I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: LostWife on May 27, 2011, 08:41:40 AM
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:flower;
So long story here. Husband has been through a ton since that month in the hospital in December - another month in April...most weeks from Jan-now. All but the month in April were little things - gout, fluid overload, etc. April was SEVERE peritonitis. REALLY awful, had to go on hemo.
Anyway, two weeks ago we got a call from our transplant coordinator that they were doing a big paired exchange and that they had an extra kidney (I'm assuming altruistic donor?) and they were considering hubby.
Well he's in surgery now! I'm so excited and in such disbelief. My son will actually have a father.
Wanted to let everyone here know as you have all been such an amazing source of support and knowledge and love!
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Wonderful, wonderful news.
Make sure he walks as much as possible to speed his recovery!
Keep us up-dated!
:flower;
:cheer: :cheer: :cheer:
:grouphug;
Aleta
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Great News!!! Here's to a speedy and uneventful recovery :yahoo;
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Great news!!!!...
Onward and upward!...
Congrats to you both....
Darth..
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Excellent News! :yahoo;
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Wonderful, wonderful news, hope all goes well. :bandance; :bandance; :bandance;
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:clap; Wow! That is fabulous!!
Best wishes that all goes well!
:yahoo;
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Honestly never thought I'd be posting here! thank you all.
Surgeon came down and told me things look great. beautiful kidney, he said - already working and producing urine.
So now I need to know - what are my worries now? eep. Here I am still worrying over PTH levels as of the other day...just in shock I guess.
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Woohoo!
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Greatest news :bandance; :bandance; :cheer: Unbleaveable!! Im dancen for ya and theres not a smilie or happy enough icon to post here to show just how happy i am... :flower;
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How Wonderful!!! :cheer: :cheer: :cheer: :cheer: :cheer:
:clap; :clap; :clap; :clap; :clap;
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Awww, that is so fabulous!
:2thumbsup;
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Honestly never thought I'd be posting here! thank you all.
Surgeon came down and told me things look great. beautiful kidney, he said - already working and producing urine.
So now I need to know - what are my worries now? eep. Here I am still worrying over PTH levels as of the other day...just in shock I guess.
CONGRATS to your hubby on his new GIFT OF LIFE!!!! :2thumbsup; :cheer:
:pray; for a speedy and painless recovery!!!
May it bring many yrs of health and happiness for the entire family!!!
I'm So happy for you all!!!!!
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:bandance; :yahoo; :bandance; Happy Dance!!! :cheer: :cheer: :cheer:
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Fantastic news!!! Wishing your husband (and you) a smooth recovery! :cheer: :cheer: :cheer:
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This is wonderful news LostWife. :cuddle; Happy times for you both.
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:2thumbsup;
All is looking really great- creatine at 2.8 and they said it was halfing every day. He got a really good one!!
Thanks for the well wishes. Off to bed.
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:cheer: :cheer: :cheer:
Great news! Keep it coming!
Aleta
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I am SO happy for your whole family.!!!!!! :yahoo; :2thumbsup; :clap;
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That is outstanding news. Hope your husband continues to recover well. You will never stop worrying, it will just get less over time.
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Hi all, thanks for the kind words.
Kidney sort of halted production yesterday. :( they are still trying to figure out the issue. Creatine shot up also. They have done a biopsy and we're waiting for results. The urine production has dropped dramatically. I feel sick. I also feel sad for the donor -
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It could just be a blockage, hopefully an ultrasound will show what's up.
I pray all gets better soon. :pray;
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They have ruled out a blockage, they have ruled out rejection. they wondered if it could be the IGA repeating, but over 3-4 days seems unlikely. I am so so so sad. I don't know what to do now. I'm so lost.
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Don't give up hope. If it isn't a blockage, they may still be able to sort it out.
:grouphug; :grouphug; :grouphug;
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please pray.... Weather you do normally or not, it's a good time to start... For comfort and healing...
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It could be a leak with fluid squeezing the new kidney.
Praying here. :pray;
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Hoping and praying they can fix the problem.
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Any news Lost?
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:grouphug;
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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.
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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!
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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 :cuddle;
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Hoping things continue to improve!!
Keep us updated!
xo,
R
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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...
:shy;
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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...
:shy;
what a trooper!!!
xo,
R
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I'm so glad to hear this good news! :cheer:
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! :2thumbsup;
Very clever of you!
Aleta
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oh my gosh lostW.... that is definatly something i would do...lol............ So glad it helped ya out and eased your worries some...
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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!! :rofl;
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.
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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!
:rofl; :rofl; :rofl;
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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).
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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
:yahoo;
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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.
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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 :flower;
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wow.. 0.7. I have creatanine envy!!!
Such good news!!!
:yahoo; :yahoo; :yahoo; :yahoo; :yahoo;
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:bandance; :bandance; :bandance; :bandance;
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:waving; Just thinking of you!
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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. :)
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sister! this is awesome news!!!!! many hugs and PRAYERS for you both! :cuddle; :cuddle; :cuddle;
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Love the poster, LostWife. So sweet!
;D