I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: GuyIncognito on January 15, 2008, 10:27:05 AM
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Afternoon all,
After over 5 years on dialysis and barley moving up the list at all - # 11 for the past 17 months, I have decided to take matters into my own hands and find a suitable live donor. I started by writing an honest letter which was forwarded around quite a bit thru E-Mail and secondly I made a video which was posted to a internet site www.thekidneydisease.com
All of a sudden I have potential donors coming out of the woodwork and it really does warm my heart to know that I am not as alone in this world as I previously thought, however I have this weird uneasy feeling, almost as if I guilted people into doing this.
I always wanted a live kidney to come thru unsolicited offer but after 5 years should I really care how it came about???
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Congratulations on taking action -- with such great results. Would you be willing to share your letter here? When will you know which of your potential donors is a good match?
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The original letter was posted onto our live to share Facebook site which can be found at http://www.facebook.com/group.php?gid=2246110738
- For anyone considering looking for a kidney in this manner Facebook can be an excellent tool, I know this site I created is up to around 200 members, with new people joining everyday.
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Thats great, I hope one of those people are a good match for you.
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If it's been five long years and no living donor match has come forward , I think being pro-active as you finally decided to do is a good idea. I can tell this was a decision you thought about quite a bit before taking the step. More power to you.
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Best Wishes! Hope you find someone soon.
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No way you guilted those people. Remember they come in their own free will. "THERE IS NO GREATER MAN THAN THIS, THAT A MAN LAYS DOWN HIS LIFE FOR HIS FRIEND". I pray you find the perfect match.
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This is something all of us at some point have considered, no matter how much (or little) time we have been on the list. You took your time and thought about it and simply set your story out there. From here on out, if someone is in it for the wrong reason, or feels like they have been "guilted into it" then the transplant team will figure it out in the work-ups and not allow the transplant to proceed (from that one donor). Don't worry about it, you've done absolutely nothing wrong.
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Just be thankful you don't live in Canada, where the doctors refuse to accept unrelated, purely altruistic kidney donors, because in their omniscient opinion, they have not studied the matter sufficiently (they have been studying it now officially for more than a decade!) to determine if it should be acceptable or not. Paid donation is illegal because it is not idealistic enough; purely altruistic donation from unrelated donors is illegal because it is too idealistic. Go figure.
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That's great! Good for you. Your video was very informative, too. :thumbup;
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Just be thankful you don't live in Canada, where the doctors refuse to accept unrelated, purely altruistic kidney donors, because in their omniscient opinion, they have not studied the matter sufficiently (they have been studying it now officially for more than a decade!) to determine if it should be acceptable or not. Paid donation is illegal because it is not idealistic enough; purely altruistic donation from unrelated donors is illegal because it is too idealistic. Go figure.
Isn't it only about 30% of U.S. hospitals that will consider altruistic donations? I know my hospital will not consider it. Awesome effort in raising awareness! I am working on a web site also.....just what the world needs ( :sarcasm; ) another web site.
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Great video , Good luck :2thumbsup;
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G' Morning,
Actually I am in Canada... with the Ottawa hospital program and unfortunately in the case of Ottawa your right they have very stringent guidelines on donation, in fact sometimes I feel as if the Coordinators are working against me and because of this I have gotten in contact with the coordinator at Toronto General who will test as many possible donors as I can line up, they have done altruistic transplants in the past also the coordinator has laid out numerous options that have come available in recent years supposedly there is a new medication out that if taken in advance of the transplant will help to make less than perfect matches work just as well as receiving a kidney from a family member.
All in all my experience with Toronto has made me realize that a transplant coordinator should be working with you and be excited to get you on the road to transplantation after all it makes financial sense for all involved to get people transplanted as quickly as possible.
Also I was born and raised in Milton Ontario (25 Min from Toronto General) and all my family and friends still live down there so not only is it easier to have people tested I also have somewhere close to stay in the event that this transplant does happen.