Steve Jobs Of Apple gets a new Liver

[hanklive39]

Once again, being more affluent than the average person with the same need gets preferential treatment in a sense because after all, an average person who would be as ill as Steve Jobs would NOT have the same opportunities to go to another state or center of transplant excellence as many times as a very wealthy person such as Steve
Jobs could in order to avoid waiting too long to receive the gift of life.

Please understand that this is just my observation, and my opinion - of an injustice that happens more often than most people are aware of.
Now don't get me wrong.. I'm grateful that Steve Jobs was able to receive that gift of life but, one cannot turn a blind eye, and not acknowledge the obvious preferential treatment a person of such stature received as opposed to the obvious lack of equal treatment given to someone in the area in Tennessee where that Transplant center is situated. Someone who most likely lived in relative obscurity was left behind in order to accommodate Mr. Jobs and yet if one asks the question of fairness towards the administrators, or the head of the transplnat team the very same question... In an almost knee jerk reaction, the most likely response will be that everyone who is listed here is treated equally!!! YEAH RIGHT!!! I don't buy it!!! Nor will I ever unless the can specifically prove to me otherwise.

Well now that I've posted my opinion on this, I would like to read othe opinions from folks in here whom I very much respect their opinions.

Respectfully,
Henry

[DougV]

Worse, he has cancer, replacing his liver most likely won't help in the long run and he really should not have even been eligible at all.  Liver is supposed to go to those who have chance of success. 

Now if he went out of country to where you can buy your way on the list, well can't say anything about that, but if liver came through normal US medical channels then this flat out ain't right.

Doug

[willy]

It could be the reason that information on this has been sketchy.  There is a lot that is not known about his condition, past and present.  Even the board of directors of Apple didn't seem to know much.  I suppose that there is a good aspect of this; protecting the personal medical information of individuals.  I just am not knowlegable about what was going on with him. 

IF it was a precancerous condition it would have bumped his meld score. 

I read that the waiting time for a liver was much quicker in the state (was it Tenn?) than in California.  In Jobs case, he could have flown to India for one if he chose to and I'd venture that either someone or even a corporate entity would pick up the tab for it.

I'm just not sure that any lines were cut and unless one had his Meld scores and particulars on how the scores were achieved it would be hard to assert.  One does get to chose ones medical facility.(and therefore the state)  I wonder if one can chose multiple facilities (and therefore multiple state lists).

I'm not really up on it and certainly not on his case specifics.  I note that those specifics are being kinda closely guarded.

I still think he's "one of the good guys" and so kinda don't care and would probably be miffed if I considered him "one of the bad guys" (insert your choice of villain).

best,
Willy

[Hank's mom]

I went prowling around and found a blog concerning the TP Jobs was fortunate enough to receive.  I think it will always be that those that can, do.  Hey, if I were in his position I would do the same.  Since I'm not, yet (fingers-crossed), I would use my wealth, contacts and power to help someone else.

I tried to respond I the blog, but it kept kicking me out.  My reputation must have preceded me.   At any rate, I thought it was a great opportunity, once they are more in the know, to help raise awareness, etc., all of which there is a frightening amount of lack of knowledge.  As we all know, liver TPs aren't just for HCV related problems, but the need for both the patients and donors, let alone research, continues to become more stretched too thin daily.

A name like his attached to the subject of TP needs could only improve the situation. 

Just  my thoughts,
Susie

[Pancho and Lefty]

This is interesting in several ways. What I've read agrees with Doug's point that tp will not help cancer. . .  . at least not for long. It's been speculated that pancreatic cancer was the original problem.

Of interest to me are the people who take up one side or another. Many are defending the medical establishment and Job's tp. Others think he got a tp because he's very rich and very famous.

I wonder if the truth isn't a mixed bag. Anyone who doesn't know that the Steve Jobs's in the world don't get pretty much what they want is living a childish fantasy.

If he does have cancer, this won't be the end of the story. He'll need another liver fairly soon . . . although next time he'll be even more careful about keeping people's mouths shut. . . so few may ever know.

 

[hanklive39]

Hi Doug!

You hit the preverbial nail right on the head - Sir!!!

When one has cancer in their system and especially in one of their organs, and especially in such close proximity to the liver such as the pancreas, then the situation for anyone else beside a person of Steve Jobs stature would change whereby the candidate would no longer be eligible for such a transplant especially with his history of pancreatic cancer which has been previously documented.

I've personally have lost a few people on the waiting list because of similar circumstances...

1.) A person whom I grew to consider as being a friend after meeting them in the Family house where I was staying at one time in Pittsburgh, PA while waiting to be transplanted (I got kicked out over my vocal objections towards the hospital giving the gift to a person way more affluent than my friend who was ironically a very rich member of the royal Saudi family.)

2.) I knew a woman who was on the list for some time that passed away while waiting, and another more affluent individual from the UAE got a liver even though that very same person was treated for lung cancer on various occasions before recieving a liver transplant.

