The transplant center in Texas is a preferred provider with our insurance company, but has to also be a Center of Excellence in order for my insurance company to pay for a transplant there. I think they are a fairly new center and I don't think they have done enough transplants to reach this certification. They did receive a silver medal from HHS for their lung transplant program recently, so they probably are on the path towards being a CoE, but currently are not, so they are out of the picture.

The other center I'm looking at is Duke Hospital. They have a lot of experience in mycobacterium and perform many lung transplants. They often are willing to take a risk to give patients that have been denied at other centers a chance at life. My doctor should be sending them a referral in the next day or two. I hope to hear from Duke soon, so we can schedule a consult and find out how much testing they want, and how much that will cost so I can make a decision to either go there, with the hopes of transplanting sooner, or stay with Barnes and hope to transplant 8 months out, at the very least (6 months of IVs, followed by 8+ weeks awaiting test results).  Continued prayers for all to work out according to God's will, please and thanks!

Checking In

I feel like I should update everyone, but I really don't have anything to share yet. It seems this all takes time.

There are a couple of centers I'm looking at; one is in Texas and the other in North Carolina. Both transplant with active mycobacteria, but a HUGE obstacle I've discovered is that my insurance company will not cover a single penny towards a lung transplant evaluation at a second, third, etc center! They will cover the actual transplant when I decide on a primary transplant center, but not the work-up. I think the centers surely will accept copies of a lot of testing that's been done already, but without a doubt, they will want to run some of their own tests as well. I don't have to mention that this adds a huge financial burden on us, and ultimately may force me to stay with Barnes, do the 6+ months of IVs, and hope for the best.

I am waiting for word from the other centers to see if they will take me on as a transplant patient, and how expensive they estimate the testing will be. I only plan to be evaluated at one of the two centers, so will need to decide which one when I hear more from them.

So, that’s it in a nutshell. Hopefully I will hear something from one of the centers next week.

Have a great, safe, 4^th celebrating Our Independence J