Luminous Landscape Forum
The Art of Photography => The Coffee Corner => Topic started by: Eric Myrvaagnes on November 20, 2015, 10:30:43 am
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This is a personal note to all my friends on LuLa, where I have been a member for many years.
I learned in January 2015 that I have advanced chronic kidney disease. My nephrologist (kidney doctor) estimates that I may need to start dialysis some time in the spring (2016).
After extensive testing I was placed on the national list for a cadaver kidney at Massachusetts General Hospital. The wait for a matching kidney is estimated at six years. Meanwhile, I am seeking a living donor, and central to that campaign I have started a new website where you can learn more about me, my situation, about kidney disease, and about living donation: http://ericneedsakidney.org (http://ericneedsakidney.org).
I must make my need for a donor known far and wide so that it will come to the attention of one of those special people who feel called to give this gift of life.
You can help by forwarding this to your friends, family, and email lists for work, community, and interest groups. Please put a link on your Facebook page if you have one. Remember, I need to get this message out to the greatest number of people in the broadest range of communities and walks of life.
I have paper flyers and business cards that advertise my need. I will be happy to mail some to you to pass out to people you see in person—your letter carrier, your hair stylist—or to post on bulletin boards. Or you can print copies of the flyer yourself from my website, http://ericneedsakidney.org/KidneyFlyerX2Angel.pdf (http://ericneedsakidney.org/KidneyFlyerX2Angel.pdf) , to post.
If you have questions or suggestions, feel free to PM me, email me, or call me. You may call the MGH Transplant Center with any questions about donation (no obligation). All contact information is on the "Contacts" page of my kidney website.
Thank you very much.
Eric Myrvaagnes
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That is not very happy news.
Good luck to you on this.
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Unwelcome news, indeed. I wish that a compatible kidney donor would make him/herself known as soon as possible.
Eric, you have my moral support, I'm afraid I can't offer much more at the moment.
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time for a law for mandatory organ harvesting ... or may be - if you want to opt out - pay some tax !
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Eric, all the best luck in these difficult times.
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Thanks for your kind thoughts Otto, Francois, Alter, and Paulo.
As it happens, many other civilized countries have a law that assumes that you are an organ donor unless you opt out. Here in the U.S.A. the reverse is true: you have to sign a form declaring that you will want your organs harvested when you die. Hence, the demand for kidneys, for example, keeps skyrocketing, while the supply of usable deceased kidneys does not grow significantly. Hence, living donors are in great demand.
And living kidney donors often say that the experience for them is very rewarding (even though not monetarily, as it is illegal in the U.S.A. to buy or sell a kidney). Th eonly reward is the satisfaction that comes from having saved someone else's life.
Cheers,
Eric
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I would be interested in reading people's rational for NOT becoming an organ donor when they die.
In my case, it was a no brainer. Why would I not want my organs to be harvested after I die, if it can help someone.... I ain't using them any more.
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Yours is a very fine attitude, Otto. I wish more people shared it.
I suspect that most Americans -- in fact, probably almost all -- have never even thought about organ donation. They would rather put all their thinking into Important Issues, such as who will win the next football game, or how can I fudge my next income tax form, or how can I talk the spouse into letting me buy that new Galumptious Pro Model X19 digital camera with umpteen zillion megapixels. ;)
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Eric, if I croak any time soon, you're welcome to mine :)
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As it happens, many other civilized countries have a law that assumes that you are an organ donor unless you opt out. Here in the U.S.A. the reverse is true: you have to sign a form declaring that you will want your organs harvested when you die. Hence, the demand for kidneys, for example, keeps skyrocketing, while the supply of usable deceased kidneys does not grow significantly. Hence, living donors are in great demand.
I was involved in an inquiry a few years ago; one of the things we considered and investigated was an "opt-out" system for organ donation. There's no very good evidence that it increases donor rates, interestingly. Part of the problem, at least in the UK, is what might be regarded as an overly sensitive regard for the wishes of the deceased's relatives, to the extent of allowing them to trump the declared wishes of the deceased: in other words, even where an organ donor card has been signed (or the wish to donate formally registered in another fashion), the relatives' permission is sought before organs are harvested.
There's no need to do that: the relatives don't own the body, or even have any particular rights over it (although they may have responsibilities towards it). Part of the problem may be that cadaveric donation needs to be arranged before apparent death; although brainstem death may be demonstrable, it appears that the individual is still alive, as there's a heartbeat, circulation, warmth and the chest moves. In those circumstances, relatives tend, understandably, to get upset at the thought of donation, despite good and widespread evidence that for very many people the thought that good emerged from the death is very comforting.
