Learning that I Have Hepatitis C and Cirrhosis
I often wonder what it was like for you when you found out that you had Hepatitis C. This weekend, I got in the closet and got out “that box” containing my original hospital records. They were buried deep in a plastic tub. My reaction to those pieces of paper is much like the way I respond to spiders. Just seeing them and handling them gave my hands a shaking feeling. I was squatted in the floor and my legs felt like rubber. I wobbled a bit and then shoved them back in the yellow manila folders. I came right to this keyboard. Somehow, I always think of you when I have a strong reaction to anything Hepatitis C related. Let’s explore what happened that day we were diagnosed.. and how it has changed us.
Each of you has a story like mine. The day you found out. I am sure that the reaction was much the same. That gut wrenching feeling in your stomach does not go away. I remember having so much mental anxiety at first, but within hours, it began to transform into something else. My thoughts really did travel over my life clear back to my childhood. I saw Karen through the years. And I saw her future. So this is how I would die. A sadness swept over me. I learned to accept the hard truth.
My first response was to comfort my family and friends. I looked my now grown up baby girl in the face and knew that she would not have a mother to guide her for much longer. She seemed so young. Too young, and I knew that there was so much that I had not told her. She laughed and joked as visitors came in my room. When we were alone, she grew quiet and climbed in the hospital bed and curled up into my shoulder. We had argued the week before. I can’t remember why. I learned that love is all that matters.
I took a tight circle of people into my confidence and made them promise to share in my daughter’s life. I began to write furiously. I filled page after page in journals for her to read. I had a strong desire to be known. Would all of me die so soon and nothing remain? Words may describe me, but was there any way that they would capture the essence of my spirit? I learned about leaving a legacy.
I picture you again now. Sitting in a clinic or hospital room. You heard the news. Panic registered and then your thoughts turned toward your loved ones. What would they say about your diagnosis? If your liver did not have too much damage, you may have quickly assessed all the options as the doctor told you about them. What was going through your mind, I wonder. Did you go home and press your babies to your shoulder? Did you make passionate love to your spouse? Maybe you ran to the arms of a stranger in order to just feel alive for a little while. Maybe you hugged the sorrow to yourself, feeling the ache of lonliess. I learned that there is no right or wrong reaction.
Eventually the day grew silent and you crawled between the sheets. Alone with your thoughts. Picturing your blood pulsing through your body with a deadly virus. The liver that you never even thought about before was now seen as a pitiful poor half circle of disease. I am sure that even though your mind was worn out with thinking, fresh thoughts came at a rapid fire pace. They touched on each detail of your life. Your family, friends, and finances. Your job or education. I learned that sickness is a private thing.
I am certain that you began to filter the thoughts as you fell into a fitful sleep. Waking up and remembering, you felt as though a fire alarm was going off in your house. You knew there was an emergency. Yet there was nowhere to run. I learned that panic can strike even the strongest person.
Did you think about the childhood promises? My friend Cindy and I were going to live in New York City and have an apartment on the top floor. We were going to the Macy’s Thanksgiving Parade and buy all of our clothes at fancy stores. I lay in bed that first night and thought about New York City. I learned to chase every dream, even the ones I had abandoned.
I had wanted to be a mom more than anything. Sometimes it seems I was too young to enjoy it. Grandkids were the solution to that problem. I enjoyed every single minute of their lives. I was not responsible for their day to day raising, so I could just play and be Nan. I did all the things that my grandmother did for me, and more. I was not through being Nan yet. The thought of them crying for me was more than I could bear. I learned that the little people in our lives are one of our greatest rewards.
Like you, I began the learning process of living with Hepatitis C. It has changed me forever.
I have learned –
To be more grateful.
To celebrate small victories.
To have more determination.
Change is possible. Even hard changes.
There are no limits on what I can do.
That a strong love and deep bonds can be formed between people on the internet.
To slow down .
To focus on what is important.
That my faith is strong.
That no matter what the doctor says, I have some control over my own healing.
To set boundaries.
That doctors and their staff really care.
August 13, 2010. Three years have passed since Learning that I Have Hepatitis C and Cirrhosis. I am a different person now in so many ways. Hepatitis C and Cirrhosis have given me some hard lessons in life. I am determined to take the lessons that came with my diagnosis and use them to make my life better.
Learning is something we do every day. It is during the hard times that we grow the most. It is by remembering the simple things in life that we can live what we have learned.
I still struggle with hard lessons every day. But that is what helps us grow – the continued struggle. I know that we are in the school of life with Hepatitis C and Cirrhosis together. I learn and gain strength by sharing in your stories. I am proud of what we have learned from our ongoing health crisis.
I beat Hepatitis C, but have End Stage Cirrhosis. I am still alive. Just ran another 5K. I am embracing every moment, xoxo Karen:)
What have you learned about yourself since you found out that you have Hepatitis C or Cirrhosis?
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Learning that I Have Hepatitis C and Cirrhosis has changed me. Best Friends guide blog is about drugs, side effects, and treatment. It is also about the rest of your life.
10 thoughts on “Learning that I Have Hepatitis C and Cirrhosis”
I was in shock when the VA doc told me…called me at home even…wow…then came the search for the cure only to find out the rest of the horror of Interferon. Doc put me on ‘hold’ til new meds come out…that date is now the most important date in my calendar. It’s been three years now…at age 64, waiting puts a whole new spin on things. Hurry up already FDA.Gilead!!!
Michael – So you’re in the hep c “warehouse” waiting for drugs. It’s looking good for December of this year! Interferon was a hot mess, but some of us had to go that route. I’m happy that your liver is in good enough shape to hold out! There are a lot fewer side effects for sure! xo my friend, Karen:)
I’m one month post actual DX and about 3 months post initial “inklings” of something wrong.
