Update

I finally heard from Duke and have a date set for "consults" with the doctors, social worker, financial coordinator, etc.! The consults are scheduled for September 24. The only thing that may stand in the way now is if the AFB smear I just gave last week comes up positive. If that happens, then I'm pretty sure Duke is out of the picture. Continued prayers please!! I expect to hear something on if the smear is negative or positive in the next few days.

Thanks for faithfully checking in and God Bless!
Lynda

Prayer please

I wanted to make a short entry to ask for prayers. I saw my CF doctor today and gave a sputum sample. The "smear" has to remain negative for Duke to consider me. The test reminds me of the strep throat tests where there is an initial result, then they let the culture grow for a few days, except in this case, there is an initial smear, then cultures grow for weeks. Please say prayers that the initial smear will be negative, as it has been on all tests up to this point!

 Thanks so much. I will add a bit more over the weekend.

Finally!

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

Older and Wiser ;)

I have not heard from Duke yet. I know they are a busy place and with the hitches in my insurance coverage, that may be throwing a wrench in things. I surely hope to hear from them this week. I left a message last Thursday and will rattle their cage again tomorrow.

We have had some much needed rain here, so high humidity is also a factor, and it has really been a struggle to be able to breathe lately with just about any kind of exertion. Your continued prayers are appreciated, and thanks!

I did happen to turn 47 on Friday! Pretty amazing, all things considered! I am so glad that God has blessed me with fairly good health during my lifetime, as many CFs have not had that luxury. I am thinking of two children that I have met thru CF venues that really have periods where they struggle, and I wish this wasn't so, and also wish there was something I could do for them. I do say prayers for them, and I know that they are tough little troopers. There are some good things on the horizon for cystic fibrosis, so my wish is that the young generation of CFs (older too!) will have some major changes, for the better, in the very near future!!

Have a blessed week!