I've got my questions.

Is it time to start asking the tough questions? 

I've had a nephrostomy  in place for about a month. This is a tube running into my back that connects my left kidney to a collection bag pinned to my underwear. I just had something called a Renal Scan where they injected me with some radioactive dye and then watched it collect in the kidneys and bladder.  The collection bag has remained pretty much empty. The renal scan showed "nothing" in the left kidney. 

I was in perfect health when they detected the cancer. i exercised regularly and ate sensibly. I didn't smoke and didn't drink. I was probably healthier than I had been in 40 years. My kidney function was well within normal range and unchanging through the chemo. After the surgery it fell a little (creatinine elevated) .  This led to the radiology work where they measured flow from each kidney and found very little on the left side. They discovered that the uriter from the left kidney was obstructed where it had been attached to the new bladder so they did the balloon thing to break out the scar tissue where the tube met the neo-bladder and then placed a stent to keep it open. After a week or so they removed the stent and injected some dye and found it was flowing  "like gangbusters". But this kidney was already swollen by then and they figured it was only about 18% operational. The creatinine stayed level (didn't go down like we were hoping) so they decided to watch and wait for improvement. Perhaps the kidney would recover now that the back-pressure had been removed. Hopefully it was not too late. 

Now here we are. Apparently it was too late. What happened? I don't know. Could it have been prevented? Maybe if we would have detected the obstruction sooner - who knows.  Which leads me to my question. "Who knows?" It seems to me that nobody really knows much about these neo-bladders. Yes, they know how to make them. They have that procedure down very well and the success rate is amazing considering what they do. But what then? How do you live with them? How does it change the rest of the body? How does it effect the other bodily functions and the other organs? How does it change the parameters of care (or whatever the medical profession calls this). It seems to me that the attitude is that the neo-bladder is a cure for this dangerous form of cancer. And it is very affective so here we have a cure for this cancer. Great. That's it, we're done. Another success for medical science. Why should we waste our time (and money) looking for alternatives to this wonderful procedure. We have other fish to fry. 

Okay so people who get neo-bladders (or urostomy's for that matter) don't die from cancer. They die of kidney failure, or infection, (or 'shame'), or some other side effect of the alternative bladder.  This death shows up on a whole different column in the tally sheet. It is applied to a different statistic. It's a whole different area of research with much less public interest and, therefore, much less (if any) funding. 

So how do we keep people with neo-bladders alive? I believe the answer, unfortunately; is all too often; "Neo-what?" Think I'm kidding? Next time you're talking to your doctor ask her/him that question. 

If you have been following this blog you now that I have been asking these questions and it seems to me that I've been getting different answers - often from the same doctor.  Mostly they tell me not to worry. I have one good kidney and that's all that a body needs. Recently I told this story to my brother who is a retired surgeon. I told him about the failing kidney and he asked how they knew it was failing. I said from elevated creatinine. But I said they aren't worried because my right kidney is working fine. He said if my creatinine is high the right kidney is NOT working fine. 

But how can I complain. How can I question my urologist/surgeon. He cured me of cancer; he saved my life - so what's my problem. I know; what have I got to cry about - I'm alive!  Well, it's my party and I'll cry if I want to... 

I am scheduled to meet with my doctor in a couple days to have the nephrostomy removed and to discuss the results of this and the other test. I will ask my questions.