| Author |
Message |
Sleepy
Member
Username: Sleepy12
Post Number: 1
Registered: 02-2014
| | Posted on Monday, February 10, 2014 - 02:20 pm: | 
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Newbie here. I have a question. Since early 90's I've been on Disability, Do to Lupus & Kidney Disease. I went 20+ years without having to go on Dialysis. I'm now on Dialysis & on the Transplant list. I'm trying to find out if after I get a Transplant if my Medicare insurance/SSDI payment will go away? I believe if you go on Dialysis just because of Kidney failure you automatically get these benefits. But After getting a Transplant they go away after a certain time period. Will this or does this apply to me also, since I got mine because of the Lupus & Kidney disease? I'm afraid they will look at me getting a Kidney as being cured. I have Lupus & always will. |
Kidneyboy
Member
Username: Kidneyboy
Post Number: 57
Registered: 01-2012
| | Posted on Tuesday, February 11, 2014 - 11:15 am: |
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Hi Sleepy,
You will continue to receive SSDI for a minimum of three years post Tx, based on End Stage Renal Disease (ESRD.) Social Security with input from your doctors will determine if your other conditions keep you from being able to work. You should address this question to your social worker, doctors, or transplant coordinator, who know your medical conditions.
I hope you do receive a transplant, it is so much a better life than being on dialysis. Stay well. |
Sleepy
Member
Username: Sleepy12
Post Number: 2
Registered: 02-2014
| | Posted on Saturday, February 15, 2014 - 08:25 am: |
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Kidneyboy,
I have been talking with my coordinator & even tried to get my original determination letter myself to find this info. She or I couldn't get the original letter, they said it was to far back. Early 90's. Sounds odd but ok. From what she found out is that I got Disability for Lupus, not ESRD. She said So it shouldn't go away. She did say that I would still come up for review which is normal & I already knew. That's what worries me. I'm afraid they will see Kidney Transplant, Denied! Just wanted to give a little update. |
Kidneyboy
Member
Username: Kidneyboy
Post Number: 60
Registered: 01-2012
| | Posted on Tuesday, February 18, 2014 - 07:07 pm: |
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Hi Sleepy,
I went through the review process and it can be as simple as a phone call from Medicare about a month before termination. What happened to me will not be the same for you, as your disability was based on Lupus. Since your original diagnosis, as you stated, was not eliminated you should continue receiving benefits.
In any case, I hope you have success with the Tx, and have many years in good health. |
miocean
Member
Username: Miocean
Post Number: 217
Registered: 07-2010
| | Posted on Monday, March 03, 2014 - 11:09 am: |
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HI Sleepy,
I have a similar situation. I received disability after renal failure but I also have scleroderma and did not know which qualified me for disability. It does not say on the eligibility letter.
3 years after my transplant I received a letter and form from SS to see if they needed to review my case. They asked for my doctor appointments for the past 3 years, which was overwhelming as many of my organs are damaged from scleroderma. I called all my doctors and asked for a print out of my appointments for the past 3 years.
I blocked out unnecessary information on the pages and mailed a large envelope to SS with a signature required. I wrote a cover letter explaining my issues. I kept a copy of everything I sent.
Several months later I received a letter stating I continued to qualify with no need to do a formal review. Try not to worry and keep good records of all the doctors you see so you will have it.
Diffuse Scleroderma
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ |
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