Neff- I can completely relate to your post. In fact, I had even thought a sibling of mine had posted this because it was exactly what I had gone through. I lost my mom on July 23rd 2014. I lost her to hepatitis C same disease your mother is battling. She like your mom had the disease for almost 30 years before she was diagnosed or even aware of it. Upon her diagnosis in 2000, she immediately started treatment. A treatment that really took a toll on her mind and body. She battled depression for quite some time as a result. I was young so there was a lot going on that I didn't know about
. In 2000, she was put on a liver transplant list and she was on that list up until 2014. Anyways, she pretty much lived with the hep and in a way her behavior and lifestyle seemed normal because I had seen her that way for so long. She didn't go out much or leave her bed too much because it exerted too much energy to do so. She would often watch movies and read books. She never really slept well. Well this past year proved to be the worst.
Every few months she'd deal with high ammonia levels and back in May we thought that was the issue again because she wasn't making a lot of sense and her balance was off and she wasn't going to the bathroom as much.
Well she went to the doctor and realized she was suffering from an acute and life threatening case of pulmonary hypertension. It shocked us all. I mean she had her health issues because of the hep but this is seemed very serious. She now was required to have oxygen and a tank 24/7. She stayed in the hospital for a couple of weeks and then went home.
The doctor said, she would no longer be allowed to have any surgeries because it would be too risky. Yes, it was extremely serious because that meant unofficially should could no longer be eligible for a liver transplant.
However, we all thought maybe she would keep receiving treatment and would never need the surgery after all she had lived years without it. The other part that sucks was back in April my mom started on a hep c treatment and it basically cured her of hep c but the hep c had done irreversible damage to her body. The cure had come too late.
Back to what would now be June, she was home for maybe two weeks before we got the call that she was in the hospital. We were told at that point if she did not receive a transplant she would die because her kidneys and liver were shutting down. It was a couple of days in the MICU before we got an official denial for the transplant.
I can't begin to describe the heartache I felt as I sat next to mom knowing she was dying. Her body had become so swollen--filled with fluids as a result of her kidneys not functioning. She had fluids oozing out of her body because it had no place to go and she could barely speak. The few times she wasn't sedated she was crying and screaming to get her out of there. It was the hardest to hear.
Our next step was meeting with a team of doctors to discuss comfort care options. My dad decided to honor her wishes and allow a natural death and a DNR. We were then moved to a comfort care room. A room like you described with a recliner and a pullout sofa, shower and just a much bigger space with no visitation limits. She was there for two days before we were able to take her home with hospice.
She survived two more days and then she took her last breath. Saddest day of my life and I feel much like you, I am only 24 and I have yet to do a lot of those big life moments and I don't know how I am supposed to do any of them without her. I love her and it is really hard to remember her in her prime because she had been fighting for so long and her last days replay in my head over and over again.
Life is not fair and she was a good person who deserved more than to die at 61. She had a huge heart and Hep C took a big part of it. Life sucks. There is nothing in the world that can prepare you. Regardless of how long she has fought or what the doctors tell you, watching your mother die is the hardest thing.
Post Edited By Moderator (MamaLama) : 8/14/2014 12:05:53 PM (GMT-6)