Life After Transplant, So Far
Posted on April 11, 2014
Hello everybody. I know it’s been a while, but I have had to do a lot of healing and having family time lately. A lot has happened since I last blogged about my experiences. Lets see… I got my transplant, and then I told you all about it. But what I didn’t really talk about was when I went to see my lungs in person afterwards. I got to hold them, poke them, squeeze them, scold them, thank them and then say goodbye to them. They fought a good fight. I thought for sure I would be mad at them, but when I saw them I was more happy that those crappy looking pieces of body laying on the slab in front of me had given me about 15 good years, and then pushed as hard as they could for as long as they could, which was about 3 years. I knew I was walking around with sick, bad lungs, but when I saw them I was amazed. My mom said she knew I was sick, but she didn’t know it was that bad. I said “When I said my chest hurts, I wasn’t lying.” I had this thought to myself do you see it now? because whenever I told them about my chest hurting they kind of had this attitude like I was being a baby, or exaggerating.
When I finally got out on March 28 we checked into the Ronald McDonald House and tried to settle in. It’s different, it’s very nice and I really only have good things to say about it, except the walls are way too thin. I can hear my neighbors breathe. Okay, so it’s not THAT bad, but I can pretty much hear all of their conversations, and I’m sure they can hear ours. The next day, so Saturday, March 29, my best friend Claire came to visit and we went shopping! I walked around that day more than I have in the past three years put together. I didn’t cough once! It was absolutely, awesomely amazing! We went to the Vans store and I tried on shorts. Here’s something you don’t know about me, I RARELY wear shorts, because one, I hate being cold, and I am always cold, and two they never fit right. They can fit okay on the waist but then the legs stick out all funny. I hate it, but anyways, I tried the shorts on, and for the first time in my life I put on shorts straight from the store (not taken in or anything) and they fit perfectly. I am heavier! Then when she went home I went and got my hair done. A lot of you have probably seen it on my broadcasts, but if you haven’t it’s short with bangs and red… It’s great!
So I have been going to the doctors almost everyday, except the weekends. It’s really a hassle, but in the end it’s worth it to be able to walk around and do the things I want to do. I went to the doctors a little less than a week after I got out, and did my first ever PFT with my new lungs. If you don’t know what a PFT is you can read about it here. But anyways… My PFTs had gotten to 18% lung function. That is extremely low. I was barely breathing and had what they call “nasal flaring” which is basically your body trying to get the air in anyway it can, so when you inhale your nose flares. My point is, when I went last week my PFTs had improved to 78%!! That’s insane. Normal range, NOT for transplant patients but normal people, is 80% and up. Well, I went back this week and they are 84%!!
And the PFTs feel so different. Before, I would inhale as deep as I could, and then I would blow out as hard and fast as I can. It could take up to 10 seconds for me to keep blowing out. The reason for that is there is so much air trapped in the lungs because the mucus is blocking it’s pathway. Same way as I couldn’t breathe in very well, because all the airways (well, not ALL of them) are blocked with mucus. Now, when I do them I can’t breathe out for more than like 3 or 4 seconds at the most. It’s insanely different.
I am officially off of all pain medicine, I have been for about a week. It’s tough, but I’m tough. (: Not really. Haha. In the beginning I was so energetic and I was like “GO GO GO!” but now, I think I used it all up and I get tired pretty easily. I don’t like it. And on top of it I can’t really get any sleep. Like 5 hours on average every night.