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Author Topic: Home after transplant  (Read 10843 times)
mikey07840
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Her royal highness Queen Ruth on her throne, RIP

« Reply #25 on: March 06, 2009, 08:10:17 AM »

Welcome home Gail. King Leon sends royal love in your direction.  :bow;  :waving;
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06/85 Diagnosed with type 1 Diabetes
10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma

• Don't Knock on Death's door; Ring the bell and run away. Death hates that.

• I'm not a complete Idiot -- some parts are missing.
Red from Canada
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« Reply #26 on: March 06, 2009, 08:46:20 AM »

Welcome Home Gail and congratulations on a successful transplant!
 :flower;
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kitkatz
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« Reply #27 on: March 06, 2009, 05:11:04 PM »

The IHD.com site needs some updating and the pics take up a lot of space on the site.  So for awhile no pic posting. The admins are working on it.

Kitkatz-Moderator


Good to see you home Monrein!

Kit


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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Normie
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Ellie

« Reply #28 on: March 12, 2009, 08:10:44 PM »

   :bandance;  Glad you are home Gail and everything went well for you and KD.   :bandance;

Normie
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Normie

Kidney damage 4/22/07

Predialysis
monrein
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Might as well smile

« Reply #29 on: March 13, 2009, 12:00:32 PM »

Things continue to go well for me and my creatinine is currently 90..,I think that's 1.0 in the U.S.  It was 71 at discharge but my tacrolimus level was a bit high and when they dropped my dose, the creatinine dropped too. They think that I may be particularly sensitive to the tac so we'll be monitoring thatvery closely.
Kathy left for home today and will return to work tomorrow.  She's feeling very well and insisted on visiting the museum yesterday afternoon for about three hours. 
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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
monrein
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Might as well smile

« Reply #30 on: March 13, 2009, 12:10:12 PM »

Here are some transplant photos, starting with the evening of admission through to the day before my discharge.  Others are on my Caring Bridge and also on Facebook.  Thanks again for all your good wishes and support, they've helped us both to get through this.

1.  The evening before surgery.
2.  Pre-surgery.
3.  Kathy, pre-surgery.
4.  Kathy post-surgery.
5.  Gail post-surgery (8 kilos of extra fluid).
6.  Kathy and Gail 7 days post surgery.  (With Jill, the traveling chicken from Syd's classroom, affectionately known as The Chicken Lips Café.)
« Last Edit: March 13, 2009, 12:14:55 PM by monrein » 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
Zach
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"Still crazy after all these years."

« Reply #31 on: March 13, 2009, 12:18:11 PM »

Great photos!
The journey continues.

8)
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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."
willieandwinnie
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« Reply #32 on: March 13, 2009, 12:26:40 PM »

 :clap; monrein. They are just great pictures. Thanks for sharing.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
okarol
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Photo is Jenna - after Disneyland - 1988

WWW
« Reply #33 on: March 13, 2009, 01:34:23 PM »

Thank you for posting the photos! I love to see them!  :yahoo;

Kathy wrote us such a nice note on Jenna's caringbridge. She sure is a special person - as I am sure you know!  :bow;

Best wishes to you both!  :cuddle;
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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
Wattle
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« Reply #34 on: March 14, 2009, 01:18:29 AM »

 :clap;  Wonderful photos
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
Hilrose
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Me and my sister 09/08

« Reply #35 on: March 15, 2009, 01:57:45 PM »

Seeing the pix, brings me so much joy. I love them

Best wishes to both of you.

One Love
H :flower;
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hilrose- hemodialysis patient since April 2007
Transplanted from living donor March 2007 and failed
Kidney rejected August 2008 no longer considering removing
No longer on waiting list 2008

Neverless very happy to be alive!
monrein
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Might as well smile

« Reply #36 on: March 15, 2009, 02:58:48 PM »

Hey Hilrose, is your family originally from Jamaica by any chance?  I'm asking because of the "One Love".  I was born and grew up there and came here when I was 15.  I lived in Spanish Town and went to boarding school in Mandeville.

One Love back at ya. And I'd also add...Walk Good.
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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
Hilrose
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Me and my sister 09/08

« Reply #37 on: March 27, 2009, 02:07:39 PM »

Hey, your right, my mums from JA and my dad's from St Kitts in the Caribbean.. It good to now that you were born there! I've been to JA 2 times only it's nice for holiday and reggae shows. My mums from St Elizabeth and my step dad is from St Catherine, which is near Spanish town.

Anyways' glad you doing well.

One Love
Hb
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hilrose- hemodialysis patient since April 2007
Transplanted from living donor March 2007 and failed
Kidney rejected August 2008 no longer considering removing
No longer on waiting list 2008

Neverless very happy to be alive!
willieandwinnie
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« Reply #38 on: April 04, 2009, 08:16:48 AM »

 :cuddle; Lee posted on Gails caring bridge site that she has been re-admitted to the hospital. Here's the post. Gail, I pray that they get things figured out soon.  :cuddle;