3.) I knew a friend that was not accepted as a viable transplant candidate because of the very same reason Steve Jobs did recieve a Liver... He had pancreatic cancer!!!

I'm sure that there have been many more case where this has happened in this country where we boast to the rest of the world that we strive on treating everyone equal. YEAH RIGHT!!! UNOS has so far been relatively very quiet on this case - Hmmm.... If this hospital is recieving monies from HHS, then at the very least a preliminary investigation should be launched in order to make sure that they indeed follow their guidlines.

The Mickey Mantle incident was the first publicized case of this sort of practice but, it's been going on for quite some time ,and will probably continue unless enough of us folks who understand this sort of injustice - speak out really loud to the folks with the purse strings that there must be consequences for institutions that break the rules so overtly because, they feel this person was of such stature that they deserved it over a person of no significant stature who was more than likely a much better candidate long term with respect to surviving the transplant without the risk of the transplanted organ becoming cancerous in a relatively short period of time post transplant like in the case of Mickey Mantle.

Some folks in here may not agree with my views on this matter but then, most of them have not experienced on a personal level what I have in this journey of being transplanted in order to recieve the gift of life, and I'm one of those types of individuals that isn't afraid to speak out for those who have no voice because after all, I would hope that there would be others also willing to do the same for me if I were in their situation.

Respectfully,
Henry, A.K.A. Hank

[willy]

Here's a little update and comment on how this worked.  Willy
---------------------------------------------------------------------------------------

Jobs' liver transplant shows power of the rich
By MARILYNN MARCHIONE

AP

-A celebrity like Apple CEO Steve Jobs scores a rare organ transplant and the world wonders: Did he game the system? The rich have plenty of advantages that others don't. But winning the "transplant lottery" involves more than the size of your wallet — and true medical need.

A Tennessee hospital has confirmed that it performed a liver transplant for Jobs, putting him among the lucky 6,500 or so Americans each year who get these operations. Nearly 16,000 others are waiting now for such a chance.
No one can buy a transplant — that's against federal law. And no one is suggesting that Jobs or the Memphis doctors who treated him bent any rules to show him favor. The hospital said he was the sickest person waiting for a liver when one became available.
However, people who understand how the transplant system works, and who have the money to make the most of what they learn, have a leg up on getting the body part they need.

An Internet database — the Scientific Registry of Transplant Recipients — gives average wait times, success rates and other details on every transplant program in the nation.
"Anyone can go to that Web site and see which transplant centers transplant quicker than others," said Dr. Anthony D'Alessandro, liver transplant chief at the University of Wisconsin-Madison.

Jobs, who lives in Palo Alto, Calif., was able to get on a shorter waiting list, in Tennessee.
Here's where money comes in.

To get on a transplant center's list, a prospective patient must go there, be evaluated by the staff and have tests to confirm medical need. If accepted, the patient must be able to get to that center within seven or eight hours if an organ becomes available. That means renting or buying a place nearby or being able to afford a private jet, or $3,000 to $5,000 for a chartered plane, to fly in on short notice.

People also can get on as many wait lists as they like as long as they can travel there and meet the terms.
"It is at the transplant program's discretion if they know it is a multiple listing" to accept someone already on another waiting list, said Joel Newman, a spokesman for UNOS, the United Network for Organ Sharing, which runs the nation's transplant system.

Three different times, UNOS has considered banning or limiting multiple listings, most recently in 2003. But patients protested, saying they needed to go wherever they could to improve their odds, said D'Alessandro, who has headed UNOS panels on organ allocation.
It's not known if Jobs was on more than one list.

He has an "excellent prognosis" after his transplant at Methodist University Hospital Transplant Institute in Memphis, said transplant chief, Dr. James Eason.
"He received a liver transplant because he was ... the sickest patient on the waiting list at the time a donor organ became available," Eason said in a statement Tuesday night on the hospital's Web site.

Apple declined to comment further.

Jobs, 54, had surgery in 2004 for a rare form of pancreatic cancer, an islet cell neuroendocrine tumor. Jobs said afterward that he was cured. However, his health made headlines last summer, when reporters at a company conference saw he had lost a lot of weight.

In January, Jobs said he was suffering from an easily treatable hormone imbalance and would remain CEO. Less than two weeks later, he said his medical problems were more complex, and that he would take a medical leave of absence through June, leaving Apple's chief operating officer, Tim Cook, to run day-to-day operations of the Cupertino, California-based firm.
Several doctors without firsthand knowledge about Jobs' health said the type of pancreatic cancer he had tends to be slow-growing. When it spreads, it tends to land in the liver first.

The most likely scenario is that undetectable cancer cells traveled from the pancreas to the adjacent liver at the time of Jobs' 2004 surgery, these experts said. That type of cancer can often remain in the liver for years without causing symptoms, but can cause the kind of weight loss Jobs' recently experienced.

