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Author Topic: The wait was too long.  (Read 4310 times)
Sluff
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« on: April 07, 2012, 09:29:10 AM »

My brother Z has a son who has been in the hospital for almost 6 months, sold his home and moved near the hospital to be near his son as he waited for a double lung transplant. I know this site is about renal disease but I wanted to share Roberts story here.

Robert was 8 years old when I met him, when the Club would get together he wanted to be just like us and was looking forward to joining the marines. He had been riding dirt bikes since he was tall enough to reach the controls and had a love of motorcycles. He even had his own drag bike and won several of his
races between him and his Dad all their spare time was in the garage or on the track.

Z started his own military motorcycle club 25 years ago and was hoping to see Robert wearing a patch in the same club, it was not to happen.

Robert developed a rare lung disease around his 16th birthday and it barred him from being able to join the military. He continued to race and build bikes until it became apparent he could not continue.

At age 20 he decided to join a different club that was good friends of his Dads club but never made it to full patch member.
 
Robert died March  17th 2012 waiting for his transplant. A special young man who touched many lives in his short 20 years of life but died a much bigger man than most, the club patched him in as a full patched member on the day of his death.

Robert will fly amongst Eagles in the sky of heaven wearing his club patch and watching over all his Brothers on earth.  R.I.P. Robert May
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jbeany
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Cattitude

« Reply #1 on: April 07, 2012, 10:49:12 AM »

 :cuddle;
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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.

glitter
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« Reply #2 on: April 07, 2012, 10:58:15 AM »

He sounds like an amazing young man, who is loved by many. I'm sorry for your loss.

One more huge reminder to sign a donor card and actively get your friends and family to do the same.
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
boswife
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us and fam easter 2013

« Reply #3 on: April 07, 2012, 02:27:59 PM »

You have honored him by bringing his story to us.  Bless him and all who loved him...  So sad..
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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
cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: April 07, 2012, 03:53:12 PM »

you definitely have Sluff, thanks for sharing

love Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Traveller1947
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« Reply #5 on: April 07, 2012, 05:51:49 PM »

Robert's story is one that touches us all very deeply, Sluff.  Thank you for telling us about this spirited and courageous young man.  I hope you and your family will find comfort in your memories of his determination and spirit.  All the best to you.
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Rerun
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Going through life tied to a chair!

« Reply #6 on: April 07, 2012, 05:54:30 PM »

He sounds amazing.  I'm so sorry for your loss Sulff. 

May he rest in peace.          :pray;
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lmunchkin
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"There Is No Place Like Home!"

« Reply #7 on: April 07, 2012, 06:05:02 PM »

R.I.P. Robert May.  Thanks for sharing Sluff & sorry for your loss.

lmunchkin
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
Sue
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« Reply #8 on: April 07, 2012, 06:38:11 PM »

Ride on Robert May, God bless his family and friends as you mourn the loss of this fine young man.
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Life is not measured by the number of breaths we take, but by the moments that take our breath away.
bleija
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« Reply #9 on: April 07, 2012, 06:50:20 PM »

i have a question, are we allowed to donate our other organs in the event we pass away if we have a transplant, is there such thing as a double transplanted kidney, tht would be cool... i wonder if that would make it an extended criteria.

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Jean
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« Reply #10 on: April 08, 2012, 12:44:59 AM »

Thanks for sharing Sluff. Sorry for your loss.   :cuddle;
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One day at a time, thats all I can do.
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #11 on: April 08, 2012, 01:35:50 AM »

 :'(  It hurts so bad, the young ones, it's just not right. Sorry Sluffy.  :grouphug;
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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
Poppylicious
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« Reply #12 on: April 08, 2012, 03:33:54 AM »

So sorry Sluff.  *huggles*
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
Riverwhispering
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« Reply #13 on: April 08, 2012, 02:03:26 PM »

My heart is with you and your family  :grouphug;
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It's only one step from the Jungle to the Zoo
cassandra
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When all else fails run in circles, shout loudly

« Reply #14 on: April 09, 2012, 02:49:26 AM »

i have a question, are we allowed to donate our other organs in the event we pass away if we have a transplant, is there such thing as a double transplanted kidney, tht would be cool... i wonder if that would make it an extended criteria.

I would think that people who need a transplant have to have pretty healthy organs,so I doubt a organ (say kidney) has been affected by the heavy anti rejection drugs. Than I thought the skin, but that's probably affected too. I don't think I would want to have any. Than again.......
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Sluff
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« Reply #15 on: April 11, 2012, 07:29:37 PM »

Thanks all.  :grouphug;
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Sunny
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Sunny

« Reply #16 on: April 12, 2012, 02:37:32 PM »

I am so sorry for your loss. He must have been a brave young man to have fought his lung disease for so long. I wish he could have gotten a lung transplant. If people only knew of these kinds of tragic losses, maybe they would sign donor cards and he would be with us today. God bless.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
paris
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« Reply #17 on: April 16, 2012, 06:58:35 PM »

I am so sorry.  Like Karol, I struggle with the "kids" who have these awful diseases -- it isn't fair.  I would gladly take his place.  His family must be devastated.   Thank you for sharing Robert with us.   :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
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