I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: BigSteve on June 02, 2009, 10:42:10 AM
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I am more than a little pissed about Natalie Cole and other celebrities getting a kidney transplant
after only a short time on dialysis. She went on Larry King's show to tell her sad story. I didn't abuse
drugs. I didn't get hepatitis. We are both in Southern California, but myself and thousands of others
have to wait 5-7 years to get a transplant. Maybe if I change my residence to Dubai and give UCLA
a huge donation I can get a kidney. Sorry to sound so cynical, but I guess as I tell my grandchildren,
"life is not fair".
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another example of celebrity justice. you can't fight it. but it will bite them in the butt someday. just ask OJ and Phl.
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Her sister died the night Natalie got her transplant. When I was first listed, my co-ordinator told me she had a patient that got the call after being on the list 6 weeks! And a friend of mine got his after 2 years on the list. Unfortunately, we know too many who have spent so many years waiting. It is all frustrating.
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me too, Big Steve
Crawford O.J. and who?
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Phil Specter.....who is not finally in jail.
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Phil Specter.....who is not finally in jail.
June 2 --
Phil Spector has been sentenced to 19 years to life behind bars for the murder of actress Lana Clarkson. The 69 year old music producer, jailed for murder, has complained that prison officials confiscated his wig, in a string of angry messages posted on Twitter. Following his incarceration, Spector wrote: "Moved to a private cell in a special wing of the prison. I'm allowed to keep my iPod and my laptop but getting no special treatment. "As if it wasn't bad enough I got locked up for 19 years, the -------- even confiscated my wig."
Yeah -- LOL -- no special treatment there... :sarcasm;
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oops. I meant NOW, not NOT
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iPod and laptop? That is just stupid! And he is angry they took his wig? I am at a lose for words.
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Actually he needed a new wig. That one was ugly. Actually, now that I think of it, he was kind of ugly too. I guess the only way he could get women was to drug them and kill them.
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Nahhhh Dan....he was RICH, some women find that attractive.
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He is very homely. Wig, no wig --- just not a good looking guy. Me, I find a man with two healthy kidneys very attractive :rofl; Know any??
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Hey Natalie, could you just get me listed? I have never done drugs? I do not drink alcohol. I am 46 years old and pretty healthy. I agree, how did this famous celebrity get a kidney and some of us are still waiting out here. What gives? Was her transplant a donor kidney or a cadaver kidney?
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What is One Legacy? Please read the article below.
Natalie Cole is recovering from a kidney transplant.
The 59-year-old singer — and daughter of music legend Nat King Cole — underwent kidney transplant surgery at Cedars-Sinai Medical Center in Los Angeles on Tuesday, her rep tells Star. "She is resting comfortably."
The Grammy winner recently went public about her kidney problems, saying they started in February 2008 when she was diagnosed with hepatitis C -- a virus she attributes to her past drug problems. Natalie started receiving chemotherapy to fight the hepatitis C and as a result both of her kidneys failed. Since September she's been on dialysis three days a week while searching for a kidney — and touring!
"I have been on dialysis in Istanbul, Milan, Indonesia, Manila, London," Natalie told CNN. "It's — it's amazing."
Her transplanted kidney came from a deceased organ donor through the regional organ procurement agency One Legacy.
Natalie's rep adds that she'll have to "postpone her summer tour dates as she recuperates for the next three to four months."
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I just read on Legacy's website:
Factors such as race, gender, age, income or celebrity status are never considered when determining who receives an organ.
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Money! Money! Money Talks, BS walks!
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Oh my goodness. I had assumed she got a donated live kidney - not through the normal lists. That can't be right can it. However, I'm still happy for her that she got one - I wouldn't wish dialysis on anyone. I don't care how careless they've been in the past.
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Oh my goodness. I had assumed she got a donated live kidney - not through the normal lists. That can't be right can it. However, I'm still happy for her that she got one - I wouldn't wish dialysis on anyone. I don't care how careless they've been in the past.
Me too, I thought she got a kidney from her son. Then again, I read a lot of okarols news post and well my brain/memory is not what it use to be. Would be nice to see how many stars who have had transplants on how long they have had to wait for a transplant.
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Yeah, there is more info about Natalie Cole in the news section.
In a nutshell, the story is that her donor was deceased - but the family wanted to direct the kidney to Natalie - they are fans of hers - luckily it was a match - so the procurement agency arranged it.
It's ironic - because a ton of living donors offered their kidneys to Miss Cole, which would have taken her off the list. But this way she actually took a deceased donor kidney before others that had waited longer. It's a rare occurance- the "directed deceased organ donor" but it does happen.
