On February 9Th my wife Stephanie and went to Loyola to meet with Dr.Love, who is the transplant surgeon. While sitting in the room we both came to a great realization, it is very possible that I may not live long enough to get my transplant. We remain positive and I will keep taking care of myself as good as I can.
The reason for this realization is that when you are waiting for a lung transplant you are given a score from 1 to 100. This score is call LAS(lung allocation score). The higher your number is the higher your priority for transplant is. My current score is 35. While 35 may seem high to most people waiting for transplant the reality is that with CF patients transplants are done when LAS hits to 45 to 50 range. Unfortunately for a CF patient to increase the LAS they most keep getting sick but not sick enough where they are to weak for a transplant. There is a fine line here because when a CF patient is at the point that they are listed for transplant they are SICK. By "sick" I mean that they can die at any given infection they get. A routine hospitalization could be the last. CF kills slowly. It does not matter how good of shape you are in or how long its been since the hospitalization.
It is hard to come to grips with this. While there are a lot of CF patients that live long and healthy lives, there are also CF patients that struggle with health their whole lives. Either way the end is clear, this disease will kill you. I have never said this out loud or written it but how does not scare the crap out of you? The answer is as complex as the way CF affects all of us. In every case of CF the outcomes are very different.
I just want to live happy and free as long as possible. I get scared now every time I get sick and go into the hospital I am afraid it will be my last. I know that this affects my everyday life in a way people cannot comprehend. I don't stress out about bills or whats for dinner. I never worry about dirty dishes or laundry. What I worry about is making everyday easier. Whether it's shoveling the driveway so my wife doesn't slip or sweeping the floor cause I know that it bothers my wife when there is dog hair on the floor. I hate it when people complain about having to do chores or complain about work. I stress out when people bitch about walking the dog or having to go work out. I stress out and get mad cause I would love to be able to do all of those things.
I do as much as I can with my health the way it is. I have been so caught up in waiting for my transplant I am forgetting to live my life. That changes today. I am going to live once again. I just want my life back.