Kidney
Disability
January 25, 2024
in Kidney
Hi all, I had a kidney transplant ~ 30 years ago, May 12, 1994. Thankfully I've done well and have been able to work full-time. However, I'm finding that I'm extremely tired and it takes all I have to get through the work days.
I was wondering if disability would be an option. Curious if you know of anyone who has filed disability several years post transplant and how difficult it was to be approved. I wasn't planning on it but find that I can't hold out like I used to.
Thank God my kidney is dong great! I don't want to push myself to the Pont I start having issues.
Any information is appreciated.
Wishing you all the best always! God Bless 🙏
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I am not a social worker but if you are trying to get SSDI and Medicare through the EARD Act your kidney function must be below (X%) function. You can make your case to get disability but you would likely have to get a note from your MD and document the problems you are having at work.
Ditto to the message above. It also depends on the state you live in sometimes. I live in Maryland and they actually consulted with Virginia about my disability case for a “second opinion”. I had to fill out extra paperwork that asked very in depth questions about my limitations and health. I also of course qualify for medicare due to ESRD - but Medicare doesn’t really help for all the speciality docs I have to see. So I use American Kidney Fund for assistance with health insurance premiums.
Hi stwbear,
Congratulations on 30+ years! I am now 34+ years post-transplant (8/30/1989) and I am now on disability. I worked before, during and after my transplant until 3/2020 and only lost my job due to the Covid downsizing. I had been pushing myself for the previous 10 years to work as 1) I enjoyed working and being around lots of folks and 2) anti-rejection meds, kids, food, mortgage, etc. aren't free. 😊 I have been in chronic rejection (CAN) since about 2010. With attention to adjustments to my meds, diet and exercise I was able to keep going. But after not working for a few months I finally realized just how exhausted I really was after I had worked for 45 straight years.
I applied for, and was initially rejected, for disability through SSDI. In addition to the fatigue I felt from the decline in my kidney function, I also had side effects from high white blood cell counts, Proteinuria, secondary hyperparathyroidism, a lot of bone loss from prednisone and the consequent damage to my spine which led to sciatica and the loss of 50% feeling in my right leg, the damage of 50+ years of high blood pressure to my heart (enlarged thoracic aorta and leaky aortic valve) and ongoing issues from getting CMV after my transplant (they didn't treat that prophylactically back then) like detached a retina, and interstitial lung damage.
But that didn't matter. I found that I needed to get an SSDI advocate to handle the appeals and mainly, provide the inner knowledge of the workings of the SSDI process...whew!
I had to document my history and get my general practitioner to help me provide all the testing and paperwork for the case. Any testing the state required was, sadly, just to build their case to deny my claim. They are NOT on your side. My nephrologist and transplant center came right out and told me they would not get involved and I would need to get my GP to help...fine, I did that.
My advocate walked me through this and I put together a complete spreadsheet of my issues/diagnoses. My advocate then handled the call with my appeals hearing judge. My point to the judge was simple...why would I want to go on disability when I would be cutting my income by 70% if I could work? I did not want to do this but rather, I HAD to do this and I believed I had earned it.
I won the appeal and my advocate got a percentage of the lump sum payment. They will either make you wait 2 years to be paid, or as in my case, backdate payments to when I filed (which was two years) and paid a lump sum, minus my advocate's fee. The fee was a percentage of the lump sum up to a certain amount. I don't remember the number but it is regulated by the SSA. You need to be sure your advocate is an approved SSA advocate.
It is quite a process if you are not in ESRD Stage 5, but you can get disability if you have a lot of additional issues from a long term kidney transplant. But, the SSA's own website and advocate's/lawyers will tell you the process can take up to 2 years...coincidentally exactly what the SSA's look back period is...ha, ha.
Good luck! You can do this but be ready to advocate strongly for yourself and do a LOT of work. Do not be ashamed of admitting to needing help. That was really, really hard for me. After I got all my details together my wife laughed and said "you really are messed up"...lol.
Sorry for the long note, but it is quite a process.
PS...the equally important benefit is Medicare! The process also requires you to wait for Medicare. I believe it was also 2 years, but don't quote me. In my case, that was also affected by the date that I filed for disability. It was such a mind numbing experience (and infuriating) that I do not remember the details without looking them up...sigh
How is the best way to access a listing of Advocates in your area?
I actually found mine through an ad. I checked that she was certified by calling the SSA. You could try calling your local SSA office. Failing that…Google. Maybe someone else here has sources.
🙂
Almost any way you can spread the word about your need for a living kidney donor is good enough. Start a group/ page on Facebook and get people you know to join. Or place your need for a kidney on the Nextdoor app… Social media can be a good way to explain your need. Most people don’t know the procedure for donating a kidney. Be sure to leave the contact info for the clinic where you are listed as a candidate for a kidney.
I hope that helps.
Thank you 😊
Thank you😊
Thank you😊
Hi, thank you very much for sharing your experiences. It's very helpful. 😊