I am real surprised the UVA hospital can't help you. They must use injectable gent fairly often. I don't get it. The compounding pharmacy here does IV fluids but we are so far from everywhere else, it may be the exception.
I've not reached out to UVA hospital. I was just remarking that I was surprised that no one in a town with a major hospital could do this. My doctor reached out to a compounding pharmacy in the county north of me (Orange) and they cannot provide this. Neither could that compounding pharmacy in Charlottesville. I started looking in Culpeper county, but even though it's physically closer, the drive time would be nearly the same. I have an appointment with my UVA nephrologist this afternoon...I've got a note to ask him about the hospital doing this. At this point I'm not gonna change horses. It seems that this process takes a while. I got a text yesterday from the pharmacy in Chester giving me the price and asking me to accept it via text (because phone traffic for them is so heavy), which I did. I called this morning to get an ETA so I can plan my day, and I've not received a call back...and it's too late today for me to make the round trip and get to my nephrologist on time. Once I get started on this I'll do refills by mail. I need to talk to them about the lead time to place refill orders. I don't want an interruption in the regime if it's "not time" for a refill but the manufacture/ship lead time is gonna be lengthy. I'm already concerned I'm not gonna stay on schedule. I gotta take this every 3 days, and tomorrow is Day 3. The Chester location has Saturday AM hours, but if the stuff is not ready then, I'm gonna get my second dose on Monday (Day 5), at best.
The saga continues... New Sediment Behaviour This Cath #6 has been problematic since Day #1. Cath #3 thru Cath #5 showed no signs of sediment until 10 days to 2 weeks after insertion. Cath #6 has showed signs of sediment from the very first day. Last Wednesday (4 days ago) was my first flush with the antibiotic. It seems to have altered the nature of the sediment such that it is not as "tacky" as usual, meaning that rather than adhering to the wall of the catheter along its entire length, nearly all of it falls to where the catheter connects to the leg bag. I can tell by squeezing the sides of the catheter and feeling the sediment (and hearing the *crunch*.) If true, this is a good thing. Last night the sediment seemed to have compacted at that connecting point. It took some pressure to break the impacted pile free (this is at just over 2 weeks on this Cath #6.) The cath drained fine overnight, and this morning I made an appointment for an emergency swap (this large practice is open half day Saturdays for this stuff.) I arrived at 10AM and things were free & clear, so there was no sense in swapping it. I ran some errands and got home about 3 hours later...the pile of sediment had returned and was back at the bag inlet. So I did another flush. So far (about 6 hours later) it seems to be pretty clear. New Cath Flush Technique I am trying a different technique where I keep the catheter pointed straight downwards as I gently inject the flushing water straight up so as to (a) not push the sediment back into my bladder only to have it reenter the catheter later, as is the standard technique (b) keep water in the catheter as I try to break the sediment free by hand, and (c) get some gravity assist going for the sediment to fall out as I let the water drain freely rather than drawing it out with the syringe. I'm thinking this is gonna be my new technique...it's stupid to shove sediment back to the source rather than try to remove it. I may do a double-flush doing it both ways, since the standard technique does push out any sediment that may be at the cath's inlet in my bladder. I also may use a small bamboo kabob skewer to gently break the sediment free at the cath's outlet so as to remove it through the end of the catheter, if need be. I had one cleaned & ready, but did not need it. I Got The Gentamicin Today The compounding pharmacy is about 20 minutes away from my urologist, so I swung by and picked up the gentamicin. It looks as though they ordered it from somewhere, which surprised me...why couldn't the other pharmacies do this? Or maybe they compound some stuff off-site. This is a pre-mix, so I don't need needles and the special syringes after all. The package said "Freeze Upon Arrival." And they did. I have the 500ml block of ice thawing in my fridge (where I am supposed to keep it once it's been opened), so haven't done my second application as I should have today (every 3 days.) I put the script on automatic refill to ship to me via UPS. We'll see how long this works. I've had 3 UTIs and a few cath blockages that were addressed with antibiotics, so the critters may adapt as they did to the macrobid. I got 4 refills for a total of 5 months.
still following your thread/journey, it is so interesting to me. The challenges as I call them and what you are going through with all of it, to me says you are a very strong, pressing forward/onward person John, I have continued to learn and absorb much from your postings...
I saw my nephrologist yesterday. I spoke with him about the excess calcium in my urine, and he said that if my calcium levels are sufficient, it's entirely possible that the 650mg supplement is just getting excreted. He gave me an order for a 24 hour urine collection and told me to wait another couple of weeks for the calcium supplement effect to wane (that would be a total of 1 month.) I also had him put in an order to check my iron levels, since I also supplement that and read that iron can contribute to struvite. I have to stop my supplements a week prior to the bladder stone surgery, so I'll abstain for another couple of weeks and get the lab work done on my clean system.
Hey, Janine. I guess you've been busy this week, huh? I appreciate the compliment, but there are times I have some very dark thoughts. I've been through the wringer with plugged catheters at 2AM on several occasions, and last night looked like it might be heading to that as well. Or there are times it looks like the end game may be "self-cathing." There is no "fix" or "end" to this. My head has not always been in a good place. I guess like anyone else with a significant malady, I get angry because "everything else works fine." It has helped having this urologist who put me on the macrobid and is now gonna try this antibiotic flush. As long as I can "do something," I have hope...or at least I'm occupied My worst enemy is what goes on between my own ears. I have a fatalistic side that's tough to manage sometimes.
*YOU have my support, compassion and understanding, it can be so overwhelming can't it, like a downward spiral at times, or lots of the time, stressful, exhausting, and other things. Emotions and all of them accompany the rest, gosh don't I know. BTW you have a message.... ps: yeah a busy week is an accurate description lol.
Just a small concern about the bamboo kabob skewer if they produce a small splinter. You could use a metal nut pick? or Korean, formal, metal chop stick?
I'm of two minds, Mary: 1-I share your concern regarding bamboo breaking. 2-Metal stands a greater chance of doing damage to the catheter than bamboo does, which is why I didn't want to go for something sturdier. I am not gonna Go Deep and Dig Hard. The sediment has been dumping right at the opening of the catheter where I can see it. If it's packed hard, I would likely abandon doing anything for fear of compacting it further. I'm thinking of picking at it on a routine basis to prevent sediment from aggregating and packing. It seems that the pile of stuff has not returned based upon the squeeze test, so now I can't tell if the slight *crunch* I hear when I squeeze the cath at the end is really sediment or just a slight film deposited along the walls. I guess I should stop worrying.
Well, THAT was a bad idea. Sediment returned to the end so I tried to drive the skewer through it. I pushed through it but cause a severe blockage...I could push water through with the syringe but could not extract it back. [queue the paranoia] So I got another syringe of water and pushed the stuff all the way back to get a flow going again. It's frustrating to have it all "right there" within reach. I think the skewer is about the same diameter as the passageway, so it packs the stuff. I'm going to wait until I salvage this catheter and then mess with it out on the counter. I have to go in to the urologist tomorrow for a pre-surgery EKG. Maybe I can talk them into doing a swap. This concludes today's chapter of "Hold My Beer And Watch This Redneck Urology."
@John Brunner I suspect the retail pharmacies just don't have it in their formulary. It is a bit like ordering stuff that isn't on the menu in a restaurant. I mean Pizza Hut could get prawns and oysters, but it isn't on their menu or their order sheet, so they don't have a way to order that stuff. Same with Gent. It isn't normally given as an outpatient. That is why I suggested contacting a hospital pharmacy.
My UVA Health nephrologist told me that they would only mix it for a patient under UVA doctor's care, meaning my non-UVA urologist could not get it done for me...and the nephrologist did not offer to help. I did not push to ask if that meant in hospital or outpatient. My current point of angst is that I was reading pharmacist forum, and they are expressing concern that they have been seeing premix orders for gentamicin (this was a 7 month old conversation.) Apparently the shelf life for gentamicin is only a day or two, yet doctors have been ordering 30 day supplies of premix for patients' convenience (this is what I got.) The best way to do this is the way I was shown by the nurse (2ml vials that get mixed immediately before injection.) One pharmacist was lamenting the inability to get 20ml vials anymore...they are all 2ml. None of those pharmacists have seen anything formal that supports doing 30 day supplies, yet those are how the orders come through, so they get filled. My 500ml jug came frozen solid, with instructions to refrigerate after opening. There is a Univ. of Michigan Medicine document (dated 2018) on Gentamicin Bladder Instillations that states "The Gentamicin solution can be stored in room air. It does not have to be refrigerated." I don't know if this is worth putting on my urologist's plate or not to change my future scripts. Probably not. I guess just this once I'll have faith. The upside is that this treatment seems to have a very high success rate, with some small percentage of resistant bacteria forming.
All this stuff is leading me down a different rabbit hole. I am in contact with Virginia Tech's Household Water Quality Program under their Biological Systems Engineering Department. They work with the state to offer subsidized water testing for those of us on wells, and in return they have a robust database of water quality. I've had the testing done twice and took their 12 hour "Master Well Owner" class (fascinating stuff), so I've met the head of this department a couple of times. I sent her an email about my stone issues and my well's Total Dissolved Solids (TDS), and she is going to do a more in-depth analysis of my well water samples (it sounds like they keep them.) I want to stop buying bottled water and go back on the well, if it's not gonna cause me problems. I could not decipher if she could specifically analyze the TDS. As an aside, she mentioned that "this question [well water and kidney stones] has been coming up a lot lately." I found that fascinating. ps: It seems that VA Tech requires their staff to play the "Woke" game. Her email signature lists her pronouns: she/her/hers. That field links back to an explanation and examples. I can't believe people actually write checks to have their common sense screwed out of them.
I had a couple of stones removed last Wednesday the 19th (arrived at the place 6:30AM.) The doctor also flushed out my bladder to remove all sediment because he thought it might be harboring bacteria that was continuing to created more sediment. This was a pretty thorough cleaning, because he shot the cleaner in where my supra-pubic catheter goes and let it flush out where he inserted the cystoscope to remove the stones. I started the antibiotic flush 2 weeks into the last cath, and could tell is keeping sediment production down. I've been generating sediment since Sept 1, and this is the first time all the gunk has been cleaned out. Even if the bacteria/sediment starts to come back, I think I'll be able to live with it and go to a 3 week cath swap instead of a 4 week one. I'm so glad I found this doctor. I hate to think of where I would be with the other guy, who would not even prescribe an antibiotic. My next move is with the nephrologist. He ordered another set of lab work for me, and I got him to add a zinc test, because I read that zinc might contribute to struvite stones. I'm also doing a 24 hour urine collection through him, primarily to look at my calcium levels. I'm going to wait until late May to do the urine collection to let the effects of this bladder surgery die down, and I'll also get the blood work done at that time. By then I would have been off of the calcium supplements for over 2 months, and off of all other supplements for 6 weeks. That should give me a read on my clean system. I'll build my supplements back based upon those test results. I really should see if I can get a complete vitamin and mineral panel since I'm doing this.