I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Geiser100 on March 11, 2018, 03:08:14 AM
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I've been on hemo for two months. My creatinine has not improved very much on dialysis, but I still just go just twice a week for 3 hours. I get labs drawn every Monday and my creatinine is usually about 7.3 so thats still bad. My BUN has changed from 42 to about 30. I noticed in the last two weeks I've been urinating more often and at larger amounts. I now go about three times a day versus once or twice when I first started. I'm wondering if this is unusual as I was told I would go less and less. I used to gain about 1 liter between treatments but recently have only been gaining about half a liter. Is it possible that my kidney is recovering its ability to produce urine? I really like my doctor, but he seems to just dismiss this. He says it's not quality urine.
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To me that also sounds interesting. Fair enough it might not be quality pee, but if the volume has increased and nothing else has (like increase Frusemide) or something... I would measure 24 hr urine for a couple of days to see how much it is each day?
Love, Cas
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When I started dialysis I found my urine increased. I also found that as soon as dialysis ended I had to rush to pee. I put this down to the fact that my blood was very toxic (potassium and phosphorus levels were at the "stroke : immanent" level) and so my kidneys were being blocked with toxins. When dialysis reduced this, they were able to work better.
This only lasted a couple of months, then the death of my kidneys caught up with the boost they got from having a cleaner environment to work in, and things dropped to where they had been before. Then sadly (but expected) the amount of urine dropped even further.
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I'm on PD and I used to pee a lot which helped my clearance. Then I had 2 hospitalizations for "unrelated" matters and my urine production dropped like a stone--probably from organ stunning in the hospital. Now, months later my urine production is coming back almost to where it was before. My neph figures that I must have suffered AKI (acute kidney injury) and that can be reversible.
As far as creatinine goes, my numbers are in the stratosphere and my neph isn't interested in that number at all. I guess that once you're on D, creatinine is a lost cause.
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I have been on hemodialysis for over three years and needed to start with it very urgently when my kidney function dropped to less than 4% and my body was in the process of shutting down. The reason for my resistance to have anything to do with dialysis for so many years, was due to the fact that my kidneys had already failed in 1971/72 when I was found in a coma and brought to hospital (no dialysis, but the doctors put me on lots of drips and whatever and watched the “two little fighters” to recover a bit of their function again) and I had hoped the same scenario could hopefully repeat itself, but this time dialysis was for real. Nevertheless, after using dialysis-treatments for a little while, my “two little fighters” picked up a little of their function again and they are now at around 6-7%, which means, I am still able to “go for walkies”. My happiest moments are actually in the mornings around 5am, when I urgently have to go for “walkies” with a full bladder. In the “old days” I would have been annoyed to be woken up at 5am like that, but these days I feel ever so grateful about it and my hope is that it may continue for as long as possible.
I have also continued to pamper my “two little fighters”, which means, I continue to eat every single day 3-4 cooked asparagus (a natural diuretic) and I also drink every day half a fresh lime, pressed and diluted with water, which is another natural diuretic with lots of natural vitamins "thrown in", plus I still bake my own salt-less bread and eat my vegetarian diet every day and make sure there is nothing to upset my “two little fighters”... I also continue to wear kidney-friendly clothes i.e. kidney warmers, because I was told by a medical hobby-specialist in preventative medicine, that kidneys are like “mimosas” and they like to be pampered with the same temperature around them at all times and kidney-warmers are there to do just that...
Good luck from Kristina. :grouphug;
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There are different types of kidney loss. Some lose the ability to produce urine at all. Others lose the ability to flush creatine making dialysis necessary.
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My kidney damage was from active lupus in the early 1990's which continued to scar until dialysis in 2013. So on 3.5 years on dialysis I never lost the ability to urinate and feel that I also had some residual kidney function helping things. I still had the normal challenges with phosphorous, PTH and the like but it made things easier.
So hope that you keep peeing, at a minimum it helps keep off the water weight.
