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Tuesday, August 6, 2013

And now, Bladder Trouble...

Yesterday, I took Bob to see the urologist. This was strictly a follow-up appointment, and I didn't have a lot of concerns, though I wanted to ask about our condom catheter blow-out problems and discuss his medications.

Bob had gotten a letter last month from the urologist informing us that his urologist was now retired and we would be seeing a new doctor. So I'm thinking, new doctor, maybe some new ideas. As Bob has been on several different bladder medications and none of them really seem to work that well.

So, anyway, we get there and the new doctor zooms into room and introduces himself. And I mean he zooms! He's this little Asian fellow and he talks really fast. He moves really fast. And I am mean really, really fast. I had a hard time understanding him and had to keep asking him to repeat himself. And the guy couldn't seem to sit still and kept jumping up and down and from subject to subject.

The first thing I ask this new doctor is about Bob's medications. And I pretty much just get the question out of my mouth and the doctor announces, "Let's do an ultrasound!"

Okay... though I'm not sure what brought this on. And the doctor zooms out of the room and the nurse comes in with a very small, portable ultrasound machine. When the nurse is finished, the doctor zooms back into the room, and he says, something like this:

"He's retaining urine! The ultrasound shows 300 cc though usually that ultrasound is not right, usually it underestimates, so if it's saying 300 cc it's probably really more like 500 cc and that is dangerous. Very, very dangerous! He could go into septic shock! That could be fatal! He's going to need intermittent catheterizations! And he's going to need a pacemaker in his bladder or an indwelling catheter, the pacemaker only has about a 50-50 chance of being effective, I can give you a DVD to watch, but we could also do a supra-pubic catheter! Do you know how to do an intermittent catheterization? You'll need to do this four times daily! If you collect more than 200 cc each time, then we have a real problem! All stroke survivors ultimately end up with this problem, I see it all the time, but this is bad! I've never seen it quite so bad!"

OK, by now, I am in shock. And don't know what to say. Because this has caught me completely by surprise. Plus, I can't get a word in edgewise. I do manage to sputter something about emptying around 2000 ml from the bed bag every morning, so it seems like he is passing fluid--and the doctor interrupts me with something like this:

"It doesn't matter how much urine comes out! It's how much stays in! The kidneys can operate at 20% of their capacity and you wouldn't even know anything is wrong until it's too late! Then it's septic shock! Which will be fatal! Or needing to go on renal dialysis! Because the kidneys shut down! And it doesn't  matter how much comes out! It's how much is retained! If his kidneys shut down, he'll die! Understand? And you'll need to do an intermittent catheterization four times a day, to empty his bladder four times a day! And, as I stated before, if it's less than 200 cc, you don't have to worry! But if it's more! Well, that is dangerous! Very, very dangerous!"

Me, I'm still in shock and I don't say anything. Truth be told, I'm probably looking rather stupefied. But I'm thinking, four times day? Intermittent catheterizations four times a day?!!! Holy crap. Because that sounds like a real pain in the butt, not to mention, how expensive is this going to be? Because those catheters are single use only and just ten of them cost around $30.00 for the co-pay. And what about the condom cath? I'd have to remove that four times a day? And those are single use only.... and septic shock? renal dialysis? jeepers!  This can't be happening.

And the doctor says something like this:

"You look like you don't believe me! Don't you believe me? You want to get a second opinion? Go and get a second opinion if that is what you want! But don't take too long! Because this is a dangerous situation!" Then he opens Bob's chart and shows me the results of the urodynamics test that Bob had done two years ago and he points to some pink colored squiggles on the chart and says, "See this. This shows his bladder is paralyzed. And this is not going to get better. It can only get worse. Worse and worse then it's pacemakers, I can give you a DVD, or a catheter or dialysis!"

Then Bob pipes up and says, "Hey, one, two..." and he's counting on his fingers.

The doc says, "What's he saying? What's he trying to say?"

I say, "I'm not sure."

Bob, still counting on his fingers, says, "One... two.... one... two... how much?"

