Pee Question

[pianoflute2]

Ok, typing this makes me feel weird, but we're not seeing the doctor as often as we were and I've got some questions, so... Here goes

So Daniel is peeing between 150 and 250 ml a day, and it doesn't seem to be dependent on his fluid intake, but it recently changed colors from redish brown to yellow, so that's good, I think. How much urine does he need to be producing to get off dialysis? And I've got his most recent labs, how do I read those to see how his kidneys are functioning? Which numbers are the important ones?
Thank you for your help!!!

[iolaire]

I pee about two liters per day and am on dialysis.  I plugged my last lab results into this tool:
http://www.davita.com/gfr-calculator/
And found that based my GFR I'm still clearly in the  Stage 5 CKD range...

[noahvale]

*

[Michael Murphy]

Personally what I drink I pee.  Just to be sure once a month I check to see if what goes in goes out.  So far so good.  However I have been on dialysis for two years now.  And last month a construction crew almost blew up the dialysis center by cutting a 12 inch gas line.  We were lucky it was a windy day and the gas never concentrated enough to blow up.  However we were evacuated and my treatment was cut by ninety minutes.  The next day I felt worn out and needed to brush my teeth every two hours.  Clearly even with my output my kidneys can't clear the toxins from my body.  On the other hand urine output has one very beneficial effect.  150 ml of output  means that your fluid restrictions would be 1.15 liters of fluid. 

[PaulBC]

First off, don't feel weird about it. I have noticed that discussions about urine are a huge part of this condition. You might as well get used to having to think and talk about it.

The amount isn't the only question. The quality varies. Our nephrologist made a distinction between "dumb" and "smart" urine. Removing excess fluid is important but there is a lot more to having functioning kidneys and not needing dialysis. The urine could look normal but have a lot of protein, and that's a big problem. It could also not be filtering out the things you want to remove, like creatinine. I'm not sure what causes urine to stop, but the kidneys could be in really bad shape (heavy scarring) and you're still getting a lot of fluid but not the fluid you want.

Your doctor will have to test a sample to get a sense of what has improved. What you describe sounds like a good trend. I think it's safe to say there is no set amount that means your kidneys have recovered. There could be a lot and you still need dialysis. As long as there's a chance of recovery, you should keep your hopes up, but ask the doctor for a detailed explanation of any urine test.

[pianoflute2]

I calculated Daniel's GFR and he's at 10 right now, and the lowest he went at the hospital (have those labs too) was about six.
Wow! That sounds scary Micheal! I'm glad nothing blew up!
I don't usually feel weird talking about it, it's just typing about it feels weird for some reason... Now that you mention it I remember one of the doctors talking about dumb pee!

[jeannea]

Getting off of dialysis has very little to do with the amount of urine. It would depend on all his lab values.

I looked back at your last post. I'm unclear. Did the doctor tell you that the lack of scarring in the kidney biopsy meant dialysis should be temporary or did you assume that? I don't know anything about this disease. IMHO, it might be better to try to adjust to the dialysis routine rather than continuing to hope for recovery. Just my perspective. Take it or leave it.

[pianoflute2]

The doctor said the lack of scarring and how quickly the kidney failure came on means that his kidneys are more likely to heal. About two weeks ago the doctor said that if his kidneys aren't better in a month and a half then they won't get better. But I haven't found anything in all my research that says that kidney failure happening quickly means it's more likely to heal.... I just feel off about this whole thing, they (they being the dialysis nurses and the nephrologist) keep talking about his kidneys healing and him getting off dialysis, but the improvements in his labs are tiny and I don't know what to think.

[PaulBC]

But I haven't found anything in all my research that says that kidney failure happening quickly means it's more likely to heal....

The converse is probably true. If the failure is after a long, noticeable decline in kidney function, then there is not much hope of recovery. In my daughter's case, it seemed like it was sudden, and our first doctor said one hopeful sign was that some blood components (I forget what) suggested her kidneys were functioning until recently. But the biopsy showed a lot of scarring, ruling out most of the early optimism. It sounds like your brother has somewhat more reason for hope.  True, "hope is not a strategy", but it's a valuable thing as long as you aren't depending on to solve your problem.

I just feel off about this whole thing, they (they being the dialysis nurses and the nephrologist) keep talking about his kidneys healing and him getting off dialysis, but the improvements in his labs are tiny and I don't know what to think.

This is what I figured out about nephrologists (having had no experience or opinions regarding them until recently). Nephrologists are experts in keeping you alive and as well as possible in the face of kidney failure, and you should depend on them for that. But when it comes to what caused your kidneys to fail and what's going to happen later, their guess is often about as good as yours or mine. They can give a name to my daughter's condition, but they can't explain why it happened (fortunately not an obvious genetic problem anyway).

[pianoflute2]

I guess now that things are so up in the air I'm just stressed out... I feel like any hope is false. And while he was in the hospital I realized he could die, and I accepted that, but now I'm realizing he's going to have to live with this, and that's so hard... I don't even know what I'm saying anymore and I just want to know the future, but I know that's not possible. I'm glad I'm getting this bonding time with my brother, but I miss my home and I hate that he's sick! I just need to calm down and not let my emotions control me. I'm just realizing that I have a lot of emotions surrounding Daniel's illness and it's just become sort of... overwhelming. I'm sorry

[PaulBC]

I can definitely appreciate what a roller coaster this can be, sometimes (not always) a very slow-motion roller coaster. Of course it's overwhelming. I wonder how your brother is taking it. if you want to talk about crazy emotions, I remember being angry with my daughter for not taking her biopsy results with the appropriate degree of despair. She felt pretty good after a week of dialysis, and was the star of the show. But her positive attitude has made this whole thing bearable. It sounded like your brother was having a rougher time coping. Is he doing any better? You really have to throw yourself into the moment, because you're not going to know the future and right now you probably don't even have a good guess at it.

[jeannea]

The whole thing can be pretty shocking. It's ok to feel overwhelmed. Be kind to yourself. You don't have to feel any specific way.

[pianoflute2]

After Daniel got some of the facts on his illness, he just started ignoring the fact that he's sick. He's still taking his medicine, but he's not doing his physical therapy or his occupational therapy, and if you talk about what's going on in front of him or to him, he flips out. He gets angry and tries to yell (his voice has been super quiet since he was on the ventilator) and he starts talking about how much he wants a transplant and for this to just be over. It tears me apart.
The future is all up in the air right now, and that makes me so anxious. It's good that your daughter is coping well!

[PaulBC]

I'm really sorry to hear that. His attitude is actually pretty understandable, given that it came on suddenly and may not even seem real. But I think he needs counseling from someone with experience with his situation--whether or not he's comfortable going that route. If he does eventually get a transplant, he won't have the luxury of staying in denial. That's how people (particularly teens I've heard) lose their transplants. I can see why this is so tough on you. I hope it all takes a turn for the better soon.