More on Organ Transplant Injustice and Uncertainties
Our United States government continues to call for more organs to be procured and the transplant programs continue, but is the whole program as thought out and transparent as it could be? The U.S. organ transplant program with its social as well as clinical consequences is not as uncomplicated and rosy as those who are not involved might think. There is much uncertainty for recipient patients and their families if the patient is put on a organ waiting list such as how long is the wait going to be, will an organ be available before the patient dies and if one is transplanted what complications will occur, what will be the quality of life and how long will life be extended. There are protocols for the just distribution of organs but as seen in the case of St.Vincent Medical Center, unknown to the patients and their families, they don’t always work.
To demonstrate some of the uncertainties patients experience, two visitors recently wrote me the following comments and questions about the transplantation process.
“I received a liver transplant last year. The group that I was with in the post transplant clinic had a mean age of 50. Most of them have HCV, and most will be asking for a retransplant within 5 years. If retransplanted, %35 will not leave the hospital. The long term survival rate for the rest is all over the grid.
Should retransplant even be reconsidered? If so, who gets one? “
From another visitor:
“I recieved a liver tramsplant a year ago June. Like the majority of liver transplant patients( LTP) I have HCV. The HCV returned within a year. I went from stage 1 to stage 3.5 in 6 months.
There is no protocol for re-transplantation of HCV patients. Many are never the less performed on a "case by case" basis.
Having a retransplant performed in India is an option. $ 75 grand and a partial donor in-tow seems to be all they require. Their sucess rate seems to be inline with many domestic institutes. The primary motivation of the Indians is money. Oh yea, the Solons of our domestic medical institutes claim to be above such pedestrian motives as money; try to get a transplant without it.
So, does one take $ 75 grand, plus, and lawyer-up, and then take it your former life savers. Or does one blast off to New Delhi in hopes of a sucessful outcome?”
Finally, from the November 10, 2005 issue of the Los Angeles Times,I have excerpted the following disclosure which would be unpleasant news for patients and families involved regarding what has been going on at the University of California at Irvine. Please go to the link above and read the entire article.
Irvine Liver Transplant Program Loses Government Approval
By Charles Ornstein and Alan Zarembo, Times Staff Writers
The federal government today rescinded its approval for the liver transplant program at UC Irvine Medical Center after The Times reported that more than 30 people died awaiting liver transplants in the last two years as the hospital turned down scores of donated organs. …
The move means that many of the 106 patients on UC Irvine's waiting list for a liver transplant will have to be transferred to lists at other hospitals. Twenty eight of those people were added to the roster this year -- despite a staffing shortage that dampens their prospects for a transplant.
Although patients may not know it, the UC Irvine Medical Center has not had a full-time liver transplant surgeon since July 2004…
The low number of surgeries was not because of a lack of offers. Between August 2004 and July 2005, the hospital received 122 liver offers, most of them from the regional organ procurement agency, which coordinates donations and offers in Southern California. But only 12 were transplanted, including two that went to the same patient because the first one failed, according to an Aug. 5 federal report obtained by The Times under the Freedom of Information Act.
Even when patients did get transplants, the report says, they did not fare as well as they should have. Only 68.6% of patients who received liver transplants at UCI from January 2002 to June 2004 survived at least a year -- well below the 77% survival rate required for federal certification.
What does this all mean? You tell me! ..Maurice.
posted by Maurice Bernstein, M.D. @ 8:18:00 AM
2 comments
2 Comments:
My brother died last week (October 18, 2007) after a three week ordeal following his liver transplant. It was over two weeks after the liver transplant before the liver would begin to function. Problems included swelling, bleeding, inability to function, kidney failure requiring daily dialysis, and lung problems. In these two weeks the tubes to his lungs could not be removed, mainly because after the first surgery he had to be opened up again and his liver had to be "packed" to reduce the swelling and control the bleeding. Three more surgeries followed before he was finally closed up. Then the swelling subsided, the kidneys began to function, he required less and less dialysis, his blood pressure was normal, heart and pulse were also normal. The invasive tubes were removed from this throat and a tracheal (spelling?) tube was inserted. Then a fungal pheumonia attacked his lungs within hours of the tracheal surgery and death followed in two days.
We were not prepared for any of this. Our pre-operative consultation with the social workers and doctors were full of positive advice. We were told that surgery could take anywhere from 8 to 12 hours; stay in the ICU could take about 3 days to 1 week and following would be a lengthy post operative care involving two visits to the hospital for about a month, dropping to 1 visit a month eventually slacking off over the course of about a year.
The prognosis for the future was not guaranteed, but we all led to believe that since he was a relatively good candidate for the surgery, that it would be successful and he could probably live out his life.
We were not prepared for failure. We were prepared for a successful outcome. The hospital socialwork staff only talked in terms of a successful surgery and treatment. At no time was the downside of the surgery and post operative problems ever mentioned. They only talked in terms of the post operative treatment, scheduled visits and commitment of other family members to his care and treatment. This is what we discussed and for which we were prepared.
My brother was 57 years old, a intelligent man, looking forward to a bright future with a new job awaiting him. Today, we buried him.
We are shocked and horrified at his ordeal. The downside of surgery transplantation was not presented to us. We were told that the body might reject the liver. This never happened. But maybe that's exactly what happened to him. We don't know.
We'd like to hear from other transplant donees or their families.
Anonymous, your story is tragic. A brother dying after surgery anticipated to be successful is terrible but is not at all rare or particularly unusual. What is sad is that the patient and family may not have been given a realistic view of many of the potential dangers, complications and subsquent consequences from the surgery. I am not involved in the transplant operations themselves so I don't know how the procedures are presented to the patient and family. The issues following the surgery can be complex and certainly the bad outcomes from surgery should be explained even more thoroughly than the good.
You know, my best advice would be for the family to sit down now and talk to the surgeons and other physicians caring for the patient about the family's concerns and then listen and look for information which will be supportive for the the family's current needs. ..Maurice.
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