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

Well....not so fast

I update today with a heavy heart. I am soooo glad I waited a couple of weeks before packing up to move to STL. I received a call a couple of days ago from the transplant coordinator, informing me that mycobacterium showed up on the latest sputum culture again L They are just assuming that this means I DO have mycobacterium abscessus, and at least 6 months of IVs are required before I would get re-checked, and I hopefully would be cleared for transplant if cultures are negative at that time. At least one of the IVs can be very hard on the kidneys, and can also lead to hearing loss. As you can imagine, this is not something I'm happy to dive into head-first.

I am doing a bit of researching on my own and looking at what my options are. I know of at least one center that will transplant with active mycobacteria abscessus, but it sounds like they like a few months of IVs under the belt as well, not to mention the center is 20 hours' drive away from home. I will call them next week to get more information.

I would ask for prayers for me during this time, for discernment, and for my spirits to be lifted. There is a lot to consider as I try to figure out what the next step(s) should be. Also, please lift Dakota and Garry up in prayer as well.

Thank you & I will update as I know more.
God Bless

Good News!!

Good news from St. Louis--I can be relisted!!

I give sputum samples often, and today was no different, and after discussion with the doctor and my own leanings, I think I'll put off getting listed for a couple of weeks. Back in December I got listed and then just a short time later, something showed up on a preliminary sputum report and I had to go home and await results. I don't anticipate anything will show up on the preliminary culture this time, but want to just wait for the preliminary result and then move to STL and get listed. Back In December, it was sooo hard to say goodbye to family and friends and also hard to leave STL after having the dream of going home with new lungs. I don't want that to happen this time as well.

If I could ask, please keep the prayers a comin' for nothing to show up on the preliminary report the next couple of weeks! Thank you so much! J

Hugs,
Lynda

Can I get an Amen?!

Good news! I found out this week that sample #3 has shown "no growth after 8 weeks of incubation"! Praise The Lord, and thank you for the prayers and thoughts!!

Garry and I are scheduled to have a consultation with the transplant doctor next week. I can't imagine why they wouldn't go ahead and reactivate me at this time, but we'll see. I suppose they may want some tests updated, since a few months have passed. Let's just hope that heart cath's are good for a few months before needing to be updated!! 

As always, I will keep you updated as I know more. Thank you so much for checking in and for the prayers.

Hugs,
Lynda