Recap: About Me-Part III

Picking off from: Recap About Me--Part II (Previous Post)

So right before I left the hospital, my CF doctor came to my room to talk to my Mother and me. I kind of had an idea of what it would be about, but didn't want to think about it. My doctor felt that I needed to be listed for a lung transplant; that there was no "bouncing back" from this and a transplant would be the only option to save my life. I denied it of course, went home, and concentrated on finishing up the school year. By the grace of God, I finished up most of the remaining school year at home, and graduated as Valedictorian with a 4.12 GPA. Graduation night was tough and not very fun. As soon as it was over, I went home, aching for the O2.

As I realized I was not getting better, I began to pray and ask God, was this what needed to be done? I cried and fought with him, hoping there was another way. I kept asking him, why me, why now? I then realized that a transplant was the only thing that was going to save my life, and God would get me through this. I immediately jumped on the decision and got evaluated and listed at the University of Alabama at Birmingham. Because I had been listed as a pediatric patient (see previous post), I had already accumulated about 2 years worth of time on the list. The thought was that I would get transplanted sooner than later, and everything would be fine.

However, that was not God's plan. I waited and waited for lungs to come along (and I actually was #1 on the list very quickly after being listed; however I have the 2nd rarest blood type and was very petite, necessitating small lungs). I prayed every day. I also started doing several independent bible studies. I wanted to be prepared and needed some comfort during this rough time. After I got listed, I really never worried about the transplant. I knew there was a possibility that I would not survive the transplant, or die shortly after. However, I had a peace about it, and was more anxious to get it over with than anything. I knew I was in God's hands, and he was in control.

My health remained stable (as stable as it could be) until about January of 2004. At this time, it definitely took a turn for the worst. I went in the hospital in late January of that year. I spent about 2 weeks in, getting the usual IV abx, PT, high calorie foods, etc. I also spent my b'day in the hospital, but had 3 surprise parties that day by different people. It was truly a fun and blessed day. I hadn't really felt any better as I was nearing the 14-day stay. I fudged a little and told everyone I was ready to go home. At this point, I did not do PFT's (lung function tests), because I was to sick. So there was no "measuring" to see if I was well enough to be discharged. I knew I probably needed to stay, but ached to spend just a few days at home, in my own bed, for possibly the last time.

So my theory came true, and I ended up back in the hospital 2 days later, in a much much worse condition. I was getting 12 liters of oxygen, albuterol aerosols every 2 hours, morphine aerosols, constant antibiotic medications, and medications to relive pain and anxiety. I knew it was serious, and knew if I didn't get a transplant soon, I would be in trouble. I don't think I realized how soon this needed to happen, as the next 1-2 weeks of events flew by very quick. I got worse pretty much every day. There may have been a day or two where I stabilized, but not much. I was only getting a couple of hours of sleep at this time, and at times, was so "out of it" I had no idea what was going on.

Because no cadaver lungs had become available, my parents discussed with my CF doctor and one from the UAB transplant team about considering a living donor transplant. Everyone decided to go ahead and prepare for a living donor transplant, but with hopes it would not come to that. I knew that they had talked about it, and many people started stepping up to be tested. But deep down, I kept thinking to myself, that it would never get to that point, and I would get cadaver lungs in no time. And I kept thinking that up until the transplant. Once again, God had a different plan than what I wanted to happen.


To Be Continued (and the next post About Me will be the last).....