Aided by his family, Dickinson also started a blog to serve as a journal of his experiences and his research into the world of organ transplantation. He says, “I put my blog up not only as a place for my family and friends to get updates on my condition, but also to help the next transplant patient coming down the line. Every month I get at least one or two new people who reach out to me through the blog for information and encouragement.”
As his wait stretched from weeks to months, then to well over a year, Dickinson continued to receive care at Northwestern Memorial Hospital, including a medical treatment called Y90 that checked the spread of his liver cancer. However, since his liver was damaged, he remained on the UNOS list. He was called into the hospital and prepped for transplant surgery on several occasions, but each time the transplant had to be cancelled at the last minute for reasons such as the condition of the transplant organ. Finally, in March 2011, Dickinson received a call that he described on his blog:
“I remember vividly when Katie, my transplant coordinator called me…I had been prepped for surgery on three other occasions only to find the liver was not usable. This time I knew was different.”
Nancy Dickinson says, “Dan’s recovery from the surgery was remarkable. We went from thinking that his illness was the worst thing that could happen to us to thinking that we no longer had major reason for concern. The nurses at the clinic were wonderful—we wanted to adopt every one of them.”
Dickinson’s daughter Laurie says, “We felt a huge sense of relief after surgery. We also realized that it would have been helpful for us to have known more of the details of home care from families who had been through this experience themselves.”
Dickinson himself says simply, “Prior to the transplant, so much of my time was spent on preparation and gathering information. After the surgery, it was all about overwhelming gratitude.”
As he recovered from the transplant and started to resume his daily activities, Dickinson began to participate in a Northwestern Medicine clinical study that seeks to determine how and when to lower patients’ dosages of anti-rejection medication after transplant. He also was asked to serve as a founding member and the chairman of the new Transplant Advisory Council*, which is part of the Philanthropic Ambassador Network of Northwestern Medicine. Along with his daughter Laurie and a number of other transplant recipients, they are creating an organization that is dedicated to raising funds to support research and patient care at the CTC. As Laurie says, “We were served by the CTC, and now it’s time for us to give back.”
As the Transplant Advisory Council grows, they plan to expand their mission to include an alumni group which will be open to the thousands of patients who have received transplants at Northwestern Memorial. The group also has begun to work with Northwestern Memorial’s pre-transplant patients to provide encouragement and support. Nancy says, “Sadness and a feeling of being overwhelmed during this process are normal. We want other patients to know that life can begin again.”
The Dickinson family’s gratitude extends to the donor who gave Dan another chance at life. “The liver donor gave this gift to all of us, not just to Dan,” says Nancy. “There are no words to express how grateful we are.”
Click here to donate to the Comprehensive Transplant Center. You also can learn more about the Transplant Advisory Council’s mission at their website.
*Northwestern Memorial HealthCare (“NMHC”), nor any of its clinical affiliates, shall be responsible for any improper or incorrect use or disclosure of the personal information described and/or contained herein and assumes no responsibility for the security of this website. As an individual “Requesting a post-transplant buddy,” you assume full responsibility for entering information at this website, and you understand and agree that NMHC is neither responsible nor liable for any claim, loss, or damage resulting from any improper or incorrect use or disclosure of your information.