It has been a rough year. Last Feb I started with Gross Hematuria and clots, with pain like a stone. The first urologist did the ureteroscopy and found a closed stricture near the UPJ. Had a stent for 13 weeks, 10 of which the hematuria continued with terrible pain the whole time. First week went in hospital for Ascites. Afterwards, as I was being released, I asked the doctor if we were going to go up to the kidney to find where all the blood came from. He walked out without saying anything.
June/July were great. My wife and I averaged 60 miles a week on our bikes and even did a 26 mile ride in just over 3 hours.
September pains began in the right flank. Found a new urologist. First test nuclear renal scan; results 100% function both sides and NO stricture. YEAH! This "painless" test HURT on the right side where the stricture was closing again. Loads of other tests and multiple uretoscopies and biopsies, I have a stricture several centimeters long as well as abnormal cells in both the ureter and kidney.
The pain of the stricture itself and of my 2nd, 3rd, 4th, and 5th stent got to be too much and I had to resign my job (Math teacher). This second urologist told my wife in the recovery room we may want to see a pain management specialist. I did not know this meant he wanted to dump me as a patient. By email, "Once you have your pain under control, I would like to revisit your kidney, and consider our treatment options."
Now, I've still got the 5th stent inside me, but I'm not going back to him!! I am trying to get into Emory, but they want to review the records before they accept me as a new patient.
The only way to minimize the pain is to sit still all day. If I walk over a couple of hundred steps the stent starts hurting. In case I cannot get into Emory, does anyone know a good doctor for uretal reconstruction and robotic surgery?