that side of her body. The Dr. had said they will do a bronch and angiogram before she leaves and is thinking sometime early next week. They are putting her on more solid food, but so far that hasn't been changed by the Dr. because she keeps getting liquids. I think that is from the resident. She didn't know how to order emla cream to access her port, so it took her 4 hours, until Ray and I went out there and stood at the desk, spelling the cream for her and finally it came up. I guess I will have to spell S O L I D also. hehehe She is eating a cinnamon and raisin bagel and drinking a sprite and that has been good.
That's all the news I have for now. I hope there isn't anything else relating to a blood clot the next time. she is supposed to walk but no one has come in to try to help her. I guess I'll find someone for that also. Ray and Cameron left today for home. They should be home by 6. I think he needs some normalcy and I know Kelly does.

New Picture

2009-02-19T14:06:00.003-05:00

Here's a new picture for everyone. She's sitting up!

Wednesday Evening

2009-02-18T21:31:00.004-05:00

Jennifer has had a pretty good day. Nothing like last night with the pain. She made a comment today about how swollen she is. She said she looked like a "pink peep". Quite the character.
She is actually as I sit typing, having a massage for her neck and back. The massage therapist is actually rubbing her feet, (which if anyone knows Jennifer at all) that's funny. She hates anyone touching her feet, but was willing to try it to stop the archness in her back and neck. She has eaten jello, drank broth, iced tea and lemon ice and cranberry juice. She said that they all tasted good, better than ice chips. I don't know, but she probably won't be quite as picky with her food anymore, since she hasn't eaten in almost a week. I think anything will taste good. she wanted fries and a coke from McDonalds yesterday, but thought maybe that wouldn't be a wise move. Good call, don't you think? We were sitting here right around 6 or so, and Jennifer noticed that her gown was becoming wet Jennifer thought that it was her chest tube that had come loose, I thought it may have been her catheter leaking. I called the nurse, but there were 3 emergencies on the floor, so we really weren't top priority. The nurse finally came in, looking a little frazzled They had to send a couple patients back to icu. she checked Jennifer, who was right about it being her chest tube. It had come apart at the connection that laid on her stomach and was leaking. So the nurse came in, put it back together, taped it and went back to the other crisis'. Overall, if that's all we have to deal with today, it was a pretty good day. Im thinking in the next day or so, you'll have Jennifer writing on her blog again. It will be nice to hear firsthand from her again. We have been so blessed with family and friends that have prayed and been concerned for Jennifer. I can never tell you what it has meant to us! Thank you from the bottom of all our hearts!
Ray, Becky, Jennifer, Kelly and Cameron

Wednesday-a calmer day

2009-02-18T10:48:00.004-05:00

Today seems to be a better day than yesterday. Jennifer has a tray of jello, juice, hot tea and broth in front of her. She ate some of the jello and drank a little of the juice, but asked her dad to bring her a small iced tea from the cafeteria. she would rather have cold tea than hot, so didn't think that would be a big deal, if that's what she wants. She's back on the oxygen, but watching her breathe as she is sleeping, and doing much better, taking bigger, deeper breaths. That helps us as much as it helps her. They gave her morphine last night in addition to the pain pump, so hopefully that will be a big help. They think they can get her a recliner also, so know that will help when they get her up to sit up. They only have 5 recliners on the floor and I guess once you get one, you don't want to let it out of the room. There is a patient that is leaving at 1 today from the floor, so the PCA said she knew she could get one, just didn't know exactly when. That's good enough for me!
Please keep the prayers going and comments. Jennifer loves to hear from everyone. She hasn't felt well enough to talk to everyone on the phone, but sure that will change again in a couple of days.
Love to all!
Becky

The pain becomes reality

2009-02-17T20:29:00.003-05:00

Tonight's not a great night for Jennifer as far as pain goes. The nurse had her up in a chair for about 30 minutes and I think that was a little too long. She is hitting her pain med. button on a regular basis. I just think it's all caught up to her. She's still doing great, just alert and realizing how bad this hurts. Hopefully, in a couple of days things will start to even out. She loves hearing what everyone has said on the comment section. It usually makes her smile. I wanted to get a picture of her sitting in the chair, but she looked at me with the "I don't think so" look, so Cameron wouldn't take it. Maybe in a day or so, we can post more pictures. Talk to everyone soon!
Becky

2009-02-17T09:14:00.003-05:00

Well, we have finally moved to a regular room. She is having trouble today with pain. Her body is achy, neck is hurting, you can only imagine. I have read her all the comments from everyone and that put a smile on her face! Now, the healing begins. She still has 2 "blake" tubes, not sure if that's how you spell it, but smaller tubes than chest tubes, but similar. She wants to sit up in a chair and hoping that will help her body to stop hurting. Her arms, hands, and feet are swollen, so think they will give her lasix today and that may help the hurting feeling. We are in J-building, Wing 2 of the 8th floor, room 1. Now if you can figure that out, you're pretty smart! hehehe
She isn't allowed anything that would hold dust in the room. A friend of Jen and Cameron's, Evan, came last night with artificial flowers in a vase and they said she couldn't have them. He brought in the vase though. A whole new thought process! Her telephone # in he room is 216-636-4300. Someone will be with her, so it's ok to call and if she's awake and feeeling ok, I'm sure she'd love to hear from everyone! Thank you for all the continued prayers and concerns! You all will never know how much it means to our entire family!
Love to all!
Becky

Settling In

2009-02-16T16:58:00.002-05:00

Jen was moved out of the ICU and is now happily sleeping in a normal (without tons of noises, nurses, and crazy medical stuff happening all around her) room. Everything seems more calm and relaxed, and she seems to be much more comfortable.