Jobs had end-stage liver disease, meaning extensive liver damage had occurred.
Patients in such bad shape would get priority on any organ transplant list, and if Jobs did have a recurrence of cancer, that would give him even higher preference, said Dr. Roderich Schwarz a pancreatic cancer specialist at the University of Texas-Southwestern Medical Center in Dallas.

Liver transplants in such cases can cure the cancer, although patients remain at risk for another recurrence, Schwarz said. In addition, the powerful immune-suppressing medicine they must take to keep the body from rejecting the transplanted liver also can increase their risks for recurrence.

Dr. Michael Porayko, medical director for liver transplants at Vanderbilt University, said a less common scenario would be that Jobs' earlier surgery resulted in scarring or blockage of bile ducts, causing liver damage.
But he said Jobs' doctors would have known to watch for and treat that, and he agreed that it's much more likely Jobs' cancer had spread to the liver.

[Lee]

I must admit very mixed emotions...I see valid points made by all...I am sure any of us would do all we could to get a transplant if needed...and I do see how money can help....guess this one is best left up faith that all things happen for a reason....hard to deal with at times for sure, but nonetheless is how it is.  We dont always understand or know why things happen.  I just choose to believe there is a reason and find peace in having faith in that. 

I was happy to hear that there are signs that it may cause the cure of his cancer...that would be wonderful for him if in fact it does.

I just pray that all things will fall into place for those awaiting transplant...and that dear friends will be blessed with the gift.

Blessings to all,

Lee

[Hank's mom]

Hello again,

I actually just tried to take my name off the list because A) It is too much to think about right now, and B) The whole stress package would interfere with my healing.  My doctor agreed about the not now part, but then again I am a 16, and all other numbers are above board, in great part, from the close eye they have had on me because of being listed.  My doc recommended I stay on the list since the likelihood of a freak monkey attack was slim and I would be tended to as I have been from day one.

All of that said, and Hank I really hear what you are saying, is that Jobs needed the surgery urgently and so it was performed.  I don't think this is a matter of wealth and only wealth, but more of a liver came that was a match in the nick of time for him.

I've told you all about this before somewhere, misplaced of course - but I think it fits here as well.  When Dj and I did the Liver Life Walk last fall we met a man, about 70, who couldn't sing enough praises about our shared doc.  He also said he was in a very bad way, his MELD was through the roof, and was literally living from minute to minute.  A liver became available in Maine, our docs from Boston flew up there, retrieved the liver, and he had his surgery all within a matter of hours.  His urgent need was twinned with a petite woman - each cheering the other on as best they could.  Sad but true, she didn't get a match and died while he was on the table.

I don't think Jobs or his docs could have hustled a TP if they wanted to - the TP system will not allow one person to "bump" another so wantonly.  Now, if he had gone to any of the countries his bank account could afford and bumped someone, it would be another matter entirely.

Again, my hope is that the publicity surrounding his surgery will alert the world to the need and importance of TP surgeries.  He does have the wealth, power, and ears of the newspapers, tv, etc. to kick that knowledge into gear tomorrow afternoon.  Now, that's what would be wonderful, and he might just have the inclination to do it.

Susie

P.S. I've been called a Pollyanna before, let fly if you choose. 

[Pancho and Lefty]

Seems like he did not buy a new liver. . . he just purchased a greater opportunity to receive one.  This high profile case is typical of for-profit medicine. Ya get what you can pay for. . . . which is nothing new.

by Nicole Cutler, L.Ac.

On medical leave from his company since mid-January, Apple CEO Steve Jobs has received a liver transplant. Because Jobs is an extremely wealthy man, his receipt of a liver transplant from Methodist University Hospital Transplant Institute in Memphis has prompted people to question if money can impact how organs are allocated.

Jobs' Health
Jobs' received surgery five years ago for a rare form of pancreatic cancer, an islet cell neuroendocrine tumor. Several doctors without firsthand knowledge about Jobs' health said the type of pancreatic cancer he had tends to be slow and if it were to spread, the liver is the first likely target.

In the beginning of 2009, Jobs reported that he was suffering from an easily treatable hormone imbalance and would remain Apple's CEO. Less than two weeks later, he said his medical problems were more complex, and that he would take a medical leave of absence for the first half of the year. While it is likely that the ambiguity surrounding his illness was intended to ease investor's fears, Jobs' receipt of a liver transplant confirms that he must have been extremely ill.

Top of the List
Many with end-stage liver disease spend years on the liver transplant list - hoping for a chance at survival. Especially because Jobs had not been previously linked with liver problems, it appears as if Jobs unjustly jumped to the top of the liver transplant waiting list.

In response to this concern, Methodist Healthcare assured the public that Jobs followed all protocols for evaluation and the liver transplant wait list. Methodist Healthcare added that Jobs was the sickest patient on the waiting list at the time a donor organ became available. In the U.S., the wait list for liver transplants is based on how sick a patient is, not how long they have been on the wait list.

