Note to family (downhill)

Sunday, July 17, 2022

10:00 PM

The past four days have been difficult. Up until last Thursday I was doing fairly well. I was playing tai chi and walking every day. Thursday, I woke with increased difficulty breathing. Friday wasn’t any better. I know it’s partly the humidity and heat. I decided to try my puffer to see if that would help. Nope. Along with the usual accelerated heart rate and jitters, my chest began to hurt.

I haven’t been down to the beach in a couple of days and I haven’t done my tai chi. I have had to limit my movements because even walking across the room can cause me to begin to pant and gasp for air. Not being able to do very much of anything around here is making me feel useless. Mary is a great help and tries her best to keep me from doing anything unnecessarily, but I’m a challenge. Can’t sit still.

I made the decision that I wouldn’t go to the emergency room this weekend. Two Ers, one in eastern and one in western PEI, were closed this weekend due to staffing shortages. It would have been a gong show at the Charlottetown hospital’s ER. Tomorrow, I’ll call my respirologist and see what we can do. Sooner or later I expect I’ll have to go on home oxygen.

The new drug I’m supposed to go on, called OFEV, still hasn’t happened. I’m trying to sort out what funding support will be available and because I’m dealing with the provincial government and a private health plan, the hoops I’m required to jump through seem never ending. The first response I received from Health PEI is that I would have to pay the first $18K before any support kicks in. I made too much last year. I’m still waiting for a decision from my private health insurance company about how much they’ll cover.

I’ve joined a pulmonary support group that meets once a month. They’ve already helped. I’m trying to get into a pulmonary rehab clinic, but there is a wait list.

And being out at the cottage full time is good for my mental health.

Comments

Counting

It’s feels strange to be counting the rest of my life in weeks and days and curling games on TV. While we haven’t finalized the date for MAiD we are aiming for early November. Some examples… Last week, confirmation of my cataract surgery arrived by mail with a date later in November. Nope. I won’t be here for that. A couple of days ago, a friend and former colleague dropped off some cookies and stayed for a brief visit. She said she would be out of province for about six weeks. As she was leaving, she said she would see me later. Nope. I won’t be here when you get back. The other evening I was asked why I was staying up so late. I replied that I was watching a women’s curling game and for me there were just a few games left in my life to watch so I was staying up. And all of a sudden it doesn’t feel as if there is enough time to make sure all the other things are looked after. One major item has been checked off the list: organizing and pre-paying for cremation. All I needed was ...

After the Transplant Doctor Consultation

Last Friday started sunny and calm outside. Inside, another story. Getting out of bed is very difficult most days. It takes a lot of energy and oxygen to get myself going. This morning I found myself in a coughing loop. The more I coughed, the lower my blood oxygen level dropped. Coughing is physically exhausting. After being unable to stop coughing, I switched from the concentrator to a tank of oxygen which gives me purer O2 and helps break the coughing loop. It worked, but I had used a lot of physical energy. I only have so much and I needed to save some for my meeting with a doctor from the transplant team at Toronto General Hospital. The meeting started late because the video conferencing app Microsoft Teams didn’t work. [surprise, surprise; btw I hate MS Teams] We finally got the audio portion working, but the doctor could not see us. We could see her and we could hear each other. The first 30 minutes or so was the doctor exploring my health history. I’m getting very good at telli...

Time is running out

The sand in the hourglass measuring the remaining time in my life is running out. The past couple of days have been very difficult. My energy is low. My breathing more laboured. I have by times felt nauseous at the thought of eating. Overall I have never felt so weak. My body is shutting down. ------------------------ "The mystery of life isn't a problem to solve , but a reality to experience." Frank Herbert, Dune ------------------------ I know there is a time limit on the human body. I once read that human beings had evolved to live between 50 and 60 years, but 20th Century science and medicine had extended lifespans to 80+ years. About a year ago I looked back at males in my family. My father and my two grandfathers lived into their early 80s so I concluded I might have another decade. What I failed to consider is longevity on the female side of the family. My mom died at 78. Her mother at 77. Mom's sister at the very young age of 44. Seems my genetics line...

Journey to Another Place

Search This Blog