Out-of-State Transplant Medicaid/Insurance Question

[Lexxtech18]

Here's the problem. As of right now I have:

Primary: Medicare
Secodary: BCBS
Tertiary: MI Medicaid

I'm looking to have my transplant done out of state. But by the time I'm eligible to have said transplant, I'll no longer by on the BCBS (it's my dad's insurance and I can only be under it until I turn 26, next January.) The hospital I'm hoping to have my transplant done at doesn't accept MI Medicaid, obviously, it not being in Michigan. Therefore, I'd be stuck with having to pay for whatever Medicare doesnt. Do I have any options here? There's no way in hell I can afford to pay 20% of my transplant bill out of pocket. Who could?! Going back to U of Michigan for my 3rd tx just isnt an option, either. Too many bad experiences. And there aren't really any other good tx hospitals in this state.  Any suggesstions?

[jeannea]

I know that UofM is considered the best. Would they not take you there or you don't want to go there? When I search online it says there are 3 hospitals that do transplants in MI. Check them out. Give a call. Go visit. Look for online reviews.

Other than that, no suggestions. That's too much money to come up with.

[noahvale]

*

[Chris]

I know with IL Medicaid they would not pay for anything out of state even if's an ER visit. If I go out of state, I'll do it when I know I am healthy enough, which was a fear being out of state for a month. First I would ask the Medicaid office (not sure if you have a case worker yet) explaining your situation in  as much detail as possible. You may have to talk to the supervisor there tho. As mentioned before, ask the transplant hospital you are interested in, again giving as much detail as possible. You may need to tell the social worker there the same reason.
 
Win the lotto is one long shot option.

[Lexxtech18]

Thanks very much for the information. Yes, one of the clinics I'm looking at right now is in a bordering state. Cleveland clinic in Ohio.

[Lexxtech18]

I know that UofM is considered the best. Would they not take you there or you don't want to go there? When I search online it says there are 3 hospitals that do transplants in MI. Check them out. Give a call. Go visit. Look for online reviews.

Other than that, no suggestions. That's too much money to come up with.

I went to U of M for my first two transplants. The first they killed by giving me something they knew was nephrotoxic, that I didn't even need. Then refused to let us see the medical records afterward. The second time they gave me some experimental drugs that could potentially give me cancer in the future. I just got sick of being their guinea pig for 20-something years. I will not go back to U of M again.

I know Saint Mary's also does transplants, but my Nephorologist (who used to work there) told me himself, he would not advise any of his patients to go there. They don't know what they're doing. So yeah. I dont have much faith in MI hospitals when it comes to tx. And as this will probably by my last transplant and last chance I dont want to screw it up.

[Simon Dog]

If they will not let you see you medical records, and you suspect an in appropriate Rx killed your kidney, it's time to visit a scum-sucking, bottom feeding, contingency fee attorney to see if you have a case.  They also are very familiar with medical records law and may not be as easy to blow off with a "no" when you submit your records request when represented by counsel.

[Lexxtech18]

Oh, we would have. Unfortunatly, that was about 8 years ago. I think it's a little late to try to sue. lol We would have at the time it happened, but my family was in such shock that I had to start dialysis and I was in and out of the hospital for months that suing was kind of the last thing on out minds.

[Sax-O-Trix]

Forgive me for being nosey, but what drugs did they give you that killed your kidney?  I think that info would be valuable for other transplantees to be aware of.  I had a serious reaction to Tacro right after my transplant that could have not only killed my new kidney, but me as well (TPP/HUS).  I now have to worry about getting again as 30% of patients get it again within 10 years of the first episode.  It seems like every drug they give us is nephrotoxic.

What about the third transplant hospital in MI?  How bad is that one?  Could you keep the U of M open as an option and just be hyper-vigilant about not being a guinea pig? 

Can you move to Ohio?  It seems you would qualify for Medicaid there if you qualify in MI.  Just a far fetched thought:). Medicare would follow you anywhere in the US. 

I hope you find a solution to your dilemma!

[Roxy]

Hi!

I know it's generally a lot of money but couldn't you get Cobra from your dad's insurance? I left a job and went back on my mom's insurance and then when I turned 26 and her insurance was going to drop me, I had the option of Cobra. It is expensive, but it was worth it.

[paris]

For me, cobra was going to be $800 a month.   That is close to $10,000 a year.  If I could afford $800 a month, I could afford to end up paying the 20%!  Cobra is great, but on an average income, it is hard to come up with that much.

I am sorry there is so much drama with your transplants.  It shouldn't be that way.  I hope you find an answer soon.

[Pam]

Have you considered Henry Ford? I had a transplant there 03/06/13. I only have good things to say  about the entire experience. I only had  to return to HF 2 times. They worked with my Neph and he does all of my clinical work in Saginaw. I don't know much about them but they do transplants at Beumont.
Pam 

[Lexxtech18]

Forgive me for being nosey, but what drugs did they give you that killed your kidney?  I think that info would be valuable for other transplantees to be aware of.  I had a serious reaction to Tacro right after my transplant that could have not only killed my new kidney, but me as well (TPP/HUS).  I now have to worry about getting again as 30% of patients get it again within 10 years of the first episode.  It seems like every drug they give us is nephrotoxic.

It was Amphotericin B.