I'm probably thinking all of this because we have finally exited the mayhem of the ICU.

I have a feeling that Jen may be the one posting from here on out, so thank you again and forever for your support and prayers. Your comments and responses did wonders.

Standing Tall (sitting sleepy)

2009-02-16T13:11:00.000-05:00

Jen is now out of bed and is sitting up in a chair. She's alert, but sleepy and nodding off frequently. She had two more chest tubes removed, and while I wasn't in the room for it, Jen said that it didn't hurt as bad as she thought it would. There are only two smaller drainage tubes remaining and from what I understand those will stay in for a while. The docs would like to move her from the ICU today to a regular room, so we're waiting for a room to open up and for her to become stable enough to move. Overall things are going great. we'll keep you posted. Thanks again for all your responses and prayers.

Transplant (With A Smile)

2009-02-15T21:14:00.006-05:00

We are all thrilled that Jen is off the ventilator. She's awake and talking and says she feels good. We are catching her up on all the things that have happened while she was asleep. She as always more concerned with our comfort than hers. We just finished eating dinner and we're headed back to continue visiting with her. We just thought you'd like to see her.

The ventilator is out!!!!!

2009-02-15T18:07:00.002-05:00

We let Jennifer rest because she was getting so anxious about the tube in her throat. She has a very sensitive gag reflex and it was really beginning to show! She fell asleep for an hour or so and then the nurse woke her up to start the whole process over again with removing the ventilator. Ray had gone back and was with her and I decided to walk back to check on her. She was awake and started gagging and thought she was throwing up. I went to get the nurse, the therapist came along with the Dr. that assisted in the surgery and they noticed that she had an air leak in the tube, plus the tube was larger than should have been, but used it for the bronch they performed. Anyway, they pulled it and put her on oxygen and she's smiling and trying to talk, but she can only whisper for now. She's actually very happy, like the rest of us. Another hurdle accomplished!!!!!

Jennifer and the vent

2009-02-15T11:32:00.002-05:00

Hi everyone! It was a long day yesterday. We all took turns going back to see Jennifer, talking to her, holding her hand, rubbing her hair, you know all the things that probably irritate the hell out of her! lol She is doing wonderful! The color is coming back into her face, which helps me and everyone else that sees her. We hardly slept at all Friday night and Sat. morning. Then was ready to get a hotel room, take a shower and lay down for a little bit, when the Drs had come in and then decided to try taking her off the vent. That's certainly not the normal that soon, but the medical people all said she was doing so well, they were going to try. They backed the pain and sedative drugs down and she started becoming a little more alert. She was breathing fairly well, but the more she came off the drugs, the more "panicky" she became. She has this huge vent tube down her throat and has to control her breathing through this tube. We were coaching her, telling her to calm down, breathe slowly, etc. She was doing well but the panic set in and I think she had a full blown panic attack, so they started her sedative and pain med. back up, started back up on the vent with the air and it made her go back into a deeper sleep.
That was excruciating to watch as parents. Afterwards, we left, once we realized she was ok and sleeping and went to get a hotel, take a shower, get some food and then check back with her again before we finally said goodnight. Cameron slept in the icu waiting room, wanting to be neaar her. Ray of course, had to come back and check one more time before he could relax and sleep.
Today, we were in there visiting and once again, they are backing down the meds and trying to get her off the vent. They want to take this slow, reminding us we're not in a hurry, which I so know, and then said they were taking 2 chest tubes out and the iv in her neck. That was great news! They decided if we would agree, for us not to be in there when they are trying to get her off the vent. They said it's hard on the family to watch, which is SO true!
So, were in the waiting room, waiting......
Becky

2009-02-14T07:22:00.003-05:00

We went to see Jennifer in recovery. She looked pale still, the nurse said that was very normal. She was breathing normal, instead of the short belly breathing. That was so cool to see. They have her on a paralytic so she can't move and pull the ventilator out, but she was moving her legs and arms and nodded when I spoke to her. She didn't open her eyes though. As soon as I told her she was ok and doing great, she would quit moving. The nurse said that they would have her use a c-pap and if she did ok with that, they would take her off the ventilator, starting sometime after 6pm or so. That was her worst feer, waking up on the ventilator. Hopefully things will move along at a good speed and she can start to recover. I will let you know when we have some new information.

Becky

In recovery

2009-02-14T04:06:00.003-05:00

The receptionist called from the icu and said that Jennifer is back, they are cleaning her up and we could call in 30 minutes to come back and see her. She said she looked great! I love those encouraging words!

When the Dr. called and spoke to Ray he said there are 3 things to be concerned about. The bleeding, oozing, fear of rejection and her body has been through alot, so how strong she is to fight and heal. She is a fighter, so hopefully things will go smoothly for her. She sure has a cheering section all over the United States!!!!

We will continue to update once we have a chance to see her. Thanks for the continued prayers! That has gotten us this far and she still has a long road ahead.

Becky (Jennifer's mom)

Still in the OR

2009-02-14T02:34:00.002-05:00

It's about 2:30am. Jen is still in the OR, but we heard from the DR about 30 mins ago, and he said he was finishing up the transplant. I'm sure he'll want to talk with us after it's finished to give us the run down on how everything went. I'll keep everyone posted.

