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Author Topic: Kidney with Bone Marrow Transplant  (Read 55768 times)
PrimeTimer
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« Reply #150 on: July 21, 2014, 06:41:25 PM »
Hope you feel better soon, Ninanna and up to giving 'em he77 because if you are, that would probably be a good sign that you're ready to go home! Maybe even add another confession to the bad patient thread.  :clap;
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Ninanna
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« Reply #151 on: July 22, 2014, 08:51:30 AM »
Woo! They are letting me out!  I can't wait to get some real food. I am going straight to Thai Arroy when I get out. I might be pulling a Deanne and sneak out without a person lol.
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
Deanne
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« Reply #152 on: July 22, 2014, 09:10:17 AM »
 :yahoo;

on your escape! Let me know if you need me to help you make a run for it. You can give me the phone number for the nurses station. I'll call to tell them I'm just around the corner and can you come down alone, because I'm kind of shy and don't want to interact with strangers.

Or I'll call to see if I can create a telephone diversion while you make a run for it.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
lainiepop
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« Reply #153 on: July 22, 2014, 11:08:03 AM »
wonderful news! :2thumbsup;
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
Ninanna
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« Reply #154 on: July 22, 2014, 05:17:16 PM »
Haha Deanne, thanks, you are too funny!  I was able to get by though telling them my bf was one the way and that I was just going down to the pharmacy to pick up my prescription. I guess since he brought me in and they had seen him around everyday they weren't too concerned.

In other news, my bill must have finally reached a really huge amount for the year because I got my own personal "meeting" with the BCBS agent on site at Hopkins lol.
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
jeannea
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« Reply #155 on: July 23, 2014, 08:44:59 AM »
Interns can be pretty amusing. I once had one who had some kind of bottomless pocket. Every morning he came in around 5am to do his rounds. He would start emptying his lab coat pocket on my bed to look for what he needed. He had so much crap in there. Then he would stuff it all back in his pocket and leave and I guess repeat it in every room. Unfortunately, he wasn't very good at his job. I could hear the real docs quizzing him outside my room and it never went well.

I figured they'd be all over you like leeches. Tons of blood tests. Those units of blood were just to replace what they took out, right?

Glad you're getting out. My niece was in the hospital in 2010 for 9 months, mostly ICU. After the first $3 million spent, you get special attention.
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cariad
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« Reply #156 on: July 23, 2014, 01:59:39 PM »
Quote from: Ninanna on July 21, 2014, 04:36:39 PM
the oncologist on call was about to just send over an antibiotic prescription and call it a day, but the more she looked at my chart the more she was like, "oh, you have a unique complicated history, I need to consult with another doctor on how aggressive they want to be, I'll call you back"
I got the 'you're too complicated for your local ER' too. Few things are as depressing as being wrung out and facing a 90 minute drive down to Chicago at midnight.

Glad they released you. I guess I was cheap - no insurance or hospital billing rep ever offered to meet with me.
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MooseMom
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« Reply #157 on: July 23, 2014, 02:27:56 PM »
Did you enjoy your Thai food?  Sounds yumtastic! 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Ninanna
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« Reply #158 on: July 23, 2014, 03:15:38 PM »
Quote from: jeannea on July 23, 2014, 08:44:59 AM
Interns can be pretty amusing. I once had one who had some kind of bottomless pocket. Every morning he came in around 5am to do his rounds. He would start emptying his lab coat pocket on my bed to look for what he needed. He had so much crap in there. Then he would stuff it all back in his pocket and leave and I guess repeat it in every room. Unfortunately, he wasn't very good at his job. I could hear the real docs quizzing him outside my room and it never went well.

Ha!  thanks for that  :rofl;

Quote from: jeannea on July 23, 2014, 08:44:59 AM
I figured they'd be all over you like leeches. Tons of blood tests. Those units of blood were just to replace what they took out, right?

Between that and the blood that went all on the floor....the tech couldn't get any blood return out of my IV, so she had to stick me.  Unfortunately she didn't think far enough ahead to grab some gauze.  All she had was this band-aid, and I could see what was going to happen.  She pulled the needle and blood starting going everywhere.  I pulled the tourniquet off my arm to help stop it, all while cackling like a mad woman (I'm sure they thought I was).  Seriously though that's the only bad tech incident I've had since I've been there.  The lady the night before managed to put an IV in and draw several tubes of blood all while I was puking into a bucket.

Quote from: jeannea on July 23, 2014, 08:44:59 AM
Glad you're getting out. My niece was in the hospital in 2010 for 9 months, mostly ICU. After the first $3 million spent, you get special attention.

Yeah I'm definitely glad to be out.  The only bummer was I had to reschedule an interview I had a work for a new position (for me).  Work has been great, but I always hate showing things that can be perceived as weak.
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
Ninanna
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« Reply #159 on: July 23, 2014, 03:17:45 PM »
Quote from: cariad on July 23, 2014, 01:59:39 PM
I got the 'you're too complicated for your local ER' too. Few things are as depressing as being wrung out and facing a 90 minute drive down to Chicago at midnight.

Man, I can't even imagine that.  I'm so fortunate I only live 4 miles from Hopkins.

Quote from: cariad on July 23, 2014, 01:59:39 PM
Glad they released you. I guess I was cheap - no insurance or hospital billing rep ever offered to meet with me.

Thanks!  And don't worry, you aren't missing out on anything.  They only care because they want you to stop spending their money.
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
Ninanna
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« Reply #160 on: July 23, 2014, 03:18:15 PM »
Quote from: MooseMom on July 23, 2014, 02:27:56 PM
Did you enjoy your Thai food?  Sounds yumtastic!

