Oh My...

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

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

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

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

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!

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

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

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!

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

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!!