Got our call!

[okarol]

It could be a leak with fluid squeezing the new kidney.
Praying here. 

[Sluff]

Hoping and praying they can fix the problem.

[boswife]

Any news Lost?

[jbeany]

 

[LostWife]

All tests coming back negative:

No rejection
No obstruction
U/S look GREAT
No urine collecting in the abdomen
No repeating IGA in the new kidney


They said this started after giving him the initial dose of Prograf.  They are hoping the kidney is "asleep" - it is still producing SOME urine just only a small amount.  Anyone ever hear of this?  They said that they have seen it before.

[LostWife]

Hi All,

Kidney is producing more (MUCH more).  the fear now is that he had undiagnosed fsgs or simplified change disease.  Treating with predisone (which we were hoping to avoid) but hopefully we can get our little kidney in a good spot and can take it home soon!

[boswife]

Glad to hear it's producing MORE now, and truly pray for continued success on all health...  And thats for the both of you.  Tough spot to be in i know.  Sending more prayers and 

[rsudock]

Hoping things continue to improve!!

Keep us updated!

xo,
R

[LostWife]

I feel the need to confess something.  They kept talking about how many CCs the kidney was producing.  I had no frame of reference for this!  So...I ate a bunch of that hospital ice (great stuff btw, like a snow cone), waited til I had to go REALLY bad, and then peed into one of those containers with 1000 CCs measured! 

LOL.  I can't believe I did that.  But I thought I'd fill it up and instead put out only about 350 CCs.   My husband produced about 450 over a three hour period.  This made me feel better.   Crazy things we do for those we love, huh?

Glad to have an anonymous outlet for these confessions!!  hope you enjoy the sentiment...

[rsudock]

I feel the need to confess something.  They kept talking about how many CCs the kidney was producing.  I had no frame of reference for this!  So...I ate a bunch of that hospital ice (great stuff btw, like a snow cone), waited til I had to go REALLY bad, and then peed into one of those containers with 1000 CCs measured! 

LOL.  I can't believe I did that.  But I thought I'd fill it up and instead put out only about 350 CCs.   My husband produced about 450 over a three hour period.  This made me feel better.   Crazy things we do for those we love, huh?

Glad to have an anonymous outlet for these confessions!!  hope you enjoy the sentiment...

what a trooper!!!

xo,
R

[willowtreewren]

I'm so glad to hear this good news! 

When Carl got his kidney and they said there was significant necrosis, they didn't bother to tell us that since the blood flow was good, the kidney would likely regenerate. Oh, the anguish that we could have avoided.

Health care workers forget that we lay people don't know what they are talking about!

So, I do understand wanting to get an understanding of how much 450cc's really is! 
Very clever of you!

Aleta

[boswife]

oh my gosh lostW.... that is definatly something i would do...lol............ So glad it helped ya out and eased your worries some...

[LostWife]

I know I could've just looked on the cup at where 450 CCs was, but I had no reference point as to what a normal output was!  I would've sworn it would be like 1000, I had to pee so bad.  I was alone in the bathroom blushing as I did it!!   

I feel like a nut.  The things we do for love I guess.

He's having a really rough time and is EXHAUSTED.  Poor guy.  But we're making lots of pee jokes.  Hope this continues.

[willowtreewren]

They would not let Carl out of the hospital until he pooped. So the pee jokes can switch to poop jokes, too. It was really hard for him to do that because he just did not feel like eating after the surgery. There was nothing TO poop!

 

[LostWife]

So the wild ride continues.  I'd like to get off now, please!

Kidney function has picked up again and we're home from the hospital.  However the biopsy shows what looks like either minimal change disease or FSGS.  He's spilling about 10g of protein right now.  All other numbers are looking great.

He has (supposedly) IGaN.  So how?  how? how? is this happening?  Well his doc tracked down his original biopsy from 2000 and there is a note written on there about possible FSGS but his doc at the time did/said NOTHING about that.  NOTHING.  I could spit nails. 

I don't really know anything about FSGS.  Web searches are freaking me out.  They are giving him phresis and hoping for the best.   They have to do a more intense biopsy to really figure out what is going on.

I'm so worried that this means we'll have to be right back on dialysis in a few years?  Whatever he has it is slow to progress - his childhood doc said he always had protein spilling, but then didn't progress to failure until 2008 (he's 35).

[okarol]

It's good you're home - hopefully things will settle down - best wishes to you both!
I added your hubby here http://ihatedialysis.com/forum/index.php?topic=4927.0
 

[LostWife]

Back with an update. 

Hubby is home and back at work.  Prednisone being used for the protein problem, and it is now down to 700mg a day.  So we are so hopeful that will stay put and not come back to haunt us.  For now they are not doing a biopsy, since the number dipped - leaving well enough alone.  Which I could not be happier about.

Outside of that the kidney is doing really well.  He got a great kidney, really.  Creatinine is well below 1 (0.7 I think?) and all other numbers look phenomenal.

He had his catheter removed (he had just stopped PD in April, had a catheter in his chest and was about to get a fistula when the call came) and can possibly swim in a few weeks.  We are looking forward to that.

Ended up coming home from the hospital with 40 pounds of excess fluid, which took about 2-3 weeks to pee off, even with lasix.  Now he has some residual foot pain.  His feet took the brunt of the fluid, just looked awful.  He's doing PT and taking lyrica, so we're hoping that all helps.

We didn't get to meet our donor (he didn't come to the party they had for the exchange) so we are trying to craft a letter to him.  It seems he did this just to do a good deed.  I am so amazed and thankful.

Anyway, just dropping in to say hi!  Thanks to you all for everything. 

[boswife]

amazing!!  so good to hear and glad you droped in to let us know..  It's amazing so short ago you were in such a different situation.. Happy things are going good for ya and wish you continued wellness 

[RichardMEL]

wow.. 0.7. I have creatanine envy!!!

Such good news!!!

 

[jbeany]

 

[okarol]

  Just thinking of you!

[LostWife]

Thanks okarol. 

Protein NEGATIVE the past few checks!  could have possibly been simplified change disease, but we won't know unless kidney function changes to the point of needing a biopsy.

Wanted to share with you all a poster I had made for him....ironically, hanging by our hall bathroom. 

[The Noob]

sister! this is awesome news!!!!! many hugs and PRAYERS for you both! 

[Poppylicious]

Love the poster, LostWife.  So sweet!