So close to getting on the list

[SweetyPie]

Hi all,
So I got a call last week from my Transplant coordinator saying the team want to put me on the transplant list but there's a problem with my insurance. I dont remember much because I had bronchitis and I wasnt feeling well over all. But the lady said that my insurance doesnt cover either the surgwry or mediciations cant remember. I am very confused because I have both medicare and mediciaid. They gave me an option to go on my parents plab but my dad said that isnt possible. Does anyone know what I should do? Anyone have this problem? I am currently trying to get listed at Georgetown medstar in Washington Dc.

[iolaire]

But the lady said that my insurance doesnt cover either the surgwry or mediciations cant remember. I am very confused because I have both medicare and mediciaid.

Hi, they might be worried about the co-pays on the surgery and/or medications?  Medicare pays something like 80% of the costs so unless Medicaid picks up the rest they will want to insure that you are able to pay the rest.  Plus Medicare only pays for the antirejection medicines, there are numerous other medicines.

Post transplant I've also had to pay for a few hundred dollars in over the counter products - sodium bicarbonate and magnesium.  I ended up getting a huge jar of sodium bicarbonate pills from Amazon because they upped my orders to 12 pills per day up from 6 and didn't increase the number of pills delivered by the pharmacy...

And congratulations on getting close to being on the list.

[Simon Dog]

American medicine at it's finest - wallet biopsy is the most critical test.

[SweetyPie]

Thanks for the reply, the financial person is going to talk to my case manager so we will see in a few days whats the issue.

[MooseMom]

American medicine at it's finest - wallet biopsy is the most critical test.

Very well said!

[SweetyPie]

Does anyone know what tests you gotta do once you're on the transplant list? My coordinator said once I'm on the list the transplant will hapoen quickly considering my age and the time I've been on dialysis.












Sp mod Cas

[iolaire]

Does anyone know what tests you gotta do once you're on tge transplant list? My coordinator saud once im on the list tge transplant will hapoen quickly considering my age and thr timd ive been on dialysis.

I assume you have done a ton of tests already to get close to being on the list?  (Usually they don't offer you to the transplant listing team's listing meeting until all tests are done.)  If so there should just be monthly blood draws for the cross match database.

[SweetyPie]

Just got a call im on the list!! You are correct she told me about monthly lab draws.

[iolaire]

Just got a call im on the list!! You are correct she told me about monthly lab draws.

Congratulations! I hope you experience a easy and successful transplant with longevity.

[MooseMom]

Outstanding news!!!

[SweetyPie]

Im not going to lie Im extremely nervous. I want this kidney to last unlike my first kidney. Within a year it failed and inwas devestated. I nervous about the surgery pain and also trying to maintain my weight while on prednisone. Theres a lot im nervous about. If you guys have tips let me know and guide me through the process once you go in for surgery.

[MooseMom]

Having a transplant is a pretty dramatic event, and I don't want to sound flippant, but as far as the actual surgery went, it wasn't a big deal for me.  I had surgery on a Sunday morning and was discharged the following Wednesday afternoon.  They gave me pain medication to take home with me, but I never needed it.  My incision was closed with the usual staples.

That's pretty much it.  Not very helpful, I know.

As for weight gain, I did gain about 10 lbs over the first year, but I don't really think it was the prednisone because my dosage was reduced from 30mg upon release from the hospital down to 5mg fairly quickly.  Five and a half years on, I'm 20 lbs lighter.  Being transplanted means that you have more energy to be more active, so it's easier to lose weight.  At least, that's what I found.

Good luck to you!  If you have specific questions, I'd be glad to answer, but my answers may well be entirely irrelevant to you.  My answers are obviously guided by my own experience.