My daughter – She’s my sweetheart. It is hard to be a mother with Hepatitis C. It’s hard to be a child whose parent has Hep C. My daughter came over one day about five weeks into my triple therapy treatment with end stage cirrhosis. Her eyes took in the scene quickly. I was lying on the couch with only a sweat soaked sheet, shivering with fever. The trash can ran over with empty high fat protein shake bottles that had washed down Telaprevir. My eyes were hollow and my hemoglobin was about 7. I looked like a hairless Chihuahua. She silently started packing a bag. I protested that I had to work to keep insurance. My plan would be fine if I could just finish 40 more weeks of treatment.
Within a couple of hours, I was lying in her tub crying like a baby. A major role reversal had taken place. She brought me a warm towel and some pajamas. A little basket contained my steroid cream, Kleenex, and medication. My pill containers were filled and my injections stashed in the lettuce drawer of her fridge. My make-up and clothes were all ready for the next day.
There was not another soul on the planet that I would have allowed to do what she did. She took care of me. That girl did it all from stocking and cooking my specialty foods to paying my bills and trying to help me keep up with all of the medications. My daughter is highly organized. I could not keep up with my own earrings from day to day. This was not necessarily a huggy, loving time. I have always admired her efficiency and tenacity. Her ability to take a messy situation and make sense of it has always been astonishing to me. She was on a mission. I am here today, because the mission was accomplished. I survived the treatment!
That quiet voice in the night telling me to try and sleep – That’s my daughter.
The voice singing softly as her hands smoothed oil over my dry and blistered skin – That’s my daughter.
A tired and tearful voice whispering to her husband that she cannot handle any more – That’s my daughter.
An angry voice telling the pharmacy that they better ship those injections today- That’s her too.
A firm voice that flatly states that the entire family is leaving for a long weekend at the lake, without me -Yep. That’s my daughter.
We are at a stage now where we laugh at some of the awful experiences we shared. Her eyes are still troubled when she sees any sign of swelling. Her teasing reassures me that she knows that mom is back in charge of her life again. I was a mom with Hepatitis C. I am now SVR with end stage cirrhosis because of the Hep C Virus. My daughter has always been my greatest joy and my proudest achievement. She became my caregiver.
She tried to ignore my Riba Rage. The Hepatitis C was not transmitted to her. She has not read this blog yet. If you have children, you understand how hard it is for our kiddos to hear all of our truth. Let today be an opportunity for us to tell them how much we love them. With a heart full of love for you and your family – I was a mother with Hepatitis C. I am your best friend in the hep c and cirrhosis battle, Karen:)
P.S. We’ve come a long way in the last couple of years since treatment ended. She is now trying to help me through the liver cancer diagnosis. It is NOT without stress, I can promise you that.
4 thoughts on “A Mother with Hepatitis C”
What a wonderful daughter for a wonderful mom. It made me thing of the first time I was in treatment and was running my own business, needed the insurance and no one to cover for me when I got so sick and couldn’t make it. My husband at the time did everything for me, drove me where I neede to go did everything around the house and did anything and everything I asked. Now on the verge of going into treatment again, he won’t be around for any of anything, he left me in 2009 and sometime it feels like it wasn’t that long ago at all. After 23 years he decided to write a note and just leave, he no longer wanted to live in sc, we were originally from pa…so back he went. At the same exact time and day, I found out my mom had colon cancer and I got into gear of taking care of her and putting my issues on the back burner. I stayed with her through radiation and chemo what she was able to tolerate before discontinuing it and 30 hours in the hospital with the operation and due to almost losing her, she had filled up with so much fluid. She also came home with me for the next 12 weeks to recoup. Today she is in the best shape possible after undergoing what she has been through and deals with issues but we are both glad to be alive. A mother and daughter are a very special relationship. So glad you have your daughter and your family, love reading what you write Karen, it always brings something to my mind….and right now I’m very grateful!
Sharon,
She is a jewel. It cost her a lot in mental and emotional pain. I hate that, you know? I’m glad your husband was at least supportive during treatment. I was so ill and had HE before I was diagnosed. We divorced, so it was up to my Sarah and she’s an only child.
What a miracle your mom is! Now you two can embrace life like never before. There is a deeper understanding of how precious each day is once we face death. It helps us to have a greater appreciation for everything. Especially those who stand beside us. You are right about moms and daughters. I look forward to hearing more from you and the special times you and your mom will share!
Thank you so much for your comment. It means a lot to me today. She is going through a divorce and I’ve been helping her a lot lately. Nothing tugs your heart strings like your kids. Especially after what we go through together. I’m just grateful for my blog, forum, and facebook friends. Meeting people like you is what it is all about.
Love to you tonight,
xo Karen:)
Thank you for sharing this Karen. I have a bit of a different perspective. When I did peg interferon/Ribaviron treatment back in 2003 my daughter did not bother to even find out how I was doing. We have had an on again off again relationship since she was in her early 20’s. When I received my first transplant I didn’t hear from her. When that liver failed and I was fighting for my life and praying for another liver, I didn’t hear a word from her. My husband called her and told her that I was dying and so she called. After my second transplant she came to see me with our new grandson. Now after nearly five years she is no longer speaking to me and is furious that I wasn’t there for her when she was pregnant and in the first few years afterward. My point is, that she does not realize that in spite of all this, she is still one of my greatest joys! I also have a 14 yr old son who has gone through so much fear watching me suffer. Who has acted that out in anger at Mom for being sick because that’s what scared little kids do sometimes. Who has Asperger’s syndrome on top of it all. As if things weren’t tough enough already. Today he is the sweetest, most compassionate young man and another great joy! The role reversal is so tough on everyone! A mother’s love is forever. My husband took care of me, our son, the household. The roughest thing for all of us. It has nearly destroyed our marriage and might still, but we too are healing.
Your story really touches my heart in many ways. I totally understand the pain you must feel.
My daughter and I had a rough spell last winter. I think she just needed to finally deal with all the stress my illness put her through. I sat back and prayed and continued to love. I learned to listen to her anger without taking it personally. THAT was not easy. I simply listened a lot. I would repeat her words back to her: “You have been through so much and it was hard to feel alone during that time. I can see how you gave up a lot to care for me.” and other statements.. Gradually, she felt validated. She ended up crying in my arms. The healing began. I need to blog about this, but it is painful, as you very well know.I hope that you too will be able to find total restoration.
It sounds like your son has done extremely well. Keeping things calm for someone with Asperger’s is difficult. You have done well to help him to learn and grow into a more compassionate person. Our disease does have some positive effects in ways like that. Bless your husband for being so caring. I know that it has to have brought you closer.
Now that I am in the process of getting listed, I can see what a change it is making in my relationships. I can not imagine what you have gone through with 2 transplants. I am going to need to hear some more from you in the coming days. You write with such confidence and it is making me cry tears of joy and relief that this is possible. We do what we have to do – one day at a time – and let the healing begin.
I love you for taking the time to share your story. Please oh please keep in touch.
xo Karen:)
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