In 2005, my life changed forever. My mom had just been diagnosed with hepatitis C and advised me to get tested. When my doctor told me I also had it, the room went dark, all my thoughts stopped, and I didn’t hear anything else being said.
I worried that I’d given my kids a deadly disease. The next day, I scheduled my family to be tested. Everyone’s results were negative, but this didn’t end my personal nightmare with the disease.
I was witnessing hepatitis C ravage through my mom’s body. A liver transplant would only buy her time. She ultimately chose not to undergo a dual organ transplant, and passed away on May 6, 2006.
My liver began to deteriorate quickly. I went from stage 1 to stage 4 in less than five years, which terrified me. I saw no hope.
After years of unsuccessful treatments and being unqualified for clinical trials, I was finally accepted for a clinical trial in early 2013 and began the treatment later that year.
My viral load started at 17 million. I went back for a blood draw in three days, and it had dropped to 725. At day 5, I was at 124, and in seven days, my viral load was undetected.
This trial drug had destroyed the very thing that killed my mother seven years earlier.
Today, I’ve maintained a sustained virologic response for four and a half years. But it’s been a long road.
An alarming lesson
After treatment, I had this visual in my mind that I’d no longer be in pain, I wouldn’t have brain fog anymore, and I’d have lots and lots of energy.
That came to a crashing halt in mid-2014 when I was almost rushed to the hospital with a bad case of hepatic encephalopathy (HE).
I had stopped taking my prescribed medication for brain fog and HE. I thought I no longer needed it since my hepatitis C infection was cured. I was gravely mistaken when I began to slip into an intense sluggish state where I could no longer speak.
My daughter immediately noticed and called a friend who advised to get lactulose down my throat as quickly as possible. Frightened and panicked, she followed the friend’s instructions, and I was able to somewhat come out of my stupor within a couple of minutes.
I manage my health like a tight ship, so for me, this was totally irresponsible. At my next liver appointment, I admitted to my team what had happened and I got the lecture of all lectures, and rightfully so.
For those coming off treatment, make sure you talk to your liver doctor before eliminating or adding anything to your regimen.
Work in progress
I had high hopes that I would feel amazing after being cured. But about six months after treatment, I actually felt worse than I did before and during treatment.
I was so tired and my muscles and joints hurt. I was nauseated most of the time. I was scared that my hepatitis C was back with a vengeance.
I called my liver nurse and she was very patient and calm with me on the phone. After all, I had personally witnessed several of my online friends experience relapses. But after getting my viral load tested, I was still undetected.
I was so relieved and immediately felt better. My nurse explained that these medications can remain in our bodies anywhere from six months to a year. Once I heard that, I decided I’d do everything in my power to build my body back up.
I had just fought the battle of all battles and I owed it to my body. It was time to regain muscle tone, focus on nutrition, and rest.
I signed up at a local gym and took on a personal trainer to help me do this the proper way so I wouldn’t harm myself. After years of not being able to open jars or container lids, struggling to get back up on my own after crouching down to the floor, and needing to rest after walking far, I was finally able to function again.
My strength returned slowly, my stamina was getting stronger, and I was no longer having bad nerve and joint pain.
Today, I’m still a work in progress. I challenge myself each day to be better than the day before. I’m back to working full-time, and I’m able to function as close to normal as I can with my stage 4 liver.
Take care of yourself
One thing I always tell people who contact me is that nobody’s hepatitis C journey is the same. We may have the same symptoms, but how our bodies respond to treatments is unique.
Don’t hide in shame about having hepatitis C. It doesn’t matter how you contracted it. What matters is that we get tested and treated.
Share your story because you never know who else is fighting the same battle. Knowing one person who has been cured can help lead another person to that point. Hepatitis C is no longer a death sentence, and we all deserve a cure.
Take pictures of the first and last day of treatment because you’ll want to remember the day in the years to come. If you join a private support group online, don’t take everything you read to heart. Just because one person had a horrible experience with treatment or during a biopsy doesn’t mean you will too.
Educate yourself and know the facts, but certainly go into your journey with an open mind. Don’t expect to feel a certain way. What you feed your mind daily is what your body will feel.
It’s so important to start taking care of you. You are important and there is help out there for you.
Stay positive, stay focused, and most of all, give yourself permission to rest and let the treatment and your body fight the fight of all fights. When one door closes on your treatment, knock on the next. Don’t settle for the word no. Fight for your cure!
Kimberly Morgan Bossley is president of The Bonnie Morgan Foundation for HCV, an organization she created in memory of her late mother. Kimberly is a hepatitis C survivor, advocate, speaker, life coach for people living with hep C and caregivers, blogger, business owner, and mom of two amazing kids.