Drink more water, less soda.
Find a sleep center and go to it.
usedtobe has a variety of pathologies, including abuse of medications, overdose, severe cerebral atrophy (pretty amazing he’s as cogent as he is with that CT reading), and others, including what appear to me to be some significant psychopathologies, but his end stage kidney failure is possibly the item that was in the doc’s mind when advising to go with water. Cola products are acidified with phosphoric acid more than citric acid and is a great idea to give in large amounts to failing set of kidneys. More generically sugar-sweetened carbonated beverages have a significant association with chronic kidney disease, greater than just sugar sweetened beverages in general, and both sugar and artificially sweetened soda may worsen hypertension.
In this end stage kidney failure context soda, especially sugar based ones, might not be worthless; they might be quite harmful.
Usedtobe, this is why I told you to ask the doctor why you should not drink soda. Soda is bad for your kidneys.
I am guessing that UCD is refusing to treat you because you are non-compliant. A suggestion that was made previously is that you should take an advocate with you to appointments. This person could interact with the medical team and make certain that all information is captured and conveyed ON BOTH SIDES. It is clear that you feel that you are not heard. It is equally clear that you are not hearing everything that you need to hear for your own health and safety. Perhaps UCD would be willing to resume treatment if you consider this approach.
Kids" I know what is in the sodas I drink.
When the kidney failure (CKD) was diagnosed, I stopped the colas dead and switched to citric acid-based drinks.
I have never used artificial sweeteners.
I use real sugar, real fat, real salt. These I know.
MD did not bother asking about what kinds of soda I drank, just denounced them all.
This person is barely 30 - still much more interested in form over function.
The note did suggest that the “Doc” “would be willing to continue” - but with sleep and pain OFF THE TABLE.
This leaves her obsession with blood tests.
I have been stuck2 or 3 times daily (CBC and BMP) for several weeks this year. Including one solid week on psych hold, absent pathologies.
She now (5 weeks later) wants another BMP, and three others I do not recognize.
I have not slept more that 4 hours in the last 3 days.
Maybe you can understand my reluctance to “forget sleep meds”.
Again, this insomnia is life-long.
I assure you I have tried:
Melatonin.
White noise
Various teas
Self Hypnosis
Acupuncture
and about a dozen other tricks,
While I appreciate the concern behind these suggestions, they HAVE been tried and found wanting.
I am no longer seeing first-string MD’s - Medicare gets the trainees (now on third nephrologist, non of whom mentioned Gabapentin (itch) or magnesium (cramps). I got these from WebMD.
I would have been nice if the MD’s had mentioned “Oh, by the way, you will encounter…”.
They didn’t. I mention these two tricks to an absolutely adorable nurse. She nodded “I know”. Not exactly cutting-edge stuff.
Why wasn’t I told?
Again, the research such as it is is NOT saying that the potential problem is cola alone. Real sugar sweetened soda in particular has the association with chronic kidney disease (CKD) albeit both do for hypertension. The meta-analysis showed a 58% increased risk of CKD associated with real sugar sweetened sodas while artificially sweetened soda’s increase did not hit statistical significance. The most recent large longitudinal study found that real sugar sweetened soda consumption of more than four servings/week was associated with well over twice as much risk of incident CKD.
Association is not proof of cause and who knows for sure if that is what your current doc was concerned about. FAIK she may not care about trying preserve the little bit of kidney function you have left; she may just hate soda!
Giving up soda is the least of your worries.
See where? A Google search on that phrase gets exactly one hit - this thread.
Well, that was a shock.
GFR was up and creatinine was down following the last bout in the hospital.
The more recent tests (5/24 and 5/24) show both seriously reversed.
I am now showing GFR of near 20 - was 33 solid, was shot by the acute failure.
I had another BMP taken today.
I have the Occult Blood in Stool test packet.
A/C shot, the “pro” was useless, too weak to do more than an hour’s work at a time.
I am opposed to dialysis. It arrests nothing, it just extends suffering.
No CBC was ordered, so no hemoglobin numbers (both chronic and acute versions of that mess as well).
I wonder if the old (very expensive) private practice I used when I had money would care to see me for old time’s sake.
My doc, the oncologist, screwed me over with triazolam - he was devastated. Called me in to announce his imminent retirement - he had told his partners, but told me before the front office.
I would like to have my brain back - triazolam is noted for brain damage when used for extended periods.
Still, I miss him - a great oncologist and a genuine friend.
Oh - I did offer to discuss continued use of UCD, but require new MD - well is poisoned.
I stand by demand for effective pain and sleep meds (latest sleeper no longer works at any dosage I care to try).
I am being faulted for providing the dosage at which these toys DO become effective.
