Hepatitis C – The Long Goodbye
The long goodbye is often used to describe the drawn out fading of a person’s mind, who is suffering from Alzheimer’s disease.
But for my Mom, it was because of Hepatitis C.
My Mom worked as a hospital lab technician for most of her career. She remembered accidentally sticking her hand, with the contaminated needle of a sick patient.
Hep B and A were well-known and treatable. But forty years ago no one knew Hepatitis C existed. It took 20 years for the disease to rear its ugly head. They were finally able to properly diagnose her.
Hepatitis C is a chronic infection of the liver, that leads to scarring, cirrhosis, liver failure and eventually liver cancer.
She fought a brave fight. She endured two rounds of interferon and riboveron treatment, requiring self injecting toxins, directly into her stomach.
For a time after that, she seemed better. We all breathed a sigh of relief and prayed it was gone.
She called me one day from her back yard in New Mexico. Luckily she had a cell phone with her. She’d fallen down and couldn’t get up. Not because she was weak. Because of the ascites associated with her advanced Hepatitis C. Because her liver wasn’t filtering out toxins, her abdomen was filling with excess fluid. She looked ready to deliver triplets! She told me she felt like a turtle, stuck on her back. I phoned a cab to come and take her straight to hospital, then flew down.
She began another course of interferon and riboveron. Sadly, it was too late. Her doctor failed to check her liver enzymes and she’d already developed cirrhosis. By injecting herself with this hopeful cure, it put her into liver failure.
Her only hope now was to get a liver transplant. That meant she needed a patient advocate to navigate the process with her.
A nasty side effect of Hepatitis C is encephalopathy. Her doctor told me she wouldn’t know she had it, but we would. It causes confused thinking, poor judgement, mental fogginess, forgetfulness, personality and behavioral changes. My Mom got ALL of these and more.
Since my brothers both lived in Canada, the solution was for her to live near me in California. I would be her medical advocate.
Her insurance company was so happy to get rid of her, they paid for an ambulance jet to fly Mom, me and one nurse directly to UCSF, in San Francisco.
Then we began the long process of trying to get her a liver.
Every week I drove her to both UC Davis, and UCSF, to meet with their transplant teams. There were a battery of medical tests, she needed to pass, to be eligible.
The last test was a mammogram. When the results came back positive, she didn’t realize the significance it would play on her liver transplant. I did.
Her enemy never became breast cancer, it was always her liver disease. She had a lumpectomy and radiation for the breast cancer.
Then we went for a follow-up at UCSF.
As we sat in the doctor’s private office, he danced circles around my Mom’s condition. He said, “Well, if you can remain cancer free for 5 years, we can put you back on the transplant list”.
Mom was surprised, but encouraged. She didn’t understand. The encephalopathy didn’t allow her to understand. This bright, capable woman could no longer reason or think clearly.
I got furious. I demanded (politely) the doctor be honest. He looked at me askance. I said, “My mother won’t survive 5 years without a functioning liver. And you know it! You must tell her the truth. She deserves to know the truth and won’t believe it from me.”
He just stared at me. By this point I was standing at the front of his desk. The interns behind his chair began backing up.
I said, “You’re being cruel to not be honest with my mom”. I wasn’t yelling, but I was close. I felt like lunging across his desk and choking the truth out of him.
We waited. And waited.
He finally told her she would not live 5 years and would never get a liver transplant. I thanked him and helped my mom get to the car.
Our drive home was quiet. She said she understood, and she may have, but I couldn’t be sure.
She moved to be near my oldest brother, soon after I’d had her driver’s licence removed. She’d already had 6 minor car accidents, and I knew she shouldn’t be driving. I couldn’t live with myself if she injured or killed someone. Her doctor agreed. To say she was furious, would be an understatement. She called to tell me I was no longer her daughter and she was cutting me out of her will. She packed her stuff (we all helped) and moved to Canada. She wanted to live near my oldest brother.
Within 2 months I got a call. Mom had been found unconscious and taken to the hospital. She was in an hepatic coma. She was never coming out of it.
My brothers, Dad and I began to sit vigil. We spent everyday with her. Telling her it was OK to let go. We were all fine, we loved her and she could be at peace.
After 6 days I asked my Dad, why she wasn’t leaving. What was she waiting for? He looked in my eyes and said, the lesson here was for us, not her.
Another day went by. I finally suggested we get a minister to come in. Maybe that was what she was waiting for.
After the minister left, my older brother headed home to start dinner. My dad went out for a cigarette. I went to the cafeteria for a cup of tea.
My other brother, who had been estranged from my Mom for 20 years, sat with her.
As I adding sugar to my tea, it just exploded all over my hand. I knew it was a sign.
I raced back upstairs and she was gone. She chose to leave when only one of us was with her. The one she obviously needed to be with.
Happy Mother’s Day Mom!
You loved us all, and were loved, fiercely.
I’m sorry I lost you… so many years before you died.
