Your comment regarding oxalate made me go look at Wiki, which says "Oxalate occurs in many plants, where it is synthesized by the incomplete oxidation of saccharides." I assumed it was a mineral that got absorbed out of the ground. Yeh, my emergency is over. My only concern now is that the gentamicin completely stops working. That would mean I'd be swapping weekly, unless the urologist refused to support that. I still don't know how he'll feel about my desire to swap in-clinic monthly and at home mid-month. I'd still like to know if the risk of infection for SPC swaps a few times a month in controlled conditions is greater (or less) than hundreds of self-cathings in the same time frame, often in public bathrooms. It was a nurse who said they don't like doing SPC swaps more often than every 3 weeks. The SPC swap is fine as long as you're not complacent in keeping things sterile. And unlike a regular indwelling cath, I've not had an SPC-caused infection. The regular caths gave me an infection every single time (or the original infection continued to replicate.) I just wish this would go away...but it's not going to.
I thought one urologist was thinking you might be regaining some bladder muscle function? Infection is always a risk as you well know. Just be very careful when you swap as it is difficult to maintain a sterile field at home. You might buy commercially-sterilized pads or similar to make it easier. I couldn't find anything available larger than 8" x 10 " but that might be large enough to help.
The current guy thought I might be able to gain some function if he reams out my prostate. I had my March 2021 UVA urodynamic sent to him, and we're getting together to discuss early next month. But regardless of how well it turns out, I won't let go of the SP tube. I won't trust that my bladder muscles are not gonna fail again, and without the SP tube I'm lost. I appreciate the "sterile field" advice. I've been buying all of my supplies at Vitality Medical since this thing started 3 years ago. I can't sing their praises enough. Prices are good, customer service is good, delivery is fast & accurate. There was a manufacturer recall on sterile water and they were on top of it, so they are not just some middle-man. I bought the same brand & model of cath swap supplies the urologist uses, including 10% providone iodine swabs, sterile gloves, and 18" x 26" McKesson sterile drapes @ 41¢ each in a box of 50 (the caths are 18" long.) I lay one out to stage the swap supplies on and drape another one across me to prevent contamination if something brushes up against me, just as they do in the clinic...although it's not fenestrated. I also bought a pump container of antimicrobial hand soap.
just dropping in after so long but was able just now to log on. This had become one of my favorite health threads so wanted to take a look.
John, Just caught up on some of your post and your status at least for October. To be honest Most is over my head, I wish you well, I hope that someday you will be cured or well enough to eliminate all that paraphernalia.
It's the best of times and it's the worse of times. I'm getting the cath swapped at the urologist's monthly and am doing it at home myself mid-month. At 2 weeks, there's sediment (crystals) in it from the struvite. That's been the case ever since I had the hard water incident back in June (comments on that start here.) I fear the gentamicin may completely wear off at some point, but for now--even with the sediment starting at Week 2--I had been able to go the entire month between swaps. The gentamicin is no longer preventing the struvite, but it's changes the struvite's nature. I'm swapping every other week to try to keep my anxiety level down. I've also started instilling a .25% acetic acid solution every other day. That's 2.5 tsp white vinegar to 250ml of sterile water. Dunno how much that might help with struvite. I mentioned in another comment that I had a second urodynamic and my urologist thought that enough muscle tone had returned that doing a prostate procedure might give me a 50/50 shot are fixing this. Then when I asked about that at a subsequent appointment, he said he didn't think even the most radical of prostate procedures would make a difference. So I'm hoping I can limp along another year at which time I'll request a urodynamic and see if things continue to improve.
So without trying to get my hopes up...it seems that the acetic acid (white vinegar) flush makes a difference. The last time I changed the cath at home there was way less sediment in it than the prior 14 day cycle changes. I'd say there was only 1/3-1/4 as much as the last couple of times I looked. I hate to even say anything because I swing back & forth from "Livable Steady State" to "Crash & Burn." But the difference was extreme. The good thing about this is that the bacteria (and sediment) should not develop a resistance to acetic acid. And I'm not dependent on some goofy pharmacy for it.
Sounds like a good solution @John Brunner. A light at the end of the tunnel for you perhaps as far as the cath changes and crystallization go?
I don't really know, Don. Before my hard water issue in June caused things to crash & burn again, I thought the gentamicin had it fixed forever. But I had long since stopped cutting the caths open to inspect them, so the sediment may have been returning for some period of time. When I was first in struvite crisis, the cath was plugging every 2 weeks. That was without any antibiotic. So I gotta think that the gentamicin will still have some repressive effect. And I'm changing every 2 weeks (done 3 at-home swaps so far.) So maybe this will be a long-term steady state for me. Judging by the minimal amount of sediment in my last swap, I probably could go an entire 4 weeks. But 2 weeks keeps the anxiety level low. And I can think of no downside to doing it, other than maybe introducing an infection. I could double up the sterile drapes, since they only cost 72¢ each and I buy a box of 50. My only point of exposure is the cath and the lube. When the gentamicin started to lose its effectiveness, the urologist said the only thing he could maybe do is increase the concentration. But there have been times that I've instilled 50ml, let it sit for 30 minutes, then emptied 185ml into a collection jug. So I've been diluting it at a rapid rate all along. Increasing the concentration in my system would just be picking at the fringes.
I would think the biggest cost of frequent changes would be the catheters, no? I am glad you have found the drapes so easily. Stock up in case they, or the components to make them, come from China. I am not sure I understand your last paragraph. Is the dilution occurring due to urine production? If that is the case, Instilling a stronger concentration, let it be diluted, then drain it might actually work. What are you doing for drinking water? I assume you are processing your well water or buying drinking water commercially, right?
I buy the same Bard caths that my urologist uses, and they're less than $1 each. The sterile gloves that my urologist uses cost me 61¢/pair. The biggest cost is the lidocaine to numb things ($7/dose), but that's because my urologist did not get prior authorization from my insurance, and I didn't want to mess with resubmitting it. I'll get it fixed next time. I could use half a syringe of it at each swap, but for $3.50 I don't want to risk not using fresh every time. Regarding that last paragraph: yeh, I often produce 135ml-145ml of urine in 30 minutes at that time of day. I should instill this stuff when I first wake up, before I get going. I still want to know why the hard water caused the gentamicin to begin failing (middle of June.) I was hoping things would eventually right themselves. Regarding my water: I've been drinking bottled water, even though I had immediately fixed my softener issue. I wanted to take the softened well water out of the equation. One weird thing: I recently saw my doctor for a routing checkup, and expected my sodium level to fall. After all, I had been drinking nearly a gallon of softened water per day @95mg of sodium per liter (almost 400mg of sodium per day just from my water.) I've not had any softened water in 6 months. But my sodium is exactly where it's always been: It makes no sense to me. I'm gonna go back to softened water. It's not so much the expense ($30/month) as it is the hassle of storing and disposing of (30) one gallon bottles every month.