Had A Urodynamics Procedure Today

All of the usual health websites say "May cause kidney damage at high doses. Talk to your doctor." No one defines "high doses." The risk is from your kidneys processing high amounts of sugar from the bloodstream.

I have been taking the recommended 2,000mg dose for months (and have been eating miniature candy bars after meals) and recently had a Fasting Glucose Test. My levels were on the high side of normal, for what that's worth (93 mg/dL with Ref Range of 74 to 99.) The thing I don't understand is that nearly everything I've read says that D-Mannose does not convert to glucose. That statement was in response to diabetics who wondered if it was safe for them to take (apparently it is.)

 

Bottom line: I got a copy of a lab report last night stating that my bladder sediment consists of struvite crystals caused by the bacteria that colonizes on the catheter. I do not have an organic sediment issue.

Gee, where to begin this chapter...

I finally saw my urologist last Friday. The meeting was chock-full of conflict. I really thought he was gonna tell me to find another doctor. It's upsetting because so far things went well with him, and I don't my situation to go backwards.

I keep a log of how things are going with the sediment, and he did not like me having "so much data" because he had decided my problem was high calcium levels in my urine. I disagreed, although calcium might be a contributing factor. And I am stubborn. I was not gonna walk away with what I thought was a non-solution. I need this fixed, and I don't need to be taking meds to remedy a non-problem.

My Daily Log of Sediment Issues (if any)

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Nov 18 is when I started on the antibiotics after having catastrophic blockages every other week for nearly 3 months. I started flushing the cath every day and keep track of any evidence of dissolved sediment that I extract (“Cloudy” column) as well as the number of crystals (“Crystals” column) I find as I empty the bag through a strainer. When I see cloudiness start, I begin flushing twice a day (the double lines at Jan 31, Feb 17 and March 11) until that catheter is swapped out. I am unaware of anyone who flushes their catheter daily, much less twice a day. The nurses who do my cath swaps are shocked when I tell them how often I flush and then show them pics of the sediment I still get in spite of the frequent flushing.

I take my used catheters home when they get swapped out and cut open them to see what’s going on inside.
-Cath #1 on the antibiotic had no events to log and was 100% free of sediment.
-Cath #2 had no events, but I did not dissect it because Cath #1 was 100% clear and there were no events.
-The sediment started up again on Day 16 of Cath #3.
-I almost decided to have Cath #3 swapped out before the end of 4 weeks but rode it out. I made it to the end of 4 weeks, but when I took the thing home it was really full of crystals (2.28 grams.)
-When Cath #4 started having issues on Day 9, I got paranoid and had it swapped out at the end of Week 3. It had 1.06 grams of crystals in it.

I had a 24 hour urine collection done on Nov 21 that showed really high levels of calcium in my urine. (I had to aggressively push the prior doctor into writing the script for that test.) This test caused my current doctor to decide that my sediment problems are calcium-related. At my appointment last Friday, I calmly pointed out that (a) I did not have historical pre-catheter sediment issues, and (b) I had severe sediment blockages every other week ever since the cath was installed, yet my catheters became 100% clear the moment I started the antibiotic. My position was that if it was calcium-related, there was no related causal agent that suddenly gave me 10 weeks of perfectly clear sediment-free urine…it seems that the antibiotic killed the offending bacteria and is now wearing off. He was visibly angry. I read his post-visit write up and am pretty upset at the picture of me it painted (“too much data he constantly referred to, insists it’s bacteria, had to be told about antibiotic over-use.”) There was also a snarky note that I “eventually told him I was taking calcium supplements.” My use of those supplements has been in his records since Day One. I only thought I would remind him, even though everything I’ve read says those supplements only affect blood serum levels and they do not increase urine levels (and I’m not taking high doses.) I’m still pretty upset about all this.

Even though I previously sent the guy 2 portal messages with pics of the stones and the pile of sediment I took the initiative to recover, he never mentioned bringing them in for an analysis. He was locked & loaded with the calcium diagnosis. I took them in anyway. To his credit, he said that since I brought in the sediment, he would send it out for analysis and take a urine sample to check for bacteria and maybe take an antibiotic to knock it back down if required. Other doctors might not have taken that step, so he’s still “a keeper.” I figure that since he is adult enough to run tests that I want run but that he thinks are not worthwhile, I’ll take the personal slander that's documented in his system. He may have just been frustrated with me, so went to his office and typed that summary as he vented. But I was not gonna walk out with new meds for an issue that I don't have, while the problem continues.

