Pre & Post TX'ers

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anonymous

New member
Just looking for some information. My husband is on the tx list (since February) and he is No. 41 on the O positive list. His pft's are around 30 and he is on 4 liters of oxygen. Just wondering - what were (or are) your pft's right before tx; I assume you were/are on oxygen - how much? For post tx - how long were you on the ventilator? How long did you wait or where are you on the list, and finally, has your tx team indicated the new UNOS regulations will bump you up? We are anxiously waiting to find this out and have been told they think he will be bumped up, but won't know until they actually put the figures in a computer and a number spits out (April).

Thanks so much for answering! Jan
 
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RadChevy

New member
Hi Jan,
What center is your husband listed at?
Is he in a pulmonary rehab program?

I was listed when my FEV1 was 28% and 30 months later when I got lungs, I was at 18%. My oxygen use was about 4 liters at rest and 6 with exercise at the time of my tx. I was in a pulm rehab program and that helped me a great deal.

The time on the ventilator varies. Some just a few hours, some 24 hours, others a few days. I was on for 8 days, due to the fact I got trimmed lungs.

UNOS will have the new lung allocation rules go into effect in April 2005. Many CFers will be bumped up on the list, depending on many variables... like their present condition. You don't want lungs too soon, as their are risks involved, and surgery, meds, therapies will only improve the longer you wait.

Good luck
Joanne Schum
luckylungsforjo@aol.com
 
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anonymous

New member
My husband's listed at Methodist in Indianapolis. You are so good to talk to and encourage everyone about tx - you've chatted with me before. He is not in any rehab/therapy. I guess because he is in otherwise good health and active. 18% sounds scary. He is quite short of breath (more than he was) so we were wondering if people went up to 5 or 6 liters. Thanks again for your input.

And to the last post, she's posted what is known about the new rules in one of the threads on this site - I think it's the one about the tx scars.
 
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RadChevy

New member
Kathy,

Trimmed Lungs - I was 5"5" and about 100 pounds at transplant time. My donor was over 6 feet and over 20 pounds. I needed the lungs desperately and my lung tx surgeon is willing to "trim" the lungs to fit the chest size.

In my case, what that meant was he removed the middle lobe on the right side, and also the middle lobe on the left side. Yes, there are 3 lobes on the right and 2 on the left, but I was informed there are actually 3 on the left as well. The third one is called "left lingula". But we just don't acknowledge it.

Hope that explains,

Joanne Schum
 
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