Good luck, Eric.
Jeremy
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So sorry to hear that Eric. I posted your pdf and a link to your website on my Facebook page (https://www.facebook.com/slobodan.blagojevic). Good luck!
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Eric, my best wishes for you.
David
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Thank you very much Jeremy, Slobodan and David.
Jeremy, what you describe in the U.K. sounds very much like the situation in the U.S.
In some parts of the world, wealthy potential kidney recipients can buy living kidneys, but that is illegal in the U.S., and probably also in the U.K. Interestingly, in Iran the government does pay living kidney donors, but it is a flat fee and so the wealthy have no advantage over the poor in getting a kidney.
In the U.S a living kidney donor cannot be paid directly for donation, but some of the supplemental expenses, such as travel to the transplant center and living expenses during recovery away from home, can sometimes be subsidized.
Again, a big thank you to all of you who have expressed concern.
Cheers,
Eric
P.S. I fully intend to be around for a while. My inspiration comes from my mother, who recently turned 104, and who often says "I'm glad to be alive!"
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Yours is a very fine attitude, Otto. I wish more people shared it.
I suspect that most Americans -- in fact, probably almost all -- have never even thought about organ donation. They would rather put all their thinking into Important Issues, such as who will win the next football game, or how can I fudge my next income tax form, or how can I talk the spouse into letting me buy that new Galumptious Pro Model X19 digital camera with umpteen zillion megapixels. ;)
I don't think that's true everywhere. In my state, whenever you go to have your driver's license renewed, you are required to answer whether or not you're willing to be an organ donor. Your answer is then printed on your license. When this has come up in conversation over the years, I can't recall anyone ever saying they had declined.
My wife and I joined a service six or seven years ago that looks for bone marrow donors. We had to donate blood to generate our genetic profiles for them. My wife's profile actually popped up a year or two ago as a potential match for someone, but on more detailed analysis, she was found to not be a close enough.
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We are all pulling for you Eric. All the best on your quest.
Chuck
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This is a personal note to all my friends on LuLa, where I have been a member for many years.
I learned in January 2015 that I have advanced chronic kidney disease. My nephrologist (kidney doctor) estimates that I may need to start dialysis some time in the spring (2016).
After extensive testing I was placed on the national list for a cadaver kidney at Massachusetts General Hospital. The wait for a matching kidney is estimated at six years. Meanwhile, I am seeking a living donor, and central to that campaign I have started a new website where you can learn more about me, my situation, about kidney disease, and about living donation: http://ericneedsakidney.org (http://ericneedsakidney.org).
Sorry to hear about your health issues...best of luck on finding a transplant...
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Just seen this thread - I am in Namibia currently and only intermittently have wi-fi access.
I am very sorry to hear the news Eric.
I am a physician so I understand the finer details.
Hopefully a donor kidney becomes available soon!
Dialysis can be tough but handling it is all in the attitude and approach - and I have a lot of confidence that you will rise to this challenge and surmount it with aplomb!
Best wishes
Tony Jay
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Hi Eric,
Really sorry to read this. Let me wish you the best of luck through these difficult times.
Kind regards,
Bernard
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Thank you all, guys! It is a big help to have the support of the people I really care about.
I just had word from my nephrologist that my condition is fairly stable, and he is pretty sure that I won't need to go on dialysis before next summer, unless there is a sudden change. Getting this campaign to look for a living donor has taken so much time that I haven't been able to process any photos. I hope to do that soon and post some on LuLa again.
And read a bit farther in Jeff newest book1 ;)
Best,
Eric
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That's at least a little good news, Eric. I'm really sorry to hear that you have that kind of problem. I've had a couple friends with a similar problem and I know it's no picnic. Hang in there my friend.
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Thanks, Russ.
And just for you I'll have to mention that when doing kidney transplant surgery, they don't "crop" out either of the bad kidneys, they just "stitch" the replacement one to the old system. ;)
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My thoughts and prayers are with you Eric!
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Hi Eric
I am sorry to hear your news. I will also post your PDF on Facebook and hope that you find someone who can help.
I will follow your progress with interest and much support!
With all my good wishes,
William
Riebeek Kasteel
South Africa
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Thank you for your kind wishes Terry and William. I will keep you all posted on any developments.