Though I was born disabled and have been through much, including 12 surgeries, a divorce and two other failed relationships. This has been my toughest challenge to face. I’ve been told that I am brave and strong. Inspirational and courageous. I felt none of that for months. I just wanted to find a cave and hide.
First it was slightly elevated AST and ALT. Then it was more blood work. Then a trip to meet my GI. Each trip made me more nervous and anxious. It wasn’t until we had a diagnosis and a viral load that I began to sort of sleep again. It took weeks for me to wake up and not have my 1st thought be “I have Hep C”. I finally started waking up without the ice ball in my stomach. I was in a fog..
But then reality creeped in. Who do I tell? How do I tell? Do I tell? Will they be afraid of me? How is this going to change my life?
I heard/read about the nasty interferon. I’d do just about anything to avoid it. No, make that ANYTHING!
I joined a support group online and have been told based on my viral load and AST/ ALT levels to “warehouse” myself until the new drugs come. Will my Dr. work with me?
But will the drugs actually come soon enough? Am I doing damage by not treating now? I read reports that the drugs are coming soon. What is soon? I read that companies are fighting over them and it may be years! Do I have years to wait to treat?
We don’t even have a genome yet. So will these drugs work for me?
Will my insurance pay for them and if not what do I do then? Even if they do what is my co-pay going to be like. Will it be like my other medications so much for generic, so much for brand name? Or will it be 20% of the cost?
My Dr. office has been trying (I keep leaving messages) to get permission from my insurance to have a blood test to see how much liver damage I have (if any) – it’s been 3 weeks now. But now I read about a Fibroscan, (a simple ultrasound!) – as opposed to the dreaded biopsy.
So many questions. Still so many unanswered.
Sorry if I rambled.
So far I’ve told my parents and a select group of friends and my fiance. He’s been there with me for every Dr. appt, every blood draw, everything. He’s a prince.
We have not told his 3 children nor his ex. She is a pure and total germ-a-phobe. (mysophobe) Which is why my name is just J. I don’t know if she could find this by Googling my name or not.
So my journey begins. I have a friend who has lived with Hep C for more than 10 years. It gives me hope!
Thanks for giving me a place to write. XO
Thank you and Welcome to a new bff! First let me compliment you on your writing. I can totally identify with so much of what you said, and so can many others.
The questions.. Yeah. And there are good answers for many of them, but some you just have to find out as you go.
One of the reasons I haven’t written about insurance is that so much changed even during my treatment. I want to reassure you that those bills can be paid. Get rid of the virus first. Pay bills when you can.
If your doctor is going by your enzymes and general health, then you must be in good enough shape to wait. And it sounds like their office is a big help with insurance also. I promise you, others have gone through the same “hurry up and wait” game. It doesn’t hurt to call and ask what the status is.
You are like me, you have months of waiting. This is a great time to read and get ready for treatment! You are wise to be learning as much as you can and by finding a support network who will stand by you. Yay fiance…
BTW – about the ex – no one has access to your personal information. I get that you need to be private. You have nothing to be ashamed of (read that blog yet?) But you don’t need someone questioning you, so you are wise to keep mum about it. You have enough going on already.
Will you promise me not to get lost in cyber space? I want to know how everything turns out for you. I will hold your story in my heart and be thinking of you when I get on the site.
Finally, my story may seem a little depressing to some. I tell it because if I can make it, I think anyone can. If you have specific questions after you read a blog, shoot it to me or go the the HCV Questions and Answers forum on facebook. I am ihelpckaren. Or email me personally. This is your site too. You can write anytime. I know you have encouraged others who are waiting. xoxoxo Chatty Karen:)
Hi Karen,
Well, I marvel at your courage and confidence 🙂
Even though it’s been a few years since you came to know that you have Have Hepatitis C and Cirrhosis – it doesn’t seem like it at all, or perhaps from your motivating talks one really can’t make out. Isn’t there a cure for Cirrhosis too? I’m sure there would be, and I hope you get through it too.
Yes, to be alive is a blessing and to live each passing moment is what we all need to do in our life.
Thanks for sharing. Have a nice week ahead 🙂
Harleena – There is not a cure for cirrhosis. BUT there is new evidence of reversing the fibrosis that bands around the liver.
That is what we are all counting on: eating healthy to reverse fibrosis.
Thanks for the compliment. I think a lot of us hear the “you don’t look sick” from friends and family. That’s why support is great. No one knows what we face.
You’ve helped me so much with your blogs on personal growth issues. You remind me that there is life outside of my diagnosis and that taking care of my heart and mind is just as important as taking care of my body.
I hope your weekend is awesome too! 🙂
Love your website. Maybe cause we are baby boomers it all is liver candy.
Hi Anne – Thanks for coming by. I hope you found some information that was helpful to you.
You made me lol. Baby boomers have a place in history that really sets us apart. Our music, clothes, books, and family life are alike no matter where we grew up! Maybe that’s why it is easy for us to connect at this stage of life while battling health problems.
We’re a tough, yet tender bunch.
Stay in touch and lemmeno if you need anything. xo Karen:)
The doctor just called me said I have srrosis of the liver (i never drank alcohol ) also I have emphysema and pneumonia. I’m like whatever I can heal this. Reading your blogs has helped me now I have to find what stage I’m in and go from there thanks everyone life is too short to worry about stuff like this
Welcome to the club. So sorry to hear that you’ve joined us, but you’re RIGHT it is not the end of the world. We can move on and liver our best life. It’s really about making a choice to live each day to the fullest! By making healthy choices, you can live to see many more days dear one.
Thanks for stopping by,
xoxo Karen
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