I called the UVA Kidney Center. They have faxed a referral request and a list of required data to my urologist. Hopefully I'll be in to see them next week. I wish I could find better data on the causal issues, but without a urinalysis I'd be shooting in the dark. I drink tons of well water, and I have a water softener that has taken the groundwater's baseline of 18mg/liter up to 91mg/liter. I don't know if the ±250mg/day sodium I'm getting from that is part of the problem or not. In the meantime, I'm seek out sources for antibiotics, since I'm no longer certain of ER support and I've got a history of U.T. infections. I need to find someone who lives in Mexico...
If it is minerals that are causing the sediment, possibly a water distiller would help you, @John Brunner ? It removes all of the minerals from your water and does not add sodium like your water softener is doing. If you have a faucet that is not connected to the water softener (outside maybe ?) then use that water for making the distilled water. There are some fairly inexpensive ones on Amazon and you could try one and see. It also helps your coffee or tea have a better flavor. How does the doctor say your GFR is for your kidneys ? Because of my heart failure (and the meds i have to take for that) I have stage 3 kidney failure. My GFR was down in the low 30’s a few years back; but since I have been cutting most meat proteins from my diet, my GFR is coming back up and is now around 47 the last time they checked it. If your kidneys are not functioning up to par, you might want to look into moderating your protein intake; it has definitely helped me. I try to stay on the line of not having too little or too much protein, and try to get more from plant-based proteins.
Every one of those questions is spot-on, and what I hope to get answered by the kidney guy. I don't yet know if salt is the issue. I never thought of getting a water distiller, and I have a non-softened outlet, but it's unfiltered and my water has a lot of mica and dissolved solids in it. I'd have to research to see if it would trash a distiller. If I had the space, I would have one of those large water bottle stands, but there's this mystique of "healthy well water" that kept me drinking the stuff. I've recently been thinking of switching from salt to potassium chloride in my softener. When I first moved here and had not addressed the water hardness, it brought my kidney stones back. But I've been drinking LOTS of the softened stuff since 2015 with no apparent ill effect. I'm glad you mentioned this...I'll make sure to take my well water data in when I see the kidney guy. There are lots of Dissolved Solids in it (even softened), but I cannot figure out if that's a bad thing. My estimated GFR from my Nov 2021 annual physical was 88. My urologist just did this test and it's at 87. And as you and Don alluded, my kidney health is a big concern in all this, especially the industry mantra of "If you don't have a fever, you don't have an infection," driven by the fact that having a catheter jiggers the bacteria test results. (It's like telling a patient that they do not have a migrane, just because there's no discrete test for it.) I'm not gonna wait to hope I get a fever before kidney damage starts. So I'm looking for antibiotics to have on hand. Maybe I can get the kidney guy to agree with me regarding my kidney health trumping this goal of minimizing antibiotic use and he will be a source. I'm not gonna change my drinking water source or anything else right now (although I should cut back my coffee.) I want the kidney guy to analyze my current state of affairs. I can always make changes after that. I gotta say I respect the hell out of your taking control of your issues, and I'm so sorry you have them in the first place. I appreciate you (and everyone) sharing your 1st hand experiences. That's one reason I log on and type out my stuff, and why I don't hesitate to discuss medical stuff in person...you never know who may benefit.
The water distiller should be fine with your mineral well water. It will collect sediment (like a coffee pot does) and you can just use a vinegar solution when you see it is getting greyish inside the distiller. We cleaned it after each use and then vinegar as needed. Basically, the distiller is similar to boiling water in a pan and collecting the steam, so all of the impurities just end up in the bottom of the distiller and not anywhere that could affect how it works. Ours was a really old one (and came from the thrift store), but it did a great job and we had it for years before it finally gave up the ghost. You can find a good one for $100-$200 on Amazon. Once you have good information from the kidney doctor, you should be able to strategize kidney health plans better, too.
The distiller shouldn't be harmed by the mineral content, but you might think about a pre-filter to remove thee mica and sand, @John Brunner as that stuff would fill up the heating area of the still and would not be removed by the vinegar or citric acid cleaning. If your GFR is in the 80s, your kidney function is fine so far, as anything over 60 is considered normal. It is only actually a eGFR (estimated glomerular filtration rate) unless you have actually had the rate measured (an unpleasant procedure) so there could be some error involved. Still, over 80 is undoubtedly fine. I can't see how the sodium would cause sediment, as most sodium salts are quite soluble, but who knows...? An RO unit will remove stuff, too, but it is generally more expensive than a still and would require more pre-filtration. I think I have recommended those OTC dipsticks before and I think you said you had them. They detect many urinary infections but not all. Do you know what organism is generally causing your infections?
