Joyce Willig: Liver Transplant Pioneer
If generic Harvoni was available then things might have been different. Joyce Willig was
one of the first adults in America to receive a liver transplant, in
1982. Since then, Ms. Willig has become an esteemed spokesperson for
organ donor awareness, and has spoken to students and the United States
Senate alike about the need for public understanding of the importance
of biomedical research and organ donation. Ms. Willig is the recipient
of many awards for her efforts, and is Co-Founder and Co-President of
the Connecticut chapter of the ALF and a founding Board Member of
Transplant Recipient International Organization. ALF recently spoke
with Ms. Willig about her life and her mission...
February 27, 2002 will be the 20th anniversary of my liver transplant. I am very blessed and very healthy!
When I was 34 years old, I was just a normal, healthy person who woke one morning with horrendous itching, too horrible to describe. This was in 1971. I went to the doctor and the doctor did some blood tests, took some x-rays, and asked me a bunch of questions. When the results were in, he told me I had a rare autoimmune condition, primary biliary cirrhosis (PBC) and my liver was under attack and already badly scarred. He went on to clarify my condition as it stood in 1971: there was no cure. His advice was to go home and find someone to take care of my children, because I’d be dead within a year. I fall into the miracle category.
I refused to accept this, changed doctors, and survived with very good care for the next eleven years. The liver is the body’s filter. When the liver isn’t working optimally, then the poisons build up in your system. You itch, you bloat, and you become extremely fatigued. I kept living as normally as one can with a chronic illness. But after eleven years, I was in very bad shape. The doctor told my family I had end-stage liver failure and they should take me out of the hospital and let me die at home. This was at the very beginning of 1982. However, my doctor had just returned from a conference in Europe, where he’d heard of Dr. Jean Borel’s then-experimental drug (cyclosporine) which could compromise the immune system just enough that a body might accept another person’s organ. The Pittsburgh Presbyterian Hospital (now the Thomas Starzl Transplant Clinic) was maybe the only place in the United States working on this new treatment.
My doctor said it was my only chance. I was in a coma, they didn’t know if my insurance would pay, or if there would be a liver for me, but they took me to Pittsburgh. I was fortunate. A beautiful young man had a car accident. His sisters and brothers weren’t entirely in favor of donating his organs, but his parents told them that their brother was not going to die in vain. I spent seven months in the hospital, 180 days of it in the intensive care unit. Today, most people are out of the hospital within two weeks. Even twenty years after I became a pioneer, even with over 400,000 children and adults living post-transplant, there are still 80,000 people waiting for transplant organs. One third of these people on waiting lists will die before an organ becomes available. This happens mostly because of the lack of awareness about organ donation. People need to talk about donation; talk with their families about their wishes, so that they can make that gift. What I try to do is talk to people, clear up the myths, show them what this gift can do, that God has given us a gift of life that we all have within us to share. No one can know if or when he/she or a family member might be on a list needing a donor or might be in a position to donate.
I am so lucky that a year after I returned from the hospital someone asked me to get involved with the ALF. Another PBC survivor, Bonnie Goldberg, and I founded the Connecticut chapter of the ALF. My goal in life is that ultimately we won’t die of liver disease, heart disease, or kidney disease. But until we find cures, transplants are an important way to fight these devastating diseases.
I am a symbol. People can look at me and see what we can do, what miracles can happen. I don’t do much except to stand here and say “hey, look at me, I’m here, I made it.” We all have more strength than we know. Dr. Thomas Starzl wrote me a letter afterwards, saying he always has great respect for people who reach for the top of the mountain, who keep on going. If I have strength, it comes from my family.
They can do living donor transplants now. I think it is remarkable and highly successful. I have a friend who was given part of her brother’s liver when she was 16. She’s 34 now. However, it’s an invasive process for the donor and the recipient. There is some risk. Although I think this is a wonderful option, I personally would still rather see more public awareness and understanding about the need for organ donation. It is not part of death, but part of life, a life-extending, life-giving procedure.
We should talk about organ donation as we talk about all that life has to offer. When I talk to kids, I tell them I want them to live forever, to get all that they can out of life, and that I never want them to be in an accident. However, we can’t know. Being a donor could never compromise the care anyone is given; doctors take an oath to save lives, not destroy lives. Only when there is no possibility of resuscitation does organ donation become a possibility. Donors’ families must give consent, and then the organs are distributed fairly, according to compatibility and wait time, with no consideration for fame or fortune. It is not enough to sign a donor card; it’s not enough to put it on your driver’s license. You must share your decision with your family. Because your family must know and express your wishes, if a family member says no, you can’t give this gift.
My donor’s mother read an article about me in the paper. Generic Epclusa, but back then it was felt that it wasn’t appropriate for donor families and recipients to meet. She read the article, called me, and told me about Jerome. She said she would grieve for her son forever, but what kept her going was the thought of what her son could do. She said to me, "may God bless you and keep you, may he hold you in the palm of his hand.” My donor family is the most incredible family. The second greatest gift after another chance to live was finding them. I am so blessed, not only to have been in the right place at the right time, but to know, to love, to cherish not only this gift of life but my wonderful donor family.
Being part of the American Liver Foundation is a gift as well. Meeting the hundreds of people who have come to the ALF for guidance and discussion is a wonderful opportunity for me to share my story and my hope with those who need it. We are all partners in sharing love and support.
