Stroller Spotlight – Strolling for Dad

STROLLER SPOTLIGHT

Strolling for Dad

I lost my dad to liver failure on April 1, 2020.

My father had been living with non-alcoholic fatty liver disease (NAFLD) for several years. His health wasn’t great, but, at first, that wasn’t slowing him down much. He would follow up regularly with his hepatologist who told him that he was stable. This went on for years. Then, his NAFLD progressed into NASH, and things got worse. He was in the hospital more often. He became less mobile, had less energy. We almost lost him in 2011 when the varices in his esophagus bled. After about a week in intensive care and several blood transfusions, he pulled through, and things became stable again. In July 2019, he was admitted with confusion, and we found out that it was due to an infection related to his poor liver health. He was then admitted again over Christmas as things were progressively and more rapidly getting worse.

The medical staff were able to stabilize him once again, though, and he was even well enough for us to have beautiful dinner at my uncle’s house on January 25^th to celebrate his 70^th birthday.

His next follow-up with his doctor was on February 6, 2020. I spoke to him the next day, and I will remember that conversation forever. His voice was weak; it shook. He told me the doctor’s news: unless he received a transplant, she estimated that he had six months to live.

That very same day, about an hour after our conversation, my dad collapsed. My mother called 911, and he was taken to the Ottawa General Hospital. He never went home.

His numbers were very bad, and they decided to keep him under observation. But nothing was getting better. Then, on March 1^st, he was flown by medical transport to Toronto General Hospital’s Transplant Unit. My mother and I drove to Toronto the next day and spent several days with him as he got tested to see if he was a transplant candidate. The social workers interviewed us to make sure we understood how serious this all was and how much support he would need after the surgery. Neither my mother nor I were a match, so we couldn’t be his living donor, but there was a family friend who was a match and who was willing to help.

Finally, we received the good news that he was cleared to go on the transplant list. We were glad for him to be flown back to Ottawa until the surgery.

COVID-19, which was beginning to take more and more airtime on news channels, started getting serious in Canada. Because of it, we couldn’t visit him as much as we had been, and then we couldn’t visit him at all. We could speak to him on the phone, but he was slowly becoming more confused from hepatic encephalopathy. When they had capacity, the nurses would get him on the phone for us. The very last time I was able to speak him, it was over the phone, even though I was only 30 minutes away.

My dad’s health deteriorated further. The Living Donor program in Toronto, which would have had to approve my father’s living donor, had stopped doing their mandatory pulmonary function tests and had, in fact, put everything on hold because of the pandemic.

This was my father’s last hope, and it was gone.

He was moved to palliative care at the Ottawa General sometime around March 25^th. (I admit that dates got hazy for me around this point). Finally, I was able to see him for compassionate reasons, but he was already unresponsive. I would talk to him, and we would listen to the Beatles, his absolute favorite band. The palliative team at the OGH, which was absolutely wonderful with him, told us that, with the expected surge of COVID-19 patients and the need for more hospital beds, it would be best to transfer him elsewhere for his final moments, so he was sent to a beautiful private room at the Elizabeth Bruyère Hospital. Here too, because of COVID, only one family member was allowed to stay with him. So, when he passed away peacefully at exactly 8:30 p.m. on April 1^st, my mother was at his side. She called me at 8:35 p.m., and I was allowed to see him. We spent the rest of the evening by his side. (They made an exception after he had passed).

Because of COVID-19, there was no funeral service.

My father was the kindest person. He didn’t judge. He was easy to talk to, and he really listened. He gave great advice. He was funny and had the best sense of humour. He was smart. He was encouraging and always there for the people he cared about. I was really lucky to have him as a father.

He was one of my best friends.

We all lost him much too soon.

The Canadian Liver Foundation went above and beyond to help us through this. They helped my father and all of us by providing peer support.  They helped my mother and I find accommodations in Toronto so we could be near the hospital. And they followed up with us to see how we were doing through the roughest parts of it all, just to name a few examples.

My father always felt better after speaking to the CLF volunteer we had been matched with, and so did my mom and I. They were positive and gave us priceless information that we were in no state to find on our own.

If anything can prevent other families from having to see the most important people in their lives slowly and then very quickly deteriorate like this, I am honoured to contribute.

This year, I am participating (Édith-Émilie’s Fundraising Page) in the STROLL for LIVER in my father’s memory. He knew about the Stroll and would have wanted to be there. I think he will be.