Thanks, Tony. I already have a follow-up scheduled with the doctor the middle of next month. I asked if it needs to be accelerated. There are some things that might be done: -Switch the antibiotics -Swap the cath out more often than monthly -Do away with the cath (because it is the cause of the bacteria) and "self-catheterize" the rest of my life A more frequent cath swap is not only inconvenient, I don't know if Medicare will pay for more than one procedure per month. Self-catheterizing is a whole 'nuther thing (you can find online vids and see for yourself), and carries a high risk of introducing infections, since you do it whenever and wherever you are when you gotta go. I suspect the next step is gonna be to do another lab to make sure the bacteria type is properly defined before making a decision. One thing that just occurred to me is I started cutting back on the D-Mannose I had been taking, since I figured it was unnecessary with the antibiotic. I'll increase my dose again.
Did they tell you cutting back on the D0Mannose is an option? I can't imagine what your going through so I just reply in support. Yet don't want to sound pushy or like I know what I'm talking about when I don't.
I'm not certain they know that I've been taking it...their databases don't have enough space for everything I take. And it was not on their advice that I started.
Oh then I don't know, maybe if you see a change maybe continue to take it long as it isn't negative changes.
I got a call from one of the nurses this morning. Apparently, there could be lots of things going on with my chemistry besides an infection that cause the cloudiness and small flecks. My doctor is not concerned. For now I am to stay the course. The nurse said I could accelerate the cath swap that's scheduled for next Thursday if I wanted to, but at some point I need to get out of crisis mode and into a routine, so I'm gonna trust that this issue is not what my state of paranoia thought it to be. So I'll stay on schedule. Having the ability to flush this thing at home helps. Even though I flushed yesterday morning, I did so again before going to bed just so I could be confident I was not gonna wake up at 2AM for an ER visit. I brought my first post-antibiotic catheter home and dissected it to measure its condition. I'll do the same with this one to see if some of these flecks have started to accumulate in it.
@John Brunner could you self-cath every week to perhaps rid yourself of most of the sediment? It would beat most other options. Perhaps you could be taught how to do your own SP catheter swap and remove the emergent issue.
I was thinking about both of those, Don. The sediment issue has not been a problem for the past 10 weeks, but the self-cathing would fix it should it become significant. I floated the idea of changing my own SPC a couple of times, and neither nurse had ever heard of anyone doing it themselves. I've encountered a couple of articles on the web making mention of it, but have not researched further. Knowing how to do so would save me a 2AM trip to the ER to have it done. I'd just be worried about the deflating/inflating process.
Do you have anyone who could help you with the balloon? That might be a little tricky at first. Maybe you could ask to do it yourself at the next routine change with someone watching who could point out anything you did wrong or work-arounds for things you couldn't do. I think just self-cathing every week or so to clear the sediment might be the simplest thing, even if it doesn't appear to be a problem right now. I am thinking using the self-cath as a preventative measure, so you wouldn't have the clogging problem between changes.
I'm wondering how the self-cath would work, since I already have a cath and am perpetually on Empty. I would have to plug the existing cath to build up urine. And I would worry that the 2 caths might become entangled. This sediment thing has me baffled. I flushed before I went to bed last night (2nd flush of the day) and it was clear. When I did my morning flush there was more stuff in it than has been there so far. Everything was clear for the past 10 weeks when I started the Macrobid (2 caths went 4 weeks and this one started at week #3.) And my further reading of the stuff has me concerned that it might not be effective against the klebsiella pnuemoniae, but if it kept things clear for 10 weeks, it's obviously efficacious. I hope the doctor applied his knowledge before just letting me lead the parade. It is possible that these flushes (plus the macrobid) will be sufficient to keep things flowing, since I had not been flushing at all during my periods of crisis.
It is ok to stop taking d-mannose. It is not actually for long term, non stop use. Not sure where you are with it. D-mannose making the epithelial cells slippery could cause sloughing, of sorts. But then stopping could cause build up which could then slough off when starting again, Right?
I'll have to ask the urologist. I have been taking it for a long time, and started to cut the dosage when I went on antibiotics maybe 11 weeks ago. I never went completely off of them, and only increased the dose back to 2,00mg when I started getting sediment again. I know how D-Mannose works, and thought it to be a permanent long-term UTI preventative that you took every day forever. No. I'm wondering if some of the additives in the prebiotics I started taking might not have an effect. I had a bunch of lab tests done looking for contributing agents and none were found, but I was not taking prebiotics at the time. The monkey wrench in all of this is the fact that I have a catheter, which causes bacteria (they colonize around it.) So I'm not preventing bacteria (and the resultant sediment) in a normal system...I am trying to mitigate the bacteria that is assured to be introduced. That's one reason Don and my urologists raise self-cathing. If I did that to drain my dead bladder, I would not have a permanent cath and this issue would go away.
I was told by my doctor that it was ok to take d-mannose long term. But as usual, I have to always do my own research on everything and come to my own conclusion as what is right for me. You roll the dice and take your chances. Who knows. https://understandingutis.com/new-biomedical-report-confirms-d-mannose-safe-for-long-term-use/
Most of when I've read agrees with your article...it's a natural product that does no harm. I was not concerned that I "needed" to stop it, but I figured that with the long-term antibiotics, it was a needless expense. When my nephrologist ordered all those different labs, I asked him to throw in a Fasting Blood Sugar test, since I've not had one since A1C tests hit the scene. Like all of my other tests, it was fine.