We once got a call from members of our church - a woman was in a coma from a stroke - and before they shut off life support they wanted to see if perhaps Jenna could receive the kidney - but turned out not to be the right blood type. It was very thoughtful of the family though.
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What I find most unbelievable about this story is all the people that offered to donate to her, then when she didn't need it anymore , what do the same people do... nothing BIG FAT FREAKIN NOTHING
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Thanks Okarol. That makes sense. It explains why the wait was so short. I am glad the family donated their loved ones organs, no matter who got them. There are times I wonder if people will say "why did she get a kidney? She isn't on dialysis. Others need it more than she does". It is just the luck of the draw that my numbers have stayed the same for so long. If they had continued on the original path, I would have been on dialysis for three years. Insecure? A little! And then their is the constant battle of thoughts re: living or cadaver. I'm rambling -- sorry
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Apparently there was quite a public outcry related to Natalie's transplant - here is a response from OPTN:
http://ihatedialysis.com/forum/index.php?topic=14248.0
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I thought I was the only one pissed about that whole situation. Where are these wonderful volunteers now? Maybe if they'd come forward now, or still, there'd be a few less people on the waiting list. Does anyone know if there is an organization these people could join?
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I understand why you guys are upset but I'm wondering how many of us would use any kind of pull or external influence or celebrity that we had available. I don't know. Don't yell at me. I'm just thinking out loud. I mean if my father could sing like her father did.....
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I think if we were all honest, we would do anything in our power. My sister in law was very wealthy and she could travel all over the country when she needed experimental treatments. She could afford anything and didn't have to depend on insurance. If I could afford to go anywhere, I would have had the infusions I am getting now, three years ago. I don't begrudge Natalie getting a kidney. It was a gift that someone wanted to give specifically to her. Now, if someone would like to do the same for me -- :2thumbsup;
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That's right - I mean you'd hardly expect her to turn down the offer would you? This may well be an excellent situation in that it's a very high profile person making kidney donations get into the limelight. Although I hope people don't assume there's no problem getting one because she got one so quickly!
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I think Hanify's question is to the point. I think most people in the developed countries, because of
media whores like Natilie Cole and TV dramas showing people getting transplants in weeks, do think
that transplants only take a short time. I titled this topic "Hey Natialie, could you get me on Larry
King" because myself, or Rerun, or Kitkaz or anyone on the transplant list can't get a huge audience to
plead our case. Or more to the point, why not Jaden who has his whole life in front of him?
Am I angry? Yes, still.
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I have mixed feelings about this topic. On one hand I feel like Ms. Cole made dialysis and getting a transplant sound like a piece of cake. For many of us dialysis is anything but easy. Without her status she would be sitting on the list with the rest of us. I'm glad she had the opportunity to raise awareness about ESRD , BUT what happened to those 1,000 people who emailed Larry King and offered her a kidney? Do they not think that there are hundreds of thousands of other people on a very long waiting list that they could help. Hopefully someone directed them to living donation or paired donation as an anonymous donor. I have had 5 donors turned down for various reasons and it is heart breaking every time.......it makes me wonder what I would do to get a kidney if status and money weren't an issue.
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a doctor at the hospital where my wife works, got on dialysis not to long ago and he's all the sudden getting a transplant. and he's a large man, maybe not as large as I am, but he's a bigo' fat guy. I said something to my wife and she said, shouldn't I just be glad for him and not to say anything. whew! We're told that we're all treated equally, but we're not. WE are treated equally. but not the privaliged few. things are just not as fair as we'd like them to be. It' a cryin' shame. ???
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Sure, we're all treated equally! We wait while the wealthy get kidneys.
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but we rarely complain when we are on the receiving end of getting the best deals.....
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And of course, Steve Jobs' liver was the worst of any in the world so he was able to get a transplant.
Remember the Golden Rule: "He who has the gold makes the rules."
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With Natalie Cole and now Steve Jobs as examples, I just think there is something very wrong with the whole organ network process.
Rich and famous people are, in fact, able to game the system. The rules need to be re-written so all of us are equal and there is no possibility for one to jump ahead of others. Natalie Cole got her donation from a "designated Donor" quickly because she is famous and was able to lobby for herself, something most all of us don't have available at our fingertips. Steve Jobs was rich enough to learn to to game the organ supply network by analysis of which area within the United States had the shortest wait list, pursuing all those medical test qualifications which he has endless $ for, then by getting a chartered plane to get him there.Plus he can afford to get listed at every center. At my organ transplant center I was told I had to be within 3 - 4 hours away. If I had a chartered plane at my disposal and all the $ in the world, I could conceivably sign up anywhere too.If I had Larry King for my soapbox, I'd have a designated organ too. WAKE UP you all! There IS something inherently wrong with the organ network system.
