I will make this as short as possible. I am not new to HealingWell.com but just new to this particular forum. I just need to get some answers if someone out there can help me please.
I have had kidney surgery back in '74. I had done very well up till about 20 years ago when there were spotted several cysts on my kidneys (both) and was asked if I had PKD? I didn't know what that was till they explained it to me. No problem! They were small cysts and didn't cause me any difficulites at the time.
However, in 2008 my pain started again. I constantly had bacterial infections taking all kinds of antibiotics with no good results, and had blood in urine in all tests, and had occasionally backup of urine from the bladder to my kidneys. (Besides the never ending pain :( ) Okay, I was sent to a urologist but the Nurse Practitioner took over my case and sent me home with no antibiotics, no tests and told me to go back to my PCP and forwarded her notes to my PCP saying I have renal disease and some kidney stones, and cysts on my kidneys. I didn't worry about it then in the last five months I started having some more serious pain and blood in my urine,etc. I get referred to the "same" Nurse Practitioner for some reason after my PCP said he will never send me back to her again. (this may have been a mistake by one of his staff, don't know yet) The nurse practitioner sends me to a Urologist in another city requesting a test to look up into my bladder, and her nurse never sent the results of any of the catscans, MRIs or sonogram. He in turn did the test in my bladder, and then said there is absolutely nothing wrong and he was not told about any tests showing cysts or stones, nor any blood in the urine. Once again no antibiotics, still having sickening pain that won't go away, blood in urine and feeling sick all the time. I am ready to just give up.
All i want is for one doctor who specializes in Kidney diseases to monitor me and keep his eye on these cysts before they squeeze my kidneys dry. :( At least i will feel better about having someone to go to when I get these flares that lasts for months. I would also like to know what I can do to help myself to live better with PkD. Does anybody out there have this disease and is there a diet or somethig i can do to help myself be healthier as I am having many issues with this disease. It's awful