Before I begin my story, I’d like to thank the American Liver Foundation for the honor of naming me Liver Life Walk Champion for 2017. The American Liver Foundation is important to me, not only because of the education and support they provide to patients or their dedication to liver research, but for me, personally, I have had the opportunity to give back. By telling my story to others, I am consistently reminded how fortunate I am. My story is a long one, spanning decades, but I am happy to say, as of September 2015, I am finally Hepatitis C free with 100% liver function!
In 1999, I went to my doctor for my annual physical and my blood work showed elevated liver enzymes. Concerned, my doctor sent me for additional testing. It was then I was told I had Hepatitis C. Initially, I thought “impossible;” I felt fine, I wasn’t sick.
The previous year, in April, I lost my husband to liver failure due to Hepatitis C. When he was diagnosed, my husband felt perfectly healthy, running 3 successive marathons, so he chose to refuse treatment. In the early 90s, the treatment for Hepatitis C was extremely toxic and had about a 30-40% success rate. In 1998, though he continued to work, his liver function rapidly declined; he was admitted to the hospital and subsequently passed away.
Prior to my husband passing, I was told I was fine. After the fact, I realized I was never actually tested for Hepatitis C but rather my liver function tests were normal and, thus, it was assumed I did not have the virus. After I received my official diagnosis in 1999, I was sent for a liver biopsy where it was estimated that I had been living with the virus for approximately 25 years. My thoughts immediately went to my daughter; she had just graduated from college, lost her father, and there was a strong likelihood that I had the virus while pregnant with her. I was aware there was only a small chance she would have contracted the virus from me, I needed to tell her immediately and have her tested. Thankfully, she was negative.
In the years following my diagnosis, I was treated twice with interferon and ribavirin, enduring chemo-like side effects, but each time was unsuccessful. In 2008, approximately ten years after my initial diagnosis, my liver functions declined drastically and I was listed for a liver transplant. For two years, I remained on the transplant list locally at Lahey Clinic. With no hope on the horizon and my liver continuing to decline, my doctor suggested I begin to look outside New England for my new liver, fearing I would not receive a transplant in time if I stayed.
Organs for transplant are distributed by region and in New England the supply does not meet the demand, resulting in an inordinately long wait time. However, other regions have more organ availability and, in May of 2010, I left for Indiana University Hospital in Indianapolis. While in Indiana, I finally received my transplant on October 11, 2011.
Just before I left for Indianapolis, my daughter announced she was pregnant with my first grandchild. While I didn’t make it home for his birth, he remained my inspiration. Every day after his birth, I received a video with a note, “I love you Grammy.” After my transplant, I was transferred to a rehab in Indianapolis for a short while, where my daughter, son-in-law, and grandson came to visit me. It was then they announced I was going to have another grandchild. I was thrilled I would be back home and feeling great for his birth.
I wish I could say my story ended there. But, about a year and half after my transplant, I started experiencing the signs and symptoms of liver failure once more. While I had received a new liver, I had not been cured of the Hepatitis C virus, which began to attack my new liver more aggressively. Throughout the summer, my doctors tried to manage my ever increasing symptoms, but without getting rid of the Hepatitis C, I would continue to decline.
In August 2013, while enjoying a long-weekend in Maine with friends, I slipped into a coma and was transported via helicopter to Lahey. I was admitted to the Intensive Care Unit with less than 10% function of my liver and kidneys. Often, when someone experiences liver failure, it puts undue stress on the kidneys, resulting in simultaneous kidney failure. While things looked grim, the amazing Liver Team at Lahey didn’t give up on me.
There was a clinical trial underway that was examining a new medication that was hoped to be effective in curing the Hepatitis C virus. What I really needed was a new liver and kidney but without getting rid of the virus I was not a candidate. I was enrolled in the clinical trial and given the new medication in conjunction with interferon and ribavirin. I remained in the hospital, very sick, but hopeful this new course of treatment would work.
Finally, in January 2014, I finished treatment and was declared Hepatitis C free; I would not be considered cured and eligible for transplant until I remained Hepatitis C free for three months. Still struggling with a declining liver, I was sent to a rehab in February to await a new liver.
That is when the unimaginable happened! Once I was cleared again of the Hepatitis C, both my liver and kidney began to regain function. I was told I would not need a second transplant. Just a few short weeks later, I was discharged from rehab, and went to stay with my incredible daughter and her family. Gradually, surrounded by my loving family, my health improved.
I have so many to thank for their care and support during this time: my daughter, her husband, my sister, and all my friends and family. From the time my health began to decline, my daughter had been my caretaker. When I was in Indiana, she visited me and coordinated my family and friends to form an unbeatable care team. My amazing daughter managed to work a full-time job and care for two young children while still visiting me daily at Lahey. Anyone who has cared for someone with liver failure can speak to how difficult this experience can be. I know I was not the easiest patient but I am thankful to her for all she did for me.
Today, I treasure every moment and enjoy spending time with my grandsons. I regularly volunteer with the ALF in their outreach which provides me the opportunity of letting the world understand the importance of getting tested, recognizing risk factors, and understanding that Hepatitis C is now 99% curable. When thanking my son-in-law for all his support, he said to me, “Just to see how far [I] had come, made it all worthwhile.” My message to everyone challenged with heath issues, “Don’t give up. Life is worth fighting for!”
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