Hey Natalie, could you get me on Larry King?

[BigSteve]

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.

[staceyand joe92]

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. 

[hurlock1]

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.

[Kitsune]

Sure, we're all treated equally! We wait while the wealthy get kidneys.

[dwcrawford]

but we rarely complain when we are on the receiving end of getting the best deals.....

[BigSteve]

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."

[Sunny]

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.

[marti824]

I agree Sunny, but how do we advocate for ourselves when our hand are pretty much tied?

[Hanify]

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? 

[okarol]

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.

[Sunny]

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.

[Kitsune]

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.)

[dwcrawford]

Yesterday at  dialysis couldn't have been more fun even if Natalie was there singing for us.

[staceyand joe92]

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.

[dwcrawford]

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.

[kimcanada]

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

[fluffy]

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.

[Chris]

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.

[okarol]

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