In a June 24, 2009 press release from the United Network for Organ Sharing (UNOS), "whenever a person known to the public receives a transplant, it is tempting to compare that person's waiting time to national averages. Any comparison of one person's experience to that of thousands of others can be misleading." Known as a MELD score, liver waiting time is greatly influenced by a formula that assigns priority for organ offers based on the candidate's risk of dying within three months without a transplant. MELD uses objective calculations of common laboratory tests of liver and kidney function.

Improving the Odds
While UNOS' system aims to assure that livers are allocated based on need, Jobs found that there is a way to improve your chances of scoring an organ transplant. With the resources to travel upon a moment's notice and pay out of pocket for his medical care, Jobs obviously did his homework on liver transplantation. The following three strategies for improving transplant odds may have helped Jobs:

1. Finding a transplant center - The Scientific Registry of Transplant Recipients is an Internet database that gives average wait times, success rates and other details on every transplant program in the nation. "Anyone can go to that website and see which transplant centers transplant quicker than others," said Dr. Anthony D'Alessandro, liver transplant chief at the University of Wisconsin-Madison. According to UNOS, a transplant in Tennessee has a median waiting period of just 48 days, while the national median wait is 306 days.

2. Getting on a list - To get on a transplant center's list, a prospective patient must go there, be evaluated by the staff and have tests to confirm medical need. If accepted, the patient must be able to get to that center within seven or eight hours if an organ becomes available.

3. More than one - People can get on as many wait lists as they like as long as they can travel there and meet the transplant center's terms. According to UNOS, accepting someone already on another waiting list is at each transplant program's discretion.

By better understanding how the transplant system works, it is apparent that Jobs could not have "cheated" the system. Instead, he researched all of his options and used his resources to give him the best possible chance of survival. In addition to trusting that UNOS allocates organs based on need, researching the nation's liver transplant centers could help expedite a much-needed liver transplant.


References:

http://www.cbsnews.com/stories/2009/06/21/eveningnews/main5101417.shtml, Jobs' Liver Transplant Raises Questions, Retrieved June 26, 2009, CBS Interactive, Inc., June 21, 2009.

http://www.unos.org/news/newsDetail.asp?id=1265, PTN Statement Regarding Liver Transplant Waiting Times and Allocation, Retrieved June 27, 2009, United Network for Organ Sharing, June 24, 2009.

http://www.usatoday.com/news/health/2009-06-25-jobs-transplant_N.htm, Jobs' liver transplant shows money can make a difference, Marilynn Marchione, Retrieved June 26, 2009, USA Today, June 2009.

http://www.webmd.com/cancer/pancreatic-cancer/news/20090624/steve-jobs-liver-transplant-confirmed, Steve Jobs' Liver Transplant Confirmed, Miranda Hitti, Retrieved June 26, 2009, WebMD Health News, June 24, 2009.

Posted by Editors at June 29, 2009 10:45 AM

Copyright ©1994-2009 Hepatitis Central. Information at this website is for educational purposes only.

[DougV]

If all Jobe did was work the system, I can have no problem with it.  I personally plan on doing the exact same thing when it comes down to it.  And I ain't got his kind of money.  I do have enough though to be able to move for a few months, rent short term furnished housing, doesn't have to cost much, just a small place to live for a few months, my wife doesn't work so she can come.  We're not talking millions.  You would be amazed how inexpensive it is to call a small airport and arrange a charter to go anywhere.  And the research to figure out what states to register in is available to each of us for free.  It appears the only advantage Jobe would have over me, would be he has his own plane, I'd have to make a phone call and use a credit card, he would make whatever caretaker arrangements he'd want, I'd get my wife, he'd I'm sure have a nicer place to stay while there, I'd have a cheap dump close to wherever I needed to go.

I might also add he may have been listed for a really long time for all we know.  In his case I would imagine under a legal alias.

My objection to his getting a liver would be based only on one issue, that being whether or not he is truly medically deserving.  If he had only liver cancer and it was completely contained, or beaten back by chemo, whichever, and all that was needed is a liver, then good for him.  If however wealth was used to purchase doctors to lie and provide false information, for example to cover up cancer and poor prognosis with a new liver, then I got a problem with it.  But only if this happened and if so we'll probably know soon.

Doug

[hanklive39]

Interesting responses from everybody but, I've got a very simple question...

have any of you who so far has answered ever gone through the transplant process completely, and I mean not only being listed... I mean transplanted, gone throughrecovore & rehab, have seen fellow transplant survivors succeed, and fail afterwards and most importantly, witnessed more than once I might add, cases whereby the candidate was a more suitable candidate than the one who received the organ, only to see both candidates die shortly thereafter because of the way transplants are allocated these days???

