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Author Topic: My sister is giving away a kidney  (Read 7385 times)
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« on: August 26, 2009, 04:05:37 PM »

She got tested and was a match for me, but I'm unlikely to ever be eligiable for it, so she's going ahead and becoming what's called an 'altruistic donor'.  So exiting to think that sometime soon (hopefully as there are miliions of tests to get through yet) someone will get the call!  Anyone else out there been an altruistic donor?
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
Wattle
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« Reply #1 on: August 26, 2009, 04:11:00 PM »

I'm unlikely to ever be eligiable for it,

Why???

It is wonderful that she wants to be a live donor.   :cuddle;
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #2 on: August 26, 2009, 04:16:36 PM »

I have multiple myeloma, and even if I got into remission (which is unlikely and they'd make me wait 5 years before considering a tx) the drugs you have to take post tx are very dangerous to a cancer person.  So even if it was possible, they wouldn't thinik it was worth the risk of the cancer coming back with a vengeance.  Neither would I.  I am fine with dialysis.  It's not worth the risk for me.  I'll pretend it's me getting it ha ha.  Vicarious transplant?
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
Rerun
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« Reply #3 on: August 26, 2009, 04:30:29 PM »

That is wonderful of her.  I wish she was getting a $40,000 check.  If I win the lottery I'm going to pay her $40,000.  You can hold me to that.  That would be the Mega Million with all 5 numbers and the quick pick. (Just to clarify) 

                                              :waving;
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paris
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« Reply #4 on: August 26, 2009, 05:27:23 PM »

Okarol's daughter got her wonderful kidney from an altruistic donor.   :2thumbsup;   Tell your sister we think this is a marvelous act and she will be someone's hero.
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« Reply #5 on: August 26, 2009, 05:30:12 PM »

More than a hero - a super hero.

 :clap; :clap;

This is such a wonderful thing to do.
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Melissa
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« Reply #6 on: August 26, 2009, 05:42:35 PM »

That's awesome!  What an amazing thing to do. 
I have my friend's father getting tested now to be a donor for me, but if I am not a match he wants to still give to someone....I am so amazed by that!
Did any of you see that article on MSNBC yesterday about the cab driver in Arizona who gave his kidney to a woman he used to drive to dialysis every now and then?  There are some pretty incredible people out there.
Hanify, best of luck to your sister!
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okarol
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« Reply #7 on: August 26, 2009, 06:11:50 PM »


That's too bad you cannot get a transplant. I am sorry about that.
It is a kindness beyond imagination to donate to a stranger.
Living donors ROCK!
They make miracles happen.  :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
RichardMEL
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« Reply #8 on: August 26, 2009, 06:17:17 PM »

Hanify hun that totally sucks that you may never be able to get a transplant :( that makes me sad.. but who knows what medical science may come up with. There's even hope for the hot pools!

Maybe I should fly to NZ and meet your sister hmmm? I do need a good woman in my life (psssst what's her blood group?  >:D :rofl;)

I think it is beautiful that she wants to go that one step further and give to someone else. Clearly a special person (must be the genes)
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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!
willieandwinnie
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« Reply #9 on: August 26, 2009, 06:57:28 PM »

Your sister is an  :angel;
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Jean
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« Reply #10 on: August 27, 2009, 12:22:45 AM »

That is such a wonderful thing for some one to do for another. Sorry it can't be you, and yes, live vicariously thru her and her recipient. How was your vacation?
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One day at a time, thats all I can do.
monrein
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« Reply #11 on: August 27, 2009, 04:01:42 AM »

What a lovely person your sister must be!  Sorry she can't donate to you but at least you know that she "gets" the situation and would do whatever she could.

P.S.  So where are the Samoa photos Madame?   :cuddle;
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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
cariad
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« Reply #12 on: August 27, 2009, 09:11:15 AM »

Oh, Hanify, what an amazing family you all are. A brave and generous act from your sister, and an astonishingly graceful attitude from you. I hope if this is important to your sister, that she is able to donate.

