Picture: Terry Cunningham, MAOM, Board President of the Liver Coalition of San Diego and Catherine Frenette, MD, Chair of LCSD’s Medical Advisory Council
Liver Coalition of San Diego
We are a local organization formed by medical specialists, transplant surgeons, patients, and caregivers to promote liver health and meet the needs of those affected by liver disease in San Diego County.
All funds raised stay in San Diego to support community-based educational programs and services.
Ambassador Thomas Krumenacker
Tom’s Story: Hepatic Encephalopathy
Congenital Hepatic Fibrosis
I was born with Congenital Hepatic Fibrosis that was discovered when I was in grade school. It was originally diagnosed as PKD but later in life while in college when I was hospitalized by a number of bouts of internal bleeding due to esophageal varices they figured out what was really going on.
Years later, at the age of 35 having started a family and building a successful career I began having problems with my encephalopathy. The issue progressed a rapidly forcing me to put my business on hold, robbing me of my ability function as a father and husband. With low MELD scores I was on the transplant list over twelve years but at this time I began looking for other options when my former sister in law Heather stepped up and offered to give me half of her liver. We laughed at first thinking that the odds of a match were far too great as I am O-blood type and she didn’t even know what type of blood she had. Sure enough she was a perfect match, but we weren’t done. After rigorous testing the Physician in charge of my care told me that I had gotten too sick to put Heather’s life at risk and sent me home to put my affairs in order. I was not about to give up, and found another hospital that did the transplant seven months later.
Three months and eleven days after my surgery all three surgeons met me at the finish line of the America’s Finest City Half Marathon. One year after surgery Heather and I ran the Rock and Roll Marathon with matching jerseys saying. One Liver Two Runners.
I understand that my experience is not like that of others and I believe that I am truly blessed, I do not take this gift for granted and use it to find strength on the worst of days and appreciation for the good guys. The days that live in the middle are approached with a smile and excitement for what is to come next.
I am proud to serve as an Ambassador on the Board of Directors of the Liver Coalition of San Diego.
Ambassador Laura Andrew
Laura’s Story: Fatty Liver Disease
In 2009 I went to the doctor’s office for a routine physical exam. As part of the physical, my doctor ordered labs. I went through the normal physical exam routine and scheduled my follow-up visit for my results. While waiting for my follow-up visit, I received a call from my doctor that my lab work had shown that one of my labs show abnormal results related to my liver function and scheduled me for an ultrasound and more tests. After all the results were in, I went to see my doctor, and during the visit, he explained to me that my ultrasound showed spots in my liver. That is when I received the diagnosis of a fatty liver disease medically known as Steatohepatitis. My provider explained to me that the spots were a result of my obesity. He also explained the different possible outcomes if I didn’t change to a healthier lifestyle. I think the biggest impact was when I heard that it could lead to liver cancer.
After my diagnose, I did what the rest of the world would do. I googled it. That’s when I realized that I did not know much about the liver and its importance. Nor did I know how it contributes to my well-being. I also realized that the resources are limited, including available treatments for my diagnosis. The one common denominator mentioned on the web to prevent more damage was incorporating a healthier lifestyle and weight loss.
Learning this was a turning point in my life; I made a commitment to myself and my family to eat healthier, exercise, lose weight, and practice more self-care. Within a month, I joined a gym, hired a personal trainer, and went to nutrition classes offered by my healthcare provider. I am happy to share with you that at my 6-month follow-up visit to the doctor, I had lost about 40 pounds. Since then, I have lost a total of 65 pounds, and most importantly, my health has improved in every area. The awareness that came through my experience led me to participate in research studies to ensure that Latinos are represented specially because I know that our culture has a very intimate relationship with food. Our families revolve around food and use food as an expression of love, joy, and kindness. I know how hard it is to break that food habit, but I also know how much we lack knowledge in this area and how it directly affects our community.
My experience and the knowledge that I gained from my liver disease make being an Ambassador on the Board of Directors of the Liver Coalition of San Diego a great honor.
Providing community-based educational programs and services in a manner that underscores our values of Integrity, Leadership, Commitment, Compassion, Communication, and Excellence.
Each webinar is intended for different audiences: Patients and Caregivers (or); Allied Medical Professionals. But all are welcome.