peeing function

[texasstyle]

Hello everyone. I was wondering if anyone knew EXACTLY why you can stop peeing. I mean the medical reason lol. Is it because you eventually get a total lack of blood supply in the kidney s that finally shut them down for good? Or is it more along the lines of somekind of damage that happens into the bladder. I've been trying to do some research and i can't quite come up with anything. Hhm....

[del]

I think the kidneys just finally give up making urine.  Total kidney failure.

[casper2636]

Hello everyone. I was wondering if anyone knew EXACTLY why you can stop peeing. I mean the medical reason lol. Is it because you eventually get a total lack of blood supply in the kidney s that finally shut them down for good? Or is it more along the lines of somekind of damage that happens into the bladder. I've been trying to do some research and i can't quite come up with anything. Hhm....

[casper2636]

 I have the same questions. My peeing, too, has been reduced greatly in the last 8 months, down to twice a day. I miss the good old days of the satisfaction of taking a nice long, relieving pee. I know this means my kidneys' are sicker and i 'm finding it very distressful and depressing because it's clear evidence of their failure that I can't ignore.

[RightSide]

Hello everyone. I was wondering if anyone knew EXACTLY why you can stop peeing. I mean the medical reason lol. Is it because you eventually get a total lack of blood supply in the kidney s that finally shut them down for good? Or is it more along the lines of somekind of damage that happens into the bladder. I've been trying to do some research and i can't quite come up with anything. Hhm....

It's damage to the kidneys.  Obviously when your kidneys can't filter anymore at all, no urine will be produced.  But exactly what type of damage that is, depends on just what type of kidney disease you have.

I have Primary FSGS.  The healthy tissue of my kidneys is gradually being replaced with dead scar tissue.  When that process nears completion, my kidneys will lose their ability to filter any more liquid.  It's about 90% complete now.

[Stoday]

My output of urine fell dramatically as soon as I started dialysis.

[Bruno]

I always thought it was because the machine took over extracting the fluid from your body.as your kidneys give up the ghost. In my case, it not the kidney loss I'm going to miss...they were buggered anyway...but I will miss having a good long satisfying pee. At least that gave me the feeling it was useful for something.

[needlephobic]

I am still peeing alot at the center they don't take anything off. I have gone 6 days with out D and felt pretty good alittle tired but take a nap and I am going good again. So it makes me wonder how bad my kidneys are? The Neph says both kidneys are running at 2%  thats a total of 4% I don't think that is right and really can't trust what he says anyway.

[Riki]

It took 3-4 years for mine to stop completely. In the end, I used to get quite excited when I peed.  I'd announce it, *L* My best friend thought it was hilarious.  She also thought it was hilarious when I announced on facebook that I farted, but I had peritonitis and the time, and it was 2 days after I had my PD cath removed.. *G*  but that's another story.

What is FSGS exactly?  it sounds incredibly similar to what happened to my kidneys, both my natives one and my transplanted ones.

[MooseMom]

FSGS is short for focal segmental glomerulosclerosis.  The glomeruli become inflamed and then scar over.  The scar tissue does not perform like normal healthy renal tissue.  Gradually, your kidneys just scar over completely.  They don't know what causes it, although in a small minority of people, it does look to be hereditary.  Basically, it is an autoimmune disorder.  This is why it is treated with immunosuppressants, either steroids or cyclosporine-type drugs.  I took cyclosporine for almost 6 years, and it did seem to hold the fsgs at bay, but then suddenly my egfr dropped below 20, and my neph decided that this drug had done all it was going to do and took me off of it.  You reach a point where the med damages your kidneys more than it helps.

[Riki]

this is probably a question for another thread, but would it affect transplanted kidneys as well?  No one has ever been able to tell me why the transplanted kidneys scarred so much, and with the second one, so quickly, in only 3 years.

[MooseMom]

this is probably a question for another thread, but would it affect transplanted kidneys as well?  No one has ever been able to tell me why the transplanted kidneys scarred so much, and with the second one, so quickly, in only 3 years.

