In what seems like a very short space of time I went from walking on my
own to needing oxygen for walking and then needing to use a walker as
well. My walker has a seat so I can rest when needed and a
basket for my oxygen tanks. I would like to avoid using a wheelchair for
as long as possible although that too may become necessary eventually.
I was thinking back the other day to the day when I was told by my
respirologist that I had IPF and the events leading up to that
appointment. I had been waking in the morning and feeling weak and faint
and short of breath. Earlier in the year when we were vacationing I had
difficulty on the plane and I remember wondering why. I wondered if I was
maybe having some heart problems. By October the shortness of breath was
so bad that my GP sent me for heart tests. These all came back fine
although they mentioned several times that my oxygen saturation was going down
and my heart was racing. I was also told that my pulmonary pressure was
way to high as well. The cardiologist put me on a medication to slow and
steady my heart rate and advised me to follow up with the breathing problems.
My daughter Laurie and I attended an appointment with my
respirologist and I was sent for tests. When we returned I was told
that I have Idiopathic Pulmonary Fibrosis, that my oxygen levels were going way
to low and I would need to start on supplementary oxygen immediately. He
also told me that he will submit my name to Toronto General Hospital for a
possible transplant. He explained some of what was involved in having a
transplant and assured me that nobody would ever fault me if I decided not to
go through with one.
I remember both my daughter and I just sitting there stunned for a few
minutes trying to take all this in and make sense of it. Then I asked
him, if I didn’t have the surgery, how long did he think I would
have left. He said that he didn’t have a crystal ball but based on my
symptoms, he estimated about 2 years. I could not believe what I was
hearing. I knew this was a serious and progressive disease but I was
thinking more like maybe 10 or 15 years. I left his office short of
breath and crying. Within a few weeks I was on oxygen 24/7 and had an
appointment to go to TGH in February 2012.
I don’t think I ever considered not having the transplant. It’s
not that I’m afraid to die, I’m not, but I’m in no hurry either. I love
life and my family, and I’d like to stick around for a bit and watch my
grandchildren grow up. If that’s not God’s will, then so be it, that’s life and
we have to deal with what we’re given. However, I believe that
modern medicine is a gift and a tool that the Lord has given us, and I
will use it and be thankful for it. Below is a picture of my two constant
companions, my oxygen concentrator and my liquid oxygen tank with two portable containers.
The concentrator is what I use to supply my oxygen when I’m at home and the
liquid oxygen is what I use to fill my canisters for when I go out.
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