Jen is in the OR, the wait is over, the wait begins

2009-02-13T19:56:00.003-05:00

This is Cameron, Jen's boyfriend. The waiting is over. She got the call for lungs around 11:30am. I drove back from work and Ray (Dad) did as well. We met Caroline (neighbor) and Teresa (aunt) and her Mom at the house and left. Our friend, Michelle, met us on the way up, and her sister, Kelly, is also came. They allowed us to drive instead of flying which gave everyone a little more time to breathe. She sent out a text message to some of her friends, and apparently one of the numbers was wrong. A guy messaged her back asking who she was. After she figured out she had the wrong number, he said she sounded cute and asked her how old she was. She replied that she was married. We laughed about that all day. After a long (mileage) and quick (speed) trip to Cleveland, Jen was admitted to the OR at 7:30pm. We found out the lungs were in good shape about an hour ago, and we were with her waiting until she left for the surgery. She was in EXCELLENT spirits, cracking jokes with whole time. Minutes before she left she had a typical bout of coughing, looked at her Dad and said, "It's ok, I'm going to go cough up a lung now." She will be in surgery for the next 8-12 hours. If I get any updates throughout the surgery, I'll post them here.

IVs yet again

2009-02-11T23:26:00.002-05:00

Just a quick little blip about what's going on at home right now.

Most of our nerves have settled since "the call," but we still jump a bit when the phone rings.

I've gone back on IV antibiotics. My cough was incredibly croupy and I overall just wasn't feeling well. I also have been using my O2 more, but that was something Dr. Budev had told me to do anyway. Being on IVs will not change my chances of receiving my transplant. If the lungs are available, I still get them. What it does change is my post-op care. They want to make sure that I'm on the drugs afterward to make sure I'm clear of infection. While I'll have new lungs, I still keep some of my old airways. Sinuses, throat, and a small portion of the bronchi. They all still have CF and the mucous that comes with it... don't want those things ruining those beautiful lungs I'm about to receive :D

I'm as ready as I'm going to be for all of this... so if it's going to happen, it needs to happen soon!

Oh, and update on Garren - He's doing great, is now able to eat and is down to 2 chest tubes. He has a slight upper respiratory infection so they're waiting on that to clear. He should be able to go home on Friday or Monday though. I can't wait for this little man to start living life!

And That's What We Call A "Dry Run"

2009-02-07T03:05:00.003-05:00

Ok, so not really a TRUE dry-run, but close.

It's 3am Saturday, February 7th. Just a couple of hours ago I got the call that I've wished for/dreaded. Mike from Cleveland called... sheesh! I picked up the phone, saw the caller ID and immediately sat down. I was all ready to yell at whoever was calling. In hindsight, I'm glad I didn't pick up the phone yelling :) I'm guessing so was he, haha!

He said he had lungs and was 97% sure that they were going to be mine. He'd run a bunch of tests and it was a great match. There were a few tests left and he'd do those while I got my things together. Time wasn't an issue for this pair and he told us he was going to have us drive up. It made things a little more easy going. I said a little... it was still chaotic! I went to wake Mom up and then decided I desperately needed a shower. Poor Kelly stood in her room and stared at her bed saying "I just don't know what to do!" - She's had a tough few days, but she did get her driver's license today (AAAAAAHHHHHHHHHH!!!!!! So SCARY!!!) And then I called Cameron to tell him to come back over so we could all drive together.

I got in the shower and washed my hair and shaved my legs - 2 things that should have been done a while ago - and a million things passed through my head. It's amazing what you think of in times like this. "I still need to return that DVD from Christmas" "I haven't finished my cross-stitch yet!" "It's too early, I still need more time to prepare" "I wonder if Dr. Budev got all of my paperwork from the fax" "But I have a dentist appointment Monday" "Guess I won't have to call Dr. Trapnell about IVs on Monday".... and the list goes on. I sat in the bathtub and said a quick prayer and placed everything in God's hands. As I tried to figure out what clothes I was going to wear, Cleveland called back. The lungs weren't good enough. Apparently Cleveland is INCREDIBLY picky about accepting lungs, and I couldn't be happier for it. They called me back before I had too much time invested in the anxiety. We had made a few phone calls. A couple aunts and my neighbor. So Mom sat and called them all back, letting them know it just isn't time yet.

Caroline came over and sat with us for a while. It was a while before any of our heart rates had returned to some "non-stroke" range of normal. Finally my eyes are getting heavy again, my body tired, and it is time for me to lay here and attempt to get sleep.

Garren

2009-02-04T00:23:00.003-05:00

Garren is a young boy with CF. 7 years old to be specific. For being so young, this kid has been through more than I have. For a while now he's been having some serious trouble and last July he was listed for a double lung transplant.

For children, the allocation system is different. It's the old system. The crappy system. I think I heard it best when someone referred to it as the delicatessen system. Take your number and wait. Complete garbage if you ask me. Don't we all deserve to get lungs when we need them the most?! Luckily, this boy did.

As of 2:30AM February 2nd, he has new lungs. And as of tonight, he's already gone on 3 small walks on the unit. Granted, one of those walks was only 50 feet, but seriously, the lungs have been in there for less than 24 hours!

I'm writing this to ask whoever is reading this to please say a prayer for him and his family tonight. That his recovery continue to be as speedy and smooth. Also, to pray for his donor's family. For as great as it is that Garren has received his second chance... we all know what has to happen. God Bless you G-Man, you are quite the amazing kiddo!

Got Spoons?

2009-01-31T01:14:00.006-05:00

So as most of my friends, neighbors and Mom know by now, I've been doing a lot of online reading. Mostly blogs and message boards. Mostly about transplant experiences. I've seen multiple people's scars, learned of their struggles before transplant, wiped tears from my eyes as I read about their recovery, and had this strange mix of jealousy and eagerness as they talk about life after transplant. It's funny, the more I read about it and talk to people... the more I want it.

