Last post Thu, Feb 28 2008 9:57 AM by Carlotta. 3 replies.
Hey, I just stumbled upon this site and was a little surprised! I have a few questions. To make a long story short, I have a genetic kidney disease that there is no cure for. Its called Cystinuria. Since 1999 I have had 39 surgical procedures to remove kidney stones. Some of the surgeries have gone up the urinary tract, but lots required tubes to be placed in my back. As a result, I have a lot of scar tissue. The muscles over my kidneys have gotten worse and worse over time. Even when I don't have a lot of stones, I still have a lot of pain. I don't have insurance so I am forced currently to go to the county hospital. Its not exactly the best place for people with unique problems, or anyone legitmately needing pain medicine. I've seen and heard lots of people begging for pain meds, and I know there are lots of young people now days abusing them. I'm only 23, but I've been sick since I was 15. I have a hard time explaining to the doctors why I have pain when I don't have lots of stones and the pain meds are being rationed out like gold at this point. My muscles in and around the surgery sites just constantly lock up. Sometimes if I stand up too fast, I literally fall. I have gotten so frustrated over time, because I know pain meds can be dangerous, but I'm wondering exactly how many surgeries I have to have before someone considers me responsible? At times I go 4-6 months without asking for meds, I don't like taking them, but when I need them I need them. I show them my back, so they can see my scars, but it doesn't seem to phase them. When I have stones its a simple cat scan to prove the culprit of the pain, and its easier, but when its just muscular pain I can't really "prove" anything. I'm applying for disability, I've already been turned down 3 times and this is my 4th try, I'm going to involve a lawyer this time. So hopefully I won't always have to deal with these insensitive doctors and the county hospital...but until then does anyone have any advice as to what I can do? I've been told to see a pain management clinic but the one at the county hospital only does steroid injections, which wouldn't help me. So until I can afford to pay out of pocket to see one elsewhere, I'd like some advice if anyone has any suggestions. Thanks for your time.
I have been a posttransplant patient for almost 5 years now. All I can tell you is you need to ask about dialysis or transplant. It would deffinetly make you not hurt as much.
I have had multiple doctors, and discussed it with all of them. They won't even entertain the idea for now, because its not "absolutely necessary". I could understand if I wanted to go on a list ahead of people who were already on dialysis and in immediate need, but I don't. I have lots of family members and friends who would be willing to be tested, that wouldn't otherwise be donating. They preach about how harsh the anti-rejection drugs can be...as if constant stones and medication isn't harsh. Sometimes I think we are fighting a never ending battle to get doctors to see things from our perspective. How many meds do you take post transplant? Do they have any side effects? How long ago did you have your transplant?
Hi,
I am so sorry you are having so much difficulties. I have a chronic kidney disease and it is called IgA Nephrapathy. To answer your question, my advice is to call the Kidney Foundation in your city or area. They can give you full of advice on your problem you are having. If you don't have a kidney Foundation in your area, then call the National Kidney Foundation and their number is 1-800-622-9010. Good Luck!
Signed,
Carlotta
