Had A Urodynamics Procedure Today

Discussion in 'Health & Wellness' started by John Brunner, Mar 25, 2021.

  1. John Brunner

    John Brunner Senior Staff
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    They check the makeup of the struvite, or they just check to see if it is struvite?

    I've been told (and read) that there is nothing in our diet that can effect this, (except the inference of excess zinc)...that it is 100% caused by the bacteria, and the only remedy is to prevent the bacteria.
     
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    Last edited: May 12, 2023
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  2. Mary Stetler

    Mary Stetler Veteran Member
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    Well, do that then.:rolleyes:
     
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  3. John Brunner

    John Brunner Senior Staff
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    I'd still like to know...do vets analyze the makeup of the struvite?
     
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  4. Mary Stetler

    Mary Stetler Veteran Member
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    I don't know. I haven't seen my friend whose dog had the problem lately. When I do, if I remember, I will ask. Her vet is very pricey.
     
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  5. John Brunner

    John Brunner Senior Staff
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    Thanks.

    I did a little reading, and found that struvite (in cats) contains phosphorous and magnesium. I took a look at my recent labs, and my levels of those two minerals are normal.

    At least this gentamicin infusion seems to be doing the job, early occurrences of sediment notwithstanding. On Tuesday, I'll cross the 4 week threshold to have the cath swapped and things are fine. Either there was some residual sediment my doctor could not get at, or the bottom half of the first bottle of gentamicin solution was losing its potency and the fresh batch I cracked open 2 weeks ago killed all the critters.
     
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  6. John Brunner

    John Brunner Senior Staff
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    Well, I went to order the Accessa Labs test, and they do not use Lab Corp, even though it's listed on their website. They only use Quest. Apparently LabCorp has some issues (contractual?) with patient-ordered tests. I looked up tests on another site, and they, too, use Quest. I was gonna line this up for when I was in Charlottesville to do the UVA Health tests my nephrologist ordered, but there are no Quest labs there...I gotta drive the other way into Richmond. I should have researched this sooner so I could have done it after today's urologist appointment. But that's me over-controlling stuff. It's not as though a one-time 45 minute drive is gonna kill me...it'll just sting a little bit.

    The upside is I called Accessa to ask about doing this at Lab Corp, and the woman gave me a 10% off code to use for whatever I order. And there are some tests available on another site that offers more vitamin/mineral tests than Accessa does (some at a higher cost.) So I'll do some research and see what I think I need relative to the depth of my pockets and what I really need.

    I'll post my research and results on an existing Supplement thread and put the link here when I do.
     
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    Last edited: May 16, 2023
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  7. John Brunner

    John Brunner Senior Staff
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    Here's a link to a comparison chart I did of seven vitamin/mineral tests that are available without a prescription. They range in price from $100 to $1,300. This is in a Supplements thread.
     
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  8. John Brunner

    John Brunner Senior Staff
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    This probably belongs in the Rant thread. I almost got screwed again by a pharmacist.

    When the pharmacist at Walmart told me they could get the gentamicin the way I wanted it if my doctor wrote the script the right way, I forgot to ask how such a script would have to be worded. So I went back today to ask that question. Today's pharmacist checked to see what he could order, and he can only get gentamicin in 50ml bulk bottles at a 50% higher concentration...I told the other guy I need 2ml single-dose bottles. I don't think I could accurately draw 2ml into my large cath syringe from a 50ml bottle, and that bulk amount would go bad sitting in my fridge for 3 months.

    So I drove around to different pharmacies, and I made some phone calls.

    >The pharmacy at UVA Health does not carry injectables. Neither does their specialty pharmacy. They claim that patients do not self-inject gentamicin. :rolleyes:

    >I called my CVS mail order plan people. It shows gentamicin as only being available when compounded into a medium (ointments, eye drops, etc.)

    >CVS pharmacies in this region have been so universally unreliable that I'm not gonna bother with them, but I doubt they can get it.

    >The pharmacy currently compounding the script (Rx3) says there was a study showing that gentamicin is stable for 6 weeks at room temp, so my "It's gonna lose its potency" concern is unfounded. I had read a similar statement on a University of Michigan document. The Rx3 pharmacist is going to send their owner an email to see if I can get the 2ml vials through them. But the pharmacist voiced concern over the lack of sterile conditions when I mix it at home. So I'm not hopeful.

    >Walgreens shows it in their system, but the pharmacist is not sure he can order it. He wants a test prescription. My cost per month (10 vials) would be $12 versus the $95 delivered cost for the compounded solution.

    This all makes me wonder if the Walmart pharmacy can really order that 50ml jug. We'll see what Rx3 says. I may see if my doctor will put a script in to Walgreens...I'd prefer mixing the stuff fresh, and Walgreens is way closer to home.

    What a goat rodeo. I wouldn't even be looking at doing it this way if the urology nurse hadn't shown me how to mix it and set my expectations by giving me some large syringes/needle tips/catheter tips. And I've read several sources saying that people self-inject this at home. Where in the heck do they get their scripts filled????
     
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    Last edited: May 18, 2023
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  9. John Brunner

    John Brunner Senior Staff
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    So here's where I've landed on the gentamicin issue:

    My compounding pharmacy (Rx3) called this morning to discuss this. They have lots of customers taking gentamicin in one form or another and the supply of vials has been constrained for quite a while. They used to dispense vials, but due to manufacturer supply problem they can't anymore. These days they receive the product in larger "bulk" containers and compound the scripts out of necessity.

