I finally
heard from one of the doctors at Duke! The tentative plan is for me to go to
Duke mid-September for consults with the doctors, psychologist, social workers,
dietician, etc. I believe there are 6 or 7 different persons/groups I will be
consulting with. She said they would then use that information and all
information they can gather from Barnes to make a determination on listing me
there. They will then decide which tests are absolutely imperative for them to
update and give me an estimate of what that would cost.
As for
treating the mycobacterium abscessus, she said that they would do a cocktail of
medications that most likely will include at least one IV medication, but they
would do 2 weeks of medications, then list me, not 6 months! My guess is that I
will continue to be on meds until transplant, but at least I would be actively listed.
The mycobacterium “smear” HAS to remain negative for me to be listed, so
prayers for that, please! I don’t completely understand the AFB culture (used
to diagnose mycobacterium), but there are 2 parts to the culture they take, one
is called a stain or smear, and the other analyzes another part of the sputum
(I think! Lol). To this point, my smears have all been negative.
The doctor also
mentioned an intensive pulmonary rehabilitation class that takes 2 months to
complete. They would like for me to complete this, pre-transplant. Some patients I’ve talked to were listed &
transplanted before the class was complete, and some completed the rehab, then
were listed. I think the doctors evaluate it case by case.
That’s all I
have for now. As always, thank you for your continued prayers and may God bless
your day J
