Steve Jobs Of Apple gets a new Liver

[Pancho and Lefty]

Off topic:

I just read a 'donate your liver' message on a hep C site. I immediately thought of this story. 

I wonder if more stories like Jobs' might cause a downturn in organ donation???

[Betty W.]

Max/Fred/ I sincerely think that you are the most honest and knowledgable person that I have ever known ! !

I trust every thing you say and do. You put a lot of thought in every word written as a post, and a lot is PURE common sence .

Thanks for all you do for "us"..on HCVAnon......

Betty

[hanklive39]

In response to your query Max,

I seriously doubt that this story will result in a downturn in organ donation... In fact, it's just the opposite occurred, and been proven after the Mickey Mantle controversy that an uptick in organ donation followed nationwide because of the overall heightened awareness.

Unfortunately however, there will always be more of a demand than can be met with respect to the availability of, and here's the key words: enough healthy organs for patients in need of the Gift of Life. That is unless the scientific community can come up with some cures which would offset the demand dramatically, and ESLD (End Stage Liver Disease) from Hep C, and Hepatocellular Carcinoma are amongst the highest causes for liver transplantation so, until these two conditions are significantly reduced, the demand will always outstrip the supply that is, unless a substantial improvement in organ (controlled cloning) harvesting is found that is safe from potentially adverse side effects

Respectfully,
Henry

[Hank's mom]

Hank -

Needless to say, this an emotionally packed situation.  There will always be the scrutiny when a wealthy person undergoes surgery, transplant to otherwise when there is a wait list of any kind.  I will never say that it isn't justified, it is our nature, and it seems that so many work on the small bits of info offhand. 

As I've said twice here, my hopes and prayers is that awareness is raised and research follows suit.

Thanks all for your info - so much to know - so much to learn - so much yet to do.

Susie

[hanklive39]

Susie,

The difference here is that I do NOT work from small bits of information offhand... In other words, I've been involved with transplant issues for over fifteen years now, and during those years, I personally have been blessed to study a whole bunch of information, and have learned a whole bunch over those years by getting involved, asking the questions without the fear of offending anyone, and being persistent in my persuit of becoming not only more knowledgeable regarding the issues, but also becoming aware of the obvious hype, and rhetoric that always seems to find it's way in the fight for fairness in transplantation as a whole.

Even if everything was done in the most equitable manner with respect to organ allocation issues, the very plain fact that the allocation of livers is done uniquely different from the allocation of any other organ, IMHO is just plain unfair - period!!! I mean this is just an obvious example of segregating one group of individuals (ESLD patients) from being treated, and listed in the same manner as ESRD - End Stage Renal Disease patients, or ESCD - End Stage Cardiac Disease, or ESPD - End Stage Pulmonary Disease, or any of the other End Stage Organ diseases of any other type I failed to include in this sentence.

Now some may think that the system is designed to be equitable without knowing all of the facts, and the fact is that Livers are singled out in how they are allocated.
This is where I disagree fundamentally with UNOS, and it's use of the MELD/PELD system of liver organ allocation which again, is NOT used to determine who should be closer to the front of the waiting list line when deciding the fate of any other organ transplant recipient candidate.

I have asked this question as to why liver transplant candidates are the only organ transplant recipient candidates subjected to a MELD/PELD score when all of the other organ transplant candidates are rated by their survivability... The answers I've been given IMHO, are not even close to being fair, rational, or logical based on so many factors that just seems to make the case for using the MELD/PELD score even more unfair towards a group of individuals that would otherwise be treated very differently if they were waiting for another organ, or waiting for liver in another country. In other words, I'm not convinced nor am I any closer to being persuaded into understanding the rationale as to why the MELD/PELD scoring system is used exclusively with liver transplant candidates, and not with transplant candidates waiting for any other organ in our OPTN. (Organ Procurement and Transplant Network)

The very fact that the MELD/PELD scoring system originated from one, I repeat one hospital (The Mayo Clinic) system's own evaluation criteria in determining the severity of an ESLD patient's level of illness whereby the use of a TIPS ( transjugular intrahepatic portosystemic shunt) could enhance the survivability of the patient, and intentionally left out complications of portal hypertension (e.g., ascites, encephalopathy, or variceal bleeding and similarly, etiology was found to contribute very little to MELD’s predictive power. The investigators concluded that a MELD score made up of the three laboratory values could be used without data on complications of portal hypertension and etiology. This study was performed where? At the Mayo Clinic of course!!! No bias in the study? I'm not convinced!!!