Late last night I got an emailed copy of the lab analysis on my stones (via my LabCorp account) that concludes the sediment is bacteria-caused (struvite.) I guess I was right. There's also a urine test in process to check for bacteria.

I have not dissected Cath #5 that was just swapped out, but it does not feel as though there is much sediment in it. I had significantly reduced my coffee consumption and increased my vinegar intake by 3x, and think that is why Cath #5 is gonna look relatively benign (but it’s not 100# clear.) There is so much contradictory data on the subject of what causes high urine calcium levels, what helps prevent struvite deposits, what helps prevent bladder bacteria, etc. Some sites say that caffeine causes excess calcium to dump into your bladder, while WebMD says that coffee and tea help prevent struvite. Then there’s the issue of the ideal urine pH when you have bacterial problems, and whether acidic drinks do or don’t actually make urine more alkaline, and 1st person accounts of miracle cures. All of this is the subject for a different post, and I find that I have to step away from it to keep my head clear.

For now, I have pissed off yet another doctor, but seem to be making progress on identifying the causal agents for these blockages. God help those who 100% rely on their doctor's advice, although their stress levels are probably better off for it.

 

It's really hard to tell. When you have a long-term catheter, bacteria almost always colonizes around it. Then the bacteria does weird things to the chemistry of your urine. It really sucks. When I am sick, my GP cannot do a urinalysis because it's a given that there's gonna be bacteria. My nephrologist looked at the calcium issue from a blood serum perspective and declared everything to be OK. Now my urologist is frustrated that the nephrologist would say such a thing (that contributed to his anger.) My urine calcium levels are really really high (although they actually came down a bit in a subsequent test), and it has to be coming from somewhere...the urine bacteria does not create calcium. I had not thought to press the nephrologist because when I went back to review the lab results, the antibiotic had fixed my sediment crisis.

The high acceptable level for urine calcium for a man is to pass 300 mg/day. I was at 543mg, and the last test was 362mg. Given what this recent catheter feels like, I think that reducing my coffee intake may have helped that issue. The only way to tell is another 24 hour urine collection. But now I worry about bone density.

 

There seems to be so many benefits to taking vinegar every day. It fixed my long-term acid reflux issue.

Side story: I lost my health insurance during ObamaCare and went off my statins. My cholesterol shot through the roof, so when I got back my coverage, my GP put me back on statins and sent me to a cardiologist. This is through the University of Virginia Health System. The guy's Fellow (from Ireland) came in, complained about having to buy her own health insurance, complained about having to pay her own tuition, then said "Go vegan." The cardiologist came in and also said "Go vegan." I though it was some flag-football cheer. Neither asked me about my diet or exercise...just "Go vegan." Right. rah rah rah

 

That's what I thought, too. But keep in mind that with a catheter and its attendant chemistry-altering bacteria issue, the nephrologist is limited as to what he can analyze from my urine. Just from my supplement knowledge, I know that your skeletal system is the Keeper of the Calcium, storing and releasing to maintain a specific blood serum level (our bodies are truly miraculous.) So calcium levels are not easy to quantify. I'm gonna make another appointment to talk to the guy. He put in another set of labs at my request just in case. I'll see if he wants to do a 24 hour urine collection. I am now concerned over bone density.

As an aside, I read an NIH article last night about a study that was done on post-menopausal women. (Of course, I only see abstracts.) Unlike everything else that I read stating that calcium supplements affect blood serum levels but not urine levels, this study concluded: Thus, the calcium supplements were of little significance on the serum calcium levels, but have a significant effect on the urinary calcium levels in post-menopausal women. It's backwards for this population. Ain't that interesting? I was only taking 600mg/day and have stopped. There seems to be some concerns about calcium supplements and the way those "higher than food sources" doses are metabolized all at once, but I saw nothing regarding mg thresholds that caused concern.

 

The doctor prescribed Macrobid (nitrofuratoin.) I think it's been around since the 1950s. It's the go-to antibiotic for use as a long-term prophylactic for UTIs because (a) bacteria are not supposed to develop a resistance to it, and (b) it localizes its effect solely on the bladder. It's this supposed "won't develop a resistance" that has me puzzled, because that's what seems to be happening to me, unless the bacteria were not all initially killed off and it took 10 weeks to grow back to these levels.

Regarding use of antibiotics: If I get a cold, I'll generally wait up to 2 weeks before I even think of going to a doctor. I believe that's why I rarely get colds. And I'm very conservative regarding antibiotics. If there is no clear need, I'd rather save them for when I really need them and be confident that they'll work. That's part of what stung in his write-up...I do not beg for scripts.

