Monday 1st April - My Oxygenated Life - Part 1; 2000 - March 2024

 I thought I'd start a series of occasional posts about my pulmonary fibrosis journey.  I thought if I titled them 'My oxygenated life' it would be easier for people to skip over them if they weren't interested; I'm including it because this blog is called 'A letter from home' and was originally started as a sort of round robin letter to my children and to friends in Canada.

That isn't to mean that it is private! All friends who find my random and frequently typo-ridden ramblings interesting or entertaining are very welcome! And if anyone else is facing up to 'an oxygenated life' then I hope they will find this encouraging. 

So, pulmonary fibrosis. My understanding (DISCAIMER; do not in anyway think that I am any kind of expert) is that it is a pretty rare condition where the immune system causes scarring of the lungs. This scarring prevents the oxygen you have just inhaled from  transferring into the bloodstream, reducing your blood oxygen levels. At first, it just means you get breathless going up hills or with exertion. You are monitored every year with lung function tests to check how things are.

What causes it? Often, there is no answer. In my case I already had an autoimmune disease called scleroderma, diagnosed partly because of being very breathless when I called into my GP at her upstairs surgery, so this was regularly reviewed as well.

It seems to me that if your situation is one that progresses slowly things continue pretty much in the same way for years. Indeed I began to wonder if all the time, money and resources spent on annual tests and reviews wasn't a hugely wasteful. 

But every plateau, as I learned in geography lesson at school, has an edge somewhere and in due course, during 2012, I went over it, down to the next level. Thanks to the vigilance of the specialists they took action.

So, at the beginning of 2013 I  had two overnight stays in hospital for tests. 

Well, I went in with just three packets of medicine for blood pressure and heartburn, and came out with immunosuppressants, prophylactoc antibiotics, steroids, a stronger heartburn prescription and night time oxygen. That was not what I expected! 

Enter the home oxygen concentrator, supplied and maintained by the health service. They even pay for its electricity! 

This isn't identical to mine, but gives a very good idea. It is about the size of a bedside table, and chunters like an air-conditioner. I have to say I was dismayed, and never thought I would get used to it, but now neither the noise nor the oxygen cannula are any problem. 

Staying away from home, though, proved pretty impossible. So we bought an expensive Phillips SimplyGo portable oxygen concentrator which would would be able to supply the 1 litre/min rate I needed.

This has travelled with us when staying in holiday homes, with friends, to Canada twice, to the Netherlands and on a river cruise in France and proved an absolute Godsend. It is similar in size and weight to a cabin case packed for a weekend away - manageable but pretty hefty all the same! When we have taken it on a flight it fitted it into the overhead lockers. Himself doesn't find it too heavy to carry on its shoulder strap, but I find it much easier to drag it on its little trolley.

More recently we bought an Inogen G5 concentrator which I used when we were out and about. I can't use it overnight as it delivers the oxygen in pulses, in other words only when I inhale, whereas the other machine will deliver a steady flow all the time.

It weighs about the same as a heavy handbag and comes with a shoulder strap and is easier and lighter to carry than the SimplyGo. 

Along the way I have also added extra heart medicines, as this disease can cause pulmonary arterial hypertension, and calcium and vitamin D supplements and treatments for osteoporosis to my mini home pharmacy. 

And that was how things stood until somewhere in the middle of March...