To pee or not to pee ?

[Sugarlump]

Here's my quandary...
I have four kidneys, my two native ones shrunk and shriveled with glomerulonephritus and two transplanted kidneys, that both failed.
The first one with CMV that again has shriveled up. The second (Dec 2010) that failed a year later with antibody rejection.
My urine output stopped over a year ago.

Over the last month, I suddenly have needed to pee on waking. And sometimes last thing at night. It's probably about 150ml a day and I know that's not huge, but why
have I suddenly started to produce urine again? Has one of my kidneys woken up or healed a little? Can this actually happen?
I know 150ml isn't going to keep me off dialysis but I still find it amazing!

It also coincides with me feeling a lot better. Livelier.
(The Doc came in on Friday and said my last blood test showed my hb to be 8.7 and was I feeling poorly or breathless? No I'm not...)
And that is just as odd.

For the first time in a very long while, I am bouncing out of bed in the morning.... Anybody got any explanations???
PS> I am not complaining, long may it last!!!!

[Jean]

Absolutely no idea why this is happening, but it sure does sound good for you. Hope it continues to improve.

[obsidianom]

That is really interesting. My guess is its the last transplant that is working a little for some reason. Perhaps the rejection is calming down? I would love to have you keep us informed of urine output over time. Also watch your BUN and creatinine over time to see if there is a slight improvement.  Also see if you need less UF during dialysis.

[cariad]

Aw, Sugar, this is fab news! There have indeed been rare instances of this recorded on IHD. Here is one I remember from a few years ago: http://ihatedialysis.com/forum/index.php?topic=16613.msg288961#msg288961

I'm hoping that you continue this miraculous trend. You've been through so, so much I think the universe owes you a big fat break!

[Sugarlump]

Trust me I'm praying for even a little break.
Every extra ounce or bounce of energy makes me smile.
I never thought I'd get so excited at a little pee!!!

[MooseMom]

Oh wow!  Sugarlump, long may you pee!!

[RichardMEL]

Very interesting SL!! I wouldn't go drinking heaps more though.. not just yet!

Did you mention to the doc about the pee etc? Did labs show any improvement in GFR/creat levels?

it is odd that your hgb would be so low yet you feel good. That is interesting. Are they doing anything (eg: epo) for the low hgb?

fingers crossed there's a pre-cambridge miracle happening here

[Sugarlump]

They have changed my epo from aranesp to eprex (which I am having 3 x a week.)  The only alternative is a bone marrow investigation and if they found anything likely to be untreatable anyway so I ain't keen on that!!!
I have just bounced out of bed at 6am (on a dialysis day too) and passed quite a lot of pee this morning  It's very odd. Be interesting to see this months bloods. I thought I might email my transplant surgeon and ask him. Can a transplanted kidney start working after 2 year quiet???Perhaps I am phenomenon 

[obsidianom]

You may need iron too.
Did you measure the urine this time?  You should measure it DAILY for now and DOCUMENT it. This could be important to prove what is occurring and it will effect your dialysis.

[cariad]

Can a transplanted kidney start working after 2 year quiet???Perhaps I am phenomenon 

I would guess that it is exceptionally rare, but possible all the same. I have everything crossed for you.

And there's no 'perhaps' about it, dear.... 

[Sugarlump]

Giggles  I am so looking forward to meeting you in April Cariad 
I have saved a bottle of English champagne for the punting!!!
 

[RichardMEL]

English.... Champagne? You know you will be overrun by frogs for that insult....

English... Sparkling Wine.... no it sounds even worse. Though I shall partake, but that is a WHOLE other story and thread....

(I will be drinking French bubbles on either side of my visit to the UK though.... The Dom 2005 please )


---

I agree with the plan to document - document your input and output for a set period - a day, 3 days, a week. See if it is consistent vs what you imagine - it could be very useful.

When are the monthly bloods done and when will you know?

and yes Cariad is ace

[Sugarlump]

OK OK You purists it is English wine in champagne style!!! But because of global warning and a gradual change in the weather, we have become far more suited to grape growing
and I am told this "champagne" is very good. It's won prizes!!!

Monthly bloods next Wednesday, but studying last month's detailed results I noticed pre-dialysis figures of both creatinine and urea are lower than usual.
I will start to measure it now but last night I had to get up at 3am for a pee!!!!! First time in about 18 /20 months.... and more importantly, after dialysis too...
Something weird is happening somewhere!!!!

[obsidianom]

OK OK You purists it is English wine in champagne style!!! But because of global warning and a gradual change in the weather, we have become far more suited to grape growing
and I am told this "champagne" is very good. It's won prizes!!!

Monthly bloods next Wednesday, but studying last month's detailed results I noticed pre-dialysis figures of both creatinine and urea are lower than usual.
I will start to measure it now but last night I had to get up at 3am for a pee!!!!! First time in about 18 /20 months.... and more importantly, after dialysis too...
Something weird is happening somewhere!!!!

