“At first, they didn’t know what it was,” says Karen Regan, 64, of Methuen, Massachusetts. “Yet my condition continued to deteriorate.”
The former human resources executive knew something was wrong when, in 2009, she noticed unusual swelling in her abdominal area. The diagnosis was cirrhosis, a late-stage scarring of the liver due to advanced disease. To treat her swelling, Regan would undergo a “tap” every two weeks, where up to nine liters of fluid were drained. Regan also experienced internal bleeding in her small intestines, eventually requiring daily blood transfusions, “because there was no way to stop the bleeding caused by the liver disease and the toxins backing up.” Those toxins also backed up in her brain, creating encephalopathy, which led to mental confusion, memory loss and personality changes. Three years after her initial diagnosis, Regan was admitted to the MGH in April 2012.
“I knew that eventually I would need a transplant, and as I felt worse, I knew that day was not far off,” says Regan, who lost 70 pounds due to the progression of the disease.
To determine eligibility for a liver transplant, patients are evaluated using the Model for End-Stage Liver Disease (MELD), which measures mortality risk in patients with end-stage liver disease. The larger the number, the higher the patient moves up on the transplant waiting list. Within two months, Regan’s score jumped from 16 – when she was admitted – to 45.
During her hospital stay, Regan says she was lucky to have her husband John by her side. “John was at MGH every morning at 5:30 to understand what the doctors decided during their daily rounds and was a huge support system for me.” While she was comforted by his constant companionship, Regan says she asked her care team for someone she could speak to who had been through the transplant process to provide a more personal perspective into what she was going to experience. No one could be identified. “I vowed right there that when I recovered, I would always make myself available to speak with patients facing transplantation.”
On June 7, 2012, Nahel Elias, MD, surgical director for the Kidney Transplantation program at MGH, successfully performed Regan’s liver transplant. After making a full recovery following several months of rehabilitation, Regan approached James Markmann, MD, PhD, chief of Liver Transplantation for the MGH Division of Transplantation, to follow through on her vow to help others facing transplant.
“Dr. Markmann was kind enough to meet with me and immediately understood exactly what I wanted do,” says Regan, who offered to serve as a valuable resource to pre- and post-transplant patients by sharing her own experiences with them.
“My first response was that this was a brilliant idea,” says Markmann. “This was just what our patients needed – a direct experience relayed from someone who has been through the whole transplant process.”
Once the pilot program was established, Regan had her first day of duties. “It was certainly nerve-wracking as there was no established process to interact with patients,” she says, “It was vital to first develop a strong rapport with the nursing team, who would approach patients and ask if they would find it helpful to speak with someone who had gone through the process. None of us knew if this would even work.”
Two years later, the program has blossomed and become an integral part of the MGH Transplant Division’s team approach. All transplant patients now have the option to speak with Regan, who shares her insights and helps them process the experience. Regan encourages each patient she meets to embrace the mantra which helped her through the transplant process: “Failure is not an option.”
“The program has been a success far exceeding anyone’s expectations,” says Markmann. “Today, there is a long line of post-transplant patients who have not only been inspired by Karen but who want to help further the project.”
Regan is grateful to give back to the MGH which, she says, gave her a second chance at life. “Going through a transplant can be one of the hardest things for anyone to experience. It’s stressful, scary and can feel isolating. If I can help alleviate even one fear, then I consider this program successful, because the best thing you can say to someone who is scared is ‘you are not alone.’ ”
Read more articles from the 08/10/18 Hotline issue.