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If this is part of living on disability

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  • If this is part of living on disability

    Hi, I am newly known to have chronic kidney disease. I am 23 years old, am turning 24 in August. I am in central California. I have been known to suffer from chronic kidney disease since April 18. I am on stage 3 - GFR was at 35 to 40 percent, now it's up to 43 percent. I have been taking medicines and following the renal diet. For now I am still with my parents because of financial/economic issues mainly. I wanted to work this summer, but unfortunately the CKD has made me put this plan and ambition on hold. A kidney biopsy was done for me on March 23 and on April 18 at the nephrology center where I am at the doctors would see that I had stage 3 chronic kidney disease. I do look normal though, I can do my daily tasks without a problem, I am able to drive and go out. I'm fortunate to have my parents and brother support me. The renal diet is a little tough, about 10 to 30 on a scale of 1 to 100, since I also love so much to eat and drink. I've been on the chronic kidney disease due to detecting high protein in the urine and possibly also hypertension detected for me since February or March. As a result I now take blood pressure pills to keep my blood pressure at or below 130/80. I have a neighbor who also has the CKD and he lives normally with abilities to do daily tasks and drive, is married with two or three kids, his wife does work, has had a kidney transplant already, and CKD sufferer for over 20 years now. One of the children of him and his wife is a daughter a year older than me. That neighbor doesn't work in a typical workplace, though, despite being normal in terms of no physical disability, but he receives government supplemental income to get by and live. My parents can support me for now and therefore still stay with them at least for a couple more years, but that doesn't mean they can be like that as more time passes by. I am scheduled to finish an associate's degree in college next May, but the thing is of me in doubt of work or not afterwards. I am in the process of instead applying for government supplemental income to get by. Does this mean a chronic kidney disease person is one who is on disability? I hear of caregivers for a loved one or friend, specifically, caring for the dialysis patient on Ckd. I am going to soon apply for health care for anyone suffering a chronic illness or condition. I am able to move normally, don't have huge pain on my body. I do take medicines for this disease. At times I do feel either lazy or tired from not doing tasks at home as much as I used to. I've had restless and sleepless nights due to thinking what to do now that my kidneys are ailing. I know that disability is about impairment or limitation of what is considered normal, and can be physical, cognitive, mental, intellectual, emotional, or a combination of more than one, but does chronic kidney disease count on it too? Autism, cerebral palsy, ADHD, spina bifida, and deafness are example disabilities, don't see CKD on a list of them anywhere. How does a typical adult live like this? Do they work normally and have normal independent lives or have to be on dependent adult lists? (obviously if a working-aged adult is dependent they can be disabled) I'm not on a list of dialysis or transplant - that occurs when it's kidney failure or 10 to 15 percent of GFR. I am taking care of myself to not rebel against the diet or forget the medicines daily. I'd appreciate answers, thank you.

  • #2
    Hi.I also have CKD and not on dialysis. My GFR is 31. I work full time. I am a nurse I have changed jobs this last year because of more tiredness. I was working doing pediatric home care and the lifting and working 12 hour shifts got to be too much. Now I do visits and work 8 hour shifts No real patient care just interviewing and wellness checks. I feel like if you are able to work you should it does not sound like you have to hard of a time with tiredness. My Neph said if you do not have symptoms you should try to do things you have always done. Manage your diet, take your meds, and keep up with your lab test. I live in Texas and I plan on working until I can't any more. I don't know what they consider a disability in Cal but CKD is not really considered one here, but if you have to do dialysis you can go on disability. You would have to check how it works where you are, but my advice would be work if you are still able and feel like you can. Having CKD is not a death sentence. Live your life you are still very young. Take Care and Good Luck.


    • #3
      Hello Jagb1992,

      As noted by raramorgan, CKD is not a disability until it requires chronic dialysis. Once on dialysis you become eligible for Medicare Parts A & B. You have to pay Medicare Part B premiums effective with the start of coverage. You are eligible for that coverage after 3 months of in-center dialysis or immediately if you begin home hemodialysis training.

      If you have not worked for at least 5 months while on dialysis, you will qualify for SSDI (Social Security Disability Income). You may start working during the period that you are collecting SSDI and continue to receive SSDI for a 9 month period regardless of how much you earn. After 9 months, you can not earn more than $1130 a month, an amount that can increase with any expenses that you incur as a result of your disability, e.g. cost of insurance premiums, deductibles and out of pockets, transportation to work, and other accommodations that are required for your disability. If you earn more than the $1130 (plus eligible disability expenses) your SSDI will be suspended.

      There are many individuals on PD and HD who work full time. The demands of dialysis are significant but can be managed. My kidney function reached Stage V in early 2012 and I had an AVF places and made plans for home hemodialysis (HHD) training, which commenced in July 2012. I worked full time and continued to do so through the 5 weeks of training and beyond. I am now with my second full time employer since beginning HHD some 4 years ago. I will also add that I am 62 years old and somewhat exceptional.

      Loss of kidney function and eventual kidney failure (ESRD) like many medical issues, affect everyone individually. Just because I have been able to do these things doesn't mean others can do the same. As a PKD sufferer, I still have residual kidney function, make urine and do not suffer from any other consequential medical issues. If you were a work colleague or friend, you would never know that I am an HHD patient and have been in dialysis for four years.

      My weekly HHD treatment regimen is quite flexible, performing a mix of both daily and nocturnal hemodialysis treatments in the comfort of my own home, in a room set up for that purpose. Alternating between 4 and 5 treatments per week, can be a bit of a grind, but the alternative is far more unpleasant - a rather uncomfortable death. I've been listed for kidney transplants with two hospital programs, one for 5-1/2 years and the other for just under 4 years. My age, time on dialysis and blood type O (a long list), are the key reasons for the long wait for an offered cadaver kidney. The successful HHD gig, along with full time employment keep me busy and without a sense of urgency for a transplant. I realize there are many kidney failure patients waiting for a transplant that are not thriving as I on dialysis.