Best wishes to both of you!  :grouphug;  :cuddle;
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #13 on: August 27, 2009, 03:16:38 PM »

Yes - who knows if she'll get through all the tests.  She's done a week of blood tests and 24 hr urine tests so far, but doesn't have the results yet.  Actually, she's still swanning around in Samoa for a few more days lucky thing.  Will let you know how she gets on.  Funnily enough, she had started the procedure of donating a kidney before I got sick - she had a friend who had no kidneys so wanted to do it then.  Being an altruistic donor is pretty weird.  You have to be absolutely altruistic about it.  You have to understand that the kidney could go to a useless person who doesn't look after it or what ever.  And that has to not matter to you.  I don't know if I could do it actually.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
dwcrawford
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Getting the heck out of town.

« Reply #14 on: August 27, 2009, 04:12:36 PM »

Happy Birthday tomorrow Bernadette...  Hey, I thought I was getting Helen's kidney if you couldn't have it.  Tell her I guess we are through then...  joke,  joke, joke, and a very poor and distasteful joke...
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
paris
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« Reply #15 on: August 27, 2009, 05:12:47 PM »

The good thing is, the receipent has to go very stringent tests to be able to recieve a kidney.  The person who is fortunate to get this gift will forever be grateful that a stranger changed his life.  She is doing a wonderful thing.   :2thumbsup;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #16 on: August 27, 2009, 08:41:40 PM »

Happy Birthday tomorrow Bernadette...  Hey, I thought I was getting Helen's kidney if you couldn't have it.  Tell her I guess we are through then...  joke,  joke, joke, and a very poor and distasteful joke...

You know she'd be on a plane in a second Dan!  Shame about that blood type difference...
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
RichardMEL
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« Reply #17 on: August 27, 2009, 11:41:52 PM »

What about me?
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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!
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #18 on: August 27, 2009, 11:53:39 PM »

Are you A+
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #19 on: September 09, 2009, 09:53:30 PM »

Well, her urine tests and scans are all good.  Next step is talking to a neph.  Apparently it can't be my neph - even though she's not giving it to me.  I guess so they couldn't accuse the neph of telling me I couldn't have it cos he wanted it for someone else or something?  Keep it all seperate.  I think all the mental stuff is next. 
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
okarol
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« Reply #20 on: September 09, 2009, 10:23:15 PM »


Wow you're sister is amazing.
I hope someday soon they can figure out how to do tissue matching to such an advanced degree that no immunosuppressant drugs are necessary, which would be the best possible solution if you wanted a transplant.
Can your sister get you added points for donating to someone else in the event it becomes feasible for you?
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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
RichardMEL
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« Reply #21 on: September 10, 2009, 05:32:56 AM »

Interesting Hanify. My sister and brother both saw my Neph when they tested to give to me. I actually thought they would have to see another (as you suggest) to avoid any kind of conflict or something. My sister(who got much further along with her testing - well she got to the last hurdle actually) did have to see another neph near the end of the process for a second, independent, opinion.

Can I meet your sister in a hot pool or something and discuss this whole donation thing?  :rofl;
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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!
dwcrawford
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Getting the heck out of town.

« Reply #22 on: September 10, 2009, 06:39:58 AM »

Hanify's sister Helen is a loving and giving person... and she's pretty on the outside too...
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #23 on: September 10, 2009, 05:16:37 PM »

Here's Helen and me in Samoa.  She's on the left.  We were on the ferry going from Savai'i to Upolu island.  Had just had a pretty rough couple of hours, but I staved off any sea sickness by closing my eyes and singing the entire show of Joseph and the Technicolour Dreamcoat to myself ha ha.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
girliekick
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« Reply #24 on: September 10, 2009, 06:35:57 PM »

 :angel; :angel; :angel; :angel;

Helen really is something. I would ask about the points, I know they do that at Vanderbilt where I am listed. I Do believe Medicine is going to change alot in the next decade. Good luck to both of you. I have a cousin who wants to donate and says the same thing.  I think they are amazing.

Thinking of you
Girl
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-Christmas '03 get news of esrd
-June '08 start hemo
-Thanksgiving '08 pd surg
-Feb '09 Stop hemo and manual exchanges
... start cycler
Setp 3 '09 On UNOS list (27th b day)
Dec 09 peritonitis
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