The Office Work of Transplant

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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. >>

Comments

  1. Lucy1/25/10, 9:29 PM

    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

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