How many people lose their SSDI or SSI after transplant?

[unvaso]

I am a social worker at a dialysis clinic, and just finished my yearly assessment with a 30 year old guy who has been on dialysis since he was 14 years old (kidney problems since birth). He is very much against the idea of working, on principle. He idealizes a hippy or gypsy lifestyle. (his words, not mine.) He does work occasionally- under the table, little side jobs for family or friends, but only things that can be done in a few hours, and when he is feeling up to it. 
At his last transplant evaluation attempt (he's had several over the years, but never has gotten past the preliminary appointment), a psychiatrist told him he would lose his SSI after a year and "what's the point of giving you a transplant, if you don't plan to work? We only give transplants to people if it would improve their quality of life."  Although he strongly dislikes dialysis, he feels pretty comfortable with his life outside of dialysis.  Aside from the burden of dialysis and the side effects he experiences afterwards, he states he is content with his quality of life overall.  He doesn't want to sacrifice it by getting a transplant and being forced to work.
I assume that if he got a transplant, he would continue being eligible for SSI, based on his other medical conditions- bone pain, migraines, etc.
My question- what has been your experience with this?  Have you had success keeping SSI/SSDI after a transplant if you were not physically able to work?  Was it a hassle to keep it? 
Also, has there been anyone else who, during the transplant evaluation process, told the transplant team that you did not think you would be able to work after getting a transplant? Did that block you from getting listed?  (Of course, this guy states he does not WANT to work, which I know rubs people the wrong way- entitlement, living off the system, yadda yadda- but honestly he has been ill all of his life and has never had success with work programs. He's done vocational rehabilitation, had a couple jobs, and would end up in the hospital. I think he focuses so much on his philosophical reasons for not working, to avoid dwelling on the physical reasons he hasn't been able to work.)

[smartcookie]

Hi unvaso!  I am a renal social worker, too!    This website has the listing of diagnoses used for SSDI:  https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm.  It is possible for him to stay on SSDI due to other medical issues, but the psychiatrist is right; he would lose his SSDI for ESRD because technically he does not have ESRD when he gets a kidney transplant.  He moves back up to CKD.  I would have the patient call the local Social Security Office to make sure his SSDI is under ESRD and not another diagnosis first.  Then I would ask how switch him over to a new diagnosis without starting the process all over again (which is a total pain and often has long wait times).  Be sure the patient knows that he not only loses his SSDI, but his Medicare as well a year after transplant. SSDI and Medicare go hand in hand. 

[Simon Dog]

He is very much against the idea of working, on principle.

Does he have trouble breathing because his head is so far up his ass?

I went to Home Depot the other day.  The guy who helped me literally limped to the shelf to find the product I was looking for.  I asked if he had a hip problem (he was walking like I did before my hip job) and it turns out he has cerebral palsy.   I give him credit for getting out there and working when he could almost certainly be fully disabled.

[KarenInWA]

Hi unvaso!  I am a renal social worker, too!    This website has the listing of diagnoses used for SSDI:  https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm.  It is possible for him to stay on SSDI due to other medical issues, but the psychiatrist is right; he would lose his SSDI for ESRD because technically he does not have ESRD when he gets a kidney transplant.  He moves back up to CKD.  I would have the patient call the local Social Security Office to make sure his SSDI is under ESRD and not another diagnosis first.  Then I would ask how switch him over to a new diagnosis without starting the process all over again (which is a total pain and often has long wait times).  Be sure the patient knows that he not only loses his SSDI, but his Medicare as well a year after transplant. SSDI and Medicare go hand in hand.

Medicare ends 3 years after transplant. I had mine from 2011 up to Nov 2014 - my transplant was Nov 2011. Also, I was never on SSDI - I worked FT throughout my 7 months of dialysis and subsequent transplant surgery/recovery. Medicare is dependent on the ESRD diagnosis, not on whether or not one is on SSDI.

KarenInWA

[smartcookie]

Thanks for the info, Karen!  I just have general knowledge and not firsthand knowledge. 

[kickingandscreaming]

Do they have the same work requirement for everyone?  I'm 75 and if I were to be listed for Tx, I would say it was unlikely that I would work afterwards because how many people hire 75 year olds these days? Maybe I could wheel people's groceries to their cars, but probably not much more.  Any job I could be hired for wouldn't improve my quality of life.  So does that bar me from getting a Tx?

[KarenInWA]

Do they have the same work requirement for everyone?  I'm 75 and if I were to be listed for Tx, I would say it was unlikely that I would work afterwards because how many people hire 75 year olds these days? Maybe I could wheel people's groceries to their cars, but probably not much more.  Any job I could be hired for wouldn't improve my quality of life.  So does that bar me from getting a Tx?

The work thing is only for patients who are under age 65 or do not have another disability that is eligible for Medicare. If you are otherwise eligible for Medicare - be it by age or other condition - then this is not something you need to worry about.

KarenInWA

[smartcookie]

Kickingandscreaming, Karen is right.  You would keep your benefits.  I say, go for the transplant!  The transplant center near me has transplanted an 82 year old. 

[unvaso]

Working after transplant really isn't a "requirement"- they want to make sure you can pay your bills and afford your medications, I get that; and unfortunately health insurance for able-bodied single adults under 65 is tied to work. (Well, there's the Marketplace Plans, but who knows what that will look like in a year.) Transplant centers aren't demanding that, for example, housewives (or househusbands) covered by their spouses' insurance, who have never worked a day in their lives, plan on working post transplant. So on the one hand, I totally get what Simon Dog is saying, and I often have to choke down similar responses when I talk to patients.  One the other hand, many of the patients I have worked with over the years have been scared away from getting a transplant for this precise reason- the fear of not being able to work, or not being able to find a job.  This is a valid fear for patients who have been sick the majority of their lives and really can't imagine a different life.  Like this particular patient, they've tried to work here and there, and it never ends well- they are fired after too many hospitalizations or call offs.  Also, where I live, good jobs with health insurance are almost mythical to people without college degrees, or years of work experience, or - plenty of part time Walmart (or Home Depot) jobs, but they don't offer health insurance.
Anyway, I was curious about the typical response from SSA to patients post transplant.  It's a good idea to have the patient contact SSA and find out about the diagnoses they already have, and try to get covered by something else as primary.  (Not because I don't want this patient to live off of SSI for the rest of his life, but because I think it is ridiculous that someone from the transplant center gave him the impression that if he didn't get a job after a transplant, then his quality of life would not improve, and therefore he did not deserve a transplant.  Sorry folks, my quality of life is best when I am on vacation, at the beach!)

[Southpaw]

I worked Full time throught dialysis and I am still working full time after transplant.  I have had plenty of issues too.  I had a liver transplant 15 years before my kidney transplant and then developed a brain tumor because of my immune suppression.  I kept working full time through everything.  Sounds like the guy is lazy.   He probably thinks he is entitled to free stuff.  I say do your best to qualify for the transplant, stop smoking dope, and get a job.