Btw, it was not much better with the older system of allocation either except for the FACT that if anyone had cancer - it was an automatic denial for transplant which is not the same according to Steve Jobs case. I know of this personally from being initially rejected because of being misdiagnosed as having a form of lung cancer known as mesothelioma... It wasn't until one of the current Senators from New Jersey demanded that I be re-evaluated that I was diagnosed as being free of Mesothelioma!!!

While I was waiting for my transplant, during recovery, and in the years since (12 in October!), I have witnessed a whole bunch more than most folks would  in a lifetime.
I still to this day have access to the Scaife Medical Library of the University of Pittsburgh which has so much more information than what a resourceful person could find online regarding matters of transplantation of different organs besides the liver because after all, UPMC has long and accomplished history with respect to transplantation,
and that is an undeniable fact... It is also not without criticism either but, there can be no denial that almost all of the transplant surgeons that currently perform these operations in the US and abroad, did theri fellowships @ UPMC which is in itself remarkable!!!

Way back in 1998 when there was no use of a MELD score officially but, was being considered by UNOS, NIH (National Institute of Health), and HHS (Health & Human Services) I was amongst a group of post-transplant survivors who went down to Washington D.C. to express our views with respect to the proposed changes that were being debated both in Congress, and UNOS, NIH, and HHS... The reason I got involved was because too many of the friends I made during my wait for a transplant were dying because of the long waiting period, and because according to some transplant centers at the time -they were not in their opinion, suitable candidates based on a vast variety of excuses and yet, realistically very few reasons based on logical conclusions. These were some very interesting meetings and hearings to say the very least!!!

The Mickey Mantle story was also very much in all of our minds because of all the controversy connected with his story -  Reference Wikipedia:

"Mantle received a liver transplant at Baylor University Medical Center in Dallas, on June 8, 1995, because his liver had been damaged by years of chronic alcoholism, cirrhosis and hepatitis C. However, during the operation, doctors discovered he had inoperable liver cancer. In July, he had recovered enough to deliver a press conference at Baylor, and noted that many fans had looked to him as a role model. "This is a role model: Don't be like me," he said. He also established the Mickey Mantle Foundation to raise awareness for organ donations. Soon, he was back in the hospital, where it was found that his cancer was rapidly spreading throughout his body.

Though he was very popular, Mantle's liver transplant was a source of some controversy. Some felt that his fame had permitted him to receive a donor liver in just one day[4], bypassing other patients who had been waiting for much longer. Mantle's doctors insisted that the decision was based solely on medical criteria, but acknowledged that the very short wait created the appearance of favoritism.[6]"

When this happened, I was one of Mickey Mantle's biggest fans being a lifelong Yankee fan since two years old when I was taken to my first Yankee home game at the original Stadium so, I was shocked in disbelief that he needed a transplant, and even volunteered to wait a bit longer for mine so he could get his first!!! Not knowing the facts behind his condition, or how he got on the list, and transplanted even though when they opened him up, and found an inoperable form of cancer in the liver, they transplanted him anyway!!! Shortly thereafter he passed away because of the cancer he already had prior to the transplant... In other words, the transplant would not have made a difference in preventing the already existing, and continuously spreading cancer.

Now you may say that Mickey's story is different than Steve Jobs but, I see many similarities which makes it IMHO, De ja vu all over again!!!
Now when an average person is in the process of receiving a liver transplant, and on the OR table in the process of removing the diseased liver, if the surgeon's find cancer, they usually abort the operation/transplant procedure which was the case for more than one of my own friends who waited as long or even longer than I did for the gift of life... So when I heard that protocol was not followed in Mickey Mantle's case, I was then convinced that Mickey was given preferential treatment...
Then I read about PA Governor Casey's story, and I was even more convinced that there was, and probably still is a two tier system of protocols used in transplantation  currently.

UNOS will ALWAYS STATE their system is infallible, and if you believe that then you should have been there when the meetings, and hearings regarding the proposed changes in the Organ Allocation system were being debated!!! THEY LIED THROUGH THEIR TEETH!!! And they were caught lying through their teeth on many occasions during the hearings and meetings. I could go on and on but, If you're convinced that the system is fair based on what you read either online or from news accounts then, you're only being informed by only one side of the debate, and NOT based on facts that are out there which do prove that the hospital transplant committees that do the deciding of who gets an organ or not, based on mostly their own criteria, and then report to UNOS afterwards, do NOT always follow established protocols by UNOS which are nothing more than GUIDELINES!!! When this is discovered by the media, both the hospital & UNOS tend to circle the wagons so to speak in an effort not to lose face or the public's confidence in the UNOS System because, they only know too painfully what they (UNOS)had to endure (They almost lost their charter by HHS)as a result of the last hearings regarding organ allocation...