What bothers me the most is the fact that UPMC's or UCLA's transplant centers own models for determining medical need who were, and still are the leaders & pioneers in liver transplantation were not permitted to submit & show that their own studies concluded that the MELD scoring system was not an accurate predictor because, of the intentional exclusion of complications of portal hypertension (e.g., ascites, encephalopathy, or variceal bleeding and similarly, etiology which was found to be a factor when the study involved much larger numbers of patients than originally used in the Mayo Clinic's own study which IMHO, was so biased and manipulated so, that their own scoring system would predict more accurate outcomes mainly because of the exclusion of the previously mentioned factors which were determined by their own investigators, (being sarcastic here!) to contribute very little to MELD’s predictive power.

The other problem I have with the use of the MELD/PELD scoring system is the obvious fact that in any of the other organ transplants performed in the US, there is not a similar system in place where complications, and etiology are excluded. In other words the fact is, the MELD/PELD system is NOT used with any other organ transplant waiting list, and that IMHO, is discriminatory in itself!!!

In summary, I believe that the time is indeed way overdue to go back, and revisit the way the liver transplant allocation system is implemented...
If the current system is without being subjective, or without political overtones based on race or age then why is a similar system of factors NOT used in determining who receives any other type of organ besides the liver...

I believe very strongly that there are political overtones, and subjective results in the use of the MELD/PELD system, and I also feel that there needs to be new independent studies performed on determining in an unbiased manner that the MELD/PELD system is indeed the best system to use, and to seek a system that can be used across the board (with all organ allocations systems) to determine medical need as well as survivability for a transplant of any organ.

IMHO, there should NOT be any hidden agenda's which are most definitely present in determining medical need and survivability in transplantation of any organ...
In other words, the Gift of Life should not have any strings attached except for one... And that is to be committed in doing whatever it takes to make sure that one gives back as much as they can to society as a token of gratitude for being a recipient of the Gift of Life. this is the only string I gladly attach to myself as one of many grateful recipients of the Gift of Life.

Respectfully,
Henry   
   

[Pancho and Lefty]

Hank,

You have a wealth of knowledge about tp. . . and I have virtually none. My issues regarding tp are not the same as yours.

I do have opinions about donations. . . . or gifts if you will. I know that any gift I give is not to be put up to the highest bidder. Jobs or anyone else who can 'shop' for a liver is not someone I would wish to give a gift to. No offense intended to forum members. . . but it's my liver I'm thinking about.

I have been thinking about giving things. . . .some worth real money and some not. I've decided to bequeath whatever I may leave to those I consider worthy. I'll give nothing to anyone who I suspect will hold an estate sale. I can do that myself. . . and spend the money before I die.

I posted an article by Liz Cutler. . . someone who makes a living dispensing info about hep issues. It is her job to portray the organizations and institutions who pay her salary in a favorable light. She said nothing that violated 'ethics'  happened with Jobs' transplant. Of course, she has to say that because it's her job to do so.

I guess if people are willing to have their 'gifts' of life go only to people with an identifiable socioeconomic status that's their business. I'm just saying that it's not ok with me. . . and I'll wager if more people knew how things worked we'd find that many of them don't approve either.

If the exact details of organ shopping were known to the general public. . . I believe donations would, indeed, decline. Of course, it's highly unlikely the facts will become widely known. The 'for profit' medical/healthcare system will most certainly not allow the boat to be rocked. . . . and they have lots of people like Liz Cutler on salary to make sure it isn't.

Such is life when profit considerations come first.

Max

[glory]

My husband had a cancerous liver lesion-  Primary cancer not secondary. If you have secondary liver cancer you can not receive a transplant.  Primary you can receive. My husband had an ablation done on the liver lesion.  Hopefully and Prayerfully cancer will stay away until a liver can be found.  FYI  We had a friend that had liver cancer from Hep/ He is now 5 1/2 years into his transplant.  He is doing great.  My husband's Meld score is 22 he got extra points because of the cancer.  He got a call for a back up liver 4 days after being listed.  The primary was able to receive the liver, so we were discharged and are waiting again..