Hi, my name is Sharon. I'm so glad to find this forum. As of Nov 2009, my right kidney functions at 19% and the left at 81%. It all started with a stone in 1985. I am now almost 55 and when I stand on my feet it feels like the right kidney is being pulled down, it's torture to ride in even the smoothest car. Can no longer drive or do my own grocery shopping, both increases the pain very much which never goes away but most of the time if I can prevent putting any strain on it the pain level is pretty low. I have had to fight my doctors, since day one. On everything including my 2 life threatening reactions to iodine. One urologist told me to my face he expected me to die from iodine if necessary! Couldn't believe my own ears lol. And this sort of thing still goes on. I have never even been sent to a dietician. 2 yrs ago when I brought that up they looked at me with total shock that I would even know I should have been. In April 2009 I also started having problems with Gastroparesis. That first year this hit me 2 - 4 times per month. It causes me to vomit almost non stop for 2 days. No doctor would listen. It causes severe dehydration which causes even more damage. My last male dr insisted it was menopause even though he was fully aware that I had a total hysterectomy in 1988, I reminded him but he would not budge. Went to a local ER twice, they insisted all it was was a kidney infection! Would not listen to why I had that infection. The 2nd dr listened to my stomach but made no comment and ordered no tests. I finally diagnosed myself, my dr was very impressed and agreed with me. I have learned my triggers with the Gastroparesis but I feel I need an in home IV when I get this. Don't know how to get them to listen. Gastroparesis is usually caused by diabetic nerve damage. My mother was diabetic for about 40 yrs, over 20 on insulin. Many of my relatives have it. There is a blood test the dr runs sometimes, cant remember what its called but she says its high. Now she refuses to order me a diabetic test kit so I can show her the results at my next appt. Just dont understand that. She also refused to order a walker. I cant stand for more than 5 minutes, at the very most. Wont listen, does not care. I am also very worried about dialysis. I was told in 09 by a urologist that its a very good possibility for my future. When I have that Gastroparesis, I put out only about a tablespoon of urine every 3 hours or so and it terrifies me. But still, none of the docs will listen. I also was supposed to have the right one taken out in 09 but that Gastroparesis kept hitting me over & over, I felt my body was too weak for major surgery, they wouldn't listen of course. I cancelled the surgery with at least a week notice, then a few months later I get a letter in the mail saying I have been dropped as a patient. Didn't know at the time that it meant I would now have to travel out of town to see a urologist! GEEZ! None in this town are ALLOWED to see me and I just don't understand why. I've been living what I now call My Medical Nightmare since Feb 1985 and I really just no longer know what to do. I'm in the process of typing up the whole story, have my plans for it too. Not gonna keep quiet about it anymore.
Forgot to mention, my left one is now plugged by a stone and is loaded with cysts. Now I feel I would be on that machine if I had let that dr take the right one out and I had the feeling that the left one was getting bad for at least 15 yrs
Hi, Sharon; my name is Barbara. I'm on this web site as a spouse, caring for someone with Kidney Disease. I have 2 nieces, with Type 1 diabetes & I know that there's an At-Home test kit for diabetes...not just the supplies. AllTestKits.com carries these tests for an A1c Test. I hope this helps (the kits are approx. $25.). As far as Drs. go-- hang in there & KEEP LOOKING for 1 who will listen! I faced a similar situation, 25 yrs. ago, ended up in the ICU for over 2 months, because all the Drs. said that I was fine. NOW, they listen! Please, don't let them do this to you!
With My Understanding,
Sharon, I am sorry you are going through this. It can be very hard to find the right doctor. I had been a diabetic for many years without the drs. even suggesting a creatine clearance test. I finally had to go out of town (about 1:20 minutes away) to find the right Dr. She has been great and managed to keep me off dialysis for 2 years and even got me on the transplant list. Keep looking for the right Dr for you. I am very sorry you are going through all this. There are great Drs out there and I know you can find one. All my best for you.