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Author Topic: What do you think? Good idea?  (Read 2488 times)
Sydnee
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« on: June 24, 2013, 01:39:10 PM »

Think is a letter I am hoping to get my Neph to pass along. Is it a good idea?

Dear potential kidney recipient,
   Waiting for a kidney is a long process. With 96,000+ people on the waiting list in the USA there will be some who never get a kidney. My aunt was one of them. With the long waiting list and the seemingly low understanding of the need for live donors and altruistic donors many people are waiting years and are in much poorer health than they could have been when they finally receive their new kidney.
   I am currently trying to find kidney donors for both myself and my husband. Although we have ESRD for different reasons we are now thrown into the same boat of needing a kidney or dialysis. I have started both a facebook page and a website. www.donate2benefit.webs.com  They have gotten some interest but I have not chosen to publicize very much. I can’t bring myself to ask others to “share their spare” for me. Last week I got a message from someone wanting to donate to me, I called her and we talked on the phone. During that conversation she said,”I had no idea there was someone in my town that needed a kidney.”
    That is where you come in. I have been thinking and praying for ALL of us to get the kidney we need. Several months back I asked Dr Meares how many people in Cheyenne were on the transplant list. His guess was about 10. I would like to get us all on a website. Maybe call it www.Cheyenneshareaspare.com . One central place that people who would like to help can go and find out about us. I would then publicize this site and get the word out as much as possible. I have friends that will host the website for us, and friends that will help with getting pictures taken (if you would like).
   You do not need to use a computer to participate in this. Contact me by email, snail mail, or phone call. I will need to know your first and last name, a bio, transplant center and phone for donor coordinator. You are welcome to give more information if you like.  Because of HIPPA rules and regulations I know nothing about any of you. Please help this become the helpful website and tool to save us from a life on dialysis. Any help or suggestions you would like to offer I am willing to listen and accept help. Thank you for your time I look forward to hearing from you.
      Sincerely,               

Sydnee Bowker         
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After a hard fight to not start I started dialysis 9/13
started on PD
hoping for home hemo starting to build a fistula 1/14
cause PKD diagnosed age 14

Wife to Ed (who started dialysis 1/12 and got his kidney 10/13)
Mother to Gehlan 18, Alison 16, Jonathan 12, and Evalynn 7. All still at home.
www.donate2benefit.webs.com
cariad
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« Reply #1 on: June 24, 2013, 01:56:45 PM »

It's a fantastic idea, actually. I love it! It's a whole new take on the "go local" revolution - people can choose to help someone in their own area and help boost the community in the process. Additionally, I would find it very difficult to advertise for a kidney for myself, but there is power - and less fear of personal rejection - in a crowd. I would join a group like this if I were to need a kidney.

I'm hoping this is the start of a donation boom in Cheyenne. Good luck with this! :)
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
jeannea
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« Reply #2 on: June 24, 2013, 03:44:12 PM »

It's good. Giving it to your doc is good. He can hand it out without telling you who the patients are because of HIPAA. Then if they contact you it's their decision. You might also ask if they would hang a copy at your local dialysis center.
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adairpete
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« Reply #3 on: June 24, 2013, 08:26:02 PM »

I think that's a great idea!  Asking as part of a group is less intimidating than just an individual and making it a community outreach makes it more personal and could generate a lot of interest and hopefully potential donors.  It makes it more personal and real if you hear stories of your neighbors living with ESRD and puts a human face on what's often just a bunch of transplant statistics.  Makes me think about doing something similar in my town...
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Diagnosis: distal renal tubular acidosis with medullary sponge kidney
3/4/2010 started hemo via sub-clavian catheter
6/15/2010 listed for kidney (on hold)
8/2/2010 started CAPD
3/20/12 on active wait list for kidney
Angiepkd
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« Reply #4 on: June 24, 2013, 09:06:43 PM »

I think it's great!  Maybe more people would be willing to donate if they understood the desperate need.  Best of luck to you in your search. Hope you and your hubby both find donors soon!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Jean
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« Reply #5 on: June 25, 2013, 01:59:07 AM »

Great Idea!!! Hope it works for you!!!
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One day at a time, thats all I can do.
Sydnee
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« Reply #6 on: June 25, 2013, 06:07:26 PM »

Ed's clinic day was today. We brought the letters to Dr Meares he thought it was a great idea. He will be handing them out to all those on the list, he posted it at the dialysis clinic and he will be putting it up at his office. Which means anyone that lives in Cheyenne and gets treatment here will know about it. So I hope I will be having good updates soon.
Logged

After a hard fight to not start I started dialysis 9/13
started on PD
hoping for home hemo starting to build a fistula 1/14
cause PKD diagnosed age 14

Wife to Ed (who started dialysis 1/12 and got his kidney 10/13)
Mother to Gehlan 18, Alison 16, Jonathan 12, and Evalynn 7. All still at home.
www.donate2benefit.webs.com
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