After a long career in IT development, sales and marketing I am now retired, aiming to enjoy life as much as possible.
I am blessed with a wonderful wife, Mary and two children. My first grandson arrived in early 2021.
Unfortunately I suffer from a disease call Pulmonary Fibrosis (PF). This is incurable and leads to a decline of the lungs' ability to process oxygen. The prognosis is not good.
There are various drugs that can slow down the progression, but ultimately the only "cure" is a lung transplant.
In some cases the cause of PF can be determined, in others it cannot in which case it is labelled Idiopathic Pulmonary Fribrosis (IPF). Whatever the label given to the disease, the ultimate consequences can be devastating.
Until I was diagnosed I had never heard of the disease.
If you want to learn more about PF these are good places to start.
This blog is not meant to provide an education into the disease, more it is to delve into some of the impact it has had, and will have on me and my family.
Before I start I think that a little background might be helpful. I live in the UK and (mostly) enjoyed a long career in the IT sector. My work took me across Europe and the USA and along the way I made some very good friends.
I have never been what might be called a "fit" person. The gym was never my home, nor was running the streets. But I did like to be active.
I have always walked a lot, very often preferring to walk rather than take a bus, or the underground. Walking by the sea, in the hills or in the city always gave me time to think, and unwind a little.
I also liked to ride my bike, not huge distances but 20 miles or so was good. I have tried to play golf occasionally, but I never really got the swing of it to progress much.
Badminton was the competitive sport that I loved. I only played socially, but it could get very intense and was usually followed by a beer (or three) to rehydrate.
I mention all this because I feel that I am neither fit, nor slovenly. Like many people I eat too much and at times I definitely drank too much! I have never smoked, and never taken recreational drugs (apart from alcohol)
I was on holiday in Lanzarote with my wife. We like the Canary Islands. I think that the often barren and brutal landscape is dramatic and awe-inspiring.
One day we were walking by the sea and went over a small humped back bridge. I felt out of breath. I should not have done. It was neither steep, nor high but I was out of breath. This was in 2005. During the holiday that same bridge, and other inclines, caused breathlessness again. Something was not right.
Upon return to the UK I went to see my GP who sent me for a chest X-ray. I was told that I had lower lobe pneumonia and I should take a course of antibiotics. After two weeks I had another X-ray with the same result so another course of antibiotics followed. At the time that seemed to do the trick, I was busy with work and thought nothing more of it,
Five years later I started to notice shortness of breath again. As before, I saw a GP (a different one, we had moved house) and went for another X-ray. I got a call from my GP saying that something had shown up on the X-ray and I should have a CT Scan.
Normally the waiting time on the NHS would have been many weeks and/or months. Fortunately my job had the benefit of private health insurance so I was able to be seen straight away. I had my CT scan and saw a consultant.
The diagnosis was Pulmonary Fibrosis. I had never heard of the disease, and I didn't know what really to expect. The consultant explained about tissue scarring, and how the cause was unknown. He also explained that it was likely to get worse over time and there was no cure, but some drugs might be helpful to slow down progression.
I remember thinking "thank goodness it isn't cancer" and went on my way with a leaflet or two, some follow up appointments to discuss drugs, and to also meet a rheumatologist
At that point, and being a bit of a geek, I wanted to know more about PF, so I turned to Dr Google. I quickly learned there was more (much more) to PF than had been explained.
According to Dr Google my prognosis was devastating. Of course statistics are only indicators, but reading that for some people, and some types of PF, the life expectancy was 3 to 5 years from diagnosis was not something I had been prepared for.
Still, at least it wasn't cancer.
I had a lot of anger in me at that time. It was 2010, and I was fifty years old. I found that I had a disease that could kill me in a short time, and there was no cure available.
At about that time my brother was diagnosed with cancer. I would not wish what he has been through on anyone. But people understood cancer, there were options from surgery to chemotherapy, and there was a lot of support from many places.
I looked well, there was no external sign of anything wrong, just a middle aged man who got out of breath easily. Still, at least I had a pamphlet!
If those last few paragraphs infer that I was angry, I think that is correct. Not because I was ill, but because my wife and I felt alone and scared with no support.
Apart from my wife, it was quite a while before I told anyone. Even when I started to tell people a common response was to do more exercise and get fitter. I don't blame them, there was no awareness and I didn't have cancer...
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