Even after reading about horrible experiences people have had during their recovery - bad hallucinations, extreme pain, early rejection battles, etc. - I want this. Even if it's just a month of easy breathing... it has to be better than where I'm at. Right now I live a life of waiting on the sidelines. I'm a spectator in my own life and I'm just sick of it. Which brings me to the "Spoon Theory." It's a concept that's been around for a while but was brought back to my attention after reading a fellow CFers blog. She brought her life into the theory and I thought I would do the same. For those not familiar with the theory, check here

For those who are lazy (tee hee), I'll sum it up quick. A girl with Lupus goes out to dinner with a friend who wants to know what it's like to have Lupus. Quickly the girl gathers all of the available spoons in the diner and hands them to her friend. She then explains that everything during the day that the friend did cost the friend a spoon. From showering to getting dressed to walking to her car to eating her dinner or even skipping a meal... each cost a spoon. By the end of the day, the friend was down to one spoon and began to realize that all parts of life is a planned choice.

So on to me. I've noticed over the last few years, the number of spoons that I start with in the morning has slowly declined. For arguments sake, I'm going to assign numbers... but who really knows :) When I was at my healthiest, I think I was about 15 years old. It was before the yeast, before the bad pneumonia which took so much, before I quit seriously dancing. I think at that point in my life I had about 20 spoons. Maybe what happened was instead of borrowing from "tomorrow", I borrowed them from 10 years in the future.... oh well...

But each year took more and more spoons away from me. And these weren't just "spent" spoons, these were "lost" spoons. I think in comparison, I have maybe 10 spoons now. Here's a small peak into a typical day for me...

I get up in the morning (some days I get dressed, some days I take a shower. You can tell how well I'm feeling by these 2 things alone.), unhook from my machines (BiPAP, tube feeds, turn oxygen off... it's a small production) and I go down stairs. -1 spoon unless I shower and dress, then -3. But on average, it's just -1.
Now I do a breathing treatment. While I know this helps me, it's one of the hardest things I do of the day. It's a conundrum. I need to cough so that I can clear my lungs and breathe better, but in order to clear them I cough so hard that I can't breathe. -2 spoons for having to prepare and do treatments.
I eat lunch and try to make a decision on what to eat. If I did a good feed at night, I'm not hungry until late in the afternoon. If I did a smaller feed I'm hungrier earlier, but again... another spoon is lost to make the additional meal. It's a balancing act. So most days I don't eat breakfast or if I do, it's a yogurt cup. So there's another spoon. Unless it's a large or heavy meal... then it's -2. and with CF, they're always telling us to eat large and calorie dense food. Great, but the more full I am the harder it is for me to breathe, the larger the meal, the harder for me to finish. So, on average, -2 spoons for eating. I'm down to 5 spoons left and it's only about 3 in the afternoon.
Sometimes I can take a nap and conserve energy, most of the time I lay around and watch bad TV reruns and wait for dinner. But let's not forget the afternoon breathing treatment. -1 spoon ( it's not as hard as the first one in the morning)
The rest of my family gets home and it's time for dinner. They usually do all of the work - preparing the meal, setting the table, doing the dishes - and I just sit and watch and wait. -1 spoon for dinner.
Then comes the sitting around the TV, sometimes sitting on the computer, very lazy , relaxing activities which allow me to conserve my energy for the rest of the night.
When I'm tired, but not too tired, I finally make it up the stairs, and prepare my nightly machines. I pour formula for my tube feeding, I put fresh water into my oxygen humidifier, more water goes into my BiPAP machine, do my nightly pills, and my final breathing treatment. - 2 spoons. This leaves me with one spoons for the night... just in case I have a coughing fit in the middle of the night, or a bout of insomnia. Let's not forget the mid-night bathroom run which requires unhooking from my machines and then re-hooking when I get back to bed. Heaven forbid that more than one of those things happen!

Just like the girls with Lupus, some days I may wake up feeling good. My chest doesn't feel so heavy, I'm not so congested. I slept great the night before and I have the strength to strap on the O2 and get my butt out into the world of the living. I have "extra" spoons that day that don't cost me spoons from tomorrow. There are other days I wake up and I don't have as many spoons. Those days I don't eat as well and I require a lot more care. I need someone to set up my night machines, I need someone to prepare my meals. But I'm lucky. I don't and WON'T need someone to bathe me or dress me. I may have given up a lot during my transplant journey, but won't sick to the point of being an invalid. I have to keep moving, I need to keep moving. If I can push myself now when I can't breathe, pushing myself when it feels like I've been run over with semi, but taking deep beautiful breaths, should be cake... right?

First Appointment While Being Listed

2009-01-15T01:59:00.001-05:00

On Monday Mom and I left for Cleveland. Every 2 months until I get transplanted the clinic wants to check in on me and update my status. I also need to notify them of any changes because that can alter my position on the list.

So Tuesday morning I began the routine of bloodwork, chest xray and then PFT. My FEV1 is holding steady at 24%, I gained a few feet on the 6 minute walk but am on oxygen all the time now, xray looked the same as last time, and all of my other organs are working well. Dr Budev was very pleased with all of that and said that I'm in the perfect position to be transplanted. I need to try my hardest to keep the lung function that I have and work my body as much as possible. By doing this I should be able to recover easier and overall, do better. The only thing she'd really like is for me to gain a few more pounds... but that isn't anything new to my life. I gain one pound, they wanted 4.... but she is happy that I'm at least maintaining my weight.