If generic Harvoni was available then things might have been different. Joyce Willig was
one of the first adults in America to receive a liver transplant, in
1982. Since then, Ms. Willig has become an esteemed spokesperson for
organ donor awareness, and has spoken to students and the United States
Senate alike about the need for public understanding of the importance
of biomedical research and organ donation. Ms. Willig is the recipient
of many awards for her efforts, and is Co-Founder and Co-President of
the Connecticut chapter of the ALF and a founding Board Member of
Transplant Recipient International Organization. ALF recently spoke
with Ms. Willig about her life and her mission...February 27, 2002 will be the 20th anniversary of my liver transplant. I am very blessed and very healthy!
When I was 34 years old, I was just a normal, healthy person who woke one morning with horrendous itching, too horrible to describe. This was in 1971. I went to the doctor and the doctor did some blood tests, took some x-rays, and asked me a bunch of questions. When the results were in, he told me I had a rare autoimmune condition, primary biliary cirrhosis (PBC) and my liver was under attack and already badly scarred. He went on to clarify my condition as it stood in 1971: there was no cure. His advice was to go home and find someone to take care of my children, because I’d be dead within a year. I fall into the miracle category.
I refused to accept this, changed doctors, and survived with very good care for the next eleven years. The liver is the body’s filter. When the liver isn’t working optimally, then the poisons build up in your system. You itch, you bloat, and you become extremely fatigued. I kept living as normally as one can with a chronic illness. But after eleven years, I was in very bad shape. The doctor told my family I had end-stage liver failure and they should take me out of the hospital and let me die at home. This was at the very beginning of 1982. However, my doctor had just returned from a conference in Europe, where he’d heard of Dr. Jean Borel’s then-experimental drug (cyclosporine) which could compromise the immune system just enough that a body might accept another person’s organ. The Pittsburgh Presbyterian Hospital (now the Thomas Starzl Transplant Clinic) was maybe the only place in the United States working on this new treatment.
My doctor said it was my only chance. I was in a coma, they didn’t know if my insurance would pay, or if there would be a liver for me, but they took me to Pittsburgh. I was fortunate. A beautiful young man had a car accident. His sisters and brothers weren’t entirely in favor of donating his organs, but his parents told them that their brother was not going to die in vain. I spent seven months in the hospital, 180 days of it in the intensive care unit. Today, most people are out of the hospital within two weeks. Even twenty years after I became a pioneer, even with over 400,000 children and adults living post-transplant, there are still 80,000 people waiting for transplant organs. One third of these people on waiting lists will die before an organ becomes available. This happens mostly because of the lack of awareness about organ donation. People need to talk about donation; talk with their families about their wishes, so that they can make that gift. What I try to do is talk to people, clear up the myths, show them what this gift can do, that God has given us a gift of life that we all have within us to share. No one can know if or when he/she or a family member might be on a list needing a donor or might be in a position to donate.
I am so lucky that a year after I returned from the hospital someone asked me to get involved with the ALF. Another PBC survivor, Bonnie Goldberg, and I founded the Connecticut chapter of the ALF. My goal in life is that ultimately we won’t die of liver disease, heart disease, or kidney disease. But until we find cures, transplants are an important way to fight these devastating diseases.
I am a symbol. People can look at me and see what we can do, what miracles can happen. I don’t do much except to stand here and say “hey, look at me, I’m here, I made it.” We all have more strength than we know. Dr. Thomas Starzl wrote me a letter afterwards, saying he always has great respect for people who reach for the top of the mountain, who keep on going. If I have strength, it comes from my family.
They can do living donor transplants now. I think it is remarkable and highly successful. I have a friend who was given part of her brother’s liver when she was 16. She’s 34 now. However, it’s an invasive process for the donor and the recipient. There is some risk. Although I think this is a wonderful option, I personally would still rather see more public awareness and understanding about the need for organ donation. It is not part of death, but part of life, a life-extending, life-giving procedure.
We should talk about organ donation as we talk about all that life has to offer. When I talk to kids, I tell them I want them to live forever, to get all that they can out of life, and that I never want them to be in an accident. However, we can’t know. Being a donor could never compromise the care anyone is given; doctors take an oath to save lives, not destroy lives. Only when there is no possibility of resuscitation does organ donation become a possibility. Donors’ families must give consent, and then the organs are distributed fairly, according to compatibility and wait time, with no consideration for fame or fortune. It is not enough to sign a donor card; it’s not enough to put it on your driver’s license. You must share your decision with your family. Because your family must know and express your wishes, if a family member says no, you can’t give this gift.
My donor’s mother read an article about me in the paper. Generic Epclusa, but back then it was felt that it wasn’t appropriate for donor families and recipients to meet. She read the article, called me, and told me about Jerome. She said she would grieve for her son forever, but what kept her going was the thought of what her son could do. She said to me, "may God bless you and keep you, may he hold you in the palm of his hand.” My donor family is the most incredible family. The second greatest gift after another chance to live was finding them. I am so blessed, not only to have been in the right place at the right time, but to know, to love, to cherish not only this gift of life but my wonderful donor family.
Being part of the American Liver Foundation is a gift as well. Meeting the hundreds of people who have come to the ALF for guidance and discussion is a wonderful opportunity for me to share my story and my hope with those who need it. We are all partners in sharing love and support.
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