by Mark Smiley
Cherry Creek Valley resident Elizabeth (Biz) Erickson, age 31, watched as her sister Emily, age 36, slowly wasted away and began to die from the liver disease Primary Sclerosing Cholangitis (PSC) as she waited for a transplanted liver from a cadaver. Football legend Walter Payton died from PSC at age 45 and now his football coach Mike Ditka has the very same disease.
Every year thousands die while waiting for a cadaver liver which never comes. Emily’s dilemma was made even more acute from the fact that she has a relatively rare blood type, AB+. Elizabeth could no longer watch her sister suffer and volunteered to help try to save her sister’s life by offering the gift of her own liver or more accurately, 65% of her liver. Luckily livers are one of the most regenerative portions of the human anatomy and if the operation is successful, both women will eventually have full livers. But the operation is not without serious risks for both the donee and the donor.
Out of every 100 people who receive a liver transplant using a living donor, 78 will live for five years or more and 22 will die from the transplant. The odds for the donor are better with approximately one in five hundred dying from the operation.
Transplant
On December 8, 2015, University of Colorado Hospital (UCH) surgeons will transplant a portion of Elizabeth’s liver in Emily’s body. The sisters will spend 5-10 days at UCH and once they are stable, they will be taken to a transplant recovery area to continue recuperating. It takes about 2-4 months of rest, rejuvenation, and regeneration at home. The liver will regenerate in Biz’s body within months and there is a chance that Emily may be close to feeling 100% in six weeks, a feeling that she has not had in over 13 years.
The sisters’ mother, Kathy Barrett, stated, “This is an unbelievable gift Elizabeth is giving to her sister. Elizabeth is my hero too. This is the kind of person she is. This is what she is supposed to do. I’m not even that scared.”
PSC is a chronic disorder of the liver in which the bile ducts outside the liver (the extrahepatic bile ducts) and often the bile ducts inside the liver become inflamed, thickened (sclerotic), narrowed, and finally obstructed. This is a progressive process that can in time destroy the bile ducts.
Thirteen years ago after Emily gave birth to her son she had severe itching which created painful scabs. Her liver enzymes were evaluated and she was initially diagnosed with hepatitis. But after a visit to the Mayo Clinic, her diagnosis was changed to PSC. Her mother Kathy remembers these days vividly. “For me, this has been such a long journey. In the beginning, I was mamma bear and I wanted to fight for the whole thing,” said Kathy. “The first time she got sick, I was off the charts crazy. But then a calm came over me and I said, ‘I can’t control this.’”
The symptoms that Emily currently deals with are extreme fatigue, itching, and a reversed sleep cycle. Her two children are now 13 and 9 years of age. They struggle to understand why their mom is always tired. This transplant is necessary to give her children the childhood she feels they deserve. “I feel like I am living someone else’s life,” said Emily. “I have a lot of guilt associated with it [being tired around her children]. I have no energy to do anything. But if this operation is successful my children will see for the first time the energetic and joyful person that their mother was before PSC struck.”
Support Group
Emily relies heavily on a support group based in Colorado. She attends regular conferences and gets advice from experts. PSC Partners Seeking a Cure, headquartered in Englewood, Colo., is a volunteer organization that was formed in 2005 to provide PSC patients and their caregivers education and support and to raise funds to research the origins of and a cure for the disease.
Donor Alliance
While Emily will be receiving a live transplant from her sister most individuals with PSC must depend upon a liver from a cadaver. Sixty-seven percent of adult Coloradans have registered to be an organ and tissue donor which is a much higher percent than most states.
The registration process is through an organization called Donor Alliance, headquartered in Glendale, Colo. Donor Alliance is an organization that facilitates the donation and recovery of transplantable organs and tissues; the mission is to save lives through organ and tissue donation and transplantation. Every 10 minutes, another person is added to the waiting list.
After waiting on the list, Emily grew increasingly more frustrated. “I made myself inactive because I was scared. I had gotten sicker and sicker. I was in the hospital in early September with fluid buildup.” That fluid buildup became infected which made Emily’s disease more life threatening and Biz’s donation all the more vital.
As children growing up, Emily and Elizabeth, along with their sister Kate (who will be flying into Denver to be with her mom during the operation), were normal, everyday sisters. “Emily was the boss as the older child,” said Kathy Barrett. For example, she would have them pay her to go into her room.”
Now, Elizabeth has the ability to give her sister Emily the greatest payment anyone could ask for. “You get to give the most beautiful gift that anyone can give, which is the gift of life,” said Elizabeth.
For more information about organ and tissue donation, visit DonorAlliance.org. To register to be an organ and tissue donor, visit DonateLifeColorado.org or call 303-329-4747 for more information. For help or support, visit the PSC Partners website at www.pscpartners.org.