I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Working while on Dialysis => Topic started by: roskidney on November 06, 2011, 09:39:58 AM
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HI everyone,
I could really use your advice,comments, experience. My situation is this, I have been on hemodialysis (M,W,F) for the last 7 years and for most of that time I have been working a full time job minus 14 months for school and unemployment. I also have been on the kidney transplant list for the last 3 years. I have recently found out that my CPRA is 100 which means that my waiting time of getting a kidney while on the transplant list has gone up to 2 to 4 times the normal waiting time. I also have recently found out that there is a really strong possibility that come February of next year I will be out of a job do to restructuring. If that where to happen i know that I could collect unemployment due to involuntary termination but I would like to know if I could apply for and get disability? Does anyone know if my working for most of the time that I have been on dialysis will stop me from getting disability or does that not matter?
Thank you all for your time,
Roskidney
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I'm sorry to hear about your increased time for being on the transplant. I don't have an answer to your question, but I have a (stupid) question of my own. What is CPRA ? (sorry I am both pre-D and pre-T). My thought would be that your ability to work in the past should not impact your ability to get disability now..... GOOD LUCK.
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Welcome, Roskidney!
Your question is a tricky one and will probably depend a great deal on the individual who makes this decision. Is working a struggle for you? They do not want to just give disability to people just because they have an illness, they will want to hear that working is a real hardship for you, one that you don't feel you can accomplish anymore on a consistent basis. The fact that this will coincide with you losing your job due to restructuring might raise suspicions. It would almost be better if you were sacked for poor performance, because then you could at least argue that that was due to the illness taking its toll.
I can only speak to my own experience, but I was questioned by a GP who had never met me before (they wanted someone who would be impartial). I did not think I would get disability, but I was awarded it on the first attempt. I told him honestly that there were days that I could probably work, but those days were not consistent enough to get a job. My primary complaints were nausea and extreme fatigue. You can always apply, just be truthful about your situation and see what happens.
Todd, PRA is Panel Reactive Antibodies (no idea what the added C might mean). It is a measure of what percentage of donors your system will reject immediately. Obviously 100 is very bad news, but we do have examples of people who have received transplants with PRAs at or near 100. Ro, you should be at the top of the list, because you get extra points for high PRA and if you've been listed this entire 7 years, the very first kidney that your system will accept should go to you. Has anyone talked to you about desensitization (IVIG)? They should have. Also, with such a high PRA, am I correct in assuming that you have had a previous transplant? If so, I think that makes receiving disability that much easier. I was waiting for my second transplant when I applied, and it seemed like it is more automatic in those instances.
Hope this helps. Good luck!
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In the USA, anyone who has been diagnosed with ESRD can get dissability without question! It is the only disease that is recognized as automatically approved! But the draw back is there is a 6 month waiting period before you receive first check. It is not retro to time of filing either. Hope this helps!
lmunchkin
:kickstart;
Or at least it is in my state of Tennessee
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In the USA, anyone who has been diagnosed with ESRD can get dissability without question! It is the only disease that is recognized as automatically approved! But the draw back is there is a 6 month waiting period before you receive first check. It is not retro to time of filing either. Hope this helps!
lmunchkin
:kickstart;
Or at least it is in my state of Tennessee
I don't think this is true. I was certainly never told this and I have had ESRD most of my life. You may be thinking of Medicare, or state benefits. There have been people on IHD who were turned down for disability.
SSDI is federal, so should not differ by state.
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I could be wrong on this, but when Husband filed for SSDI, he was approved because he had ESRD. We filed over the phone and was approved. The clinic he goes to said there is no problem getting Disability for those with total kidney failure. So we did it, and he was approved. Now of course, they request medical records for verification, but that was not a problem.
He was already on Medicare years before he filed for Disability.
lmunchkin
:kickstart;
Not everyone On IHD has ESRD either! I don't know why you were not approved for it. You certainly should have been if you filed for it.
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Not everyone On IHD has ESRD either!
Do I truly need to clarify that I was referring only to those members with ESRD?!
I don't know why you were not approved for it. You certainly should have been if you filed for it.
I did not think I would get disability, but I was awarded it on the first attempt.
Ro, I do know that if you are rejected initially, you should reapply. Many people are rejected the first time.
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Over the past year and 1/2 dealing with disaiblity, medicare, and medicaid....this is what I know and I am one of those crazy folks that go into the SSA office religiously to make sure I am hitting all the deadlines and filling in all the paperwork....if you are on DIALYSIS you qualify for Socail Security Disablity(SSD). (The money that is taken out of your paycheck each time. ) Now if you have low or no income you could get SSI, but you have to meet povery guidelines. If you accept taking your SSD it will be a 5 month waiting period.
I was a teacher and even though I was on dialysis I couldn't get SSD until I quit my job. I was making too much money. Also once I quit my job I could get SSD but not SSI because I had too much money in my retirement.
The link below is to the Social Sercurity Publication about these issue you are asking about...I hope it helps!! Good luck!!
http://ssa.gov/pubs/10029.html
xo,
R
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Hi Everyone, Thank you very much for your responses. ok, here are responses to your questions. the c in cpra just means calculated. I have been on the transplant list for 3 years on November 18. I have had 2 kidney transplants first one when I was 15 (lasted 3 years) and the second one when I was 18 and I was very fortunate with that one it lasted me 21 years. as time has gone by, especially the last year I have been more fatigued and have been spending all my spare time on the couch. The problem that I have as I think many of us do is that I keep things to myself and tough it out and don't say anything. I may have forgotten aquestion or two, if I have i'll respond to those after (memory you know)
Thank you again everybody
Roskid
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Hi Cariad, Yes the docs did talk to me about desensitization (IVIG). What they told me was unless i had a living donor the test would not be performed until I was pretty much on my death bed on dialysis. The reason is because it is so expensive and medicare will not pay for it until then because they look at like if you die "nothing gained nothing lost". The other thing they told me I could do is to go to another region.
Roskid
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Thank you Rachael for the site. Like I explained in earlier post, I have never known anyone rejected for SSDI with ESRD. Husband was not eligible for it until he stopped working, that is only fair! I just did not like the waiting period cause it put a hardship on our finances.
I know my daughters husband has MS, and he has to go every 2years to reapply, but those with ESRD do not. It is not just a disability, it is a "Catastophic Disability."
lmunchkin
:kickstart;
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I received SSD first try in 2008, then I just receive a form to fill out to see if I am still disabled since its been 3 years I have not heard anything back yet.
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Thank you Rachael for the site. Like I explained in earlier post, I have never known anyone rejected for SSDI with ESRD. Husband was not eligible for it until he stopped working, that is only fair! I just did not like the waiting period cause it put a hardship on our finances.
I know my daughters husband has MS, and he has to go every 2years to reapply, but those with ESRD do not. It is not just a disability, it is a "Catastophic Disability."
lmunchkin
:kickstart;
No problem. ;D Sorry to hear about your daughter's husband....
xo,
R
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My mother worked for Social Security for 37 years. Dialysis is an automatic approval if you meet income guidelines. I believe there are a few other diseases that are automatic also.