Thursday, February 24, 2011

I have been very up and very down since yesterday.  I mostly felt low because of yesterdays information about PTLD EBV-associated. So, as I have continued to try and process this, I am not sure if I recalled something the doctor said, read something, or have just decided to make things up because it makes me feel better.

As adults 95% have been exposed to EBV (Epstein-Barr virus), I have not. So, I can't win the lottery but I can be in the 5% of all places that I rather not be. The reason this is not a good spot to be is because the likelihood is a donor would be in the 95% category, and after transplant having a lowered immunity the EBV would be reactivated. I should note, I will use chicken pox as an example. Once you have chicken pox you have antibodies, our immune system holds them at bay. Kinda like the guards in a prison, they keep the prisoners in line, but when the immune system has let down it's guard so the body doesn't reject the lungs, it opens the door for the EBV to rear it's head. Now if I got lungs that didn't have EBV previously and there are no antebodies, than that's great - of course it doesn't mean that I still can't be exposed to it at sometime in my life. I nearly forgot, the problem is with EBV (or mono) it will turn into Lymphoma (PTLD) if the body can't fight it.

I've spent a lot of time Googling this subject and been doing research on the CF forums with real CFers and their transplant experiences and the conclusion I have come to is two-fold. One, I am worrying about something that may or may not happen (ie. transplant/cancer). Secondly, this is something that I have absolutely no control over.  So, I can either worry about it now, or I can worry about it later, when there is more likelihood of it actually affecting me.

This doesn't mean to say that I won't feel the rollercoaster ride of thoughts and decisions for the rest of my life, or at least to transplant should it happen. I am finding that people going in for their new lungs question it till the very last minute because the whole thing is scary. One woman even said to the doctors in the operating room, "I really don't need this, I just have a little cough" even though she knew she did because she couldn't do anything anymore. Everyone has the same kind of story, and everyone has the same doubts. It really is like walking into a dark cave and hoping you don't encounter a bear along your way to the otherside. When you come out to the light you hope to God you made the right decision.

Not one, not one single person of the dozens of transplant stories (CFers) have regretted their decision. They would take what they now deal with transplanted over their CF lungs any day.

Between rollercoasters and bears in caves, looks like it will be an interesting journey.

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