Monday, January 25, 2010

The Office Work of Transplant

There is a lot of bill paying and budgeting and phone calling and copying and emailing involved in transplant. To get back in the swing of showing you what's up with CG, I am going to start to copy you on my office work. FUN! :)

This is an email between me and my CF doc about what I should do regarding double listing. I wonder, do any of you have thoughts about double listing and transplant?

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Dear Dr. U-Bird:
I know you cannot disclose my status, and I don't want you to. But, now that I have hit the 90 day mark on the waiting list, I have been rediscovering the UNOS database and trying to get a handle on my wait time at the [Tx Center]. I believe that my LAS score is about 38, but it could be lower. It seems like at the [Tx Center], people are not getting transplanted until their LAS score is 40 or above, which makes me fear that I will have to survive another bought of sickness to be moved up on the list and receive lungs here in [this area]. Even so, it would be much easier on me personally and financially if I remained here to get the surgery and rehab.

However, I wonder if I should research getting listed somewhere else? Perhaps [this one place] or [that other]? I am not that interested in [the big important famous place] because of their policies about follow-up care and difficulty working with other centers when patients leave. Obviously I will need to do some fancy footwork both financially and personally if I will be leaving [here], and I want to start that process now if I must. On the other hand, I don't want to jeopardize my relationship with the [tx] team by telling them I'm looking elsewhere to be listed. I don't know what to do. Thoughts? Is there another center in particular that you do send patients to?

Thanks, feel free to call or email back. You know I love email. >>



1 comment:

  1. Why dontcha just go on a tv show since on tv it is really easy to get a transplant? Then you won't need to worry about going somewhere else.

    Seriously, I am not qualified to answer your question, but you are qualified to answer your own question. You have been an amazing advocate for yourself. xxoo

    ReplyDelete

Thanks for commenting! Your comment will be posted ! -CG