Yes, it can affect a transplanted kidney, but it's not a certainty.  There are therapies they can use to slow down the sclerotic process.

[Riki]

I'll have to put questions about that on my list.  No one would even look into why there was so much scarring in such a little time, especially when one of the doctors on the team believed that I was causing harm to my kidney to get attention.

[MooseMom]

I'll have to put questions about that on my list.  No one would even look into why there was so much scarring in such a little time, especially when one of the doctors on the team believed that I was causing harm to my kidney to get attention.

OMG, really?  That's just deplorable!

[Riki]

yeah.. I can tell stories about how badly I've been treated since I left the children's hospital and started going to the adult hospital.  Sometimes I wish I didn't have to grow up so I could stay at the children's hospital.

[Ken Shelmerdine]

I am still peeing alot at the center they don't take anything off. I have gone 6 days with out D and felt pretty good alittle tired but take a nap and I am going good again. So it makes me wonder how bad my kidneys are? The Neph says both kidneys are running at 2%  thats a total of 4% I don't think that is right and really can't trust what he says anyway.

Needlephobic why have you gone 6 days without Dialysis. Is that your own decision or your clinic's. I too do not have any UF taken off as after having been on dialysis for 4 years my output has never reduced even though my GFR is 6%. 

[Ken Shelmerdine]

It all depends on what kind of kidney disease you have as to how fast your output tails off.

But there is also another issue which I have mentioned before. How big a part does fluid removal by dialysis contribute to accelerating the deterioration of the kidneys' remaining ability to naturally remove fluid from the blood?

Whether to remove fluid or not is based on an extremely flawed method of ascertaining so called 'Dry Weight'. It is flawed because it does not take into account the possibilities of increased or decreased bodyweight from D Session to session and weight of clothing which will inevitably also vary. Dry weight assessment is treated as an absolute and not the vague approximation that it so obviously is.

The consequence of all this is that many patients have fluid removed sometimes quite needlessly and remember that for every dialysis session involving UF removal a strain is put on the heart resulting in long term cardiac problems and a quicker deterioration of urine output than would be the case if left to natural causes related to kidney failure.

It is my belief that there are many patients who present good urine outputs who should not be having fluid removed in  any way shape or form but are routinely pressured into doing so. There is a sort of 'Guilty until proved innocent' Kangaroo court mentality about whether or not the patient is carrying extra fluid as such the verdict is always 'Guilty!'

I say to anyone first starting dialysis that if you are aware that your urine output has not decreased in any way then resist the attempts of the staff who will insist on removing fluid from the first session onwards.

While they are 'Experimenting' with fluid removal to establish your 'Dry weight' they are actually gambling with your health as a wrong assessment in UF removal can drastically lower your BP or much worse cause a cardiac arrest.

Instead insist on a slow period of assessment which does not involve fluid removal. Maybe a week or two weeks to see how your weight may or may not fluctuate then make the decision yourself. 

[RichardMEL]

I am still peeing alot at the center they don't take anything off. I have gone 6 days with out D and felt pretty good alittle tired but take a nap and I am going good again. So it makes me wonder how bad my kidneys are? The Neph says both kidneys are running at 2%  thats a total of 4% I don't think that is right and really can't trust what he says anyway.

I do not think that, in this case, 2+2=4. When they say the kidneys are running at 2% that's a total. The measurements are taken as a whole and calculated to give your total renal function.

I also find it somewhat concerning that you have gone nearly a week between treatments. If this is your neph's decision then it's a bit odd as I would think 1 D session a week to be highly irregular and certainly not giving you enough dialysis - specially at eGFR 2 (or 4). If it is your decision then I consider this highly dangerous to yourself. Yes, you feel good but I do not believe that will last, and you're doing yourself a serious disservice in my view if you are skipping treatments.

Please reconsider if you are skipping.

