- CASE FILE
Diagnosed with stage 5 kidney failure, not on dialysis. Four years of blood work and testing with inconclusive results.
ABOUT THIS CASE FILE
Stage 5 kidney failure.
Dissected carotid artery.
Blood clotting disorder.
In 2016 I was diagnosed with kidney failure. I have been in stage 5 kidney failure, but not on dialysis.
There are some really unusual things that don’t add up. It’s a lot to condense in a short email. I’m just in search of what’s really going on. I’m tired of living in fear.
- my GFR is a 10, creatinine is a 7. Everything else on my bloodwork is normal or below normal. I have almost 0 potassium which makes no sense in kidney failure. I am not acidic. I am not anemic.
- I have seen a rheumatologist, hematologist and I’ve been tested for autoimmune disorders. Each doctor says I have something but they can’t figure it out.
- i’ve had a biopsy of my kidney showing deceased, yet ultrasound x-rays CAT scans and MRIs show that there is blood flow and circulation .
- I have very little to slight swelling and that’s only if i’m on my feet all day. Although I do have tons of sinus issues ever since the diagnosis in 2016. I’ve had two surgeries and my nose is still clogged up to where I can’t breathe. We have tried numerous medications and the only thing that works is prednisone for temporary relief. I don’t know if these two things are related they just happened at the same time and still continue to get worse.
- In this process of testing for transplants and kidney failure I’ve had to go through several procedures including a liver biopsy which was failed. They thought it was cancer and a mass on my liver and it was nothing. I had continued bleeding for several months and to this day still have pain and can’t bend to the right side.
- In 2017, I chose to pass on a kidney and since then have been blackballed from the transplant list.
At that time, I was not ready and still confused about what was going on and still did not have a lot of answers. I thought it was best to give it to somebody who needed it worse than I did. Since then I have not been able to get in contact or continue being on the list. I’ve reached out to Vanderbilt for the bionic kidney program and never heard back.
I have asked for second and third and fourth opinions and I get mixed reviews. I’ve had doctors review my labs and bloodwork anonymously and give me contradicting reviews.
I’m trying to figure out if I really do have kidney failure or if I have a condition that just always causes my creatinine to be high. Since that is the only marker that is off on my bloodwork. I do have bruising cramping and sore muscles all the time like I’m in permanent rhabdomyolysis.
I am willing to put myself out there hoping I’m not the only one going through this. I see missed diagnosis happen all the time and it seems that I really can’t ever get my questions fully answered. Every time I go see my doctors, I’m the youngest person in there and I feel that I am being pigeonholed into what is the standard.
I have talked with several people in the kidney disease community. I also have talked to several people on dialysis. All their blood work seems very different than mine yet I’m supposedly worse off than they are .
Recently, I have seen a new hematologist. I have permanent discoloring in my legs and feet. The bruising is getting worse. I also recently had a blood clot. After more testing; I found out I have some clotting disordered. She reviewed my kidney biopsy too. After review, she said there were blood clots in there and signs of an auto immune disorder. But, she also said; you are not in kidney failure.
Hopefully this is enough information to get started .
That is 4 years in a summary. So, I’m just in search for what’s really going on. I have way more to add, but that can be in a future detailed dialogue if need be.