It was heaven!  Thanks for asking :)
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
Ninanna
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« Reply #161 on: August 06, 2014, 09:51:24 AM »
So some good news today!  Chimerism is 100% and I have zero antibodies!  The kidney biopsy also went well and came back negative for rejection. The only hold up now is the biopsy slides have to be re-read by an independent pathologist, and that could take up to a week. But once we get the green flag for that I can start weening. I think the plan is to be off the cellcept in 2 weeks, and off the prednisone in 4 weeks. They are pretty confident that the kidney will be great and I think their only real concern at this point is to watch for GVHD.
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
jeannea
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« Reply #162 on: August 06, 2014, 12:05:57 PM »
Congrats! Fabulous news!  :bandance;
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SooMK
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« Reply #163 on: August 07, 2014, 05:23:06 AM »
So exciting!
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
noahvale
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« Reply #164 on: August 07, 2014, 06:48:23 AM »
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« Last Edit: September 18, 2015, 08:58:43 PM by noahvale » Logged
cassandra
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« Reply #165 on: August 07, 2014, 02:42:38 PM »


        :bandance;     :bandance;       :bandance;



Fantastic!!!!!

Lots of love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
cariad
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« Reply #166 on: August 09, 2014, 12:31:25 PM »
Quote from: Ninanna on August 06, 2014, 09:51:24 AM
So some good news today!  Chimerism is 100% and I have zero antibodies!  The kidney biopsy also went well and came back negative for rejection. The only hold up now is the biopsy slides have to be re-read by an independent pathologist, and that could take up to a week. But once we get the green flag for that I can start weening. I think the plan is to be off the cellcept in 2 weeks, and off the prednisone in 4 weeks. They are pretty confident that the kidney will be great and I think their only real concern at this point is to watch for GVHD.
:yahoo; :yahoo; :yahoo;

Are they tapering CellCept? If so, why? I know why you have to taper pred, but the other doesn't seem to require it. It's been a while, but I could swear that I just stopped taking Myfortic one day, and that is definitely how it went with Prograf.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
Ninanna
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« Reply #167 on: August 09, 2014, 02:21:48 PM »
Thank you so much everyone for the support and cheers!

Cariad: They are tapering everything (prednisone, cellcept, and sirolimus when I get there). Other than the pred I just think it is part of their safety protocol, to hopefully be able to catch a rejection episode in time before the kidney blows up.  It's unlikely to happen at this point but I guess you never know. Interestingly one BMT doc originally wanted to just stop all the rejections meds at once, but the kidney people said "no way" lol.
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
cariad
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« Reply #168 on: August 10, 2014, 10:12:47 AM »
Quote from: Ninanna on August 09, 2014, 02:21:48 PM
Thank you so much everyone for the support and cheers!

Cariad: They are tapering everything (prednisone, cellcept, and sirolimus when I get there). Other than the pred I just think it is part of their safety protocol, to hopefully be able to catch a rejection episode in time before the kidney blows up.  It's unlikely to happen at this point but I guess you never know. Interestingly one BMT doc originally wanted to just stop all the rejections meds at once, but the kidney people said "no way" lol.
Ah, thanks for the explanation, that makes sense I suppose. Always possible I'm remember the myfortic part wrong, but I was on such low doses of immunosuppresants that I don't think there would have been much to work with anyhow. NW does not use steroids unless there is no other option, so pred was thankfully not part of the equation for me. (I was on it for decades, though, so let it never be suggested that I don't know that drug very, very well indeed!)

Well, the theory that high chimerism means immunosuppresants are unnecessary seems to be holding up across different trials, so I have high hopes for you. Zero antibodies should only make them more confident that everything has gone to plan. Smooth sailing wishes to you! I look forward to hearing that you'll be seeing the back of these drugs.  :cheer: :cheer: :cheer: :cheer: :cheer:
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
jeannea
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« Reply #169 on: August 10, 2014, 06:58:20 PM »
Cariad, you are right, it is not necessary to taper CellCept so you might have stopped it cold turkey. It doesn't make you sick like stopping prednisone.
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Ninanna
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« Reply #170 on: August 22, 2014, 03:50:30 PM »
So finally after a lot of delaying getting the biopsy slides read by an independent pathologist and a GVHD scare, I got the green light to start winning (weaning) on Monday!

It will take 4 weeks to get off the pred/MMF, then I have to have a month on mono therapy before they do all the tests all over again and start the rapamune withdrawal.

In other good news, I should be full time again at work in a couple weeks, plus I got a promotion!
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
talker
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« Reply #171 on: August 22, 2014, 05:15:40 PM »
Quote from: Ninanna on August 22, 2014, 03:50:30 PM
So finally after a lot of delaying getting the biopsy slides read by an independent pathologist and a GVHD scare, I got the green light to start winning (weaning) on Monday!

It will take 4 weeks to get off the pred/MMF, then I have to have a month on mono therapy before they do all the tests all over again and start the rapamune withdrawal.

In other good news, I should be full time again at work in a couple weeks, plus I got a promotion!
Ah, finally , like Sinatra used to say

'Did it my way'

only here we gotta say


'FINALLY GOING MY WAAAAAAAAAAAAY'
« Last Edit: August 22, 2014, 06:19:38 PM by talker » Logged
Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever 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."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
jeannea
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« Reply #172 on: August 23, 2014, 08:38:26 AM »
Sounds like life is good!!! Yay!  :yahoo;
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SooMK
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« Reply #173 on: August 24, 2014, 05:45:02 AM »
Most excellent news!
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Maggie and Jeff
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« Reply #174 on: August 24, 2014, 10:39:06 PM »
I really like that you've kept posting.

I'm praying everything works out for you.

Maybe this will be more widely available in the future
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The LORD is my light and my salvation--so why should I be afraid? The LORD is my fortress, protecting me from danger, so why should I tremble?

Jeff is the needle pusher Maggie is the pincushion.
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