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Dialysis: Transplant Discussion
Goodbye ESRD
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Topic: Goodbye ESRD (Read 7952 times)
cariad
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What's past is prologue
Goodbye ESRD
«
on:
March 17, 2011, 04:33:12 PM »
I received a call about an hour ago from the research RN. She managed to corral my surgeon in between operations and get him to read my biopsy.
It came back with no signs of rejection. I am off Prograf and the 3 other drugs I take. I still have to finish the course of antibiotic that I started two days ago, but then I will no longer have to take meds every day. It has been almost exactly thirty-five years. I am so delighted that I wanted to start a fresh thread to celebrate. My one year transplant anniversary is tomorrow. We are going out to dinner with a friend from England tonight. I am overwhelmed. And very grateful for everyone on this site.
Excuse me a moment while I do a little victory dance.
Kidney Failure, you picked the wrong child to tangle with all those years ago. I win.
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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
willowtreewren
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My two beautifull granddaughters
Re: Goodbye ESRD
«
Reply #1 on:
March 17, 2011, 04:36:45 PM »
This is Soooooooo much better than the other post I read from you earlier today.
Wonderful news. And revel in this new life!
ESRD....take that....
Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011.
Marsh
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Re: Goodbye ESRD
«
Reply #2 on:
March 17, 2011, 05:04:20 PM »
Yeah!!
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galvo
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Re: Goodbye ESRD
«
Reply #3 on:
March 17, 2011, 05:11:27 PM »
Bloody ripper.
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Galvo
MooseMom
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Re: Goodbye ESRD
«
Reply #4 on:
March 17, 2011, 05:44:49 PM »
Oh, that's just wonderful! Thirty five years is such a long time. I've had CKD for 20 years now, so I have an idea of what this disease takes out of you. But now I guess we really do have a cure for ESRD!
I have a couple of questions for you, but I'll put them on your other thread because this is a CELEBRATION thread!!!
I'm tempted to say that you are lucky, but I don't think luck had anything to do with it. Your success is the result of a lot of hard work from a lot of people, including you and your husband, so BRAVO!
Logged
"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."
RightSide
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Re: Goodbye ESRD
«
Reply #5 on:
March 17, 2011, 06:12:46 PM »
That's just amazing--and wonderful.
You are making history. You truly have beaten kidney failure.
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jbeany
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Cattitude
Re: Goodbye ESRD
«
Reply #6 on:
March 17, 2011, 06:27:24 PM »
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"Asbestos Gelos" (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter". A term used by Homer for invincible laughter in the face of death and mortality.
YLGuy
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Re: Goodbye ESRD
«
Reply #7 on:
March 17, 2011, 06:30:47 PM »
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carol1987
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Re: Goodbye ESRD
«
Reply #8 on:
March 17, 2011, 07:55:22 PM »
Wonderful!!!!
Logged
Diagnosed with PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
boswife
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us and fam easter 2013
Re: Goodbye ESRD
«
Reply #9 on:
March 17, 2011, 08:01:44 PM »
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Chris
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Re: Goodbye ESRD
«
Reply #10 on:
March 17, 2011, 08:13:05 PM »
That's great Cariad!
So do you still take other medications such as aspirin/ bp/ cholesterol/ as example to help keep kidney healthy and flowing well?
Logged
Diabetes - age 7
Neuropathy in legs age 10
Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
-glaucoma and surgery for that
-cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
- vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection
Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000
Kidney and Pancreas Transplant - December 3, 2000
Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures - Priceless
No two day's are the same, are they?
okarol
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Photo is Jenna - after Disneyland - 1988
Re: Goodbye ESRD
«
Reply #11 on:
March 17, 2011, 08:34:06 PM »
Lovely post - I am so pleased - you took a chance with this protocol - it took courage and faith - best wishes for many, many good years!!
Happy dance!!!
Logged
Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story --->
https://www.facebook.com/WantedKidneyDonor
Please watch her video:
http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock!
http://www.livingdonorsonline.org
-
News video:
http://www.youtube.com/watch?v=J-7KvgQDWpU
Lillupie
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wedding 12-10-11
Re: Goodbye ESRD
«
Reply #12 on:
March 17, 2011, 08:36:55 PM »
So, does this mean you are cured?
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"
It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!
dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
Zach
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"Still crazy after all these years."
Re: Goodbye ESRD
«
Reply #13 on:
March 17, 2011, 08:52:33 PM »
Persistence pays off!
Excellent!
Logged
Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant. Not yet, anyway. Only decided to be listed on 11/9/06. Inactive at the moment.
I make films.
Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat 5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600; Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -): 2,450 Calories, 84 grams Protein/day.
"Living a life, not an apology."
rsudock
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will of the healthy makes up the fate of the sick.
Re: Goodbye ESRD
«
Reply #14 on:
March 17, 2011, 10:25:16 PM »
Cheers!
Awesome!!!
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
monrein
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Might as well smile
Re: Goodbye ESRD
«
Reply #15 on:
March 18, 2011, 05:06:05 AM »
Best news ever!
Logged
Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr. 2009
Second trx doing great so far...all lab values in normal ranges
chook
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Born to be a Granma!
Re: Goodbye ESRD
«
Reply #16 on:
March 18, 2011, 05:37:40 AM »
Hurray for you, Cariad. That is a remarkable achievement!
Logged
Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
RichardMEL
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Re: Goodbye ESRD
«
Reply #17 on:
March 18, 2011, 09:11:21 AM »
WOW!! I nearly fell off my chair reading this!!!! Amazing!!!
no meds every day?!! omg!!!!
YAY!!!!!!!!!!!!!!!!!
Logged
3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!!
BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
MakeMyDay
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Re: Goodbye ESRD
«
Reply #18 on:
March 18, 2011, 09:39:51 AM »
Simply amazing!
I hope this new method is used all over the world soon. It will help millions of us. Terrific news.
Good for you.
Logged
"So it's written, so it shall be done."
May 2010 : started HD
Dec 2010 : switched to PD
Jan 2011 : completed transplant eval @ Mayo Arizona
Nov 15th 2011 : Successful living donor transplant @ Mayo
Jean
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Re: Goodbye ESRD
«
Reply #19 on:
March 18, 2011, 10:11:52 PM »
Awesome Cariad!!!! Good Job!!!
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One day at a time, thats all I can do.
cariad
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What's past is prologue
Re: Goodbye ESRD
«
Reply #20 on:
March 19, 2011, 06:13:46 PM »
IHD members, thank you all. It means so much to me that all of you are willing to share in my joy.
To answer the questions: I am still taking over the counter Strontium and calcium/vitD/mag capsules to build bone mass. Once a month, I take Boniva for the same reason. My blood pressure tends to run a bit low, so no meds for that. I was supposed to have a fasting lipid panel drawn, but when they told me to eat a light breakfast before my biopsy, I somehow did not psychically understand that this meant "don't eat anything, we need to take fasting levels". So, I will get that panel drawn next week, but my cholesterol was within the normal range even without fasting, so I don't imagine there will be a problem. I have never taken cholesterol meds before.
Am I cured? Well, I have no underlying disease to cure, so I would say, yes, I am cured of end-stage renal failure. I think the main point to keep in mind is that I now have my husband's immune system as well as my own, with 100% chimerism that has lasted a full year, so in theory I have the same chance of losing my kidney function as any other person walking around with only one kidney, but no history of renal failure. I think Gwyn and I now have an equal chance of losing our kidney function, and it won't be from rejection, it will be from aging and just normal, unavoidable wear and tear. I should know after the first few blood draws if there is going to be a problem with my labs going wonky. I know the surgeon would likely shudder if he thought I was telling people I was cured, but that is how it looks and feels to me! He told me repeatedly before I enrolled in the trial "I don't want you to think that this is necessarily the answer" and I respect that and understand that we are in such early days even still, but until my labs show otherwise, I am
cured
!!!!
For our one year anniversary we went out to my favorite restaurant. The Scotsman was there, and he had been picking on Milwaukee a fair bit up until then. He had just come from DC where an incredibly wealthy company had hosted them at a grand gala with posh dinner and all. He said that the organic, grass fed steak that he had at this restaurant was far superior to the filet mignon that he had in DC. Our waiter was a South African with a masters in sustainable energy, and a hardcore rugby and cricket fan, so the boys had a blast. My older son talked alternative energy with him, telling him about his science fair project that is coming up. They are testing Aidan's radio/torch that has either a hand crank or a solar panel to charge up the internal battery. Aidan predicts that the solar panel will provide more energy from 5 minutes of charging than the hand crank. The server immediately asked how big the panel was, and gently broke it to him that he believed the hand crank would prevail. My younger son ran up and gave him a hug at the end of the night. Excuse me, but Liot does not hug just anyone - this man obviously charmed his way into my children's lives. We had an amazing wine from the Barossa Valley, and I had gnocchi with a tomato/kale sauce. I joked with the waiter that the chef must give me his kale secret (I've never had kale so delicious, and kale is a CSA staple) and our waiter actually retrieved that information for me! He also had the chef make special grilled cheese sandwiches for the kids. My younger son and I split their creme brulee for dessert, while my older boy had chocolate brownie with banana ice cream, and the two men had chocolate mousse.
Our support person rang up Gwyn during dinner, so we could thank him once again. It was truly just a perfect evening.
Once again, I so appreciate you all taking the time to reply. Thank you, thank you, thank you!!!
Logged
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
Chris
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Re: Goodbye ESRD
«
Reply #21 on:
March 19, 2011, 07:07:50 PM »
How often due you have to do labs now cariad?
Logged
Diabetes - age 7
Neuropathy in legs age 10
Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
-glaucoma and surgery for that
-cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
- vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection
Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000
Kidney and Pancreas Transplant - December 3, 2000
Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures - Priceless
No two day's are the same, are they?
cariad
Elite Member
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Posts: 4208
What's past is prologue
Re: Goodbye ESRD
«
Reply #22 on:
March 19, 2011, 07:46:35 PM »
Quote from: Chris on March 19, 2011, 07:07:50 PM
How often due you have to do labs now cariad?
Back on twice a week. The big draws, the chimerism draws, are more frequent for a while, too. We had one right before the biopsy, we'll have one in a month, and we'll have one in 3 months.
Twice a week is fine with me - I no longer have to worry about timing it with Prograf. I think that will be reduced again in a few months.
Oooh, but Chris, I have news about one of your doctors. You may already know, but I'll shoot you a quick email to be sure....
Logged
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
carol1987
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Re: Goodbye ESRD
«
Reply #23 on:
March 19, 2011, 10:22:53 PM »
I am amazed and so happy for you!! A toast to your continued good health..
Logged
Diagnosed with PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
Chris
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Posts: 9219
Re: Goodbye ESRD
«
Reply #24 on:
March 20, 2011, 04:05:54 PM »
Every two weeks is well still bad compared to once a month...lol I want a break from twice a week labs, well my vein and right arm does.
Thanks for the email.
Logged
Diabetes - age 7
Neuropathy in legs age 10
Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
-glaucoma and surgery for that
-cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
- vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection
Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000
Kidney and Pancreas Transplant - December 3, 2000
Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures - Priceless
No two day's are the same, are they?
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