The direct answer to your question is Klebsiella pneumoniae. >5 infections treated since April 2021. >>I have lab results for the most recent 3, all while catheterized, all citing the above bacterium. Cefdinir and cephalexin were prescribed. >Scripts are obviously issued before the lab work is complete. None of the original meds got changed. I'm gonna type out the chronology of cath & infection events, since I want to gather it for the kidney guy. Lab results are in red. *************************************************May 1954: Born. Never had a UTI until the urodynamic 67 years later. Lack of a UTI is somewhat interesting in light of ±15 years of retention issues. 4/5/21: Could not urinate because of urodynamic-caused infection. The ER did lab work. My urine was purple and cloudy. I don't know the bacteria type. (Test results were not uploaded.) Cefuroxime prescribed. 7/29/21: Routine urologist visit, legacy doctor. They performed a routine urinalysis every visit, and found an asymptomatic infection. I don't know the bacteria type. (No online patient portal at this practice.) Nitrofurantoin prescribed¹. Retention issues continue, yet no known bladder infections this 12 month period. 7/29/22: Bladder stopped working. Indwelling cath installed by my urologist. Their stick test showed bacteria, lab work came back negative. 8/4/22: Retention test done by my urologist. I failed. Indwelling cath removed/replaced. 8/11/22: Cystoscopy performed by my urologist. Indwelling cath removed/replaced. 8/15/22: Infection from cystoscopy or from indwelling cath (I assume.) Went to urgent care clinic. Greater than 100,000 ORG/ML Klebsiella pneumoniae Cefdiner prescribed 8/31/22: SPC installed. Indwelling cath removed. It had been 3 weeks with the most recent cath, 5 total consecutive Cathed Weeks. No lab work done. OTC acetaminophen recommended for pain. 9/5/22: Spotting "stuff" from indwelling cath infection. The ER could not replace the cath because the SPC was fresh. Greater than 100,000 ORG/ML Klebsiella pneumoniae Cephalexin prescribed 10/5/22: Initial cath fully blocked @ 5 weeks. The ER would not replace the cath at 5 weeks because I had not had the initial swap out. Greater than 100,000 ORG/ML Klebsiella pneumoniae Cephalexin prescribed 10/6/22: My urologist replaced the cath. 10/31/22: Second cath mostly blocked @ 25 days. The ER gave me the "Manage your urologist better" talk. No action taken. 11/1/22: My urologist replaced the cath. No lab work was ordered. I have no infection symptoms...yet. ¹I read one patient's blog where he fixed his blockage issue (from 1 per week to none in the 9 months as of the blog writing) by a maintenance dose of 50mg Nitrofurantoin.
I thought that said "Kielbasa" pneumoniae, which may or may not be humorous in this context. Just sayin.'
I looks like your K. pneumoniae was/is at least partially resistant to the cephalosporin-type meds that were prescribed. The nitrofurantoin looks like it did better, but there was still residual infection, so maybe the course should have been longer. Can you get the actual MIC/MBC results? It might give you a better idea of a therapy to follow. Probably it would be better to have two antibiotics instead of relying on the actions of just one. From what I can find, there has been little clinically significant resistance formed to nitrofurantoin, so perhaps the dose was to low or you just weren't on it long enough. Klebsiella should form nitrite, so those dipsticks I mentioned should pick it up.
I think the daggone catheters throw a curve here. Not only does the bacteria colonize around them just because the catheters are there, but the inability to change the caths sounds like it might prevent all the bacteria from being killed. So if you are cathed, it seems you should expect to always test positive for bacteria (which is why they say No Fever=No Infection.) Unless I'm reading you wrong, the nitrofurantoin actually looks like it worked (at least, it worked before I was ever cathed): I took (2) x 100mg nitrofurantoin for 7 days in July of 2021 and had no infection recurrence for a year, when I was first cathed in July of 2022. (Nitrofurantoin is the drug that blogger took for a long-term maintenance dose, and he claimed that there was no resistance formed, since it continued to keep the bacteria at bay.) I took (4) 500mg Cephalexin per day for 7 days for the 9/5/22 issue, and then (4) 500mg Cephalexin per day for 5 days of the 10/5/22 issue. Those scripts were written by different doctors but at the same ER. I honestly don't know how urologists evaluate bacteria numbers when a cath is present. It sounds like they get ignored.
