Before I got sick, I worked full time; I was the territory manager for Weight Watchers for the state of Rhode Island. I was always on the road for work. I took care of my grandson and had a busy social life with my children, husband, and friends. All of that changed for me in 2013 when my Primary Care Physician ran some routine blood work. Later that night, she called me indicating something was wrong and sent me for additional testing the next day. With confirmatory blood work, I was referred to a specialist. It was then I was told why I had been feeling so poorly lately: NASH, or Nonalcoholic Steatohepatitis.
There were no medicines I could take, clinical trials would not be a reality for many years, and, I was informed, transplant would be likely but further down the road—5-10 years down the road. When I was diagnosed, my liver was already compromised, so I was sent to Lahey Hospital and Medical Center in Massachusetts to be evaluated. When we started going to Lahey, it was very scary. I looked around the waiting room and saw all these really sick looking people and knew that was where I was heading. It was a lot to take in. My disease progressed much faster than anyone expected. This time in my life was very chaotic and everything seemed to happen so quickly. I went from running a whole territory to not being able to clean my own house. I had always been the doer, and now I needed help daily.
It felt like it went from 5 to 10 years to “you don’t have any time left.” Suddenly, I was in and out of the hospital, undergoing procedures multiple times a week. Thankfully, my family and friends were incredibly supportive: making meals, care for my grandson, drivers to the hospital, and so much more. I don’t know what we would have done without all the help we received.
As 2014 arrived, I was having severe symptoms which greatly compromised my health but did nothing to elevate my status on the transplant list. We were told I would not live long enough to get a liver from the list and my only chance would be to receive a live donation. Family and friends came out in droves to be tested. Neither my husband nor children matched. My caregivers at Lahey told us the number of people that came out to be tested was “impressive.” I am so lucky to have so many people care for me.
On January 20, 2015 while eating dinner I stopped breathing and slumped over. The next thing I remember was waking up, confused why my husband was yelling at me to breath and why the rescue team was standing over me. I was admitted to Rhode Island Hospital where I stayed until being transferred to Lahey on February 4.
It was during this lengthy hospital stay we found out that my 18-year-old nephew was a match. I felt horrible that he was going to have to go through so many tests, a massive surgery and take a leave of absence from college. He is one amazing young man. Just before I was transferred to Lahey, we were informed Adam would be unable to donate due to his own health and the surgery was cancelled. While this time is very fuzzy for me, I do remember waking up to my brother and husband crying in the doorway of my hospital room when they learned Adam would not be able to donate his liver to me. Everyone knew I didn’t have much time left. My sister-in-law, Lynn, was the next best option so we hoped she would be able to donate.
But, on February 6, 2015, we received a phone call that they had found a liver for me and, within hours, I was in surgery. You may recall January and February 2015 resulted in the highest snowfall records in Massachusetts, ever. The night I went into surgery was a snowy one, resulting in a struggle for my family to get to me: my son was at home with his pregnant wife, I sent my daughter and grandson home as the weather worsened. When I went into surgery, my poor husband was all alone. He was alone when they told me it didn’t look good and I had been given last rights. He contacted everyone he could to ask them for prayer. Thankfully, I pulled through. I pulled through so well that a few months later in May 2015, I attended my first ever Liver Life Walk Rhode Island.
It still amazes me how so many people were willing to help me, without concern about how much they would be giving up, a piece of themselves and putting their lives on hold. When I think of what my family and friends went through it still amazes me. I do recall how everyone kept saying how strong I was; honestly, I was terrified the entire time. Any strength I had was given to me from my husband, children, friends, and the doctors and nurses. I would not be here without their support, while it would have been easy to just give up, I couldn’t do that to all my supporters.
I now have four beautiful grandchildren and it is a blessing to be a part of their daily lives.