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Author Topic: I've got a date...  (Read 9882 times)
openboat
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« on: March 10, 2009, 08:33:52 PM »
If all goes according to plan I'll have one more kidney on March 31.   :2thumbsup;

Since I last posted my kidney function has been declining rapidly - at one point my creatinine went from 4.6 to 5.0 in three weeks, and it keeps rising.  Docs say it's time to start D or get a Tx before I get any more symptoms.  So far it's just been nausea, fuzzy-headedness, elevated K and phosphate and very low energy levels.  I feel like I could wait longer, but I've decided to be a wimp about it and not experience anything worse.   ;D

The living donor is my amazing (and PKD-free) sister.  She's a pediatric ICU nurse, so she's very familiar with the procedures, and she's still willing to give one up!


Does anyone have last-minute suggestions for things to take to the hospital, other than the usual toothbrush, loose-fitting clothes, etc.?
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1 on: March 10, 2009, 08:46:11 PM »
Tell your sister I said she ROCKS!  :bow;
We were in and out of the hospital in 3 days, so there wasn't enough time to do anything.
Afterward Jenna did enjoy having DVD's to watch. We also went out to the movies (she wore a face mask, and the theater was mostly empty anyway, midweek.)
All the best to you!  :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 #2 on: March 10, 2009, 11:08:34 PM »
 :clap; :clap;

Good Luck Openboat.

Give your sister a hug. Both my sister and I ended up with PKD and we have always said it would have been so much easier if one was able to donate.

And don't think of yourself as wimping out. Dialysis sucks.... I would have done anything to avoid it. Take the transplant before your body is affected by your toxic blood stream!   :cuddle;
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June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
rose1999
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« Reply #3 on: March 11, 2009, 12:13:31 AM »
Wishing you and your sister all the best.  As for things to take, any chance of taking a laptop so you can let us know how it goes?  ;)
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Chris
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« Reply #4 on: March 11, 2009, 12:23:56 AM »
Good Luck there.
Well all I can think of to bring is your hairbrush, soap, new toothbrush, your own toothpaste because what the hospital gives is, well crap. Bring some extra loose fitting sweat pants and maybe socks I'm thinking.
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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?
pelagia
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« Reply #5 on: March 11, 2009, 03:59:05 AM »
Throw the old milk out before you leave for the hospital!

P.S. this is great! news and this  :cuddle; is for your angelic sister. 
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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
Rerun
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« Reply #6 on: March 11, 2009, 04:33:05 AM »
You are one lucky brother.  Maybe arrange to have flowers delivered to her room if the hospital allows them.  Some places don't.  Or maybe silk flowers or balloons that say "Thank You".  I'm sorry, but guys usually don't think of these things.

                               :yahoo;
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G-Ma
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« Reply #7 on: March 11, 2009, 05:40:35 AM »
 :grouphug;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Sluff
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« Reply #8 on: March 11, 2009, 05:50:05 AM »
Congratulations openboat! :2thumbsup;
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Romona
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« Reply #9 on: March 11, 2009, 08:54:16 AM »
 :grouphug; Best Wishes!
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willieandwinnie
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« Reply #10 on: March 11, 2009, 09:07:07 AM »
 :clap;  :yahoo; Keep us posted.  :cuddle;
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paul.karen
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« Reply #11 on: March 11, 2009, 09:09:06 AM »
Great news openboat.  And so good of your sister :clap;

Now this and dont get upset just something to think about as i have.

Does your sister have kids?
Does she plan to have kids.  If no then no worries.
But if she has or plans on having kids they could get the dreaded PKD disease.
I told my brothers not to even get evaluated as donors for me due to the fact they have kids or may in the future.  and i would feel very bad and selfish if one of there kids did end up with PKD. And i had there parents kidney in me.   When it could have maybe been used for there own child.

I am not in any way trying to bring you down openboat.  Please dont think i am.  But it can be good to look at the long run for everyone.


