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Cold Dark Facts

Cold, Dark Facts

Saturday, July 23, 2022

2:04 PM

 

This is more for me to keep me squarely facing reality, but for those of you who have been wishing and hoping that I’ll get better, there is no recovering from this.

 

Pulmonary fibrosis (PF) is a progressive condition. It will only get worse. It scars the tissue in the lungs, which means they will not process as much oxygen as they used to. As more and more tissue is scarred my breathing becomes less and less effective.

 

What my doctors and I are trying to do is slow the progress of the fibrosis.

 

I have been trying to get on a different drug. It’s called OFEV. It’s a drug that has been proven in many cases to slow the progress of PF. It may or may not work for me, but I don’t know yet because of the barriers I’m trying to climb over.

 

OFEV is very expensive. If I were to pay the full amount, it would cost me well over $4,000 a month. I have applied to Health PEI through two different programs to see how much would be covered. While I am still sorting through this, Health PEI is saying that because I made a good salary last tax year, I will have to pay about $20,000 before their support will start. It doesn’t seem to matter that I am retired and in fact can no longer work because of my illness. Those are the rules.

 

Meanwhile, my private health coverage is failing me. The company is telling me they are only receiving half a faxed application from us and they cannot process my request for financial support until they receive the full form. This has happened twice now and every time they fail to receive the full application, it takes them 4 days to 2 weeks to even tell us it wasn’t received. A fax, FFS, in 2022. Apparently, they haven’t figured out how to use encrypted documents or email. So I don’t even know if they are going to help financially.

 

I’m trying to deal with all this with my failing health and lower energy. Now I’m in hospital with fewer physical resources and even less energy to fight the good fight.

 

I’m being asked by the company providing OFEV if I just want to bite the bullet and start paying to get on the drug sooner. $20K would be slightly less than half my current annual income. Or I can start drawing from my life savings. That’s a decision I have to make soon.

 

What other options do I have? A lung transplant is what I am also pursuing, but it too is a difficult process. It has higher risks than a heart transplant, but given what I’m facing with PF, I am very willing to take that risk.

 

And finally, I will apply for Medical Assistance in Dying (MAiD) once I am out of hospital. My mother died from idiopathic PF. I was with her during the last few weeks of her life. It was so difficult for her. She essentially suffocated to death. At that time, there was no such option in Canada because if there had been, mom would have taken it. At least now I have that choice.

 

Let me finish by being very Canadian and apologizing. I’m sorry if this has made you uncomfortable. You should try sitting in my johnny shirt with these cold, dark thoughts. I will try to stay positive and keep my sense of humour. I will live as full a day as I can every day, but this is what I’m dealing with.

 

Looking ahead, there a tiny glimmer of light in the distance of next week. The doctor says I might get out of here on Tuesday or Wednesday. Tomorrow I will find out how I will start home oxygen. I think I need it and I guess I will have to pay for it if I don’t qualify.

 

Thanks.

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