Male 58 y.o. - Sorry up front for the length of this post.
Last year I entered the emergency room weak unable to stand. They ran tests and saw that my creatinine level was a 21; obviously I was in renal failure. They performed an emergency nephrostomy and did some imaging. The limited imaging (no contrast due to the renal failure) revealed a bladder tumor. They tried to do a biopsy but I started bleeding and I also most didn’t make it off the table. They nursed me back to some strength for 4 weeks and recommended a radical cystectomy (removal of bladder). With the nephrostomy my kidneys seemed to rebound quite a bit; creatinine levels dropped to around 3.
My local doctors did not feel they had the experience to do the radical cystectomy so they referred me to Wake Forest. The day after I was released, I drove to Wake and met with the referred surgeon. He examined me, looked at the images, and said I would not survive the operation. Instead he said to go back home, get chemo and radiation to shrink the tumor and gain some strength. Back home, I met with an oncologist who disagreed with any radiation saying it would put any future operation at risk. He agreed with some limited chemo and I started it (Gemzar).
I drove to chemo for about 4 months; was feeling as good as you can on chemo. At the end of the last session I couldn’t stand, was vomiting every 3 minutes and was spiking a fever of 102.5. Later the next day I was back in the hospital in full blown end stage renal failure and in dire need of dialysis. After 4 more weeks of hospital care I was released.
I drove back down to Wake and got the “this is one of those times that a doctor has to give the patient bad news, I’m sorry’ speeches. He told my wife and I that a radical cystectomy was not an option, that I had about 6 months to live.
After getting home and thinking about, we decide to get another opinion. I had been living with the nephrostomy and dialysis for about 6 months and it was no picnic. I was still urinating but both the urine and the urine in the neph bags was very bloody and full of clots. At this point urinating was incredibly painful, I had incontinence, and was running to the bathroom every 15 minutes 24/7. I had not had more than an hour of contiguous sleep in over a year. Sitting in a dialysis chair for four hours was torture.
I got an appointment at Duke University and made the 5 hour trip. On the first visit the doctor ran a camera into my bladder; you could see no bladder wall at all, it was all tumor. He immediately scheduled a radical cystectomy; the next week I checked into Duke on a Monday. They preformed a radical cystectomy and gave me a urostomy. They found no cancer in the margins, the 57 lymph nodes they removed were all clean, prostate removed and was clean. They found a grapefruit sized sarcoma in the balder and asked that I donate it for further research.
Surgeon mentioned that if I had not undergone the chemo, chances were that I would not now be on dialysis; but frankly I am happy to simply be vertical at this point. I walked out of the hospital on Friday and drove the 5 hours home. Not only had Duke saved my life but the quality of my life increased 10 fold; sleeping was almost orgasmic. My wife of 35 years was incredible through all of this and I would not have made it without her.
This year I’ve have had my 3 and 6 month cancer screenings and last month they found a few shadows on my right kidney. Since the radical cystectomy and urostomy I have had blood in the urine about every other week. The shadows on the kidney disappear/move over several images so it appeared to me to be blood clots and not malignant masses. But of course the doctor wanted to biopsy. A few weeks ago they preformed an operation and tried to get a camera and biopsy up through my stoma. Fail (they couldn’t find the ureter opening.) Next day they tried to get a biopsy by going through my back with needles and under ultrasound. Fail. Next day they went in through my back again using CT imaging, finally got a good sample.
Lab results came in this week and they were negative, no cancer. But this leaves medical mystery, why am I bleeding. My Duke doctor still feels it might be cancer. His options at this point are
1. Wait and see
2. Do another operation and get a camera in my right kidney
3. Remove the right kidney
I currently have limited kidney function; enough so that I don’t have to be particularly careful with fluids and eating. I am on no meds, and am fully ambulatory. I have no problems doing physical tasks such as mowing the grass or chain sawing fire wood. In some ways I am leaning towards ‘when in doubt, cut it out’ but fear that my other kidney might also be bleeding. I also am protective of what kidney function I have and don’t want to screw it up. I ran up over $1.3 million in medical costs in the last 15 months and have greatly impacted my family on several levels. I am also weary of medical procedures. Dialysis is a drag but a small price to pay for being alive.
So I am considering getting another opinion on my bleeding situation. I am having some trouble finding doctors who have a lot of experience with people in my situation. Has anyone had this kind of bleeding after these procedures? Anyone have any ideas on what it might be if it isn’t cancer? Anyone have any recommendations on a doctor or facility?
I am down to some long shots here, stuff like I am bleeding due to the Heparin given during dialysis. I have another long shot theory involving developing scar tissue in the ureter, causing pressure and a kidney fistula (plenty of holes in my kidney from various procedures). As you can tell I am groping for a possible explanation.
Thank you in advance for any opinions, experiences, and input.