And sorry if i bummed you out not my intention.
With that said i do wish you and your sister the BEST.
P&K
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
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monrein
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Might as well smile
« Reply #12 on: March 11, 2009, 10:19:41 AM »
I always take my own pillows to the hospital, a memory foam one (from Ikea) for my head, and a small buckwheat one that I use to support my side.  I don't like the hospital pillows because they're covered in plastic and don't smoosh down comfortably.
I also like an electric toothbrush (I use an Oral B)  because you get a consistent 3 minute brushing and when I'm not feeling my best it's too easy to cut corners.  Post transplant, dental hygiene is crucial.

All the best with the transplant and your sister is wonderful to step up like this for you.  Very nice indded.
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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
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« Reply #13 on: March 11, 2009, 10:40:12 AM »
Wishing you all the best,  My caring thoughts and prayers are with you.  Keep us updated, of course!  :grouphug;
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openboat
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« Reply #14 on: March 11, 2009, 11:46:20 AM »
Quote from: paul.karen on March 11, 2009, 09:09:06 AM
Great news openboat.  And so good of your sister :clap;

Now this and dont get upset just something to think about as i have.

Does your sister have kids?
Does she plan to have kids.  If no then no worries.
But if she has or plans on having kids they could get the dreaded PKD disease.
I told my brothers not to even get evaluated as donors for me due to the fact they have kids or may in the future.  and i would feel very bad and selfish if one of there kids did end up with PKD. And i had there parents kidney in me.   When it could have maybe been used for there own child.

I am not in any way trying to bring you down openboat.  Please dont think i am.  But it can be good to look at the long run for everyone.


And sorry if i bummed you out not my intention.
With that said i do wish you and your sister the BEST.
P&K


I understand where you're coming from, but as I said she does not have PKD.  If she did then I (and the docs) wouldn't consider her as a donor.  The common adult form of PKD (ADPKD) is passed on as a dominant trait, she can't transmit what she doesn't have have to her kids. 


Thanks for all of the thoughts, I don't know if I'll have internet access in the hospital but I will post when I get home.
« Last Edit: March 11, 2009, 11:50:35 AM by openboat » Logged
TeenHatesDialysis
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« Reply #15 on: March 18, 2009, 09:33:17 PM »
YEAH!!! That is great news!!   :cheer:  Your sister is an angel.   :bow; :bow;
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
Joe Paul
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« Reply #16 on: March 19, 2009, 03:04:15 AM »
Good luck, I am hoping all goes well for you and your Sister  :thumbup;
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
paris
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« Reply #17 on: March 19, 2009, 07:21:51 AM »
Thinking good thoughts for a great transplant!   :2thumbsup;
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kellyt
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« Reply #18 on: March 19, 2009, 11:55:33 AM »
Do we have an answer yet?  Is the transplant scheduled for the 31st?     Good Luck!    :beer1;
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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
MandaMe1986
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« Reply #19 on: March 19, 2009, 02:00:11 PM »
Good Luck! I hope it goes wonderful :flower;
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
openboat
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« Reply #20 on: March 19, 2009, 08:02:44 PM »
Quote from: kellyt on March 19, 2009, 11:55:33 AM
Do we have an answer yet?  Is the transplant scheduled for the 31st?     Good Luck!    :beer1;

Yep, we'll be checking in to Emory at 5:30 on the 31st.  I've decided, after talking to my sister and reading everything I can get my hands on, to participate in this study.  We'll have a 50% chance of doing a bone marrow transplant in addition to the kidney graft, and I'll be on Belatacept and Sirolimus instead of the usual Prograf, Cellcept and Prednisone.  I'll keep everyone here updated on how it goes.
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kellyt
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« Reply #21 on: March 19, 2009, 08:04:55 PM »
I hope everything goes well!  Congratulations!  Hugs to your sister, as well!   :cuddle;
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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
Wattle
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« Reply #22 on: March 19, 2009, 08:18:05 PM »
Interesting Study. I wish you luck.

Just out of interest.. What was your HLA match with your sister? 
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
openboat
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« Reply #23 on: March 20, 2009, 04:39:31 AM »
Quote from: Wattle on March 19, 2009, 08:18:05 PM
Interesting Study. I wish you luck.

Just out of interest.. What was your HLA match with your sister?

3/6
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willieandwinnie
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« Reply #24 on: March 20, 2009, 06:15:48 AM »
 :clap; openboat. This is so exciting. Give your sister a big  :grouphug; from us.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
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