Background Story

It struck me, after talking to my cousin Ralph several weeks ago, how out of touch I have
become with old friends. We send jokes and articles to each other while becoming personally
more disconnected. It all came home to me when talking to Ralph exactly how acute it has
become, so, I would like to update you all. I am terrible with dates, time seems to pass by very quickly, but I believe that this last adventure started in 2009.
 I went to the doctor having become frequently quite short of breath. I was doing my job, but having to pause frequently to catch my breath. I was referred to a Respirologist who began a period of testing me for various things. I can’t recall exactly when he came up with the answer but it was finally diagnosed as idiopathic pulmonary fibrosis.
 Did idiopathic mean somehow that I was an idiot for having caught it?? Apparently, idiopathic means
that they don’t have a clue how people get it! Now I’ll bet that all my old friends will
immediately assume that my years of smoking finally caught up with me. Apparently though,
there is no evidence that smoking causes the disease, but that it might egg it on a little! This
disease, they believe, is caused by some foreign substance that one might be exposed to like fiber
glass, asbestos, mold ... or some other unknown irritant. So, “idiopathic” means that they don’t
have a clue!!
This disease has no cure, or real treatment, and is deadly. It certainly will not get better,
but my doctor had told me that some of his patients have lasted a number of years. However, one
of the British studies I had read said that 50% of those diagnosed, died within 3 years.
I was able to continue working, doing most of what I had to do throughout 2011, but I
was having to take longer pauses to catch my breath. I could load luggage into the back of a van,
but I had to pace myself carefully. I was becoming more and more aware that my passengers
were certainly noticing my heavy breathing, but my employer was allowing me to continue
working. Driving was a big part of my job, and I never had any problem with that part of the job;
that never stressed my breathing.
The date January 9th, 2012, I will not forget. I started loading luggage that morning, and
was having a lot of difficulty. I told my supervisor of my breathing problems, and she suggested I
get another driver to help me. He did, and I got the vehicle loaded, and the drive to Detroit was
fine. That day though, my pride kicked in, and I realized I could not expect others to aid me in
my job. It was my last day of work…
During the next few months I had several meetings with my Respirologist and was given
several pulmonary function tests. I was put on a drug called Prednisone which scared the heck
out of my lady. She had been married to a man on the drug and has experienced some of the
nasty side effects of the drug. Apparently, it promotes weight gain, and be quite a mood changer
in some people. Her way of putting that was not quite as polite. (Susan here: I call it the nasty b@s*!@rd pill)
I had developed quite a nasty cough and the Prednisone had helped it a fair amount but as I was
weened down in dosage, the cough would come back. I could not sleep other than on my left side;
anything else and I would cough badly. As the cough got worse, I would fight to find enough
time to catch my breath, and it would become quite scary.
Finally, in late June, Susan would ask me repeatedly to go to the doctor when it became almost
impossible to catch my breath. We called the family doctor, who was away on vacation. I went to
see one of the other doctor’s in the office who immediately suggested that I head for emergency
where she thought tests could be better carried out..
I have tremendous respect for our medical system in Canada, but waiting for 4 or 5 hours
in the waiting room is uncomfortable anyone. When I was finally seen, I was put on oxygen, some tests were conducted, and it was decided that I should be admitted. My oxygen levels at
that time would get no better than about 74. (We would not find out until mid-morning the next
day that there was a problem with the oxygen generator at my station ). The nurse in the morning
told me that they had a room for me on the cardiology ward but that she did not want to send me
up there with the bad readings I had, so the respirology techs were called in. It was amazing that
this one gentleman came in and immediately found the defective equipment. When it was
replaced, the oxygen was able to bring my levels up to normal while on O2 supplement.. Through the next several days, I was treated for a lung infection, and then informed that I would be on oxygen 24/7. Several
more days and I went home with prescriptions for 2 antibiotics, and a plan to again ween me to a
lower dose of Prednisone.
I guess at our ages, now a senior citizen, we don’t think of things that might be available
to us. I had gone to the Respirologist before and had asked many questions about the disease, and
had read quite a bit also. I was resigned to the fact that this disease was not treatable, and that
there were different speeds that the disease took in different people. I had been asked to be part
of a study for a new drug that was being tested to perhaps slow down the progress of the disease.
I immediately agreed, but testing proved that I did not meet the requirements; I had an elevated
white cell count, probably the result of me being on Prednisone.
Oh yes, back now to one of the questions I had never thought to ask. I figured what was the point,
I was a senior citizen! ||The question entered my mind suddenly though, and I blurted it out to
my Respirologist. What about a lung transplant????? I had not before thought of the possibility,
but was surprised when the doctor said that they were possible… Even for someone in their 60’s,
and 70’s; perhaps not so much for those in their 80’s etc…. I got the sense though that even that
might not be impossible.
posted by Carl