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August Seventeenth FaceBook Post

Aug 17 FB Post

Wednesday, August 17, 2022

4:53 PM

 

Quick recap: I have pulmonary fibrosis (PF). It’s caused by sarcoidosis. My lungs are in bad shape. The tissue that processes oxygen has been scarred and I can’t simply can’t get enough oxygen when I need it.

 

After being hospitalized back in July, when I came home I started to feel like I was making some progress. I could breathe a little better. I could do a little more physical activity. But in the past few days I feel as I have plateaued and maybe even gone a little bit backwards. Sometimes, getting out of a chair and crossing the room leaves me breathless. And when I say breathless, I am gasping for air and trying not to panic. The humidity and the rain make my breathing more difficult.

 

The dry cough that accompanies PF is unpredictable. Some days, not too much coughing; other days I’m coughing a lot. The coughing of course makes everything worse. Coughing begets more coughing. Coughing makes it harder to breathe. The exertion it takes to cough means the body needs more oxygen, but there’s not enough of that element. There’s little that can be done to prevent the coughing. Both codeine or hydromorphone can provide some relief, but they’re opioids and come with unwanted side effects. Some cough medicines provide short-term relief. The good old standby, Fisherman’s Friend, provides better and quicker cough relief, at least for me.

 

I am now on home oxygen almost all the time. When I am doing anything, I increase the volume of oxygen on the concentrator to help me with whatever the exertion might be. Taking a shower. Washing dishes. Getting dressed. Sweeping the floor. I can tell you that you take for granted how much oxygen you need to complete the most mundane of tasks. I have been able to sleep for periods of time without oxygen and to sit at rest reading without constant oxygen. I’ll take those as small victories. The portable oxygen concentrator (POC) has given me some mobility and freedom, but it’s so exhausting to make even the quickest trips. Last Friday, I picked up a pound of coffee from 5th Wave and browsed for something to read at the Book Emporium. Two stores. Forty minutes. I was drained.

 

PF is a progressive condition. It only gets worse. I am looking at the end of my life coming sooner than I would like, but that’s life. I have no idea how long I have. A lung transplant would definitely extend my life. On my to-do list this week are the following:

 

 - Working towards qualifying for a lung transplant

 - Getting into the pulmonary rehab program at UPEI

 - Applying for Medical Assistance in Dying (MAiD)

 - Determining what will happen to my mortal remains. Green burial is my first choice, but doesn’t seem to be an option on PEI, or cremation.

 - Investigating the possibility of donating my body to the Dalhousie Medical School

 

On the efforts towards a lung transplant, the respirologist says there are criteria that must be met to qualify. There are heart tests, breathing tests, blood tests, various scans, and more. I am going to need to push my body a little harder every day to be in the best physical condition I can not only qualify for such a transplant, but to keep myself in shape to handle such a major medical procedure. These operations take place in Toronto. If I qualify, I will need to move to Toronto, possibly for several months. That will take all of my financial resources and more because I will need to be accompanied by a caregiver.

 

Meanwhile I need to get some equipment to help me be more mobile. I’m looking at a walker with a basket for my POC and a seat for my sorry ass. I’m also looking at e-bikes and trikes as a way of being more mobile. Every day is a whole new world of experiences I’ve only read about.

 

I’ll end this post with a question: if someone helping to look after me is a caregiver, does that make me a caretaker?

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