Had A Urodynamics Procedure Today

I went to my urologist today for the post-op visit. Unlike the prior doctor, he thought that my prostate might have contributed to the problem. He also said he could tell that my bladder was beat, and there are all sorts of "pockets" in it where some sediment might still be hiding. He mentioned something that I had wondered about: my bladder might have regained some degree of function because it's been given a rest-by-catheter.

Believe it or not (and I hate to type it out loud), I may have another urodynamic done to see where my bladder's condition currently stands. Then we can decide if there is a way out of this. My overriding concern would be that my bladder might die again at some point in the future, and if I have the SPC removed in the interim, I would go back to (a) being cathed the old fashioned way, (b) getting pressured to self-cath forever, or (c) go through another SPC operation. But that's a bridge I've not yet arrived at. Right now, I'm about at the place I was when I requested the first urodynamic...I need quantified data, not just assumptions-by-symptom.

 

Office exams entail a lot of discomfort for what seems to be subjective analyses. And sometimes these doctors force us all under the Bell Curve of treatments. If you have outlying issues, you cannot 100% entrust yourself to their care.

I didn't wade through the weeds with my doctor today, but I'm wondering how my being cathed would affect the urodynamic procedure. The first time I had it done, they cathed me to empty my bladder, then they shoved the sensors and supply tube up me and did the test, then they cathed me again when we were done because I was retaining a good amount. I wonder if the initial and the final cathings would not be required since I have an SPC. That would make it much easier to tolerate.

 

Neigh.

I'm not sure what the concentration is. My records state "Mix 50 CC of sterile water with 2cc of
gentamicin. Gentamicin 40 mg/mL solution (gentamicin) Instill 2ml into bladder via catheter every 3 days." If I read the horse stuff correctly, it's 100mg/mL, making it about twice the concentration. If that's the case, the price-per-dose for the 250ml bottle is about what I'm paying for now. Maybe I'll ask the girl at Tractor Supply. They have a horse medication area, and she was real helpful when I was looking for a boom pole...and I buy all my horse paste there.

As an aside, I found the Managing Partner's name on the pharmacy website, and I'm writing a letter to him. The folks at the other branch are horribly frustrated with that location, and told me the only way for me to talk to a human there would be to call the branch store and have them do an internal phone transfer.

The next time I see my UVA nephrologist, I'll push him to give me help in finding a way to have UVA compound this for me, although such a path may not be any more functional than the one I'm currently on. I may go back to the branch location and see if I can get them to supply the gentamicin unmixed so I can do it at home. That is what the nurse showed me, and it's how my doctor wrote the script. The pharmacy takes it upon themselves to do the premix. edit to add: perhaps they are reading the patient instructions on the prescription on how to mix it, and are taking it as their direction from my doctor.

 

I received the UPS delivery of the gentaminicin mix today. They shipped it yesterday (the day after the refill request was entered.) The shipping fee was about what gas would have cost, not to mention my time and wear & tear on the vehicle doing a 140 mile round trip. There were a couple of small ice paks with it, and it had a foam insert. It was chilly enough.

I'll have to think if I want to take the risk of shipping in the summer. If I do, I'll make sure to order early in the week so as to not risk the stuff sitting somewhere over the weekend...if they'll continue to ship to me. I was told that they do not do ship, so this delivery may have been an accommodation. The instructions said "Freeze Upon Arrival, " and since I have maybe 10 days worth left of the original prescription, I put the new jug in my freezer. I guess if this works long-term, the hassle is worth it. I may see if they'll at least ship to the closer location if home delivery ain't gonna work for them.

 

I feel for everyone who struggles with this stuff, especially those with chronic conditions. Were I not the untrustworthy sort who followed up on someone else's [broken] promise, I would still be waiting for a prescription is never gonna arrive.

I detest issues that are never gonna be resolved.

 

Well, either the gentaminicin is not going to work, or it loses its potency over time. Yesterday morning there was evidence of the beginnings of sediment starting (it starts as cloudiness when I do the daily cath flush.) It was minor, but there should have been none at all this early in the use of the antibiotic flush. I got the first 30 day supply of premix when the prior catheter had only 2 weeks to go until it was swapped out, so the premix was 14 days old when I had this new catheter installed just shy of 2 weeks ago.

I'm concerned because things I read state that gentaminicin loses its potency after 24-48 hours, and this premix is a 30 day supply. I spoke with a pharmacist about this when I was there a week or so ago and they told me that the gentaminicin premix would be fine for 30 days in the fridge. I mentioned that the urology nurse showed me how to mix it myself as-needed from 2ml vials, so when I'm in town for my next cath swap in a couple of weeks, I'm going to stop by the pharmacy again and see if they will supply me with the vials so I can mix it at home on-demand. I'll have to make sure to ask for (10) 2ml vials and not a 20ml container.

This is depressing. I usually get 2 weeks being sediment-free when a fresh catheter is installed even after the nitrofuratoin wore off (I got 10 straight weeks of being sediment-free when I first started taking it), so using this flush has given me no improvement, unless it is keeping an increased volume of the bacteria down and I just have no way of telling. The urologist just flushed my bladder and gave me an antibiotic during the procedure when this cath was installed, so I was expecting better. I have a 30 day supply of premix in the freezer (my recent refill) to use before I can change over to the vials, if the pharmacy will even let me do it. My urologist told me he did not control how the pharmacy supplied the antibiotic (?), so maybe they mistook his "this is how you mix it" prescription directions to me as directions to them. I'll go talk to Walmart and see if they can get me the vials, since I do not need this to be compounded.

Three weeks is the minimum amount of time the urologist will allow a patient to go in between catheter swaps, according to a side-comment a nurse made to me. Since the nitrofuratoin wore off, I've had 1 cath last four weeks, 2 caths last three weeks, then the most recent cath last four weeks. I really pushed that last cath to the limit to make it to four weeks, and the three week ones probably could have lasted longer...but I got paranoid. So if things level off where I'm at now with what I'm doing, I'm good-to-go. Other than that, I have no control over the bacteria and the resultant struvite, excepting an inference I read that said excess zinc might be a contributing factor to the creation of struvite. I have a bunch of labs scheduled later this month, and a zinc test is in the mix.

 

That's a good question, Don. I'll ask my doctor. The underlying issue is that if the bacteria were controlled, there would be no struvite in the first place. As I read more about gentaminicin in general, I see that there are patients that inject it at home. So getting vials should not be an issue.

 

It took forever for the nephrologist at UVA Health to gt the system to accept that test request. Apparently, there has to be an underlying malady entered into the system before it will permit a test to be ordered. He tried entering all sorts of stuff (which I did not like, since I want my documented history to be accurate), then found the "Because I said so" button.

I'm most curious to see what the vitamin & mineral panel I'm gonna get shows. I will have been off of all supplements for 7 weeks (9 weeks for calcium) when I get that done, so it will be on my clean system. I happened to get an email today reminding me that Medicare will pay for a bone density test every 2 years. Even though my parathyroid gland test show everything is OK, I might get that done, since I've been excreting so much calcium in my urine.

 

The pharmacy counter at Walmart looked slow when I was just there, so I spoke to a pharmacist who told me that they will dispense the 2ml vial of gentaminicin if the script is worded properly. I've got a few weeks to line things up until I need a refill. The other hurdle is to get a script for needles if I order them online. The Walmart pharmacist said that they do not require a script for needles (maybe it's implied with the script for the vials.) He did not know the cost of the needles, nor do I know if they are the type that can be attached to a 50ml syringe.

This will solve the 140 mile round trip, and give me a degree of confidence that every instillation is full potency.