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There are different types of kidney loss. Some lose the ability to produce urine at all. Others lose the ability to flush creatine making dialysis necessary.
That is very true and it does help a lot to communicate about our different ways of keeping our kidneys functioning for as long as is possible ...
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My kidney damage was from active lupus in the early 1990's which continued to scar until dialysis in 2013. So on 3.5 years on dialysis I never lost the ability to urinate and feel that I also had some residual kidney function helping things. I still had the normal challenges with phosphorous, PTH and the like but it made things easier.
So hope that you keep peeing, at a minimum it helps keep off the water weight.
Hello iolaire and sorry about the Lupus damaging your "original" kidneys. I am in two minds about my own kidney failure because at first, one year after they recovered a bit from the first kidney failure, after I was strong enough, I was diagnosed with chronic proliferative Glomerulonephritis ( through a kidney-biopsy), but many years later I was also diagnosed with SLE/MCTD plus a few other diseases connected to SLE and MCTD like Sicca, Sjoegren's, Vasculitis etc.
I would like to learn more about whether the Lupus has been known to "attack" a transplanted kidney in a flare-up ? And how does a Lupus-body generally accept a kidney-transplantation? Are there more flare-ups after a transplant to be expected? I am asking because I have read years ago, that there could be complications in a transplanted kidney because of the Lupus? Are your medications worked out by the nephrologist and the rheumatologist in "unison" or is it all in the hands of a nephrologist ? As you can imagine, I am a bit nervous about it all, especially since being on the waiting-list...
Many thanks for your kind answers from Kristina. :grouphug;
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My kidney damage was from active lupus in the early 1990's which continued to scar until dialysis in 2013. So on 3.5 years on dialysis I never lost the ability to urinate and feel that I also had some residual kidney function helping things. I still had the normal challenges with phosphorous, PTH and the like but it made things easier.
So hope that you keep peeing, at a minimum it helps keep off the water weight.
Hello iolaire and sorry about the Lupus damaging your "original" kidneys. I am in two minds about my own kidney failure because at first, one year after they recovered a bit from the first kidney failure, after I was strong enough, I was diagnosed with chronic proliferative Glomerulonephritis ( through a kidney-biopsy), but many years later I was also diagnosed with SLE/MCTD plus a few other diseases connected to SLE and MCTD like Sicca, Sjoegren's, Vasculitis etc.
I would like to learn more about whether the Lupus has been known to "attack" a transplanted kidney in a flare-up ? And how does a Lupus-body generally accept a kidney-transplantation? Are there more flare-ups after a transplant to be expected? I am asking because I have read years ago, that there could be complications in a transplanted kidney because of the Lupus? Are your medications worked out by the nephrologist and the rheumatologist in "unison" or is it all in the hands of a nephrologist ? As you can imagine, I am a bit nervous about it all, especially since being on the waiting-list...
Many thanks for your kind answers from Kristina. :grouphug;
Sorry I can not help with your questions much. I've been in remission since the mid 1990's but it was not formally recognized until I was out of college in 98 and had a more structured rheumatologist who decided since there has been no activity since about '93 that I was in remission.
I was on prednisone and also still getting Cytoxan treatments through college and once I started working that was stopped (if not then maybe a year or so before). I think I was on Cytoxan way longer than needed because new rheumatologists well I was in college just kept the status quo. At some point I was transitioned from prednisone to Plaquenil (hydroxychloroquine).
Since about 2000 I've seen a rheumatologist once per year just incase I ever needed that profession again but might not have gone last year. Its always been about a five minute meeting and then lab work with a follow-up call to say some kidney levels look bad (of course)...
The rheumatologist did say that I should not worry about a flare up post transplant as all the drugs will help to minimize any chance of lupus building. The transplant center did want me on 5 mg of prednisone because of the lupus but I think my nephrologist might be planning to phase that out (he is part of the transplant team)...
