Another shoe drops

November 20, 2017

Hi, Tracy.
Just when I think I know what's going on, new information pops up. Apparently my UTI is a UTI after all, but maybe no longer.

In my last post I said the problem with my urinary tract infection was that it wasn't an infection, but more likely the result of irradiation, and that I had been prescribed medication. Well, the story has changed.

First the information was that a specimen showed no indication of bacterial infection. The doctor used a cystoscope to peek into my bladder and found it inflamed, theorized it was from radiation and  authorized medication to calm things down. Before his examination, my symptoms had already calmed down and after the exam they went away almost entirely. I concluded that the meds were likely keeping at bay a problem that was already diminishing.

But then, after I passed the information on to my radiology team, I heard back that I indeed had an infection after all -- involving e-coli! And then the urologist confirmed that. However, before he he had sent a camera up my urethra to study my bladder, he took the cautionary step of an antibiotic injection in my hip to prevent potential infection.

Put that all together, and now the theory is that I indeed had a UTI, that the radiation from last spring was not the source of the problem, and that the antibiotic I was given as part of the examination is what took care of the UTI.

So I purchased, a month's supply of bladder-soothing Elmiron for $40 (cost to Kaiser Permanente: $750), and I only took a few pills before the doctor said don't bother, wait and watch.

And that's where I'm at. Things have calmed down. I store my pads and diapers for the next crisis. I will just sign off with the same moniker as the famous author of "Yellow River" --  call me I.P. Daily.
Love,
Dad

Cystitis

November 13, 2017

Hi, Tracy.
My urologist may have solved the mystery of the symptoms I've been experiencing that are similar to a urinary tract infection (UTI). It appears that my bladder is inflamed for reasons other than a bacterial infection. The most likely explanation is a residual effect from the radiation treatments I experienced for eight weeks in February and March.

For the past couple weeks I've had symptoms; then they disappeared; then they reappeared. On one occasion, I was passing cranberry-colored urine, and then it suddenly cleared up. And I do mean suddenly. At one moment urination was painful and bright red, and then it wasn't. This past weekend I decided to cancel travel plans in December because I was suddenly needing to urinate several times a day. Yesterday I stayed home because I was not willing to leave the house. And I have been wearing the adult equivalent of diapers.

This morning I saw the urologist, who gave me a dentamicin shot in the hip to fight possible infections from the procedure that soon followed -- the uncomfortable numbing of my urethra, and then the insertion of a foot-long tube with a camera on the end, that slipped past my prostate and into the bladder, to take a look. This procedure is called a cystoscopy, and it uses a cystoscope, a tube with a lens on the end. It has about the thickness of a catheter. It stung a little, but with the anesthetic squirted in ahead of time, it wasn't much worse than the hot sensation that occurred during urination. In fact, while the cystoscope was entering, I felt like I had to pee. Afterward I did, comfortably.

 Normally, the bladder appears pink, but there were places where mine was red -- inflamed. In the absence of any bacteria, the most likely explanation was collateral damage from radiation dating back to the end of March. The painful symptoms prior to and during urination probably fall within the definition of "referred pain," which means one part of your body is experiencing discomfort that is expressed at another point.

The meds I'm going to take to deal with the inflammation are not inexpensive.  My prescription for pentosan (a.k.a. Elmiron) is $750, but because I have health insurance I pay only $40. Pity those who aren't covered.

PSA update

Buy the way, kiddo. I got more information clarifying what my PSA scores will indicate from now on. My PSA will continue to rise from it's present level until it reaches a new baseline. After radiation, you'll recall, it was less than 0.02. It is now 0.4. My understanding is that it should level out at about 2 or whatever is my "new normal." And then it should stay there. If it doesn't, that will get our attention.

Love,
Dad

PSA score, 7 months later . . .

Nov. 3, 2017
Hi, Tracy
What I thought is a urinary tract infection apparently isn't. My urologist says my urine culture proved negative for a UTI. However, I've been prescribed three doses of Monurol instead of the single dose I took Oct. 21. I take these at two-day intervals. So we'll see.

And now for the big news: When they drew blood due to all my excitement yesterday, they used some of that blood to test my PSA score, and  the results are listed below, showing what the score was historically. You will recall that my radiation treatment ended March 28, 2017.

Lab Results

Component     /  Value Date 
PSA 0.400      11/02/2017
PSA LESS THAN 0.02 04/25/2017
PSA 25.0         09/13/2016
PSA 19              05/09/2016
PSA 16              02/17/2016
PSA 12              09/02/2015
PSA 10              02/23/2015

You can see from these results that the PSA peaked at 25 on September 13, 2016; dropped to 0.08 % of  that score on April 25, 2017; then recovered to 1.6 % of that highest score by November 2, 2017.

Here is what the doctor had to say about the score and rebound:

You may get some increase in the PSA as the testosterone levels get back to normal. Once the PSA level is steady, then a recurrence would be consider your nadir stable PSA plus 2. So, the PSA response it good so far.

The next blood draw to measure my PSA would be in March, 2018.

Love,
Dad

It's baaaaaaack. Has UTI returned with a vengeance?

Nov. 2, 2017
Hi, Tracy,
In Jaws, the tag line is "just when you think its safe to go back into the water..."
Well, everything looked like it cleared up from the last UTI. And then that tingling sensation returned a bit this week, so I made it a point to stay hydrated. But I was noticing that there were these little Dr. Pavlov moments continuing. Just the thought of peeing made it happen. But if I moved fast enough, no disasters.

Until yesterday, when I walked to Seattle City Hall a couple times for a demonstration by the homeless community. Things got dicey walking home.

I woke early today and walked back downtown for the "die-in" at city hall, taking time to use the portable toilet outside city hall where the camp out was held last night. I photographed the die-in and headed home.

I can't remember the exact order of events, but they were exciting.  Either before or after I went to city hall I passed a lot of red urine and a really healthy blood clot. I went to urgent care, and a medic put an IV in my arm. I was given a specimen bottle. I had an empty bladder, so I hydrated in the exam room and he left a plastic bottle for the overflow. But when the time came, things happened very fast. Not all of the urine got in the overflow bottle, and only a small amount got into the specimen bottle -- but enough to test. I could barely stop peeing. The fluid was a cranberry red. After that session, I rehydrated, and later passed another sample, which was almost clear, and that's the way its been for the past 10 hours -- clear urine. No blood at all. Go figure.

This is really strange.

But the initial prognosis is another UTI. The technician told me the fact that the blood had been clotting earlier in the day was a good sign. I left there about 1:00 p.m., and walked to the downtown library branch for a short meeting. There is almost no tingling, although there is still some urgency when it's time to pee.

I'll be taking antibiotics, but the one they wanted to give me -- Monurol -- was out of stock until Friday afternoon. So I've decided to take it easy and not go anyplace special for a couple days until I have the antibiotic and things calm down again.

The medics took several vials of blood--enough to check my PSA levels for the first time since the end of my radiation treatments. I expect to have a consult with my urologist in a few days, and there will be more to tell.

Love,
Dad

P.S. Nov 3: Test results show  1,000-10,000 colony forming units of bacteria per milliliter in the blood.  Internet research (and who doesn't trust the internet?) suggests that the measure for whether I have a urinary tract infection is 100,000 cfu's. So maybe I don't have an infection, but in that case, what is going on?