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I agree Sunny, but how do we advocate for ourselves when our hand are pretty much tied?
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I Think I'd use my $$ to get what I needed too, so I don't blame either of them. However, I'd like to think that if I had lots of $$ I would use it, and my time to make things better for other people. Maybe they do, and we don't hear about it?
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Natalie Cole got a kidney from a deceased donor whose family directed it to her. Yes, her fame made her situation known on a widespread basis, and that contributed to her fortunate outcome, but she did not pay for any advantage.
In the case of Jobs' liver, he did "multiple-list" which is available to anyone. But as you mention - you need the money to travel (or buy a home near the transplant hospital, as he did.) So his money definitely gave him an advantage. Unos has considered changing the rule about multilisting, but then people who live in major cities where the wait is very long would be penalized.
I think what bothers me the most in both cases is that they took deceased donor organs. Natalie had tons of living donors offer, and I don't doubt that with his notoriety Jobs would have no trouble finding a liver donor (however, that type of surgery is much riskier for the donor.)
It's not a great system but they get so bogged down trying to create a better one. If you've ever been to a UNOS board meeting you see how very complicated it gets.
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There don't need to be "Regions" anymore.
With todays technology organs or people can be transported most anywhere within the U.S.
UNOS might start by getting rid of the regions. Steve Jobs can create the software program for the listing, Natalie Cole can do the public relations.
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There don't need to be "Regions" anymore.
With todays technology organs or people can be transported most anywhere within the U.S.
UNOS might start by getting rid of the regions. Steve Jobs can create the software program for the listing, Natalie Cole can do the public relations.
They never will, so long as their little celebrity buddies may have to wait behind the rest of us poor slobs. Well, it's off to dialysis (according to Natalie Cole, it's "interestiing" and "a piece of cake", but then knowing she'd get a kidney from SOMEONE, of course she'd say that.)
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Yesterday at dialysis couldn't have been more fun even if Natalie was there singing for us.
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I guess what really gets me about the Natalie Cole situation......she said dialysis is a piece of cake. OBVIOUSLY she never had a day like I had on Friday when my blood pressure crashed , I became combative, an puked all over myself. Her telling the World that dialysis is no big deal really ticks me off.
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Its not a piece of cake but it is easier for some than for others (maybe for sometime). Natilie Cole is an airhead, rattle brained performer. Who believed anything she said? She is not a Mary Tyler Moore speaking for Juvinile diabetes.
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I guess what really gets me about the Natalie Cole situation......she said dialysis is a piece of cake. OBVIOUSLY she never had a day like I had on Friday when my blood pressure crashed , I became combative, an puked all over myself. Her telling the World that dialysis is no big deal really ticks me off.
That was my problem also, she had such an opportunity to educate, and instead she glamorized it, I could have choked her
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it would have been better if the organ had gone to somone to whom dialysis was NOT a "piece of cake". natalie is busy flying all over the world having a great time, if i could do that dialysis would be easy for me too. this whole fiasco pisses me off.
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Natalie Cole got a kidney from a deceased donor whose family directed it to her. Yes, her fame made her situation known on a widespread basis, and that contributed to her fortunate outcome, but she did not pay for any advantage.
In the case of Jobs' liver, he did "multiple-list" which is available to anyone. But as you mention - you need the money to travel (or buy a home near the transplant hospital, as he did.) So his money definitely gave him an advantage. Unos has considered changing the rule about multilisting, but then people who live in major cities where the wait is very long would be penalized.
I think what bothers me the most in both cases is that they took deceased donor organs. Natalie had tons of living donors offer, and I don't doubt that with his notoriety Jobs would have no trouble finding a liver donor (however, that type of surgery is much riskier for the donor.)
It's not a great system but they get so bogged down trying to create a better one. If you've ever been to a UNOS board meeting you see how very complicated it gets.
Did I miss a post about Jobs getting a liver? I never heard or read anything on the news when I was looking before my surgery.
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Did I miss a post about Jobs getting a liver? I never heard or read anything on the news when I was looking before my surgery.
http://ihatedialysis.com/forum/index.php?topic=14481.0 Reports: Apple CEO Steve Jobs Had Liver Transplant
http://ihatedialysis.com/forum/index.php?topic=14517.0 Jobs' liver transplant shows power of the rich
http://ihatedialysis.com/forum/index.php?topic=14550.0 Questions Over Steve Jobs' Liver Transplant