Maybe you discovered a fountain of KIDNEY YOUTH ?  This is  really interesting . Whatever is happening has to be good . Keep it up or as they say, pee it away.

[cariad]

Giggles  I am so looking forward to meeting you in April Cariad 
I have saved a bottle of English champagne for the punting!!!
 

Why, you charming hostess, you! I'll be there, glass in hand....

Absolutely spectacular about the weeing in the wee hours! Only on IHD could I respond to this with 'Congratulations' and people would know that I truly mean it!

and yes Cariad is ace

Smooth talker.... *blush*

[Hemodoc]

I hope you have contacted your transplant center. They may have written off your kidneys and may need to reevaluate your treatments. Yes, there are many forms of acute kidney injuries that can recovery. Having any level whatsoever of residual urinary function is a very important survival determinant. Once again, I trust your medical team has been apprised of this wonderful development. I would hope you can work with them to do whatever is possible to preserve this newfound recovery. Congratulations, this quite a positive development that yes, they should explore and explain as soon as possible. Of interest is the question whether you should have a diuretic to help with urine production. There is evidence that diuretics can prolong residual renal function. Just one of many questions you may consider with your medical team. In addition, there are many medications that can hinder residual renal function and you should have a discussion with your medical team on these issues as well. Likewise, there are blood pressure medications that can improve renal function and preserve renal function so your medical team should review your situation with that in mind as well. Once again, this is a VERY positive occurrence for you medically with many benefits beyond simple fluid control. Here is a short article on some of these issues:  http://www.advancesinpd.com/adv11/Part3/112.pdf

[RichardMEL]

I think this is about the only group who would think that "something weird may be happening" and "weeing in the wee hours" is something to potentially get excited about

It certainly seems odd, but maybe, just maybe, Sidney is finding some strength. Who knows when Danny gets over there Sid may totally wake up!! this is very interesting to follow and of course my fingers are crossed that this isn't just a weird nothing but the start of something... umm.. golden!

[Sugarlump]

I am peeing on average 250ml a day (Yeah I know not huge) some days 300ml - 200ml . For the last 7 days 1.7 litres...
I probably never passed more than 100-150 ml a week beforehand.
Bloods on Wednesday, so will see if any significant changes... but am feeling well. 
When I first started dialysis back in 2005 my in between dialysis urine collection was only 1.5 litres approx.
So it is significant to me ... 

[talker]

Here's my quandary...
I have four kidneys, my two native ones shrunk and shriveled with glomerulonephritus and two transplanted kidneys, that both failed.
The first one with CMV that again has shriveled up. The second (Dec 2010) that failed a year later with antibody rejection.
My urine output stopped over a year ago.

Over the last month, I suddenly have needed to pee on waking. And sometimes last thing at night. It's probably about 150ml a day and I know that's not huge, but why
have I suddenly started to produce urine again? Has one of my kidneys woken up or healed a little? Can this actually happen?
I know 150ml isn't going to keep me off dialysis but I still find it amazing!

It also coincides with me feeling a lot better. Livelier.
(The Doc came in on Friday and said my last blood test showed my hb to be 8.7 and was I feeling poorly or breathless? No I'm not...)
And that is just as odd.

For the first time in a very long while, I am bouncing out of bed in the morning.... Anybody got any explanations???
PS> I am not complaining, long may it last!!!!

Hello SugarLump,

Much can be said /added here yet as was stated in my other post:

http://ihatedialysis.com/forum/index.php?topic=30753.msg479017#msg479017

"There are a few more goodies, so the bottom line would be:
don't give up hope,
                          expect a miracle,
                                                pray as if you were going to die the next moment in time,
                                                                                                                                 but live life as if you were going to live forever."

talker

[lainiepop]

Wow sugar sounds positive keep us updated i am hoping u are indeed a 'phenomenon' lol. Happy peeing And i do believe in miracles xxx

[RichardMEL]

So Wednesday is now done for you.. when do you get results?

Also for your 250-300ml of output a day how much are you drinking?

If nothing else at least you know you can drink a little bit more which is a bonus. another cup of tea

[Sugarlump]

So Wednesday is now done for you.. when do you get results?

Also for your 250-300ml of output a day how much are you drinking?

If nothing else at least you know you can drink a little bit more which is a bonus. another cup of tea

Yeah one more cup of tea a day ... haven't noticed a particular drop in fluid gain so expect I am cimpensating for it with an extra drink!!!
Will get blood test results on Friday.
Then hoping to arrange ultrasound to look at transplanted kidney to assess blood flow... 

[Sugarlump]

  A Little update 
I have topped the 2litre mark this week!!!!!
Await next lot of bloods on the 1st...

[Deanne]

That's incredible! May you pee forever! I can't wait to hear how your labs come out.

[lainiepop]

great news cant wait to c ur labs!!