Liver Transplant: Life on the Liver Waiting List
Hospital administrator
Katherine Krivy suffers from Primary Biliary Cirrhosis (PBC), a rare,
chronic, and progressive disease that causes irreversible destruction of
the bile ducts. Sofosbuvir Velpatasvir | Generic EpclusaShe felt devastated when she was put on the waiting
list for a liver transplant. “I took the event as a personal failure.
‘Listing’ was something I never really imagined I’d be doing. I
thought I’d heal myself with herbs or meditation or some miraculous
event.” But like many individuals with a chronic liver disease, Ms.
Krivy adjusted to a life in limbo, waiting a full three years before her
transplant. She was not alone.
There are currently over 17,000 people waiting for liver transplants. In 1999, there were approximately 4,500 cadaveric livers available for transplants. Over 800 people died last year while waiting for a transplant and the rapidly increasing number of diagnosed hepatitis C cases will increase these deaths. Although living donor transplants may hold the answer for some who are in need, others will inevitably die waiting for an organ. When the general media covers the topic of transplants, the realities of the waiting list are rarely explored, nor are the bankrupting expenses related to surgery and the difficulties associated with the immune suppressant drug therapies that are part of post surgical life. This is the story from the point of view of liver patients and their families.
Stand-up comedian Richard Ramirez sees humor in almost every situation. But no one could expect laughter from the comedian’s diagnosis with Primary Sclerosing Cholangitis (PSC). PSC is a disease in which the bile ducts inside and outside the liver become narrowed due to inflammation and scarring. In 1995, he was told he would need a transplant in two to six years. On April 9, 1997, he went into the hospital and was told he could not leave until he got a transplant. He waited for 40 days.
He survived the wait with an attitude that has continued to shield him through a series of post-surgical complications, including brain seizures, and he advises anyone currently waiting for a liver to “continue to have faith and think positive. While I was in the hospital, my blood type was my affirmation -- B-Positive!”
Katherine Krivy’s experience of waiting for, and eventually getting, a transplant, necessitated major changes in her life and her attitude. “I stopped worrying. I read Holocaust survivor Victor Frankel’s book, Man’s Search for Meaning. He said that a man can survive anything if it has meaning, and the only thing you can control in life is your attitude.”
Ms. Krivy realized that she would have to imbue her experience with a truly compelling purpose in order to survive the ordeal of the waiting period. She got involved with the PBCers organization and ALF, actively participating in fundraising events. She has also become an articulate spokesperson, appearing on television, and talking to everyone she can about PBC, organ transplants, and liver disease in general. By “giving back,” Ms. Krivy has altered her experience and her life.
Life on the waiting list is challenging, and family members share the long days and longer nights with liver patients. Laurie Higgins waited with her 32-year-old husband. “He was a basket case. There were so many times he’d just say he wanted to die; that he couldn’t take it anymore.”
The availability of livers is unpredictable, and one night Laurie’s husband was prepped for surgery only to be told that there was something wrong with the organ. The roller coaster of emotions is almost unbearable.
Part of the omnipresent horror of the cadaveric liver waiting list is the unique knowledge that someone will have to die in order for the organ recipient to live. As Ms. Krivy grew sicker, she faced this reality. “One of my first thoughts was that someone is going to have to die to save my life. I wasn’t comfortable with that, and had to deal with another human being at the other end of this.”
Richard Ramirez will never take life or his health for granted again. He is thankful and acknowledges that the liver he received came from a 55-year-old woman from Long Island. “Every night that I take the stage, I talk about my transplant. I use my routine to spread organ donation awareness.” No one who has received a transplant forgets the organ donor and their role in creating a second chance at life.
There are many misconceptions about life on the list, including the idea that one has an actual number that will be reached within a set period of time. She said she had “plenty of time to think about it.” As she gradually started telling people she was on the list, she had a sense that they were watching and waiting. “The milestones are you getting sicker and your status moves up but it’s not like a number in a store line,” says Ms. Krivy. “Waiting wears on you more than being sick. It’s a constant holding pattern. You wonder what is going to happen and when.”
Even after the transplant, the waiting continues. Laurie Higgins said that doctors gave her husband a two-year window for rejection after a seven-year wait for the organ. “It’s still in the back of our minds.” The other issue that rests in the back of Laurie Higgins’ mind is the enormous expense related to the transplant. She strongly recommends that the families of patients on the waiting list begin fundraising prior to the surgery. Insurance does not cover it all, and the impact can last for years and years, adding a layer of financial insecurity to the joy of a new life.