I guess we stupids are not allowed to test - just a “yes/no” on “does it work at prescribed dosage?”.
I also request being assigned a “Patient’s Advocate” to communicate with “But his Kidney require him to live in constant pain and never again sleep!” MD’s
I am a bright boy - I can fully understand that the fog I am in is not only sleep deprivation, but creatinine level as well.
I remember it from 2/16 quite well.
Oh yes - I have lost 33 pounds since 2/16.
No, I am not trying. Maybe the sugar in the sodas is a crutch…
First thing I was told when my kidneys failed was Stop the Dark Soda, all coffee, all tea. No ifs ands or buts, due to phosphorus. You can have water, lemonade, ginger ale, (some brands of) root beer, and Mountain Dew. The phosphates cause the “itchies”, because with us, it leeches through the skin. This is why most milk products are off the shelf, too. I will always have scars on my body from scratching myself raw.
Why do you refuse the idea of dialysis? Yes, it sucks, but it keeps you alive (if that’s what you want).
Boy, the kidneys are weird organs, aren’t they? I see where coffee, tea, and all sugar-sweetened beverages are contraindicated for failing kidneys.
Kidney stones, however, are apparently a whole other issue. I was told by a nephrologist after my last bout with stones to lay off black tea, but coffee and green tea are fine. I was told to try to drink lots of lemonade. Sugar sweetened or Crystal Light type, they didn’t care.
“Cool!” I thought at first, “I like lemonade.” Ha! After two days of drinking lemonade I realized there was a reason I never drank much of it in the past – I really don’t like the stuff. So I’m not drinking it.
I do mostly avoid black tea. And I try to keep down the number of green leafy vegetables I eat – another no-no for kidney stones (except for brussel sprouts – I love brussel sprouts. But I’m glad to have a reason to not eat kale.). Mostly I tell myself that for years doctors told people who’d had kidney stones to avoid foods with lots of calcium. Oops! Turned out that was exactly the wrong thing to do.
Just an anecdote but I think it’s a bit relevant.
Back in '98 I worked for a time as a groundskeeper at a Naval base. That summer was unusually hot for the area and heat exhaustion or even stroke was a serious concern. We were outside for 8+ hours and the temperature would get in the triple digits.
I came up with a trick to keep me cool and hydrated. I took a huge Gatorade bottle (I believe it was 32 oz) and filled it 2/3 full of water then left it in the freezer at work at the end of my shift. The next morning it was completely frozen and full (because of the ice expanding).
Throughout the day I kept that bottle with me. It would melt bit by bit and I had ice-cold water all day long. That wasn’t my only hydration; I had something else to drink during breaks and my lunch period. But that Gatorade bottle filled with ice was the perfect supplement and kept me going all day.
Anyway that’s my hydration story. No onions on the belt or anything.
The info I was given was “no phosphoric acids”. No phosphorus or potassium in any form.
I never did drink coffee and it has been years since tea. so that bit may have been in there.
Basically, the “brown” sodas use phosphoric acid; the clear/yellow ones use citric.
Note: Hansen’s (niche) Root Beer is made with citric acid.
I do not cook. I buy frozen dinners and nuke and eat.
The MD’s give me crap because of the potassium and phosphorus in the frozen meals.
But their test all show my levels at the low end of normal.
I do not eat enough of anything to tilt the scale.
If you get the same quality of care given Medicare patients, I suggest WebMD, Drugs.com. and whatever else you can find.
Had it not been for the web, I would still have muscle cramps and maddening itch.
OH - got a “response” from the person who intervened between myself and “PCP”.
No offer to meet with me and discuss.
No mention whatsoever of my request for “Patient Advocate”.
Just a “you are welcome to call our “Find a Doctor” service at 734-xxxx”.
Such a warm and welcoming individual.
Dialysis does not “Keep you alive”. It may or may not reduce the creatinine (“blood poison” - the waste product of muscles. Quite toxic) for a while.
There is now peritoneal dialysis, including “at home, while you sleep” (those following the saga - yes. “While I sleep”)
I might consider this, if just to see how bizarre it actually is.
The peritoneum is a semi-permeable sac which encloses the small intestine. Some clever people found it could be used as a “filter” as efficient as the stuff used in hemodialysis.
So you get a big bag of “water”, put it in the machine and hook it up to the plastic fitting in your gut. Hook up an empty bag to the “output” hose.
In the morning, reverse the bags.
You obviously know more than any stupid doctor.
Except, of course, the knowledge of the effects of long-term morphine use on compromised kidney function. 
That one just slipped by you I’m sure. 
Its probably all the sugar. Have you tried drinking some water instead?