"Hi guys.You have to know that if I am doing the journal update it cant be good news.As Gail stated in her last update she was feeling great and looking forward to good weather so she could get outside.On thursday night Gail started to get pain on her right side .During the night it got worse and her temp went up.At 5am she got me to drive her to the emerg.She was admitted and during the day had a ultra sound and a cat scan done .Basically thry didnt show anything wrong.Her blood work is also good.Its as though we are in a House episode although the doctors do not appear to be strung out on anything.Gail is residing on the transplant floor and I know Dr Cole will not let her leave untill thay figure out what is going on.The good news continues to be how well her kidney function is.People often ask me how Im doing and how do I handle all this.I usually say that since I met Gail when she was 16 she has always had some health issues.With out exception she never complains or feels sorry for herself.I know I speak for a lot of people who know Gail personally when I say that it is easier to deal with ones minor  problems without complaint when Gail can handle her major ones with such stoicism and courage.I will of course be seeing Gail today and will update you all on the situation.Thanks for all the support ,it really does mean a lot.    Take care     Lee"

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"I know there's nothing to it, but I want to know what it is there's nothing to"
kellyt
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« Reply #39 on: April 04, 2009, 09:15:28 AM »

Unbelievable.  Gail, we're thinking about you girl!  Take care!    :cuddle;  :cuddle;  :cuddle;  :cuddle;  :cuddle;

Thank you Lee!
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
pelagia
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« Reply #40 on: April 04, 2009, 09:26:47 AM »

I am saying a prayer that the docs find every single bit of knowledge they've ever had in their brains and put it together to figure out what the hell is going on. 

I am thinking of you Gail, and Lee too.  It's so frustrating.  I want to get on a plane and fly to Canada, and then what, I don't know, but it's so frustrating.  I bet everyone here feels the same. I am sending you all the healing energy I can muster.

xo Linda
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
Jill D.
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« Reply #41 on: April 04, 2009, 11:24:07 AM »

I pray that all goes well and they figure out what is causing the pain and fever. Sending a prayer for a layer of protection around her kidney!!!!  :cuddle;
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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
del
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del and willowtreewren meet

« Reply #42 on: April 04, 2009, 03:35:27 PM »

Sure hope the docs soon find what is causing the pain and the fever.  Take care.  :cuddle; :cuddle;
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Don't take your organs to heaven.  Heaven knows we need them here.
Sunny
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Sunny

« Reply #43 on: April 04, 2009, 05:24:15 PM »

Praying for you Gail.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
paris
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« Reply #44 on: April 04, 2009, 05:31:25 PM »

Saying lots of prayers for Gail.   And praying the doctors can figure this out soon.   :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
charee
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« Reply #45 on: April 04, 2009, 11:48:16 PM »

Thinking of you :grouphug;
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Home Hemo  18 months
Live donor transplant 28th October 2008
from my beautiful sister
Royal Prince Alfred Sydney Australia

Live donors rock
del
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del and willowtreewren meet

« Reply #46 on: April 05, 2009, 05:40:11 PM »

Here's the latest Lee posted on caring bridge.

Hi guys.I am happy to say Gail had a good day today.She did have a fever in the morning but seemed to get better as the day went on.Her white blood count went down and the pain in her old kidney dropped dramatically.I got to the hospital at 2pm and Gail was going for a stroll with her IV pole around the 7th floor.It would appear that the new antibiotic is making her feel much better.The big question is can the infection be cured and not require the old kidney to be removed.I hope to talk with the doctors tomorrow and get more info.At any rate things look better and Gails new kidney continues to perform very well.All in all I will take it.      Lee

Hi guys.I am happy to say Gail had a good day today.She did have a fever in the morning but seemed to get better as the day went on.Her white blood count went down and the pain in her old kidney dropped dramatically.I got to the hospital at 2pm and Gail was going for a stroll with her IV pole around the 7th floor.It would appear that the new antibiotic is making her feel much better.The big question is can the infection be cured and not require the old kidney to be removed.I hope to talk with the doctors tomorrow and get more info.At any rate things look better and Gails new kidney continues to perform very well.All in all I will take it.      Lee


Sure hope she gets it al sorted out soon.
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Don't take your organs to heaven.  Heaven knows we need them here.
del
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del and willowtreewren meet

« Reply #47 on: April 05, 2009, 05:45:25 PM »

Here's the other post that Lee had on caringbridge . 

Hi guys.I spent most of yesterday afternoon with Gail at the hospital.She was in not as much pain but her fever was still high.Also her white blood cells were higher.A sure sign of an infection.The doctors were in to see her and think that the problem is in her old transplanted kidney.That seems to be were the pain is.They put Gail on intervenous antibiotics and hope that will knock out the infection.The doctors feel this problem is not related to the previous infection as  it responded to treatment before Gails release last time.I asked them what they will do if the antibiotics dont work.They said they possibly could have to take the old kidney out.Wonderful!At any rate Gail is in the best possible place right now and her sister Trish is comming for a visit on wed which will cheer her up big time.Also opening day is on monday and I am going to the game.I know Gail could care less but Kathys kidney will be very interested in my detailed analysis.Talk to you soon .    Lee
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Don't take your organs to heaven.  Heaven knows we need them here.
pelagia
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« Reply #48 on: April 05, 2009, 06:17:37 PM »

Hi Gail,  I hope you are seriously on the mend today.   :cuddle;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
kellyt
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« Reply #49 on: April 05, 2009, 06:23:45 PM »

Wow.  I would have never have guessed it could be her old kidney.  That little booger!  I pray they don't need to do sugergy to remove said kidney, but if that is the path towards complete healing so be it.  We're with you, Gail, if only in spirit and prayer.

 :grouphug;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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