I have been reading your blog for quite some time and just happened to see and promptly read this heart breaking post. I am so very sorry for your loss. My only sister passed away from breast cancer that had mestastized to her liver. She too had ascites, mental confusion and personality changes. Her oncologist told her that she could live for seven years if the treatment worked. I knew the cancer had progressed to the final stages (as did her doctor) it was clear she was very close to the end. I was furious with her doctor in giving her false hope. Our parents were elderly and needed to be with her but she didn’t understand the need for them to travel. After all, she had seven more years. And believe me as confused as she was, she held on to the hope she had been given. She lived one month to the day of her visit with the oncologist that gave her false hope. In her mind, I became her enemy. At the end of her life, she wanted me and only me to be with her. And I was there. As she took her last breath, I knew she was going to a better place where she would be free of this devastating disease. Thank you for sharing your most personal experience and also for this vehicle that has allowed me to share mine. God bless you.
Thank you for sharing your story Bette. I’m so sorry to read about your sister. What a horrible tragedy! Sadly, I can imagine the pain you went through during this terrible time. Thank heavens you were there for her. God bless you!! XX
Such a painful story. I hope you heart has healed, as best it can.
It was a brutal time but wounds do heal and I remember the wonderful times with her.
I am so sorry for your loss. You never quite get over losing your mom, I would like to say more but can’t, My tears for both your mom and mine are making it impossible to write. Prayers for your family. Hugs, Peggy
Jennifer, So sad to read what your mom had to endure. It’s terrible to lose a mother and I don’t know how you got through it all. You were there for her and did all a good daughter would. She was lucky to have such a loving daughter. I still think about my mom and the circumstances around how she died all the time. I guess you never get over that. Sending hugs. xo Kim
You were a good daughter…but you already know this. That is the greatest comfort you can have after the loss of a parent.
Knowing I did all I could for her is comforting, by I still second guess what more I could have done.
I know the feeling my dad was all of a sudden acting confused and had ascities when I called his dr and asked him why he wasn’t being told to go to the hospital…. I was told to take him right in, however my dad refused he said tomorrow and so I agreed. When tomorrow came and we were getting in the car he said”you know I won’t be coming back home right?” I told him that was silly turned out he was right. My dad was brought in in November and after developing a pulimnary embolism that traveled to his lungs he started to deteriorate. He was confused he developed a urinary tract infection and then bed sores and never spoke after this we communicated by his moaning at me it was him swearing at me prior. Then before I knew it my whole life turned dark I have never loved anyone the way I love my dad and he was gone due to my descions. Could I have saved him? The what ifs? The maybes? The
long hours and times I went home instead of sitting by him? The videos I forgot to take and the trust he put in me to save him and he died it is hard to get past that guilt I miss my dad so much he left dec 23, 2015 and my life is so empty without him!! I’m sorry for ur loss of your mom as well????
I’m so sorry, Alishia. Please don’t blame yourself. Hepatitis killed your dad and you did all you could for him. Don’t worry, he knows you did your very best and is in a better place now. Would of, could of should have, never helps anyone. Nothing you could have done would have saved your Dads life! Be kind to yourself and focus on the positive memories.
Jennifer, what a lovely tribute to your mom. It is both heartfelt and heart wrenching. It took me a few days to read your post because I know the long goodbye of Hep C’s as well. We lost my brother Mark to the disease 11 years ago. Yesterday would have been his 56th birthday. It is a dreadful disease!
Thank you for sharing your story.
I’m so sorry for you and your brother Mark! He was so young! It is a brutal, unforgiving disease that robs its victims of their dignity.
I am so sorry. We never know what some people’s trials in life have been. A lovely tribute of love from you to your mom and a lesson on why we should always be kind to people. We never know the path that people are on.
Thanks Priscilla ! We can’t tell from the outside, and need to give people the benefit of the doubt.
Hi Jennifer,
I’m a little late commenting here, but wanted to acknowledge the beautiful piece you wrote.
I’m very sorry that your Mom had to endure all of that, how tragic that this happened to her. It sounds like you were right there by her side through it all.
I can sympathize a little, however my Mom had mental health issues, suffering from depression and anxiety. She had a major depression episode in her mid 50’s (when I was in high school) and then it resurfaced when she was 67 and she never really shook it. All the while undergoing countless Electroshock Therapy treatments and hospitalizations. It was so difficult to see her suffer from this. Finally her liver gave out, (I believe it was possibly from all the meds she was on over the years) and she passed away when she was 79. My sister and I didn’t make in time either, she died when we were en route.
I recently came across a photo of my Mom that was in an email from a relative, taken probably a few years before she passed away. You could just see how miserable she was. I sat here at the computer bawling my eyes out. I would have done anything back then to make her feel better.
Thanks for sharing your Mom’s story…I’m sure it was difficult to write but such a very loving tribute and I’m sure she was proud having you as her daughter.
Linda
Thank you Linda. Your Mom’s story sounds very tortured and painful. I’m so sorry she, and you, suffered so much. We daughters do what we can, with what we have available, at the time. And it still hurts when we judge it to be not enough. You sound like a loving daughter who did her best. I’m sure somewhere, in you Mom’s mind, she knew how much you loved her.
Jennifer, you paint such a vivid picture of your mother and your family – it shines through poignantly in this beautifully written piece – a heartfelt tribute to a very special lady.
Thank you Kate. My mother was the bravest, strongest women I’ve ever met. She was very special.