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Author Topic: I reached my one-year anniversary  (Read 4243 times)
Deanne
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« on: February 09, 2015, 04:04:06 PM »
I had my one-year appointment today. My anniversary is Wednesday. One year ago today, I was snowed in and knew they were going to call, just because it would be very hard to get to the hospital. I was almost right. They called two days after the storm, when I couldn't get around very easily myself, but a friend with a 4-wheel drive vehicle was able to easily come to pick me up. Today we're in the middle of a storm, too, but a wind and rain storm instead. I guess there's just something about this week of the year.

My first year has had ups and downs, but my graft hasn't shown even a hint of rejection, and other than when a recalcitrant stent caused kidney stones and my creatinine went to 1.4, my creatinine has been hanging at around 0.9.

My transplant center told me during my initial evaluation that I'd be on prednisone (the bane of my existance!) forever, but I think they've backed off on this for all of their patients since then. Today the doctor told me I'll have permission to stop prednisone, pending good biopsy results. My biopsy is scheduled on Friday and I should have the results next Wednesday. I'm confident everything will look fine. buh bye prednisone! I hate you with passion!
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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
SooMK
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« Reply #1 on: February 09, 2015, 04:24:08 PM »
Happy first anniversary! Wishing you good news on the biopsy. Hope you can ditch the pred!
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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.
Angiepkd
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« Reply #2 on: February 09, 2015, 05:50:24 PM »
Congratulations!  Very happy for you and wish you continued good health!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
jeannea
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« Reply #3 on: February 10, 2015, 05:51:23 AM »
That's wonderful! I'm so glad you're doing well.
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Bambino_Bear
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« Reply #4 on: February 10, 2015, 06:30:15 PM »
 :cheer: :cheer: :cheer: :cheer: :cheer:

Happy anniversary!!!
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I am a caregiver to my wonderful husband,  He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go. 
He had a transplant in November 2019.
Deanne
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« Reply #5 on: February 10, 2015, 06:37:44 PM »
Thanks all! I think I'll celeb with a long hike. I'm trying to get back into hiking shape to hike up Mt St Helens this summer.
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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
MooseMom
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« Reply #6 on: February 11, 2015, 08:45:08 AM »
Congratulations!  This is great news.  I am sure that Friday will go well and that next Wednesday will bring even better news.  :cuddle;
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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."
lainiepop
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« Reply #7 on: February 11, 2015, 11:16:48 AM »
 :clap;

Wonderful news!! Happy 1 yr anniversary :) xxx
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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 !
willowtreewren
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My two beautifull granddaughters

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« Reply #8 on: February 11, 2015, 01:14:48 PM »
Great news! Carl just had his 4 year anniversary. When he was at the clinic for his checkup, he met a fellow who has had his kidney for 26 years!  :2thumbsup;

Going off the pred will be wonderful. Fingers crossed for you!

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. :)
Deanne
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« Reply #9 on: February 11, 2015, 02:55:46 PM »
For my anniversary gift, I received a cold. My first since receiving my transplant. Grrrrr. I hope I can still have my biopsy done on Friday.
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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
kristina
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« Reply #10 on: February 12, 2015, 03:24:22 AM »
Hello Deanne,
Please take great care and wrap yourself well to avoid any complications with this cold...
Quick recovery wishes from Kristina.  :waving;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
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                                          ...  Oportet Vivere ...
Deanne
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« Reply #11 on: February 12, 2015, 11:17:25 AM »
Thanks Kristina!

I think I'm recovering quickly and I'm rather surprised. I took my temperature before I went to bed and I was a bit concerned when the thermometer hit 101.6. This morning it was back down to 97.7 (normal for me) and I'm feeling much better. I thought I'd have to cancel my appointment tomorrow so I don't spread anything, but if I'm already feeling this much better, maybe it's just a small thing that just hit me hard and it'll be done with by tomorrow.
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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
MooseMom
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« Reply #12 on: February 12, 2015, 12:51:03 PM »
I'm glad you're feeling better, Deanne!  :clap;

It's interesting how you said you recovered faster than you thought you would.  I experienced the same thing last month.  I came down with a tickly throat which, for me, always heralds a cold.  I went to the pharmacy and bought the OTC cold remedies that are safe for tx patients and awaited the onslaught.  It was the mildest cold I'd ever had, which was surprising when you account for the fact that we're immunosuppressed.  How odd!

I hope you can get the biopsy done tomorrow after all.  It's the kind of thing you just want to get over and done with.  Good luck!
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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."
Deanne
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« Reply #13 on: February 12, 2015, 02:54:08 PM »
That sounds exactly like it, MooseMom. I don't think I've ever had a cold that didn't last at least 2 weeks, so I thought I'd be sick for 3 weeks now. I guess I'll have to learn my body's new routines. Maybe there's more to cold duration than our immune systems killing it. Maybe our kidneys help to pee the virus out.
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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
okarol
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« Reply #14 on: February 13, 2015, 08:42:33 PM »
Quote from: Deanne on February 12, 2015, 11:17:25 AM
Thanks Kristina!

I think I'm recovering quickly and I'm rather surprised. I took my temperature before I went to bed and I was a bit concerned when the thermometer hit 101.6. This morning it was back down to 97.7 (normal for me) and I'm feeling much better. I thought I'd have to cancel my appointment tomorrow so I don't spread anything, but if I'm already feeling this much better, maybe it's just a small thing that just hit me hard and it'll be done with by tomorrow.

I hope you continue to feel well and got through your appt. ok!  :-*
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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
MooseMom
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« Reply #15 on: February 14, 2015, 08:21:29 AM »
Quote from: Deanne on February 12, 2015, 02:54:08 PM
That sounds exactly like it, MooseMom. I don't think I've ever had a cold that didn't last at least 2 weeks, so I thought I'd be sick for 3 weeks now. I guess I'll have to learn my body's new routines. Maybe there's more to cold duration than our immune systems killing it. Maybe our kidneys help to pee the virus out.

Oooh, I like that image of peeing out the virus.

We may be immunosuppressed, but on the otherhand we are probably in better health in general now that our renal function is better.  Maybe that explains something.
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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."
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