Tuesday was my first day wearing oxygen out in public. I figured what better place to not get funny looks. I'm able to come off of the O2 sometimes when I'm just sitting on the couch, but any movement causes my sats to drop and on goes the nasal cannula. It's just so hard to hide an oxygen tank or condenser when walking around the grocery store.

Anyway, I signed some papers for some research studies. One is for Tcell something... I can't remember. The only they asked is that they wanted to take an extra vial of blood when I get bloodwork done there and that if there's any left, some of my BAL fluid during bronchs. I figure, it doesn't change anything that I'm doing and it helps them, why wouldn't I sign?! The second one is for a new procedure with the transplant. I haven't mailed the form back in, but I think I'm going to do it. Right now at Cleveland, they only connect 1 of the 2 blood vessels that feed the lungs. It's an easier procedure and there's less risk since you're only connecting one blood vessel to another, not 2. Dr. Petterson is from Denmark and has been connecting the 2nd vessel over there for a while and wanted to incorp. his process in at Cleveland, but needs approval. They've seen quicker recovery time and better longevity with attaching both vessels, but it comes with the risk of the vessel detaching and hemorrhaging. Overall the risk isn't that much more than the current procedure. I dunno. I guess if I'm willing to take such a big leap of faith with the transplant in general, this is just a little step. Dr. Budev feels strongly that connecting both vessels will become standard protocol at Cleveland in a couple of years when they have their research completed.

She also said that she thought I would get transplanted soon. They've already done 6 (I think... long day, I can't remember exactly) and she said she would expect in the next 2 months. I got the green light to go back to school and work as a Medical Technologist after tx and I got the OK to reconsider the pill instead of getting my tubes tied just yet. I just wasn't ready for that mentally.

We then got in the car and attempted to come home... yes, I said attempted. There was limited visibility on the road due to snow and then Mom's car started acting strange. We got off the highway and found an autozone. They did a free diagnostic test and sent us to a Superlube to get the car worked on. While these people were a little strange, they were kind enough to get the car in and fixed in under an hour. Mom had to give them a little more info about me than I cared to share... but I had to sit in the waiting area doing my IV vancomycin.... we were already beyond personal in my book. I explained to them why I was doing IVs and going to Cleveland when I live in Cincinnati. Turns out they had a guy who worked there a few years back who has CF. He got sick this time every year and had to take 2-3 weeks off work (Gee... wonder what he was doing ) It was just a strange coincidence. Out of all the places we could have gone to, we ended up at one where people knew what CF was. Well, a couple of them. One of them asked if I was sick because of smoking. I should have said yes... maybe have deterred some of those men from continuing their nasty habit.

Ok, so my meds are all done and I'm beat. All the IVs and benadryl and treatments and traveling... I can't wait for Tuesday to come and for me to be finished!

Routine Doctor Visit

2008-12-23T22:38:00.002-05:00

Had a regular appointment with Dr. Trapnell today. Nothing big to really report on.

I'm up 4 1/2 pounds since August and my lung function is about the same, which is good. My goal is to gain more weight and try to avoid as much of the crap that's going around as possible. I also will be starting full time oxygen, but that's to help me be able to function better. Last, they changed my BiPAP levels so hopefully I won't burp as much during the night.

That's all that happened. Have a Merry Christmas everyone!!

The List

2008-12-12T17:02:00.002-05:00

So I think this was the most nerve wrecking day of my life. I got the call from KJ saying that they needed my emergency contact numbers so that she could place me today. As of 2:30pm on 12/12, I am active on the transplant list in Cleveland. I have taken my anti-anxiety med and I think it's working... but I still have my heart skip a beat every now-and-then. Now the really hard part begins.... the waiting!

Cleveland News and Then Some

2008-12-01T15:31:00.002-05:00

Wow, I've been so busy lately that I didn't realize that I hadn't posted a blog in a few weeks!

I went to see the Wizard of Oz on stage. It was AMAZING... but I'm a sucker for the Wizard It's always been one of my favorite stories. They had a real ToTo and everything! Just my Mom, sister and I went to see it and had a great time. It's not often that I get Kelly away from her friends - haha!

That Friday I was officially sick. I couldn't get off of my O2 without my sats dropping into the low 80s. So I got to break in the new port with 3 IV antibiotics. By Monday I was feeling a little better and was able to step off of the O2 for a while.

Tuesday I left for Cleveland for my last appointment before they presented me. 4 hours driving up for a 20 minute ENT appointment to drive 4 hours back... all in one day. WHEW! But the ENT said everything looked good and didn't see any major risk of my sinuses infecting my new lungs. A definite relief

Thanksgiving was great. We only celebrated with my Aunt, uncle and one cousin, but it was relaxing and nice. I didn't do shopping the day after Thanksgiving like I normally do... just not enough spunk this year to get up at 5am to be in a crowd of germy people. I think the idea of transplant has made me into a slight germaphobe

I had a sleep study last night which was to titrate my BiPAP... I wasn't allowed to use my nasal pillows and had to use the nasal mask. The bridge of my nose is so sore right now... But I should be getting my BiPAP machine soon. I liked it when I was in the hospital (maybe I should say tolerated... not so much liked) and I feel like it will benefit me.

FINALLY... I was presented at the Lung Transplant Selection Committee and Cleveland has approved for me to get a double lung transplant. Ohio is a little goofy and requires cases be sent to a consortium but Cleveland said it's a formality for them. So basically, I will be on the list in 3-10 days, depending on how quick the state moves. I think I'm still in shock a little.

