Oh wow, this is hard work!

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!

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

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

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

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!