    Both the Rx3 pharmacist as well as the Walmart pharmacist validated that my shelf life concern is "not unfounded." The Rx3 pharmacist told me that they monitor the latest data (mainly studies on the compounded product) to make sure they are doing the right thing for their customer...so they do recognize shelf life as being a potential issue. She said that if I was that concerned, they will provide my script in (2) 250ml bottles rather than a single 500ml bottle. That way, I will only be holding it in the fridge a max of 2 weeks, and the second bottle will stay in the freezer until needed. (I wish I had asked how they know that freezing it makes a difference.)

    So for now I'm gonna stick with the compounded script broken down into 2 containers. Even if Walgreens is able to get the 2ml vials for now, that supply is not going to be reliable. And it's reassuring that the pharmacists are being up-front with me regarding shelf life and that they are on top of it, so I have a degree of trust there. If vial supplies loosen up, I may revisit this in the future, since it will save me $30/month (after I pay for the supplies required to mix it myself)....and I'll be guaranteed 100% potency.
     
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  10. Don Alaska

    Don Alaska Supreme Member
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    Yeah, it seems to be the formulary and their lack of faith in your ability to do the required actions that are the problems. I hope you can get it all resolved and that it works long-term.
     
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  11. John Brunner

    John Brunner Senior Staff
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    Gee, do you think they were BSing me with the "vial shortage" story? So what about UVA not dispensing this in a non-compounded manner? The UVA pharmacist told me that anyone who needed gentamicin injections came into a doctor's office to get it done, which runs contrary to what I've read.

    I can see a conflicts of interest since they can bulk-compound the stuff and sell it for 10x their product cost. It would sure be a predictable, foundational product to support their sterile room overhead. I spoke with one pharmacist at Rx3 the previous day who asked what my process was due to concerns over sterility in the consumer environment. But my first dose was done in a cath-swapping urology nurse's office. I guarantee you that the things that happen there over the course of a day ain't sterile. She didn't break out the Lysol before she did it.

    I have no problem going local with Walgreens if I could verify that the "manufacturer shortage" of the 2ml vials is a contrived tale...but no drug store pharmacy could get it (except that 50ml container from Walmart.) Maybe I should do a test script with Walgreen's, knowing that I can fall back on the compounded stuff if problems arise. The reality is that even if a dose is deferred a couple of days, it won't be the end of the world in my case.

    I need to research the general availability of this stuff. I'm gonna be angry if my trusting nature has been taken advantage of...again.
     
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    Last edited: May 19, 2023
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  12. John Brunner

    John Brunner Senior Staff
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    I found a Gentamicin 2ml Vial Shortage notice on the American Society of Health-System Pharmacists here.

    Stated reasons were Manufacturing Delays and Increased Demand. Estimated back order release data is this October. This notice was posted May 1, so it does not look like it has been a long-term thing as I was told, unless the shortages have repeated over & over.
     
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  13. Don Alaska

    Don Alaska Supreme Member
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    I think the sterility story is pure BS. People give themselves injections at home all the time not in a "sterile environment". I have no way to check the vial shortage other than what you have done.
     
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  14. John Brunner

    John Brunner Senior Staff
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    I agree with the sterility story being BS. I'm sure that would be a shock to diabetics. Perhaps the pharmacist's head was in her world of sterile compounding environment, and not understanding the process of single-batch mixing using a 60ml syringe. Maybe. And I've had the talk with my urologist regarding "sanitized" versus "sterile."

    I don't know what to think about all these places not ever selling injectables, regardless of supply status. It's a universal position, excepting the "maybe" from Walgreens. I thought of raising the subject of them dispensing insulin, but I was trying to get data, not start a food fight. I can see no reason for the retail guys to not sell this. They don't have a compounding business to promote.

    I drafted a note to my urologist explaining why I want a second script to go to Walgreens (I've learned these things need to be slept on to be crafted properly within my 1,000 letter limit.) Maybe I'll send it to him on Monday and see what Walgreens can do. I could also send him a note about writing a script for that large more-concentrated bottle Walmart can get, with the understanding refills will be driven by expiry dates and not volume (I'll bet that size of product is real cheap.) If nothing else, come October Rx3 will lose their "it's constrained" excuse.

    The only remedy for the frustration and anger I feel at this stuff is to throw more stubbornness at it. But everything seems to have irrational obstacles thrown in the way, and at some point someone just needs to be backhanded.
     
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  15. John Brunner

    John Brunner Senior Staff
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    I've decided to put the search for gentamicin vials on the back burner. Since last July, I keep thinking I've finally gotten off of the roller coaster, only to get on another one. The SPC was supposed to be my "going forward" relief, until the sediment nightmare hit. Then the nitrofuratoin fixed stuff until it lost its efficacy, contrary to the everything I read. I don't need to introduce more uncertainty.

    The universal unavailability of "injectables" has me thinking I don't need to chase down the Walgreen's option right now. I'd never be confident that the source is reliable, and I'd still have to go get other supplies and stay on top of supplies to deal with mixing this myself. My last attempt at getting needles never went anywhere (the seller pursued a script on my behalf but it just died with no follow up from the seller or from my doctor), and I dropped it when I discovered I'd be getting the stuff compounded. I may pick this back up sometime in the future...although saving$35 or so per month right now sure is tempting.

    I dissected my most recent catheter today and it was squeaky clean, despite the occasional evidence of a small volume of sediment appearing. So I'll let things ride for a while.
     
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