The years Ms. Krivy spent on the list shaped her post-surgery life. “Living day-to-day and trying to be thankful for what I have, helped me realize that I’m the happiest I’ve ever been in my life. Now I am giving back. I have come to truly believe that, based on my own personal experience, there is a silver lining or another side to every bad or unpleasant thing. Instead of looking at the bad, I wonder what I am supposed to learn. My blessing was finding the meaning in my life.”
There are currently over 17,000 people waiting for liver transplants. In 1999, there were approximately 4,500 cadaveric livers available for transplants. Over 800 people died last year while waiting for a transplant and the rapidly increasing number of diagnosed hepatitis C cases will increase these deaths. Although living donor transplants may hold the answer for some who are in need, others will inevitably die waiting for an organ. When the general media covers the topic of transplants, the realities of the waiting list are rarely explored, nor are the bankrupting expenses related to surgery and the difficulties associated with the immune suppressant drug therapies that are part of post surgical life. This is the story from the point of view of liver patients and their families.
Stand-up comedian Richard Ramirez sees humor in almost every situation. But no one could expect laughter from the comedian’s diagnosis with Primary Sclerosing Cholangitis (PSC). PSC is a disease in which the bile ducts inside and outside the liver become narrowed due to inflammation and scarring. In 1995, he was told he would need a transplant in two to six years. On April 9, 1997, he went into the hospital and was told he could not leave until he got a transplant. He waited for 40 days.
He survived the wait with an attitude that has continued to shield him through a series of post-surgical complications, including brain seizures, and he advises anyone currently waiting for a liver to “continue to have faith and think positive. While I was in the hospital, my blood type was my affirmation -- B-Positive!”
Katherine Krivy’s experience of waiting for, and eventually getting, a transplant, necessitated major changes in her life and her attitude. “I stopped worrying. I read Holocaust survivor Victor Frankel’s book, Man’s Search for Meaning. He said that a man can survive anything if it has meaning, and the only thing you can control in life is your attitude.”
Ms. Krivy realized that she would have to imbue her experience with a truly compelling purpose in order to survive the ordeal of the waiting period. She got involved with the PBCers organization and ALF, actively participating in fundraising events. She has also become an articulate spokesperson, appearing on television, and talking to everyone she can about PBC, organ transplants, and liver disease in general. By “giving back,” Ms. Krivy has altered her experience and her life.
Life on the waiting list is challenging, and family members share the long days and longer nights with liver patients. Laurie Higgins waited with her 32-year-old husband. “He was a basket case. There were so many times he’d just say he wanted to die; that he couldn’t take it anymore.”
The availability of livers is unpredictable, and one night Laurie’s husband was prepped for surgery only to be told that there was something wrong with the organ. The roller coaster of emotions is almost unbearable.
Part of the omnipresent horror of the cadaveric liver waiting list is the unique knowledge that someone will have to die in order for the organ recipient to live. As Ms. Krivy grew sicker, she faced this reality. “One of my first thoughts was that someone is going to have to die to save my life. I wasn’t comfortable with that, and had to deal with another human being at the other end of this.”
Richard Ramirez will never take life or his health for granted again. He is thankful and acknowledges that the liver he received came from a 55-year-old woman from Long Island. “Every night that I take the stage, I talk about my transplant. I use my routine to spread organ donation awareness.” No one who has received a transplant forgets the organ donor and their role in creating a second chance at life.
There are many misconceptions about life on the list, including the idea that one has an actual number that will be reached within a set period of time. She said she had “plenty of time to think about it.” As she gradually started telling people she was on the list, she had a sense that they were watching and waiting. “The milestones are you getting sicker and your status moves up but it’s not like a number in a store line,” says Ms. Krivy. “Waiting wears on you more than being sick. It’s a constant holding pattern. You wonder what is going to happen and when.”
Even after the transplant, the waiting continues. Laurie Higgins said that doctors gave her husband a two-year window for rejection after a seven-year wait for the organ. “It’s still in the back of our minds.” The other issue that rests in the back of Laurie Higgins’ mind is the enormous expense related to the transplant. She strongly recommends that the families of patients on the waiting list begin fundraising prior to the surgery. Insurance does not cover it all, and the impact can last for years and years, adding a layer of financial insecurity to the joy of a new life.
The years Ms. Krivy spent on the list shaped her post-surgery life. “Living day-to-day and trying to be thankful for what I have, helped me realize that I’m the happiest I’ve ever been in my life. Now I am giving back. I have come to truly believe that, based on my own personal experience, there is a silver lining or another side to every bad or unpleasant thing. Instead of looking at the bad, I wonder what I am supposed to learn. My blessing was finding the meaning in my life.”
