Gotta Stay Positive

I am pleased to announce that there hasn't been much activity concerning my health lately. We have made appointments for me to get evaluated the week of the 27th in April up in Pittsburg. May 15th (I believe), I will be headed up to California once more just to touch basis with the team up there and let them know how I am doing. But I can honestly say that health wise - I feel wonderful. My water retention is almost non-existent which is great, my lungs feel clear and I haven't had an irregular heart beat in a few months now.
But there is one thing I am worried about. I personally don't think I need to be listed at this point, I feel too great and my quality of life is getting better and better everyday. But what does worry me is if Pittsburg says they don't think they'd be able to do the transplant. Unfortunately, three hospitals have already said no to me and Pittsburg is kind of a last hope for us. If they say no to me... what do we do then? If they won't take me into their program, where do I go for a transplant when I actually need one? 

I know that as time goes on, medical advances will help to make the statistics better for me. But just how much further down the road will that be? How long will it take for medical advances to improve my statistics so that a hospital will take me on? Because depending on when I start to go downhill - I may not have that time to wait. And that is what scares me about this whole thing, being told that they won't do the transplant on me because I'm too high risk. What do we do then? Are there any other options as far as centers go that we could try next?

Each time my mom talks about it to people, she mentions that if I were to get listed (even low status) I would have to move all the way there. And each time, I have to remind myself that I feel great and think positive thoughts. 'I feel so good, so I won't need to be listed yet.' I keep telling myself and my parents this. If I keep saying it - I just hope it'll be true...

Hope and Love,


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My Life As A Chronically
Ill Young Adult
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