I'm leaning on my nephrologist here. I may go back to the rheumatologist but it doesn't' seem needed unless we see lupus related results in the blood. I have not even gone to my primary care doctor since the transplant, again the specialist do almost everything so its sort of redundant to get a "physical" at the primary care doctor.
I'm sure I'd be talking to the rheumatologist if my lupus was active.
I do feel like I need to start seeing the eye doctor again to keep track of the possible glaucoma (and have been told by the transplant center to do that). They also said I need to see the dermatologist to check for skin cancers.
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Many thanks iolaire for your quick answer, it is very much appreciated !
I wish you good luck with the eye-specialist and the dermatologist and all the best wishes from Kristina. :grouphug;
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at a minimum it helps keep off the water weight.
I have said more than once that I'd quickly trade my "monthlies" to be able to pee again, just to manage the water weight gain.
I love telling non-kidney people that I haven't peed since 2007. The look on their faces is just priceless.. :rofl;
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I'm around 15 months on Hemo after 3 1/2 years on PD. I still made a little bit of urine daily, maybe a half liter at most, I'm guessing. Since my clinic is MWF my 'wettest' day is Sunday and I seem to make almost twice as much as I will than any other day of the week. Seems when I get to about 2 liters over my dry weight my kidneys decide they need to start doing something. Not a lot, but something. Almost a whole liter on Sundays.
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I'm around 15 months on Hemo after 3 1/2 years on PD. I still made a little bit of urine daily, maybe a half liter at most, I'm guessing. Since my clinic is MWF my 'wettest' day is Sunday and I seem to make almost twice as much as I will than any other day of the week. Seems when I get to about 2 liters over my dry weight my kidneys decide they need to start doing something. Not a lot, but something. Almost a whole liter on Sundays.
I wish mine would do that, transplanted or otherwise, but there just isn't enough life left in them after all this time. The last week or so, my legs have been nasty huge on treatment days, and I've no idea why. I haven't changed my intake any, but the swelling is getting really out of hand. My neph took a look at it the other day but didn't seem concerned. I've never had swelling like that unless there was a problem, so it kinda bugs me that he doesn't think anything of it.
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I was out to dinner with my sister a couple of weeks ago and before she paid the bill (ungentlemanly of me, but it was my birthday treat from her) she went to the toilet. When she got back she had forgotten I only urinate once or (on a good day) twice a day and asked me if I wanted to use the toilet before she paid the bill. I replied "Naaah, I went last week." Took her a moment to remember and realize what I was talking about.
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I hear several people talk about not going at first after a session, then the next day or the second day after, going quite a bit. I always wonder if their dry weight is correct or are they becoming dehydrated, then, like a sponge that hits capacity, they drain.
Sp mod Cas
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I have to agree with the slight dehydration theory. Fatigue after treatments is always a problem. It seems that it takes at least a day of my, usually very, slight fluid intake before my hydration level nears what's normal for me and I feel a bit better.
When I first started Hemo a bit over a year ago the clinic was taking off far too much, insisting that my dry weight had to be lower. I don't remember how many weeks it took before the Nurse finally listened and started raising my dry weight, up to a point I was no longer cramping.
I've no doubt I would feel much better if my dry weight is even just one kilo more, and my daily urine output while not a full liter might actually hit half consistently.
Still no swelling in my ankles.
Oh, a note about swelling. I used to always wear JC Penneys Gold Toe Knee Socks. I wore work boots and these socks gave lots of calf support and helped control swelling. I haven't needed them since I started Dialysis and took off all that water that was leaking out every day, soaking my socks, causing those massive sores and infections.
Sp mod Cas
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This is so interesting. I was on pd for 6 years and I stopped peeing instantly after 6 months of dialysis. After 6 years of pd I got this bad infection and I had to be placed on hemodialysis. Although not a lot I did pee a little!! It was weird I didnt jnow that could happen. But after a few weeks it stopped.
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Eating raw garlic makes me pee more. Not by much, but enough to be noticable. It also makes me not very pleasant to be near.