There is another very little known (Intentionally so)fact regarding HHS's RULES as opposed to UNOS GUIDELINES... Please let me elaborate if I may...
Does anybody here know that any transplant center of excellence that receives monies from HHS via medicare or medicaid via the state is allowed to perform transplants to patients of up to 5% of their total per year, with conditions, and circumstances that would not be acceptable by HHS if the total amount of these types of transplant cases exceeded 5%!!! In other words, The hospital is within it's rights to perform a transplant on a patient that doesn't meet the criteria established both by HHS and listed in the UNOS Guidelines as long as these procedures do not exceed 5% of the total transplants performed for the calendar year.
This is more than likely what makes this operation, and organ allocation almost perfectly legal but, it doesn't make it right!!!

Now some of you may think that I shouldn't make such a big deal out of this whole issue since this allocation is allowable... I just happen to disagree because of the principle of which if you give a loophole, and it is abused, then people who are equally deserving of the gift of life are DENIED the very gift as a result of the abuse of the loophole!!! When it comes to this very rare and invaluable resource, there should NOT be any loopholes that can be abused just like the plethora of loopholes abused in law on a daily basis by the affluent few who have the resources to do so.

All transplant centers including UPMC, have their own Public Relation Departments, and yet they will NOT make available to the public how many candidates were rejected to be transplant recipients because of cancer or other contraindications... They will only publicize who received a transplant, and there are loopholes in the system as to how they report survival rates to UNOS also!!!

I know of this because I'm involved!!! I've been a member of TRIO (Transplant Recipients International Organization) since 1997... I was there in the front lines observing as a recipient the battles that are fought by these different entities who one would like to think are acting in our best interests but, more than often are being manipulated by the special interests... So, if you think you're informed as to what is really going on in the world of transplantation - think again, and start digging a bit deeper. When you're done then come talk to me about the reality in this world.

Now don't get me wrong, I will always be grateful for being a recipient of the gift of life as well as grateful to the transplant team which performed the lifesaving operation on me... My objective here is not to discourage anyone from receiving a transplant or to express my opinion as to which center is better than the other even though I may be a tad biased at times... My main objective is to point out that the system is NOT PERFECT or FAIR as some seem to think it is... In fact, it's probably the best system in the world but, it is far from being perfect or totally fair as I've discovered through the years based on actual experiences, getting involved and doing the research to find out the facts.

Respectfully,
Henry

[MissyMouse]

Wonderful info Hank!   Your knowledge on this particular topic has always amazed me.

Mouse

[hanklive39]

Thanks Missy but, I'm only expressing what I have learned over the years, nad some of the stuff hasn't always been pleasant.

I just want end my comments by sharing with everyone in here what a young man wrote in response to Mickey Mantles' liver transplant, and it starts out like this:

"Summers we watched baseball, my father, my uncle and me sitting riveted for innumerable innings, rooting for the Mets. We scoffed at the umpires, cheered when the players kicked dirt on their shoes over a bad call, discussed the plays, remembered past glories, and added our voices to the announcers’ ritual of praise for Willie’s breathtaking basket catches. There was the way the Stork covered the ground, how close Tom had been to a no-hitter, and how good Tug was at closing things up. Cleon and Ed and Rusty and Tommy, Bud and Tug and Tom, and the great Willie Mays, come home to us.

I was seven the year they won the series, eleven when they won the pennant. Those years describe the totality of my love for baseball. Earlier, I was too young, afterward, a teenager with other concerns than baseball.

My mother: a cute, not quite hip, early 70’s girlish mom. Think Carol Brady. She doesn’t bring snacks, just comes down for a peek at the game. We handle the snacks. The men drink tiny bottles of beer, not more than one or two, from the basement fridge. I drink iced tea. We have pretzels, and my favorite, salted nuts. I have dibs on the cashews, my uncle the hazelnuts, and my father the almonds. My mother, if she is there for long, will eat the Brazil nuts, and my aunt the pecans. We leave the peanuts, and open another can. We are spellbound, cheering with thousands of fans in the park, and with our neighbors.

We can hear the neighbors. Some have moved the TV out to the front porch to escape the heat of indoors. It is a more innocent time, there is no crime, there are no noise complaints, there is no air-conditioning. Or rather, air-conditioning has not achieved ubiquity, like now. It is still leading-edge, and this neighborhood is contentedly following-edge. We, however, are indoors, nice and cool in our cavelike basement, parceling out the salted nuts.

From upstairs, my aunt will call out, “What’s the score?” And my uncle will answer her, “Two to one, but there’s a man on base.” My aunt will nod sagely, the importance of the game not in question, although she seldom watches. She is their sister, the eldest. My uncle, the youngest, is divorced and lives at our house. Over the course of five years of hardly missing a game, not even a double header, there must be hundreds of times, if not thousands, when she calls out for the score. Times when she asks me, even. My father and my uncle might have another reason for concern than team loyalty. They might have a bet on the game. They gamble like they drink beer, a little at a time, but consistently, and they win consistently, and occasionally, big. For the pennant, my uncle won big, because the odds were long. I got a bicycle. It was my confirmation, but we weren’t religious, and I always knew I got the bicycle more for the miracle Mets than for the ceremony.

