Notes From a Survivor of Old Treatment Regimes

We have come so far in the treatment outcome, length of treatment, and medication tolerance of Hep C.

After two failed treatment episodes with Interferon and Ribavarin in 2005 and 2007 (18 months total) and complete treatment compliance, there were no more treatment options for me. I had been diagnosed with cirrhosis several years earlier. This is a letter to family and friends after my first treatment. I thought I had been cleared of the virus.

Dear friends and family

On February 3, 2005, I had my last treatment, and I cried with relief and joy that I had run the distance. What a difference over a year can make. I was looking at a possible liver transplant. I have cried a lifetime of tears this past year. I have experienced a more profound sense of humility, grace, and faith. I prayed for my life and felt like I wanted to die all at the same time.

Ed (my husband) has reached sainthood, sharing my most desperate moments and being a rock. My hair is so thin that I have to move it around to cover the sparseness--kind of like cut and paste. I have blisters, bumps, bruises, and rashes, and my skin (one of my assets) feels like old leather.

I have knitted nearly twenty scarves and counting; it was my savior during shot days. It was a way to let you all know how much I appreciate you. I swore off treatment every week and did not think I could go on, but I did with your prayers, hope, and shared guts. Your phone calls week after week, day after day gave me the encouragement to go on.

Your concerned expressions of love and cards are the very thing that would make or break a day for me. Each of you went the extra mile to let me know I mattered. A very humble thank you to all of you. I will know in another six months if I’ve beaten this thing, if I remain clear of the virus.

I’m back.

Love, Deb

Six months later

Unfortunately, at my next lab test, the virus was back. I was positive with a significant viral load. I was so devastated that I went numb. It seemed so unfair to put so much into treatment and then it fails. During my first treatment, I cleared the virus quickly and remained that way until treatment completion. But it had returned as soon as I completed treatment, most likely.

On my second treatment in 2007, I had a breakthrough of the virus. I was almost a year into treatment and near completion. I picked up my labs on Monday, September 17, looked at the lab printout, and thought it was a mistake. It showed the virus was back and I had a positive viral load even though the month before it was completely undetectable.

My journal entry on September 20, 2007, brought big tears.

Dear Diary

I left a message with the nurse concerned about my blood count, not really realizing that I was in denial and disbelief. By mid-week, I had a sinking feeling. I realized I initially responded to treatment for almost a year, but it had come back as confirmed by the Stanford Liver Clinic. I will be getting another test Monday, but I know that piece of paper is sealing my fate, so to speak.

I have not felt okay for a few weeks, and my heart has been feeling sad knowing something has changed. I have cried all day off and on. My friend and I held hands and prayed and cried, but I was at work and had to stay in my office. My son had called a few times, and I tried to muster up the courage to call him back but cried even when I tried to hold it together. He was able to talk with me through some of my heartbreak.

I am completely devastated. I was sure that if I had done everything right it would work out this time. I will take another shot tonight and see the doctor next Saturday, September 29th. If it is confirmed again next week that I test positive, the doctor will terminate the remainder of treatment as it’s a breakthrough. Alternatives are not good and I’m not going to take this bad boy stuff again. I only had a 50/50 chance if that. I know I will get through this I went to church by myself last Sunday I prayed and prayed and prayed and prayed more. A friend offered me part of her liver for a liver resection. The joke was she wants to convert me to Catholicism and having a piece of her liver will seal the deal. Surrender is a difficult thing, but it is what it is.
It was confirmed by the lab that it was back with all of its vengeance. I’m so tired, but not hopeless at this moment anyway. I cry every day when someone asks. I cry because I feel like a failure, like I did something wrong. I love those close to me, but they don't have a clue day in and day out how hard this has been. I am grateful I am not “shot” sick today, but so sad it did not work again. I have heard, be strong. That is the most unsupportive thing you can tell someone who just lost their battle to a chronic disease. I am strong. Walk in my shoes for a minute. I will move into acceptance. It will take some time. I will focus on the treasures in life to the best of my ability. Some of those treasures are still hidden. May I live long enough to experience and see them. My husband and soulmate how would I ever go on or make it without you. Today, I don’t have to even think about it. I love you so.

Finally cured

I had to wait seven more years to be treated again. The disease continued to progress. In 2014, I was cured of Hep C with Sovaldi and Ribavirin 12-week treatment regime. The RIBA was still difficult but getting through three months vs 12 months was a deal breaker . As well as no Interferon injections and subsequent side effects. Hope was always right around the corner grateful and humble.