It feels like all of this is just happening so quickly, but I think I'm ready to take that next step in getting on with my life. Everything has been put on hold for too long now and it will be nice to just be able to do for myself!!

New Port

2008-11-19T12:52:00.004-05:00

So I had my old port replaced last Thursday and recovery has been going well. It's still tender to touch, but nothing too bad. If I know I'm going to be moving my arm a lot, I just take a tylenol before hand and I'm good to go!

I got to see the Wizard of Oz last night at the Aronoff... it was wonderful! Mom, Kelly and I all went and we had a great time.

My next thing on my list is I have my post-op exam on Monday and then I go back to Cleveland to see their ENT folks on Tuesday - eek!! Wish me luck!!

Home Again Home Again....

2008-11-11T15:39:00.001-05:00

So yesterday was the eternal day at Cleveland... AH!

Mom and I drove up there Sunday night and stayed at this beautiful hotel. It was a little on the pricey side, but that's what we get for waiting until last minute to book the reservations, right? haha.

So Monday started at 8:05 with bloodwork as usual. Followed by a chest CT and x-ray. I then had the opportunity to meet with one of the surgeons who was very nice. He explained the surgery and the risks, which I mostly knew about at this point. He did explain that who does my surgery depends on who's available (obviously) and that will determine which incision I have. 2 of the surgeons do the clamshell (basically follows the underwire line of a bra in a "w" shape) and the other does the one straight down the middle of the chest. If I had my choice, I would rather have the clamshell for aesthetic purposes

We then had a needed break for lunch which I picked at my food. I never eat well when I'm there, too many nerves! Then we were off to get my echo done. I had one done a while ago here in Cincy and it revealed a small hole in my heart. They said this was normal and most people have one and that it shouldn't cause any trouble. Cleveland wanted it to be repeated. They thought the hole was a little larger than what they like so they wanted another look. Everything looked good and the hole looked smaller this time, so that's one more thing checked off the list

I then did my pft and met with the pulmonologist. Dr. Budev was AMAZING! I asked a bunch of questions and she had answers. She decided that I am in the window of transplant, but I'm on the very healthy side which is where they want me to be. I will go back to Cleveland on the 25th to see the ENT folks and then be presented before the tx board on Dec. 1st!!! She sees no problem with listing me. Ohio has a state board that transplants have to be approved before, but for Cleveland it's more of a formality. Cleveland does the 2nd largest amount of transplants per year in the US, so experience kind of says it all to Ohio So I will most likely be on the list by mid-December!

We also talked about the fertility issue. She strongly advised against me having my eggs harvested because of the hormones that you need to take prior. It an cause really bad pulmonary side effects, so besides the fact that I don't think I can financially afford it. However, she said that if I chose to adopt, she would be my advocate and support me every step of the way. Not the exact answer I wanted, but glad to know that I have someone who would support my other options.

And that's Cleveland for ya! I gotta go get ready for my trainer! I'll be sure to post more when I know anything!!

Home from the Hospital

2008-11-07T07:22:00.002-05:00

I was admitted into the hospital on 10/14. Nothing major, just I knew I was getting sick and figured I could get my testing for Cleveland completed. I needed to have a pH probe, an esophagram, and a right heart cathaterization

pH Probe: Not too bad. It was a small flexable wire that was guided up my nose and down my throat. Once it was placed it was just annoying. It kind of felt like I had a popcorn kernel stuck on the back of my throat. Those results came back within the normal range for acid reflux, so yay for me!
Esophagram: This was to replace the esophageal w/ Manometry that I wasn't able to complete last July. It's basically an upper GI. I drank this chalky drink which was flavored a chocolate flavor (I love going to a Children's hospital!) and that made it tolerable. It showed that I had a slow emptying time for my stomach (which we already knew) but that everything flowed in the right direction and had good movement.
Right Heart Cath: This one wasn't that pleasent. It wasn't hard though... I was asleep for it! They instered a cathater into my femoral artory and vein and guided it up to my heart. While in the heart, they take internal blood pressures from the right side of the heart. These numbers can indicate how severe the lung disease is. Mine is slightly elevated indicating I have lung disease (surprise!) and these numbers will give me my placement on the transplant list. The downside to this test was the massive bruise that I had on my right inner thigh and the soreness from having to lie flat for so long.

I had my yearly appointment recently. I've talked to my CF doc and transplant docs about having kids post-transplant. None of them were too happy about that idea, but said that if I wanted there was the option of serrogacy. I brought it up to my GYN and she gave me some info on it. How they harvest the eggs and such. She also said that since they don't want me to get pregnant that I may want to consider getting my tubes tied. Pills are frowned upon because the horomones can play with the medication post-tx. An IUD is a foreign object and could potentially stimulate my immune system which is not good post-tx. It could cause complications and rejection of the lungs. Then there's barrier methods but my doc said that they are really only 85% effective. So have a few options on sterilization, but eek. I never thought I'd be sitting here at 24 years old and considering this. My other option is to wait and have my husband (when that day comes) get a vastectomy.

I don't know. A lot to think about... but I go back to Cleveland on Monday, so I can talk to the doctor then and see what they think. I have a sleep study tomorrow though, so I'll be busy for the next few days!

Back from Cleveland

2008-09-18T12:28:00.002-04:00

So Mom, Cameron and I are all back.

After the power was knocked out Sunday night, it was good to get to leave. Just wish it was for better reasons, like a vacation to the Bahamas :) We took a bunch of our food to Teresa's though, so at least everything wasn't lost.

