Tuesday, August 25, 2009

One Year Later

A year ago today my transplant coordinator crossed the T's and dotted the I's and officially listed me on the transplant list. It is hard to believe that it has been a full year. Today my coordinator told me that she had taken another job in newborn pediatrics and my heart sank. She has been truly wonderful and I am going to miss her. I will honestly say that I shed some tears. Getting to know a new doctor or nurse isn't always very easy. I am not really a people person to begin with. Telling them personal things is even harder. Things in the transplant world can get pretty personal. And graphic.
Doctor: "What color is your poop today?"
Patient: "Uh, what? None of your damn business!"
I really don't want to start that all over again. (Sigh) I will miss you Mrs T.


I met with one of the new surgeons today at the clinic and he was very nice. He explained things to us like we had just walked in off the street. I was thinking to myself, "Dude, it's been 16 months now, we're not that naive." But it was also kind of refreshing to get a new beginners outlook on the big picture.
We spent about thirty minutes with him and he said that I am actually doing very well. I tossed some tears as I heard him talking about patients who are hanging on to dear life and who have reached a MELD of 40 and are deathly ill and on dialysis.
I still have trouble with the MELD score when I think of the people who are so ill and near to death, but their numbers don't reflect that. It seems unfair and I wish there was another way to measure a man's illness and be fair to them.


One year. It is hard for me to comprehend sometimes what all has happened within the past 16 months since I first got sick. I cannot begin to share with you all the changes that we have endured as a family. And yet, as hard as this past year has been on me physically and the mental anguish we've all had to share in, the year has been good to us and it has brought us much closer. All these moments combined have made things less painful.
I know that this year was difficult, and I suspect the next will be harder, but I also believe it will even be better.


  1. It is hard to imagine what you have been going through. Hopefully this coming year will bring you and your family good tidings.

  2. I know exactly what you mean. Life seems a little sweeter when you or a family member has been so near to death. Illness is a horrible thing, but we found that it does bring you closer and allow you to experience a small portion of the suffering that Jesus experienced on our behalf. Keep your chin up. Your day will come, you will get that transplant and will have a new lease on life.
    --Linda, Wichita

  3. Thank you, Linda. It is a long difficult road and we will get there.
    It is always nice to hear from you.