I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Wildrose on August 14, 2012, 05:53:56 PM
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The last 3 weeks I had started to feel a lot better physically. I noticed that my pre dialysis normal urine function had returned (which for me means I'm peeing all the time) and I also noticed that I hadn't had any visable swelling in 3 weeks. Also, during that 3 week period of time my body was only tolerating 200-300 L being removed during hemodialysis before I started feeling really sick. Because of all this I called my Drs office last week and asked for a 24 hr urine test to see what my kidney function was.
Turns out... my creatnine is down from 5.70 a month ago to 3.47 now. My GFR when I started dialysis in march of this year was 9, my Dr said its in the high 20's now. But he won't take me off dialysis. He says 3.47 creatnine means stage 4 and because he doesn't understand why my kidney function is better he doesn't want to risk me having high potassium or something like that. I get that I guess... but the dialysis treatments are making me sooo sick. He did allow me to go from 3 sessions of hemo a week to two and I will be doing another 24 hr urine next week, but in the mean time I'm frustrated. I feel like no one in the medical community is HAPPY for me that my kidney function is returning, they are all treating it like no big deal and skeptical as to why its getting better. I'm not acute, as I have IGA nephropathy. Has anyone seen or heard of this happening before and know what I should expect up ahead? I'm hoping my Doctor will let me off dialysis next week if the tests show my kidney function is still better.. but I really don't know what to expect now after his reaction.
Btw, I am of course truly excited about this... if nothing else I've had 3 weeks of feeling GOOD and thats awesome. Thats more time spent enjoying my family and my kids! Of course I hope this better health continues!
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We have had patients on here with kidney function that improved enough to go off D, even if it wasn't a permanent change. Do remember - you have the right to refuse treatment! You don't have to go, although under the circumstances, I'd suggest being up front but firm with your doctor about your plans. Tell him you are going to stop treatment for whatever amount of time - a week maybe? - and then ask for tests at the end of that week. I can understand the docs moving slowly - they don't want to get sued if your kidneys are clearing some toxins but not all, and your potassium shoots up and stops your heart.
Still, it sounds like good news to me! :clap;
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I agree you should be cautious. You don't want to do anything that will make things worse for you. I would guess you have reason to be cautiously optimistic.
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I get so confused about this so forgive me if I have this wrong. I thought by virtue of doing dialysis the lab numbers improve. It's the removal of bad stuff that improves the GFR and creatinine. But if you stop the filtering then you're right back where you were pre-dialysis. I know it was true with Jenna, and when I asked her nephrologist he said, "the dialysis is doing it."
Having said that, I would discuss with the doctor about reducing dialysis to see how you do and see what they say.
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it's logical that your lab. results,will be better- you are doing dialysis. if you ate peeing a lot, the ultrafiltration on the machine needs to be decreased. that doesn't mean you don't need dialysis, you probably do, to remove salutes. two to three litres of fluid removal seems a lot to me anyway. I can understand that more is going to be taken off after a weekend but I never remove more than two litres and I don't especially restrict my intake. sounds more like some adjustments with the dialysis need to be be made, rather tha a cessation of it.
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