Regarding the urologist's ego...most of the doctors in this field seem to be good if maladies fall under the bell curve. If a patient has issues that fall outside of the bell curve, they still get the under-the-bell-curve treatment (I call it DMV doctoring.) To wit: I have 2 instances of getting an emergency catheter swap at this practice rather than at the emergency room. The underlying advice for sediment blockages is to drink more water and to flush the catheter more often. So after the nurse does the swap, the floor doctor walks in, does not ask what's going on, does not ask how much water you drink, and does not ask how often you are flushing the catheter...he looks at you and says "Drink more/flush more." Then he leaves, having satisfied the requirements for that Billing Code. That happened to me both times. Literally just those 4 words.

I sat at the table with my prior urologist of 2 years about this problem I have, and he literally said "Drink more/flush more" without having any idea how often I did either. That was all he offered. I got angry. I told him I had been his patient for 2 years and that this issue had me in the ER every two weeks, and with that trite piece of advice he was gonna kick me out the door in the exact same state of distress I came in with. He refused to prescribe antibiotics. I had to pressure him into giving me a script for a urinalysis to see what in the heck is going on. He said "Didn't you say you had that done?" I replied "For goodness sake man, that was in 1990 when I first got kidney stones. Do you have any lab results in front of you???" THAT is the field of urology. God help anyone with any complicated issue, for there is scant help in the medical community.

This is the 3rd practice I've been to, and the current guy is my 7th urologist. He is by far the best I've had so far. When I went in with a blocked catheter on an emergency basis, this doctor actually came in and personally tried to unblock it. That was a first for me. And he then prescribed the antibiotic I am currently taking. I had researched it, and I requested it, and I had a ton of notes to back me up. That is when I switched my care to him. It sucks to see our relationship take this turn. Before, he was friendly and sat next to me and read the backup I had to justify the nitrofuratoin. He said "I see you've done your research." He high-fived me on the initial follow-up when I said things were fixed. And now this. Maybe it will blow over once he sees the lab results.

 

Correct on all accounts. I'm gonna have my GP schedule a bone density test for my own peace of mind, and I gotta get back with the nephrologist. The nephrologist seemed satisfied with my blood serum levels of calcium, but we did not talk about the amount of calcium that is (was?) being dumped into my urine. I have no idea if the current amount is all that concerning, since the high end of the "acceptable" range on the LabCorp report is 300mg/day. The 1st urinalysis showed 540mg/day and the second showed 360mg/day. I had made no lifestyle changes that would account for that vast difference, since my drastic coffee reduction began after the second test (if, in fact, those studies really showed a causal relationship.)

I've supplemented 600mg/day calcium for years, and stopped after last Friday's urology appointment. But I don't think urologists are the ones I should be looking to for these things. Calcium supplementation may have nothing to do with whatever is causing me to dump so much (although 360mg/day is coming close to acceptable.) This might just be my normal physiology.

I have the same quandary over these struvite stones. I think it was a Cleveland Health article I read last night that said there could be dietary factors relating to struvite, but they point you back to urologists to get specific advice. I'll see what I can find on my own regarding dietary issues, but as I said earlier, I gotta take breaks from researching this stuff...none of it is straight-forward, much of it contradicts itself, and it all gets turned upside-down when the cath & bacteria are introduced. My urologist wants to treat my high urine pH, and I have to remind him that everything is jiggered by the cath and the resultant bacteria...that the presence of bacteria makes the urine more alkaline. I don't know if he knows this, or if he thinks I'm one of those patients who need to spend less time on the internet, or if he gets his head twisted by these nuances as much as I do, so--as is the norm in this field--he chooses to ignore them. He was reading the LabCorp report's advice on remediating my my high urine pH, and when I repeatedly point out that LabCorp does not know that my pH is bacteria-altered when they throw out that universal advice, he just looks at me as though I continuously throw obstacles in front of everything he recommends...and I guess I do. Just like I did when he said the bacteria was not the causal agent for my stones and I protested.

These guys universally seem to have a limited toolbox, and if the malady does not fall under their narrow bell curve, they pretend it does and refuse to engage individual patient nuances. My doctor is not as bad as others, and when I dig in my heels he at least looks at other stuff, but I really think there are significant limits on the capabilities in this field. The infuriating part is when urologists are confronted by these limits, they do nothing to learn.