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
Oh wow Lynda! So glad I took a look at your blog wall this evening. This is sounding very promising. I'm so happy for you. I'll continue to keep your sweet self in my prayers. So will Don! Love to you --
ReplyDeleteMarcia
Hello Lynda, my name is Mary Keely, I am a member of Riverlawn, I have been following your updates and prayer requests and have been praying for you. This past year I was diagnosed with mycobacterium after my immune system was compromised from chemo treatments for R. A. I sympathize with you fighting this infection, I don't have C.F. so really can't imagine how you cope with that aspect also. I do know we serve an Awesome God and he is with us no matter what we are facing. I will continue to keep you on my prayer list.
ReplyDeleteThank you for your kind notes and for the prayers, Marcia and Mary! I'm so sorry you are battling this mycobacterium too, Mary. I am trying to get an email address for you from the church (hope you don't mind) so we can share stories and help each other in any way possible. I hope & pray that you will be able to get rid of it with treatment. I think this is very possible, it just can take many months, as I'm sure you've discovered! Keep up your faith!
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DeleteMary, I deleted your email address from this blog, since it's a public blog. I did write it down and will be sending you an email soon!
DeleteI finally figured a way so I can add comments! Yay!
ReplyDeleteI'm very excited about this. It sounds quite promising and I'm praying you have a very positive outcome.
Hi Lynda! This all sounds promising and will keep praying for you!
ReplyDeleteDebbie
Thank you for the prayers, Debbi and Debbie! ;) I so appreciate them!
ReplyDeleteBeen praying for you and will continue. God's blessings and wisdom for all concerned. Mary
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