Best,
Eric
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I've just happened to come across this story of generosity today:
http://www.theguardian.com/us-news/2015/nov/21/craigslist-kidney-donor-connection-new-jersey
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I've just happened to come across this story of generosity today:
http://www.theguardian.com/us-news/2015/nov/21/craigslist-kidney-donor-connection-new-jersey
Wow! Thanks for that link. I'll add it to the list of Success Stories" on my kidney website.
I never thought of advertising on Craig's List, but maybe I should. Under construction supplies??
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Dear Eric,
I am saddened to read about your illness. I wish you the best possible recovery. I hope that you'll find a donor soon. In the meantime, keep on shooting.
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Sorry to hear this, Eric. Best wishes for a speedy resolution, and in the mean time I look forward to more of your Abstracts.
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... I never thought of advertising on Craig's List, but maybe I should. Under construction supplies??
Isn't it? Or perhaps the more precise category would be "reconstruction supplies" :)
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Eric, I'm so sorry to hear this. I will repost wherever I can.
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Eric, if I croak any time soon, you're welcome to mine :)
Sorry I missed your note earlier. Thanks for the thought.
If you do croak soon, just mail your kidney to me, and I'll pay the VAT on it. :D
Please don't croak soon!
Eric
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And thank you to Cem, Scott and James: Much appreciated.
And Slobodan: Yes, clearly it should be "reconstruction supplies." ;)
Eric
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I am glad to see that renal failure has not caused a sense of humour failure!
Regards
Tony Jay
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I am glad to see that renal failure has not caused a sense of humour failure!
Regards
Tony Jay
Thanks, Tony. If I feel my sense of humor failing, I will immediately seek a transplant (of same).
Eric
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... If I feel my sense of humor failing, I will immediately seek a transplant (of same).
That I would be happy to give you while still alive. Then again, it might be more of a curse than a blessing ;)
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Thank you Keith!
It's a big comfort to me to know that my LuLa friends are supporting me.
Happily, I'm feeling quite healthy now and working hard to stay that way.
Best,
Eric
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Attaboy!
Rob
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Eric,
I'm very sorry to learn of your difficulties and truly hope that you'll soon find a donor.
I wish you courage and fortitude in the intervening, hopefully brief, period.
Manoli
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Thank you for your kind thoughts, Manoli and Rob.
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An update on kidney donation:
Traditionally, a kidney donor must be a very close match (blood type and antigens) to a recipient for a transplant to be successful.
An important recent development helping to alleviate slightly the shortage of kidneys for transplants is the "paired kidney exchange." If a potential donor is not a perfect match for an intended recipient, that donor may get listed on an exchange so that when another recipient matches the first donor, and the second recipient has a donor that would match the first recipient, they can swap donors and both receive kidneys. Mass General Hospital (where I am listed) does work with exchange programs, and any interested donor for me should contact Mass General (info on my kidney website) for details.
These paired exchanges also can lead to chains of 30 or more pairs, and when a donor is finally found to match the first recipient, all pairs on the chain do the transplant.
I have just added links to information about paired exchanges on my new website ericneedsakidney.org (http://ericneedsakidney.org) under the "Links" page.
Thanks to David Eckels for reminding me of this.
-Eric
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Good luck, Eric!
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Fingers crossed, Eric. Sounds like you are in very good hands.
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Let's hope that 2016 will bring you a new kidney.
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Let's hope that 2016 will bring you a new kidney.
Or, better, fail to bring you the need for one. Good luck.
Jeremy
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Thanks all for the supporting comments.
Once my PC comes back from the doctor I will add some updates to the website. I can't really do it from this aging laptop.
Eric
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Thanks all for the supporting comments.
Once my PC comes back from the doctor I will add some updates to the website. I can't really do it from this aging laptop.
Eric
Eric, the moment I stand up I discover that my aging laptop vanishes completely.
That's why it is esssential for the ego to keep on the move. You can't worry and move at the same time.
Rob C
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Thanks, Rob.
I must say that your quirky, imaginative, and delicious snapshots on LuLa, even on said aging laptop, continue to brighten my days while waiting the word from my PC's proctologist.
Eric
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Thanks, Rob.
I must say that your quirky, imaginative, and delicious snapshots on LuLa, even on said aging laptop, continue to brighten my days while waiting the word from my PC's proctologist.
Eric
Ah Eric, the responsibility, the responsibilty...
;-) and thanks for the remarks!
Rob C
P.S.
Whilst doing this one I thought I might dedicate it to Isaac, but had second thoughts: I'll just keep it.
(http://www.roma57.com/uploads/4/2/8/7/4287956/7598448_orig.jpg)