[texasstyle]

Well as usual, I got some good information on the cause of decreased urine output. The scarring makes sense. I tried looking it up on the computer and wa-lah, you guys knew it! It helps so much when you understand why something is happening.Then, I try explian it to my husband and he'll think I'm speaking another language lol. As the caregiver I feel I need to now .

[RightSide]

FSGS is short for focal segmental glomerulosclerosis.  The glomeruli become inflamed and then scar over.  The scar tissue does not perform like normal healthy renal tissue.  Gradually, your kidneys just scar over completely.  They don't know what causes it, although in a small minority of people, it does look to be hereditary.

There is now evidence that it's genetic.  They've even identified likely genes that increase susceptibility to it.

http://en.wikipedia.org/wiki/Focal_segmental_glomerulosclerosis

http://www.ncbi.nlm.nih.gov/omim/603278

Evidently there are several different genes that can predispose to FSGS, which may explain why different patients have such different experiences with it (slow, fast, nephrotic syndrome, etc.).

Because my damaged kidneys can still produce some urine despite FSGS, I don't tend to put on much fluid.  Which made putting me on sodium modeling (sodium profiling) rather ridiculous--a sodium profile in which only half a kilo of fluid is removed is worse than doing nothing at all.  I had to complain to get it stopped, but I got it stopped.

[MooseMom]

Yes, but "genetic" doesn't necessarily mean "hereditary".  No one in my family has fsgs but me.  You could say everything about you is "genetic", I suppose.

[Riki]

exactly.  I'm the only one in my family that has kidney disease at all

[RichardMEL]

Me too, but then you begin to wonder - what if older generations, or past generations, had some form of kidney disease that was never picked up? What if it never progressed to the stage that it would be? I mean I was only diagnosed because of a bit of a fluke that I started a govt. job and had to do a medical for it and they found protein in the urine - otherwise it might not have been picked up until things got REALLY bad, because I didn't really have symptoms except tiredness right up till I started D at GFR 6. Maybe, just maybe, previous generations in my family did have some form of FSGS that didn't atack them so badly, or just wasn't picked up.

Really though my neph said he thought my FSGS didn't come from a genetic thing but through an untreated UTI when I was a baby (I had like 14 operations on my eyes at that time, and maybe they were too busy screwing up my top bit and didn't check the bottom bit!  ).

Whatever the cause I've got it (and my brother and sister do not, which seems to suggest that at least in my family it's not genetic, but then again my brother and sister have perfect eyes, while I got the genetic eye disorder from my mother, so maybe.....)

I try to not spend too much time dwelling on such things - it doesn't help really... and even if it did come from a grandparent or something somehow the only point of knowing that would be to get all descendents monitored - as far as I know though my cousins, uncles etc have all been free - which is great for them

[Riki]

no one in my family has eyesight problems either so I'm not thinking it's a genetic thing, even though I was told that it was a genetic disease, where both my parents would have to be carriers.  When I looked up the signs and symptoms of the disease,I only had 2, kidney disease, and blindness, so I think the genetic disease thing is a crock.

I was originally told that my kidney disease was caused by kidney infections that I had with no symptoms between the ages of 7 and 12, when my kidneys failed. But that doesn't explain why my 2 transplanted kdineys were also riddled with scar tissue.  Whenever I asked about the scar tissue, all I ever got was shrugs.  No one ever wanted to look into it, and that bothers me. I'd hate to get another kidney, only to lose it in a few years due to scar tissue.

[MooseMom]

Riki, I think it is really odd that your doctors aren't more curious about what caused the scarring in your transplanted kidneys.  That's just intellectually lazy. 

No one knows what caused/triggered my fsgs, but the prevailing theory is that it was my pregnancy.  When you think about it, a woman's immune system has to be compromised in some way when she is pregnant so that the developing baby won't be "rejected".  Perhaps in me, pregnancy triggered whatever it is that makes my body attack my kidneys.  But then again, maybe it is just a coincidence; maybe I already had fsgs and pregancy served to exacerbate it.  It doesn't make any difference, and I don't think about it much, but if I were in the medical field, I'd be curious and would want to solve the puzzle.