Fast forward twenty years, twenty-five. My father and I still watch the ballgame, but now it is on the infrequent occasions when I visit. Infrequent to them, but I feel like I am there almost every month. Every other month at least. I realize that my father feels I have deliberately left them by moving two hours away. He doesn’t understand it’s only that I’ve lost my interest in baseball, and other things I used to like.

My aunt lost her only son, then her husband. My uncle died. His three grown children all have some degree of emotional problems, and this, my father says, is what killed him. But I know what killed him: the same thing that is killing my father. Diabetes, together with hepatitis contracted in the service during the War, my father in the navy, my uncle, the marines. My uncle had the worse diabetes, and died five years ago. My father, relatively healthier, is succumbing to treatments for prostate cancer that have weakened his liver and reinvigorated his hepatitis. My mother, now more Simone Signoret than Florence Henderson, thinks it was all the little bottles of beer, and, truth be told, the Scotch. It is all of those things, and the inability to swallow the hundred plus dollars a month in organic, vegetarian, potency-guaranteed supplements that I buy, on my graduate school-inspired artistic budget, which slowed his decline for the month that he took them. Why isn’t he taking them any more? Why didn’t the old gambler stop the treatments and gamble that the cancer would not return?

In the living room, which will soon become the sick room, will soon have the hospital bed where he will spend the last three weeks of his life, the two of us watch the game. Afterwards, in the post-game show, we learn that Mickey Mantle is getting a liver transplant, and I cannot sit beside my ailing father to hear this news. I get up and go out to the porch, as I have seen him do when he is upset and needs fresh air.

At the same time Mickey Mantle is getting his emergency liver transplant, not having to wait in line because he is Mickey Mantle, my father, with whom I watched over a thousand baseball games, is dying of liver failure, and although he is not that much older than Mantle, and was a strong and active man, there is no possibility of a liver transplant for him, no throngs of cheering fans giving up their places in the line for new livers, while their eyeballs turn yellow and their flesh loses its tone and hangs like an old sweater. An old yellowed sweater.

I stand on the porch, thinking of a throng of dying, yellowing fans cheering Mantle, who is getting the treatment they are denied, treatment that will be futile, it turns out, because during the transplant surgery, his doctors will discover advanced cancer. I go back inside, where the announcers are still discussing the case, regular organ transplant experts, with their blow dried hair and shiny suits. My father catches my eye, and understands. “What can you do?” he says, not meaning for me to respond, and I sit down again. What can I do? I picture a nationwide campaign to find him a liver, television ads, impassioned pleas for another few years for an old man who is not famous or rich, who never had crowds on the edges of their seats watching a long fly ball, going, going, gone, six hundred feet, seven, some people say. Mantle hit both righty and lefty, and it was estimated geometrically that one of his homers would have gone 734 feet, had it not hit the stands in Yankee Stadium. “You could at least take your vitamins,” I say.

With his hand, he bats my suggestion aside, like a gnat. He is more ready to die than I am to lose him, and I don’t want to fight about it. Instead, I think baseball is stupid, I resent the overpaid muscle heads who play it without any gratitude for their amazingly easy, healthy lives, I hate expensive, useless health insurance, care that is managed for profit, insurance company CEOs, and every heartless money grubbing bastard that ever walked the earth. My father is dying, goddamnit. Somebody do something.

It is 8:40 pm on a summer Saturday evening. Somewhere a baseball game is being played, but aside from visits to my father, I haven’t watched one in twenty-five years. The phone rings. It is my mother. She starts to tell me, and I say, I know. I tell her I will be there in the morning. I get up from the chair, look out the window at the warm evening, and turn on the television set, switching channels until I come to a game, any team will do. If I had a bottle of beer, I would have a drink. But I have something: I have iced tea. I pour a glass and raise it to my father as I watch the pitcher dispatch three batters and head back to his dugout, whacking his glove.

***

I never saw Mickey Mantle play live, but on tape, he is fast, he is so fast, he rounds the bases in thirteen seconds after blasting a home run over the wall. Crowds yell, cheer. Crowds fall out of the stands to get a better look at this marvel. He is the youngster in a club of greats, Ruth, Gehrig, DiMaggio, and he more than holds his own. Lucky you, I say to the pitcher on the screen, gesturing with my iced tea glass. You never came up against the likes of them.

I have a photo of my father taken when he was eighteen, in his navy uniform, the summer he enlisted. He is young and good looking, and I think, he could round the bases in thirteen seconds, why not? He stands with his brother, then seventeen and itching to join up, and his sister, twenty-two, and they are all so young. It is years before I will even meet them, but they have each other, and together, their expressions say, they can conquer the world. It is before his sister’s losses, before his brother’s death, before diabetes, hepatitis, prostate cancer, before anyone had even heard the words Pearl Harbor, where he would be stationed. In the photograph, it is summer, baseball season, and they are still at the time in their lives when there is not one strike against them. I love this photo."

