Wednesday, February 23, 2011


Who would have known that in the quest for transplant I would have been better to have had my brother or sister lick my face and given me Mono than to keep me from it. How insane?

But since no licking was done and thus I don't have the antibodies in my body for Mono aka the Epstein Barr Virus, I am at greater risk post transplant for post transplant lymphoma.  You know that whole silly thing about being immune-suppressed post transplant. The details are too many to repeat and really I would have to re-read my literature to put it all here, but the shortened version of it all is having viral antibodies is good. So, don't be afraid for your children to get viruses, one day it might actually help. Although if your child is born with CF today, you are far better off for their future as new drugs are on the horizon.

So, does this new information shy me away from the transplant idea? For a fraction of a second, maybe less and maybe once it all gets filed properly in my brain I will have more to say, but for now I file it in with the rest of the information that requires a second look at.

I learned a lot. I learned that carpet is not good or bad (no ones ever tested it). Cats, reptiles, and birds are bad, Poodles are not! Gardening bad, painting flowers on canvas, not bad.

Lung transplants are the most difficult as they are always exposed to the elements since everything we breath or come in contact with can exposed to our lungs, where as kidneys, livers and the like are not directly exposed. On top of that if a kidney was compromised dialysis is always an option, lungs don't have that option.

I also learned hard cheeses are better than soft post-transplant and pasteurized is a must. Milk directly from a cow not a good idea (really wasn't planning to drink that warm stuff anyway, icky). Overall, good information. Guess I have to decide which things I am going to worry about. Most of it right now means nothing to me since I still have my yucky right lung and ok-ish left lung and transplant at the stage is still a really long way off. And once I heard about listing it could be a long wait or the shortest - 9 hours. Yikes.

So really other than more information to digest I still have to wait after the 7th for whether they will list me or not. Everyday seems daunting when I awake, and by the time I go to bed I appreciate having had that day but grimace a little at what the next day may bring. Having CF is hard at times because all I want to do is rest or take a nap, or be lazy and yet in order to keep going I have to exercise and keep my lungs clear and working.

Time for my vest, maybe later I can clear up some of these thoughts. Too tired right now.

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