I've waited awhile for me to post about Cleveland because things were up in the air. I think I understand where I stand now... so here it goes...

Cleveland was just like the last time. Get there, blood work, chest x-ray, meet with the social worker again (she's now signed off on me, I'm mentally stable and ready to go through with transplant, haha), and then I met with Infectious Disease. Since CFers grow a lot of stuff, I've been meeting with people from ID for the last several years now. Nothing new was said by then, other than they were surprised that one of my bacteria was sensitive to Doxycycline. I guess it typically isn't, so I guess I can be thankful for that. Then I met with the pulmonologist. After reading my PFT, he stated that at this time I was too healthy for a transplant since I had a slight improvement from my last PFT.

I felt like the rug had been pulled out from under me. I had spent the last 3 months getting myself ready to tell them I was ready to get the transplant now only to have them tell me it's not time. Why can't we be ready at the same time?! The doctor then told me that they would discuss me at the next meeting, but I wouldn't be placed on the list until I was "presented" at one of these meetings. The meetings are held every Monday.

Now they've had the meeting (after much drama) and have decided that it would be best for me to continue with the testing. I have to do a barium swallow (replaces the esophogeal w/ manometry), I have to do the pH study but there's 2 options there (bravo or a small probe that goes up my nose and down my throat - both icky), and I have to have a right heart catheterization which is the test that will give me my placement on the list.

I will return to Cleveland in November and hopefully that'll be the time that they decide to list me. I just want to be listed and have that part of the waiting over with.

I'll keep ya posted

Doctor's Appointment

2008-09-13T10:19:00.003-04:00

I had my appointment yesterday and things went well.

I am officially at 106lbs and my PFTs were up just a little. I'm sitting at 24% now. I also got the news that I don't have to go back to University for my admissions... I can go to Children's without jumping through a million hoops :)

Tuesday's still there scaring me a little... just nerves from having to go to Cleveland. I thought it would get better each time I go up there, but it's just as bad (if not worse) as the first time I went.

*sigh*... I'll let you all know how everything goes!

Just the basics

2008-09-08T15:42:00.002-04:00

Still on IVs, at least until I see the doctor on Friday. I go to Cleveland again next Tuesday, which I'm getting a little nervous about. Just the thought of going through all of this... it's just scary.

I'm at about 106 lbs now, which is so great. I finally broke that 105 mark!! 112 here I come!!!

Changes

2008-09-02T10:07:00.002-04:00

So endocrine has increased my insulin. I think I'm actually gaining more weight now, which is great!

I also had more antibiotics added. I had some symptoms flair up on Thursday, so we're crossing our fingers right now. I think things are working well since I am feeling much better.

Anyway, need to make this short, gotta go to the trainers!

Things are Improving

2008-08-24T17:59:00.002-04:00

I'm finally off the oxygen! I feel OK, still not 100%, but I think I just need to let the IVs work now. Obviously they're doing something if my saturations are coming back up!

My blood sugars are a little off lately. Sounds like they're going to be changing my insulin around. Hopefully this will allow me to gain some weight finally! Keep your fingers crossed!!

Bad day

2008-08-20T17:44:00.002-04:00

I've been having bad days lately. I have just overall been more congested and have watched my oxygen saturations fall. A normal person's sats hang around 97 or above, mine without oxygen is 80-85. Not good. I'm now on oxygen during the day as well as during the night.

I also started IVs Tuesday night. One is the Tobramycin again, which is what effects my magnesium. *crosses fingers* last time was ok, so let's hope this one will be too!

As soon as I'm doing better, I'll be sure to post again.

Evaulation Testing

2008-08-18T19:11:00.003-04:00

So I began the testing needed to continue with Cleveland. I wasn't sure at the time whether or not I wanted to be listed, but figured I should still keep going in case I did want to. It's a lot harder to get on the list than to be taken off.

I ended up in the hospital just 3 days after I returned from Cleveland. My white blood count was at 31! Normal ranges from 7-10, give or take a few and my normal runs about 13. So while I was in, we asked for them to run as many of the tests as they could. I had the following completed:

Sinus CT - very simple, just lie in one position and keep still.
VQ Scan - Lie very still and inhale the radioactively tagged mist. Then they inject a dye through an IV and again, lie very still. Simple and easy.
Abdominal ultrasound - Lie and have them move the wand around your abdomen. The only hard part I think came with the technician. She was a little hard in pushing the wand into me and it hurt a little. But really not that bad.
Echocardiogram - They did this with the bubble study. The echo was really neat in itself. I had never had one of these and it showed my heart beating in real time. It was a little awkward sitting there with my chest bare though. The bubble study was the hard part. They weren't able to use my port (too much tension in the line) so they had to place a peripheral IV. They withdraw some blood and agitate it to create some bubbles and then push the blood back in. They watch the monitor and it looks a little like snow coming through (really cool!!) but they look for holes in the heart. Turns out I have a small hole in my heart, but they said it was common and that it wouldn't interfere with transplant.

I also had my vaccinations made up to date which included having Hepatitis A administered. I had already completed the B series.

