Hi Thanks so much Amy and BB. I finally got through to my docs nurse, they did call. And I told her flat out I was going try not taking the HCTZ for a day and see if it helped. It has definitely helped out with me not going gallons and drinking way too excessively. I actually feel a little better. My urine was completely clear, nothing in it, I was going so so much.
On the kidney thing, I had a battery of tests when I was about 4 years old for repeated kidney infections and suspicious bloodwork. They didn't find anything--that was in the 1960s (you know you're old when you have to put the first two digits of the date to be clear!!!). Anyway, the repeated infections followed me up until young adulthood, and thankfully went a way for a while, I was told in my teen years they felt I might just have had some kind of reflux problem that I would grow out of. A few years ago after a uroscope, a urologist told me that he felt my ureters were "rough" inside and that a trial of men's prostate med would solve that. I never felt so bad, my liver didn't like it (I have severe NASH, really bad, this year they told me I would need a transplant--I'm not bad yet, but they feel it will not go on much longer until I go end stage). Also, this predisposes me to kidney problems from the severe liver damage.
I have positive P-ANCA, another marker for kidney disease, cannot see a nephrologist though even for a consult. I also have retroaortic left renal vein and my left kidney was a centimeter larger than the right on the imaging, the retroaortic left renal vein, from what I've read about it, is a precursor or sign of lupus nephritis, many of you may have it and not know it and your radiologists may have either seen it so much they don't note it or don't really even look so much at the veins and stuff. It can be a sign of cancer or other serious problems. Its called nutcracker syndrome, the vein get pinched, the blood doesn't flow right and it hurts the kidney, then the other one is overburdened. They don't really know why people develop RALRV, I had no clue the vascular system could reroute itself on its own, but most radiologists miss it and it is serious in many people and fixable with a shunt and repositioning of the vein. No one will do it for me. It is so rare that it is not even listed in NORD--not because it really is, just probably underreported. The only reason Mayo caught it is that my liver doc is a transplant doc and I came in through liver transplant and it is an important issue in transplantation. Another good reason to fix it. Bending over and certain movements can cause problems because it cuts off blood flow to/from the kidney.
The docs in the US have ruined the eGFR by saying that the test, which is capable of predicting and staging kidney disease, should only measure whether someone is in end-stage kidney disease or not. Its really awful. I tried to write up something about it, but couldn't get anyone to speak about it. The ER wouldn't tell me about my kidneys, just told me to see the doc.
When I go to Mayo I am going to ask for a referral to a nephrologist there, if they will, just to discuss all this and see what they can do for me. I should be on lasix, like most liver patients, but it doesn't work for me, only the HCTZ. So my water retention seems to be more from the UT side.
I'm doing much better without the HCTZ. I see the doc tomorrow and hopefully she will culture the sore and put me on an additional antibiotic (I don't think they want to quit the bactrim halfway through, I don't want to end up with a resistant infection). It is black under the skin by my tailbone. I hope its not something like a necrotizing something or other from the spinal injections. That would be awful.
Thanks so Amy and BB, I was hoping you all would reply. Amy I saw in a post before I had a problem that you were on bactrim, I don't know why I noticed it. Weird what we notice. Thanks so much you guys for being here.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids