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Author Topic: How can I help  (Read 2094 times)
stuman413
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Have been an on and off dialysis for 15 years

« on: January 26, 2014, 01:23:03 PM »

I've been a kidney patient for 15 years now.  I have been on dialysis for 9 of them and had a transplant for 6.  I would like to help others who have been thrown into this life but I'm unsure how.  I'm not really into politics and I've never been into support groups.  How could I get started helping others in my area? 
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-Born in !975 with blockage on bladder
-Doctors do not realize this fact until 8 days after I'm born
-Perform surgery to pull ureters out my back so I can pee (called a eurethrarostomy)
-At 3 years of age the doctors fix the bladder and return my anatomy to normal
-23 years old I have pain in my chest/cannot breath, rushed to hospital, find that my kidneys have failed
-March 1999 - first dialysis in hospital
-January 2003   Living donor transplant from cousin
-April 2009  kidney fails  back on dialysis - present 4x per week
-January 2013 - started nocturnal dialysis 3x week for 6 hours per treatment
-April 2013 - Nocturnal shift is discontinued, treatments reduced to 5 hrs apiece
July 3 2016 Received 2nd transplant from cadaver doner
Two years post transplant doing fantastic so far
JaeCie
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« Reply #1 on: January 27, 2014, 06:52:44 PM »

Hi Stuman,
I have started a nonprofit Foundation for just such a purpose. I provide support bags to dialysis patients that they can use at the center, at home, or take to the hospital. It includes blanket, information on various diseases and medicines common to dialysis patients, hand sanitizer, puzzle books, pen and paper. Just stuff to do while dialysing. I am happy to have others who want to do the same in their area or want to help in doing research and applying for grants. Right now it's been coming out of my pocket but of course that can't continue much longer. Also if you have web design skills, I can put you to work. Let me know.
JaeCie
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cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: January 29, 2014, 01:50:42 PM »

 


         :yahoo;


Thanx guys.   :bow;
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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
       still on waitinglist, still ok I think
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