The doc says, "What's he mean? What's he mean?"

Because I've become an expert on Bob-speak, I say, "I think he means he just urinated 1 to 2 hours ago."

Bob says, "Exactly!"

The doc says, "Well, that doesn't matter! It's not what comes out! It's what stays in!" Then the doctor stops and looks again at the chart, then he says, "Vesicare? He's taking Vesicare?!"

Which is the overactive bladder medication that the old urologist had prescribed.

And the doctor says, "Vesicare can cause urinary retention! Take him off the Vesicare immediately! Then bring him back here in a week, we'll do another ultrasound. Maybe it's just the Vesicare. Let's hope it's just the Vesicare! Vesicare will stay in the body for 72 hours so bring him back in a week!"

And I say, "What about the four times a day intermittent catheterizations?"

He says, "Don't worry about that right now! It might be just the Vesicare! We'll know, next week!"

The doctor zooms out of the room. The nurse comes in and drains Bob's bladder and gets 400 cc out. And we make an appointment for next week.

All I can say is, jeepers, and pray it's just the Vesicare...


Anonymous said...

Hey Diane,
Just checking in. I'm printing out updates from your blog for my mom and dad. You are amazing! Sending love, prayers and positive energy to you from your family in WI.
Your cousin Tami

Anonymous said...

Jeepers for sure. I too hope the cause of the retention is the Visicare and not due to the stroke.
However, I'd definitely get a second opinion before proceeding with any of the options tossed at you by the new doctor.

As I read and re-read the blog, I kept thinking, "What??". In my opinion, much of what he said makes sense, but much of it I also question.

Lots of hugs and prayers for you both. Dan

Anonymous said...

I found myself reading this really really FAST! WTF? lol.


Tami said...

Hey Diane. We deal with bladder problems with Rob & are waiting to meet with a new urologist (can't stand the old one). Every time we go they do an ultr-sound on Rob to see if he is retaining BUT they ask us first how long ago he has urinated & they try to make him go because obviously if he hasn't gone for a while there will be urine in there!!! Secondly, Rob is on vesicare - to help him keep from peeing. So hoping that that is Bob's only problem. The reason I'm switching (well a few of the reasons) is bc the old urologist won't give us a direct answer. Your post reminded me of him. He has changed Rob's meds 3 times - says that basically there are 12 on market - he has no preference. Ummmmm then what do I need you for?!?! This last time he suggested catherizing at night if we wanted, Botox to the bladder if we wanted or inserting a mall device in his back that they control to help control bladder, if we wanted. And he claimed it wasn't invasive. I was like - what are the side effects & what are your recommendations?!?! Oh, whatever we felt. Well, I told him we would discuss it, I made our follow up appt like nothing was up & the next day called our neurologist for a referral to a new urologist! I seriously hope this new doctor is better for you next time!!!!!!! Xoxo

Elizabeth, John and Jack said...

I had this about a year post stroke. I ended up with a chronic uti, that progressed to a kidney infection. The solution for m
e was "crudeting" the bladder every 4hrs and every time I peed. My doctor taught me how to do it. It's much less invasive than straight cathing...that will lead to infection long term. I was also given the vesicare, but I didn't take it for fear of increased retention, as the md suggested. Best wishes to you both.

Jenn said...

Interesting - Dan and I are on the same page - and Tami - good info there. Sounds, too, that Visicare and related drugs are problematic in themselves and deserve serious evaluation before use (or, in this case, continuing use). Too much intervention? Sounds perpetual once it begins. oy.

Hasna said...

LOL LOL... I laughed so much reading this. :D But you know, I have a gut feeling this doctor will be good. He talks so much! You will know all the.. why he's giving what, which most doctors don't say at all! So that's a good sign. I hope Bob won't need intermittent catheterization... coz after a while it becomes a pain. Best of luck, Dianne, sometimes I marvel at you. How do you keep doing this continuously? You must be needing rest... God bless.

Barb Polan said...

Praying it's just the Vesicare!!