Soc Sec Disability Approved - PKD

My husband’s application for disability has been approved – I am surprised and elated :shock: :smiley: He just applied last month and he will be getting a check this month. From what I have read online, few PKD patients are approved. :frowning: Despite the debilitating pain, infections, and fatigue, many PKD patients battle w/ Soc Sec for years, but most are turned down even after fighting and appealing for two years. :evil: Despite being unable to work most are denied disability until their kidneys finally fail. :evil: :evil: I don’t know why they approved my husband, but I think it may be because his Neph has monitored him closely and kept meticulous notes on his condition. :smiley: (I’m gonna’ hug his neck next time we go for appointment!)

I am going to contact the dialysis clinic in GA tomorrow to let them know so they can have their files complete when he is ready to begin training for home dialysis on the NxStage. Since he is at 15% kidney function it’s just a matter of time before his Neph orders it – hoping it’s long enough that his fistula (done Jan 26) has time to mature.

In the meantime, I’m just relieved to no longer be in a one income household, :slight_smile: especially w/ me providing the one income :shock:

Congrats! I too have pkd but didn’t have a problem signing up, although I did drag my feet hoping that I would be able to go back to work. Had my fistula surger, which was an upper arm transposition and so it took a long while to heal and not be painful or swollen. Some states have what is called temporary disability which will pay for instance after a surgery. Check with the state you live in. The money is a bridge till the time Fed. disability kicks in, and is paid retroactive from the time of the temp. disability till the grace period is over for receiving Fed. disability. Part of the problem of having disabilty approved is how the paperwork is filled out. I was told at the ss office that all too often docs. fill out the paperwork stating “kidney disease” or kidney problems when what they should write down is ESRD. Lin.

The doctor can only certify End Stage Renal Disease (ESRD) or kidney failure when lab tests document that kidney function is 10-15% requiring dialysis or a transplant to survive. A doctor should not list this diagnosis until that point. Prior to that, the doctor can list what stage of chronic kidney disease the patient is in based on his/her glomerular filtration rate (GFR) level. You can see the stages and GFR levels at

Social Security has a booklet that they use to determine if someone meets listed criteria to qualify for disability benefits. When someone has kidney damage there may be other conditions that also affect someone’s work ability such as fatigue, malnutrition, bone disease, etc.

In Stage 4 (the stage right before failure) people have worsening symptoms that interfere with working. I suspect this happened with your husband. If symptoms could be better managed perhaps more people could keep their jobs or return to work. If anyone wants to read about working with kidney disease, see

I was lucky (with pkd) that I was able to work up till the time I had my access surgery, but many others with pkd suffer and are trully disabled in spite of the fact they have a good gfr… I didn’t apply for disability till later on and paperwork reflected I was in esrd. so there weren’t any problems. I don’t know what I would’ve done if I were one of those who struggle and aren’t able to work till late; my heart goes out to them. Lin.