This is a GREAT and POWERFUL campaign led by @HeatherRose
August 1, 2019
Living with diabetes requires sooooo much effort. The daily requirements of staying alive are relentless and unending. It is messy, unpredictable, and damn frustrating most of the time. The biggest thing though, is that unless you have a friend or community who also has it, you are likely to feel misunderstood. And even when you have friends and community, at times you can still feel largely alone.
it gets worse when you’re battling both diabetes AND kidney failure. Have been on dialysis since 2014 so it’s a struggle between the diabetic diet and the renal diet which is much more restrictive plus most diabetics who have healthy kidneys do not understand about having fluid restrictions. When you have too much fluid in your body, it can build up in your lungs too and stop you from breathing
I’m sorry to read about your challenges as a diabetic who also needs dialysis. That has got to be tough!
Unfortunately, human nature can cloud our perspective. When faced with all the challenges that a diabetes diagnosis poses, we tend to narrow our focus on just the immediate situation.
Managing blood sugar is hard enough without also thinking about impaired digestion, kidney failure, threats to eyesight, and impaired peripheral sensation/circulation that diabetes can exact in the longer term.
Are you on the list for a kidney transplant? I realize that a transplant has its own list of troubles but, if successful, it does bring substantial relief. I’ve read that while dialysis does make it possible to survive, it does not perform nearly as well as a healthy kidney.
Have you considered writing a post about your experience as a person with both diabetes and kidney failure?
yes but only at one transplant center for the moment. I live in california so I’m on UCLA’s list as of 2017. I’m trying to test for a dual transplant kidney/pancreas at Scripps in San Diego who will do it for T2s. UCLA only does it for T1s. Also the wait list for a dual transplant at Scripps is only 1-2 years. For just a kidney alone, it’s 7-10 years at UCLA, 4-9 years at Scripps. The main focus is to try to stay within california because I have medi/medi or Medicare as my primary, Medi-Cal (CA’s version of Medic-Aid) as my secondary, so they will pay for the surgery. The only out of pocket for me would be lodging since the transplant team wants you within 5 minutes away for the follow up visits: doctor visits, x-rays, further blood tests. If I go out of state like to the Mayo Clinic in Arizona, Medicare only pays 80%. Found out the 20% that I would be out of pocket is about 10k but that’s not including lodging