I forgot...I think this is what you mean by MIC/MBC. This is the LabCorp report from the 8/15/22 Urgent Care Clinic visit. Interesting that nitrofurantoin did not seem to be recommended, if I read this right. The ER hospital lab did not upload this to the Patient Portal for either of my 2 visits. If this screen shot is too tough on the eyes, I can redact my personal info from the pdf and upload it.
Interesting that it was resistant to the nitrofurantoin. Maybe they should have used trimethoprim/sulfa instead. That is a pair of antibiotics originally developed years ago to treat resistant organisms. Maybe Augmentin (amoxicillin/clavulanic acid) paired with gentamicin would have worked if they wanted to get really tricky. The lab appears to have recommended the cephalosporins and that was probably why it was used...or maybe you have what they called a "complicated UTI"
Did you notice the disclaimer? Those figures are based upon the most recent 5 year's worth of test data where they can match the result to a specific patient. I gotta wonder how large that data set is? I wonder how LabCorp would know any efficacy details. That blogger (accident victim living from wheelchair to bed and back) stated that he experienced zero catheter blockages in the 9 months leading up to his writing thanks to nitrofurantoin, down from one blockage per week. He also stated that the nitrofurantoin pamphlet specifies it as a preventative in doses from 50mg-100mg (he and many of these SPC commenters reside in the UK, so maybe there are regional recommendatons.) He fat-fingered his nitrofurantoin WIKI copy/paste, which actually reads: ***************************************************Nitrofurantoin has been shown to have good activity against: E. coli Staphylococcus saprophyticus Coagulase negative staphylococci Enterococcus faecalis Staphylococcus aureus Streptococcus agalactiae Citrobacter species Klebsiella species Bacillus subtilis species It is used in the treatment of infections caused by these organisms.[13] Many or all strains of the following genera are resistant to nitrofurantoin:[13] Enterobacter Proteus Pseudomonas [13] Gupta, K; Scholes, D; Stamm, WE (24 February 1999). "Increasing prevalence of antimicrobial resistance among uropathogens causing acute uncomplicated cystitis in women". JAMA: The Journal of the American Medical Association. 281 (8): 736–8. doi:10.1001/jama.281.8.736. PMID 10052444. ***************************************************Regarding klebsiella, WIKI contradicts LabCorp's first-hand observations, whatever their source and dataset are (although WIKI refers to a dated 1999 JAMA article.) For whatever reason, the blogger never had his bacteria tested...this info was gained from his effort to deduce the species. Don, this has been a great conversation. I need to track down the handouts for Nitrofurantoin and see if it really is manufacturer-recommended for use as a preventative. If so, I need to figure out how to sell the urologist on prescribing it. Maybe I'll have a chance to feel out the kidney guy first to see how receptive he may be to the idea of helping save my nephrons. Drugs.com has a page on medications for the prevention of bladder infections, and nitrofurantoin is on the top of that list with the highest rating, so that's encouraging.
I may end up going to the ER again tonight. I'm not sure how much longer I can do this. Yesterday I decided to measure 24 hour output in anticipation of a Wednesday doctor appointment. From AM until I went to bed I got over 2 liters. I woke up this morning and there was about half my normal amount, and the 24 hour total came in right under 3 liters. I noticed hardly any in the leg bag throughout the day. This cath has only been in for 11 days (since Tuesday the 1st) and I decide to get on a weekly irrigation schedule so I did the first flush last Sunday. Now there's hardly any volume. I got out a syringe & water and 40cc went in easily...then I could not draw any out. I pulled the cath out a little and guess the end was stuck to the wall of my bladder because things then extracted easily...but there's still way less volume in the bag than there should be. I tug on the cath but things are not flowing. I know it's not backing up at the bag. I guess I should go to the ER (again), but these guys have told me in so many ways that they don't want to keep messing with my non-crisis. So I've gone from 5 weeks then a crisis to 25 days then a crisis to 11 days then a crisis.