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!!

Andrew's first Thanksgiving

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!!

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.

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?!