When I was discharged I continued with the rest of the testing. The remainder consisted of:

EKG - place the stickers and sit there for 3 minutes. Cake.
Gastric emptying study - Eat an egg sandwich which has a radioactive tag ( I felt like I could glow in the dark by this point) and have x-rays taken at various time intervals. Mine didn't empty quick enough at first, but finally did (Just in time too!)
Dental Clearance - My dentist took x-rays and told me that I'm in good dental health :)
I was able to skip the mammogram since I'm only 23... but they had it scheduled at first.
Esophageal w/ manometry and pH study - This one so far has been a "no-go". I have too strong of a gag reflex to be able to have the probes placed and they are unable to sedate me because the manometry is meant to measure muscle tension. Sedation would cause my muscles to relax and give false results. I'll be sure to change this if I ever am able to complete this check. Right now we're seeking approval to have other results serve as a substitute.

I also have a few other tests - DEXA, pap smear, etc. which are coming up with my yearly checks anyway. I return to Cleveland on Sept. 16th when I will tell them I am ready to go on the list. I'll be sure to write about how that goes!

Welcome to Cleveland

2008-08-15T11:54:00.008-04:00

So after my doctor wrote my letter of introduction to Cleveland, they scheduled my appointment for June 17th.

A few days later, my itinerary arrived and ... wow. I was expecting a full day, but wow, not that full! My day started at 7:05 and my last appointment started at 2:30.

My mom, Cameron (my boyfriend) and I all drove up the night before and stayed in a hotel... um, it was tiny, but I guess it worked. I was on IVs at the time and it just... I dunno. IVs in a hotel just doesn't sit well with me. Too icky!

We woke at 5:30am, got ready and left the hotel at 6:30am. I had managed to forget my power cables for my airway clearance at home (last time I try to pack everything in about 20 minutes... sheesh) so I had Cameron do CPTs on me. Nothing like asking your boyfriend to beat you, lol! We arrived at the hospital at 7, just in time to stand in a huge line for the lab. That was my first appointment, bloodwork!

After they took what felt like all of my blood (about 16 tubes), I went upstairs for my Pulmonary Function Test (PFT). This wasn't the normal kind that I do in the clinic at home, this was the full PFT which they do once a year. It included 3 kinds of tests done on a machine that I blew into, followed by an albuterol treatment, and then repeating the tests. Most CF patients are familiar with this routine. Then we did a 6 minute walk. They put me on oxygen before we even started the test. They said they did that for everyone so they wouldn't have to stop during the test to put the oxygen on if I needed it. I guess I understand, but I still didn't care for having that nasal cannula on.

I was told before I went that no matter how much I disliked something, do not argue with how Cleveland did something unless I felt that it would be detrimental to my health. To understand that they do things differently and that I could ask questions, but that I needed to be as compliant as possible. I feel being compliant is something they hold over your head as a CFer. "You better do as I say or I won't recommend you for transplant if you need one!" kind of threat. I've always been very compliant... very inquisitive, but compliant. And stubborn, but that's just a family trait :)

Anyway, continuing with the day... Next stop was for a chest CT, really easy. The ones that I've done in Cincinnati were kind of difficult. A lot of "take a deep breath in and hold your breath" followed by "exhale completely and hold your breath out." I don't remember a lot of that with their CT process, which was just fine for me! Then I had your standard chest x-ray. Nothing too exciting there.

After those tests were finished, we got lunch at a cafe there, which was really good! Then back up to the offices to meet with an insurance specialist. There wasn't much for her to tell me since I'm under my parent's insurance still and they had agreed to give me full coverage for the transplant. I even get a travel and living expense allowance! Then I met with the social worker. She administered the psychological evaluation to make sure I was stable enough to go through the process and that I had a good support system in place for after the surgery. Both of which were not a problem. Especially with the support system -- being a close-knit catholic family does have it's perks sometimes!

Finally, I got to meet some of the transplant team! First, the pre-transplant coordinator/nurse came in and gave me a brief introduction of how the Cleveland Clinic works, their statistics, what to expect from transplant, etc. Next, I met with Dr. Olbrych. He was absolutely wonderful and finalized my confidence in the center. He didn't sugar coat anything, but with something as serious as a lung transplant, I don't think things should be anything but straight forward. He asked me if I was told I had to have the surgery tomorrow, would I do it? I told him no. Because of that answer, my case was not sent to the board to be placed on the list. Instead, I was to return in 3 months to be re-evaluated.

In the meantime, I should continue to go through with the other tests required to tests my other organ systems, which is what I've been up to....

The ugly "T" word

2008-08-13T18:57:00.005-04:00

I will never forget standing at St. Elizabeth's ambulance parking talking to my mom and hearing her say "Dr. Trapnell wants to discuss lung transplant with you. He's upset that you haven't had this conversation yet."

At the time he wasn't my doctor and my only thought was "How DARE he bring up such a horrible thing!" I knew my health had declined over the past few years, but as most thought I guess, that I would be OK still. I figured that if I needed a transplant that my doctor at the time would have brought it up by now. 1 month later, I switched doctors so that Dr. Trapnell was my CF doctor and have never regretted that decision once. In fact, once I knew that he would take me as a patient, I didn't even have to hesitate to have all of my stuff transferred to him.

He brought it up in the kindest way, saying that he doesn't think that I NEED it right now, but that he thinks I will in the future. That's the time when you need to undergo all of the evaluations and get on the list. So many people are on the list and wait and wait and wait... and end up that they waited too long to be placed on the list and don't make it to surgery. We talked about it again a few times after that (I see him on a fairly regular basis at this point) and finally in April, I decided I was willing to continue with the process. That decision was a tough one for me. Not because I don't want to live, but because I was afraid of dieing during surgery, or worse... soon after surgery from complications. I know all too many people who either didn't make it to transplant or died from complications. Each complication being unique.

June 17. That's the day that I made my first appearance at the Cleveland Clinic in Ohio....