This story was written by A.M. Amodeo and it has always been special to me because, I've seen people go through this, I also felt their pain and sense of injustice.

Respectfully,
Henry



   

[hanklive39]

This is a link for all of those who are not all that familiar with the MELD/PELD score, and it's history in which it's used exclusively in the allocation of liver transplants. Did you also know that the acronym originated from the Mayo End-stage Liver disease score as in Mayo Clinic which until recently not too high on the list of Transplant centers of excellence, and certainly not as reknown as UPMC or UCLA. (That's right! Other organ transplants aren't allocated by using the MELD/PELD score!!!)

In other words:

In 1998, the Government published a Final Rule clearly stating that waiting time should be de-emphasized as a major component of organ allocation. The Final Rule requires that the allocation policies be based on sound medical judgment using defined criteria to achieve the best use of donated organs and avoid wasting of organs.

In response to this mandate, the OPTN appointed a subcommittee of the Liver and Intestinal Transplantation Committee to develop and carefully assess an appropriate model to meet these criteria. Following a careful review of the literature and examination of existing liver disease survival models, the committee decided to further assess the Mayo End-stage Liver Disease model (later renamed Model for End-stage Liver Disease, or MELD) as a basis for a liver allocation policy. MELD, which had been developed to assess the short-term prognosis of patients undergoing transjugular intrahepatic portosystemic shunt (TIPS) procedures (9), was based on four simple variables, including three biochemical values (serum creatinine, serum bilirubin, and international normalized ratio, or INR, of prothrombin time) and the etiology of the liver disease.

Since it had been previously shown that survival following portosystemic shunt surgery is mainly determined by the severity of the underlying liver disease, it was hypothesized that the MELD model could be used as a prognostic indicator for all patients with advanced chronic liver disease, and potentially could be applied to prioritize patients on the waiting list for a liver transplant (10). The model had the advantage that it relied mainly on objective and standardized laboratory tests, which are readily available and reproducible throughout the country. None of the parameters in the model were subjective or had political overtones, such as age or race, that might make implementation controversial.

http://www.ustransplant.org/annual_reports/archives/2003/Chapter_X_AR_CD.htm


And here's the "Future Directions" or summary:

Future Directions

The new MELD/PELD system represents a departure from previous organ allocation policy. Waiting time, still the most important ranking criterion for kidney, pancreas, lung, and some heart candidates, has been almost entirely removed form liver allocation. The new system does not categorize patients into groups but utilizes a continuous score. These two important changes, combined with the removal of the CTP score’s subjective clinical factors, have resulted in a more patient-specific system that allows for better measurement and transparence.

Hepatocellular carcinoma remains a significant clinical challenge. With more than 14,000 new cases diagnosed each year, this single indication for transplantation has the potential to overwhelm the system. Future allocation policy will require more precise diagnostic modalities and a much better understanding of the natural history of progression to more fairly assign the correct priority for these patients based on their risk of progression beyond a stage favorable for transplantation. Additional refinements in defining the favorable stage itself will also be required.

Geographic differences in transplantation rates, distribution of MELD/PELD scores at transplant and differences in RRB policies will also need to be addressed. The MELD/PELD system addresses only allocation priority; it does not affect distribution units, defined as the smallest group of patients prioritized for a particular organ once it becomes available. In most cases, the distribution unit for liver allocation is all the patients wait-listed in all the centers served by a single organ procurement organization (OPO). There are currently many factors that make distribution units heterogeneous, such as number of brain deaths within the OPO’s service area, efficiency with which the OPO identifies and retrieves the organs from these donors, the number of candidates waiting at the centers in that OPO, the number of centers within the OPO, the listing practice and organ acceptance practice of each center within the OPO (35). These all contribute to variations in MELD/PELD score at the time of organ offer. The MELD/PELD system gives the liver transplant community a precise measurement of such differences. Regional sharing for candidates with MELD scores over a certain value might be one way to help direct more organs to those most likely to die without a transplant. Also, a better understanding of the mortality risks faced by waiting candidates based on the MELD score may allow for development of minimal listing or minimal transplantation criteria based on the risk of death with or without the transplant. This potentially could reduce the number liver transplants for candidates who have a higher risk of death from the transplant surgery than they have waiting for an additional 6-12 months.

The analysis of ECD livers also opens the possibility of matching recipients based on their risks of death without a transplant and donors based on their risks of graft failure to optimize the donor pool. Combining pre-transplant mortality risk models with posttransplant survival models may also allow liver allocation policy to evolve toward maximizing the benefit of transplantation so that organs are directed to those with a high risk of dying without the transplant and with the highest net survival with the transplant.

I hope htis helps to inform folks that are not too up to date on how the current policies are supposed to work.

Respectfully,
Henry