lucky & confused

[susan parry]

i have been ready all of your posts and you seem to be very knowledgeable about your transplants (how many matches, etc...)  i know nothing about my kidney donor-just she was 46 and had b + blood.  i have tried to ask my surgeon and he says what difference does it make? 

i am also wondering if they will continue to drop my meds-i am currently on

prograff 1 mg (4 per day)
cellcept 250 mg (4 per day)
rapamune 1 mg (2 per day)
valcyte 450 mg 1 per day

i am one month post transplant-creatine is steady at 1.0

also am getting conflicting information on medicare-transplant  social workers say i must enroll month 12 (next july) medicare says i can wait until month 30 - i have excellent health insurance through work but my rx insurance has a $10,000 per year cap on it
any info would be appreciated

thanks for listening

[Chris]

Hi,
I can only think that they will cut the valcyte at 3 to 6 months post tx, that is the rage I have been reading through here and different tx boards. Some people are kept on 3 different anti-rejection meds while some are not, it depends on your facility and your body. As far as information, skip the surgeon and ask the nurse instead. That was a lame excuse he gave you and that information is part of your medical history. If the nurse doesn't give it, go to your coordinator, if they do not give it, go higher up at that center/hospital. Although you won't get specific information about the donor, you will have to try writing letters to the donor family, but don't expect information, they may not want to share and it's a touchy subject.

Now as far as Medicare goes, I have no idea, but that process should have been suggested way before the transplant. It is a long process and you may get rejected the first attempt. I would start by calling Medicare themself than rely on Social Worker. If in doubt, go directly to  the main source (also talk with a real person instead of searchng Medicares website first, do that later)

[Rerun]

Your private insurance is primary but Medicare could be secondary and pick up what your private insurance doesn't pay.  You have to be on dialysis 30 months before Medicare becomes primary.  Now, you may have not ever been on dialysis.  Medicare will pay, secondary or primary depending on your month count for 36 months or three years after your transplant.  Medicare does have a $96 a month premium so you would have to figure out if that is worth it.