Who should get organ transplants?

Many of the letters we received about May 31's "After livers, cash to UCLA" (click here to read news article) came from liver transplant recipients and their families and friends. (Click here to read letters published in the print edition of The Times.)

Many were alarmed by the report that four Japanese men with suspected gang ties, who are now banned from entering the United States, had received liver transplants at UCLA between 2000 and 2004. That the organ recipients later donated large sums to the hospital also rankled.

Some, including patients of Dr. Ronald Busuttil, the executive chairman of UCLA's surgery department who performed the surgery on the Japanese patients, defended their doctor and his hospital.

A few worried that the Times' story would discourage future organ donations.

All eloquently recalled the physical and emotional trauma of waiting for, receiving — and in some cases, not receiving — a life-saving organ.

The following are selections from patients' letters.

Raymond Duquette, Bakersfield:

It has to be difficult for anyone to understand what life is like at the end stages of liver disease. How can someone believe that you no longer remember where you put things, why you get lost while out for a walk, why you are unable to stay awake more than two hours at a time, requiring four hours of sleep in between? How can anyone understand how devastated an end stage liver patient feels when he wants to take care of his family but is no longer able?

So many trips to doctors, so many tests — how can I go on? Finally I'm on the liver transplant list. How long must I wait? Will I live long enough to receive a liver when one becomes available?

The hair still stands in the nape of my neck as it did when a young surgeon entered my hospital room and announced that I would shortly leave for the operating room for the liver transplant.

....

For eight and a half weeks the doctors and nurses were there for me during the hospital stay. During those long weeks there was never a moment when I felt alone. Helpless, but not alone.

I often remind myself how fortunate I am to have had such outstanding care to have made it possible for me to see my children become responsible adults. These years have also brought three wonderful grandchildren who remind me daily how fortunate I am to be able to love them and receive theirs in return.

There was never an issue of anyone receiving better care than anyone else — so I was shocked when I read the LA Times reports about special treatment for gangsters. Thousands of patients are now alive because of Dr. Busuttil. He trained many liver transplant surgeons during these past two decades who in turn have performed thousands more transplants with people all over the world, making it possible for very sick people to lead productive lives.

The professionals who criticize Dr. Busuttil, thereby putting the outstanding program in jeopardy, should be censored. At least until they know the whole story.

Maureen Ardron, Yorba Linda:

Thank you for your exposure of the unconscionable acts of the UCLA transplant department.

My friend of almost 40 years died yesterday of liver failure due to her fight with lupus. She was a divorced and devoted mom who raised two successful children with little or no help. She was a loyal friend, an honest American taxpayer and a good person. In addition to her children and grandchildren she loved her 91 year old mother, Rae, her Pug Chloe and her boyfriend Jim. Her name was Judy and she will be missed.

For some reason these characteristics were not what UCLA was looking for when choosing transplant candidates.

Maybe I forgot to mention what she did not do. She did not donate $100,000 to the UCLA transplant department.

Shame on UCLA.

Robert Scanlan, Trabuco Canyon:

I share your exasperation to think that a major criminal and murderer was given the gift of a second life at the behest of the FBI in co-operation with other government agencies. However, as a transplant recipient myself, I believe you have failed to highlight the real cause of this fiasco.

Dr. Busuttil does not single-handedly decide who gets a liver, nor is it his responsibility as a physician to pass judgment on the morality of his patients. There are committees which approve or deny every transplant candidate. The committees have national guidelines which focus on: Does this patient have a dire need for transplant? Can this patient survive the process and have a functional life?

Your article admits there is no evidence that either UCLA or Dr. Busutill had knowledge of the mobster's history. The donation to UCLA of $100,000 a few months after the successful procedure is not significant. I, and I believe any successful transplant patient, yearn to donate such money. I would, if I had the means.

The FBI, by its own admission in your article, facilitated entry of the mobster and his henchmen to the U.S. in 2000 in return for crime-stopping information.

...

Finally, let me add that by besmirching the UCLA program and its leader, you possibly have stolen more lives than the mobster patient. The gang boss took a liver that could have saved another patient's life. Should just one potential organ donor read your scurrilous article and change their intent to donate, you will have also cost a person his or her chance to a new life.

As long as the demand for liver transplants exceeds the supply, the liver transplant allocation system will be imperfect. Worthy patients will go unanswered. Our duty is to promote positive improvements, not to wrongly tear down people and a process which save lives and continue to hold great promise for our futures.

Nancy K. Thompson, of Corona del Mar:

Thank you for staying on top of this story. My husband was waiting for a liver during a portion of that time. I had great faith that he would stand an equal chance for a liver knowing full well the scarcity of the organ and the high demand for it. I was confident that he was being cared for at the best medical facility for his needs.

As he became more seriously ill it seemed as if he had become just another number in a long line of very ill patients. I realized that I needed to look elsewhere if he were to stand a chance to live. We were very fortunate to be able to get him to the Mayo Clinic in Jacksonville, Florida where he received a liver transplant just in the nick of time. The medical care, as well as the personal care for him as an individual, was superb.

While we were exploring the option of flying him to Florida we kept quiet about it because we didn't want to jeopardize his chances at UCLA. Somehow one of the doctors found out and called him to say if he stayed at UCLA he would have a liver within six months. I found that to be quite strange as the conversation at the last appointment just weeks before indicated that it could be another year or two. I didn't think that there were any guarantees! How naive I was. If I knew then that a major donation was all that was needed I would have sold our home to make it happen.

My husband is doing well now and actively talking and supporting other patients as they go through their ordeal. Our hearts go out to those families who lost loved ones during that period of time and today are wondering whether their family member would have had a chance for life instead. We couldn't agree more with Dr. David Mulligan's comments. During my husband's evaluation process we were both intensely interviewed and asked very personal questions. I guess that step was missed with the gentlemen from Japan.

As the demand continues to grow we will need the generosity of donors more and more. I hope that this scandal does not cause people to shy away from signing a donor card. That is the greatest gift of all....the gift of life!

Personally I don't think that these individuals should have qualified for a transplant based on their criminal background and at a state funded institution no less. Our own desperately ill citizens lost out on that one. Stay with this story so that it doesn't happen again. Thank you.

Lucy Stutz, Westwood:

In 2004 Dr. Ronald Busuttil saved my life by performing a liver resection to remove a large tumor from my liver. I was extremely grateful to have a man with his experience perform this surgery. As thanks my husband and I gave a monetary gift to UCLA's Dept. of Surgery Discretionary Fund. This gift was not solicited by anyone at UCLA nor was it a condition of being seen by Dr. Busuttil.

Your newspaper and Senator Charles Grassley should look into why the FBI would allow Mr. Goto into the United States and how the FBI failed to gain any pertinent knowledge of the Japanese yakuza organization from him, instead of trying to make Dr. Busuttil look like a bad guy. He's an amazing surgeon with many grateful patients.

Jackie Colleran, Thousand Oaks:

If anything, this is an FBI scandal if they did indeed coerce the patient for information to get a visa. UCLA is a large institution and can fight its own battles but you choose to destroy public trust in a program that serves medicare, indigent, and patients with cancer, that many other such programs refuse to transplant. I see them each week volunteering on the liver transplant floor.

The US government has decreed that 5% of available organs can go to foreign nationals. That is scrupulously followed as transplant programs do not want to lose accreditation. If you want to only transplant US citizens with US organs then work on that, but do not maliciously destroy the hope of those who suffer and wait. Until we have enough donated organs we will always have patients die while waiting for their miracle, which might never arrive.

Discuss today's Letters Plus.