Bittersweet Day

Well, today was an interesting day. I finished up IV antibiotics after three weeks, so that was a good thing. But today also marks the 8 year anniversary of my brother's death. I cannot believe it has been that long ago. I was in the 9th grade when it happened, and to think of how all of our lives have changed since then is amazing. I guess I think about him more now since I'm starting my journey towards transplant, and that is where his life ended.

My brother was very sick, and like I said before we had always received our care at UNC Chapel Hill, so naturally when the time came for him to be evaluated for a transplant, it was done at UNC-no big deal. Well, little did my parents know that he would sit on the waiting list for over 2 years. We all know what 2 years can do in a CFers life and to their lungs. Let's just say it did not help the situation. Realizing that he was declining very quickly, the option was brought to my parents attention that they could do the living donor operation at Duke. My parents were very excited and so they went for appointments and evals right away. When they got to Duke the transplant doctor was horrified that my brother had been on a waiting list for lungs for 2 years. He said, "We get his blood type all the time". He had my brother listed at Duke right away. Six weeks later, my brother got a call.

They drove up as fast as they could and found out the operation was a go. Needless to say, he didn't survive the operation. We found out later he had a heart attack before they even opened up his chest. He also suffered a brain hemorrhage which damaged his brain beyond recovery and life support was removed a few days later.

So, you can see where my family and I might have some hesitations with the whole transplant process. Although, I completely understand that what happened to my brother was a freak accident and he was just too weak to survive the operation. We are making sure that doesn't happen this time around. No waiting 2 years when you could only have to wait 6 weeks. Hindsight is 20/20 and it really sucks that we didn't know better when my brother was still here. But, you trust your doctors, and you don't ever think that they would let you sit on a waiting list, gradually getting sicker and sicker, while healthy lungs are waiting on you at another hospital right down the road. Was it competition? money? I guess it doesn't matter. But it still hurts and makes you wonder sometimes.

I tried to spend most of my down time today thinking about his life and the fun things we did when he was here. We were only a year and a week apart, so we did a lot together. Sharing a disease made it easier too I guess. I know he would want me to get a transplant. I have no doubts at all about that. And I guess part of the reason I want one so bad and want it to be successful, is for him. I want to do everything that he never got to do in his short life, and do it with the healthy lungs that he deserved.  

Breathe Easy My Sweet Baby Brother Forever and Always
 06-14-87 -- 08-18-02