Had A Urodynamics Procedure Today

I saw my urologist today, and after reviewing the urodynamic I had done, he thinks there's a 50/50 chance that reaming things out might get me back to peeing like a normal guy. I am skeptical. I got concerns that if I stress the detrusor muscle, I'll be back to Square One and would have lost the supra-pubic cath I got. The only motive I have for even considering it is that being catheterized means that there is always bacteria colonized on it, rendering any urinalysis valueless. I really hate the loss of that diagnostic tool.

He is going to review his notes from the 3 times he's been up there to see if he got detailed on what he saw. I'm also gonna try to get UVA Health Systems to send him the report from when they did the urodynamic back in 2021. I'm pretty sure I already put in the request when I first went to this other practice, but have no way of knowing if it was done. Perhaps I'll show up in person and sweet-talk someone into printing it out for me.

 

I put in a request for my detailed urodynamics records, and they were available for me to download within a couple of days. Now I got to figure out how to get them to my urologist. The file is over 25mb.

Regarding my struvite coming back: I don't normally take meds without being directed by my doctor, but I've got a supply of bladder antibiotics (Macrobid) from the year I was taking a daily maintenance dose along with the gentamicin instillation. Since Macrobid is not broad-spectrum (only operates in the bladder) and since I was already on it for so long with no side effects, there's no risk in my taking it short-term. I started yesterday and it halted the sediment production immediately.

I'm thinking I will take a full 7 day course along with the gentamicin, and then finish out this cath cycle (another 10 days) with just the gentamicin. I may repeat this method for the next few months and hope that my system rights itself and I can go back to just the gentamicin. I have a urologist appointment in a couple of months.

I first discovered Macrobid from a blog I read by a guy who had a similar issue. He had addressed his problem in a similar manner for years: when he saw the sediment beginning, he took the antibiotic for a few days to halt production, then he stopped until the next event. At least for him, the periodic dosing did not cause resistance to build up.

 

I went in today and and a nurse walked me though the process of swapping the SP catheter myself. It's a piece of cake, and is so much easier than self-cathing. Once I get the supplies, I'll not have to go to an ER if the thing plugs up in the middle of the night.

She is going to call the doctor to get permission for them to swap the cath every 3 weeks rather than every 4 weeks (he's out of town/on vacation.) I told her that I've sometimes seen sediment start at the end of Week #2, and while a 3 week cycle would probably avoid a catastrophe (so far I've made it 4 weeks), I would have peace of mind if I stayed on a schedule where they swap it every 4 weeks and I swap it once in between (meaning it gets swapped every 2 weeks.)

She said they don't like catheters being swapped more often than every 3 weeks due to the increased possibility of introducing an infection, and I reminded her that if I have to self-cath, I was gonna incur that risk hundreds of times a month, AND often be doing it in public bathrooms. Hopefully I prepped her to make a good pitch on my behalf.

 

I have. You'll find the story in this thread.

 

I wondered about that because my urologist said that some folks reuse their caths, and I was told I could do that with the 60ml syringes I use to instill the gentamicin. The primary problem is that my catheters are full of sediment. Dunno if boiling would get rid of it. Secondarily, some nurses balk at letting me take them with me (as I've done to inspect the level of sediment.) I sent a script request on the patient portal. If there's a delay, I'll tell them I need to swing by and pick up a couple of caths.

When talking to the training nurse, she said they don't like swapping caths any more often than every 3 weeks because each time incurs the risk of infection (I want to say on a monthly cycle with them and do an at-home swap in between, making it a 15 day swap cycle rather than 21 days.) I've yet to ask why self-cathing hundreds of times a month wherever you happen to be at the moment (public bathrooms) is less risk that swapping a Foley 2x a month in a controlled setting. I gotta be careful to not be argumentative. It is sometimes my Go-To place.

 

...and you keep them fully submerged in 70% alcohol? I was wondering about that part, and I didn't pursue it with the doctor. After boiling the stuff, you can't put it in a non-sterile/unsanitary Ziploc bag for storage. I assume you can reuse the container of alcohol for some number of future catheters.

As a side note, I called the medical supply place to have them remove the catheters from my order so it will ship. I got an email that they removed one of the two caths I ordered, but not the other. I called them and the guy said that the second cath was not marked as "Requires Prescription." I went on the product page and it's marked as such there. So I'll let their system crank overnight and see if my order is still on Prescription Hold or if it gets released. If it gets released, I'll place another order before they plug the hole. The only issue is that these caths are anti-bacterial and cost $16 versus $1.

 

I got back from shopping and saw a message from my urologist. He sent a script in for the box of a dozen caths plus the 2 anti-bacterial ones, plus 12 refills.

The only thing I forgot to ask for was a script for Lidocaine, which they usually apply for a swap. I've encountered 2 nurses who do not use it all the time and I was fine without (for the SPC), so this is not a deal breaker.

I have an appointment next month to discuss the March 2021 urodynamic results from UVA he received, and to see if I want the procedure that will give me a 50/50 shot as some normalcy with urination. I'll also see if he has major heartburn with me routinely doing a mid-month SPC swap.

 

So I did my first supra-pubic cath swap at home today. The only nail-biting part is deflating and inflating the retention balloon. Other than that things went fine. From beginning to end (laying out supplies, scrubbing up, etc) it took a little under half an hour. Next time should go faster.

This swap is 2 weeks after my most recent one in the clinic. There was no evidence in the catheter of any sediment starting to form. I was curious because since the sediment started up again in June, I would sometimes catch a crystal in the strainer as early as Catheter Day 13, and I had no idea if that was the beginning of sediment forming or just when a piece happened to make its way out. When I first started have crises, the cath would be hard-stopped on Day 14, so the gentamicin is still keeping things under control...just not as 100% effective over the 4 week period as it had been before.

Another thing I noticed a couple of months ago is that the strainer was mineral-encrusted. It was pretty thick. It has subsided a lot to the point the strainer now only gets slightly stained by the end of a 4 week cath cycle. I swear it's the oxalate that skyrocketed in my system (went from a steady-state 35mg/day to over 80 and recently back to 55) and that I am certain came from my unsoftened water. I cannot find anything on the web to support this "it's in the aquifer" theory, so I sent an email to a local guy who recently tested my water and asked him his opinion, but I've not received a reply. I'm still wondering if there are not lingering effects from that hard water jiggering my chemistry, and it's working its way out of my system. I've also notice my kidney aches greatly subside.