Celebrating One Year Post Hepatitis C Treatment

Celebrating One Year Post Hepatitis C Treatment

My journal entry: “May 1 – Hepatitis C treatment ended”. This day will always be remembered as the day I almost lost my life – and the day my life began. I love duality. Like sweet and sour, light and dark, laughing till I cry. When the Food and Drug Administration finally released the protease inhibitor Telaprevir, I was both thrilled and frightened that my transplant doctor allowed me to treat for HCV. A sense of dread mixed with excitement filled my mind. The duality of my thought life was insane. My nightmares invaded my waking thoughts.

By this time last year, I had completed 43 weeks of treatment. I felt and looked like the living dead. With 5 Interferon shots to go, May 1^st is the day that my life hung in the balance. My daughter washed my back and noticed that my ascites was building up in my abdomen again. Treatment is hard with End Stage Liver Disease. That night I settled into that nice little indentation on the couch where I dozed when illness interrupted my SVR dreams. When the vomiting began, I rolled to the floor and curled up in a yoga child’s pose and texted “Help” to my daughter. I remember hearing her voice as though from a great distance. She kept tucking sheets and blankets under my face while pulling my wisps of hair like she was trying to make a pony tail. I told her that we needed to go to ER. More blood poured a warm crimson onto the sheets and white carpet. “I love you” and “I’m at peace” my gargling voice said. The EMSA workers woke me up. My clothes, bedding, and the floor were all red with some dark brown coffee ground looking stuff sprinkled like polka dots. I was a sleepy rag doll in their arms. They kept talking and asking questions so energetically and forcefully. They were loud and cheerful. I tried to answer them just as cheerfully. I could not remember what to say.

My daughter told them that the records at a local hospital told my story of treatment and medications. I wish I could fill in here, but I do not have any recall. When I woke up again, I was in ICU with blood and platelets being transfused. I had received my first varices banding. My Hepatitis C treatment was discontinued.

I ended up with a total of 4 pints of blood and 3 bags of platelets. When Dr. Wright’s nurse Terry at OUmedicine called, she was everything an angel could be: reassuring, firm, positive, and grateful. I was too tired to care about treatment at that point. If you have been through the long haul, you know exactly what life is like past week 24. I had gone through hell and had the burn marks to prove it.

My body immediately gained strength. My mind was like a kaleidoscope of discovery. I felt joy on a whole new level.  I wondered if the blood was infused with peace because my mental and emotional state was like that of a 5 year old. My students and fellow teachers now knew that I had been a lot sicker than I had let on. But I was smiling and actually had energy for the first time in weeks. I remember bump dancing with a fellow teacher after school that first day. I was alive. Everything in me was happy.

More duality permeated the summer. My garden was a healing place as I watched nature unfold, but the drought turned Oklahoma into what resembled a photo I had seen of the Dust Bowl days. My exercise and yoga were limited to short workouts and slow walks. My body and brain would recover from a varices banding within a few weeks, only to get another one. Yet with every day, my hopes became my reality. I continued to have a Sustained Viral Response. No trace of the Hepatitis C Virus was there.

As my hands write these words, I wonder how many of you have feared or experienced a bleedout, termination of treatment, or complete physical disability.  Have you ever sat on the porch and been afraid to walk because of weakness?  Many of you have. I know you have experienced the bitter sweet mixture of joy that comes with being alive enough to feel anything at all.

May 1^st will forever be stamped on my mind. It is when the thing I feared the most came upon me, yet by grace I lived to tell the story to you. Writing it down has given me perspective.

My life is still lived in two worlds.

A world where the ego’s will to live surrenders to the inner spirit’s desire for eternity.

A world where life and death can look into each other’s eyes with peace.

A world where desperation and hope form a single strand.

A world where gratitude and grief can hold hands.

With gratitude for this day, and love to all of my friends who struggle in so many ways, I am overflowing with joy to be alive and well, Your Best Friend in the Battle with Hepatitis C or Cirrhosis, Karen:)

Celebrating One Year Post Hepatitis C Treatment with a Sustained Viral Response, I have the bleeding varices and Cirrhosis under control.

How did you celebrate your SVR? Do you have any side effects that continue?