Sunday, September 29, 2013

Moment of silence - and then move on.

 One kidney has shut down. The other is holding it's own.

I met with my Urologist to discuss the results of the renal scan and the nephrostomy 'treatment'. He removed the tube and the bag. I asked my questions. He answered. 

To me, it seemed like a long time to carry around this nephrostomy bag that wasn't really collecting anything. The tape that was holding it to my back was peeling off - even the reinforcements that I'd added were getting weak - and I was getting a rash. So it was a great relief to get the tube taken out - but then again, not so much. My Urologist explained that he wanted to give the kidney the best chance to improve it's function by removing any restriction to drain off produced urine.  This back pressure - if there was any - could have been caused by either an obstruction (return of scar tissue blockage) in the ureter or by the "normal" functioning of the neo-bladder.

According to the renal scan my right kidney is now functioning at about 9%. Two years ago it was 19%. With this small a production this kidney may be more prone to infection building inside. So as we go forward, I should note any unexplained fever and/or back pain. Again, this kidney is not hurting anything by staying where it is but if it starts causing problems it should come out. This is a laproscopic procedure and not much fuss.

I pick up on words and reactions (body language) from technicians, nurses, and doctors. Perhaps too many. Too sensitive. A "Good luck." or a "Is that all all we're doing? (like "aren't we going to do more?"). I don't know.

I guess I've accepted the loss of this left kidney. So I turn the conversation to the remaining kidney. "The elevated creatinine means that one is not working right either, is it?"

"Creatinine is little high but that isn't the most important measure. The electrolytes [he recited a couple other tests that had been a little high and are now back withing range] and acidity are more important. This is what requires dialysis. Your levels are fine on those tests."

I talked about some difficulty in peeing at night - before bed or when I wake up. "Sometimes it takes a lot of work - and pressure - when I know there is more to come."

"Is it all the time?"

"No, every now and then."

"Some patients learn to self-cath."

 That shuts me up. "No, not that often."

I reminded him; "You said neo-bladders, by their nature, are hard on kidneys. Should we be talking about getting rid of the neo-bladder? Like putting in a port and start using a bag?"

"Oh, I wouldn't do that. I'd just do a [foley] catheter at this point. No need to make another port. And the remaining kidney is doing fine. We're a long way from that conversation."

He said he'd put in orders for blood work every month and have ultrasounds every [three months?] to watch this right kidney. Maybe my concern for my "remaining" kidney's welfare has made him a little little more concerned as well. Justifiably so??? Do doctors get so focused on this organ or the other that they loose the big picture - like life and death. I don't believe that for a minute but it's still good to talk and share feelings and fears.

We're a team here.

Before I go I want to say that I don't mean to make out my doctor to be uncaring or insensitive. Quite the opposite. He is very attentive to my concerns and questions. He is a vary positive person. Very up-beat and every meeting leaves both me and my wife feeling satisfied and encouraged. He is a very nice person. He has an excellent 'bedside manner'.

And I feel fine. My wife says; "You feel fine." (Implication is; "Stop whining.") Okay.

Monday, September 23, 2013

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.

Sunday, September 1, 2013

May God bless you...

A song on my brain this morning.

I woke up this morning with a song going through my head. This is pretty normal for me. It's usually a  'real' song but sometimes it's just a tune that I can't place in my memory. This morning it was "The Sabbath Prayer" from "Fiddler on the Roof". This is one of the most beautiful songs I know and what a great way to start the day. It makes me wonder what I was dreaming. 

Many years ago I was in the cast of a production of 'Fiddler' by the Children's Theater of Madison and that song gave me goosebumps every time we sang it. It still has the same effect when I hear it or think about it. "May God bless you, and grant you long lives..."

These days I get up early in the morning - usually before the sun - and a couple hours before the rest of the family starts rousing. This gives me time to go over whatever 'tunes' are in my head. Since my bout with cancer, this time has become even more important to me.  Recently I heard someone say that every hour we add in the morning is an hour added to our lives.  So even as beautiful as my dreams must have been, I am glad to be awake and alive this morning. I am glad to be ahead of the sun. I will soon enough have forever "... To sleep, perchance to Dream; ..."

"May the Lord protect and defend you. May the Lord preserve you from pain..."

Is it in your head yet? You could do worse.

You're welcome.