Tuesday 2 April 2024

Tuesday 2nd April My Oxygenated Life Part 2

 And here's the rest of the journey up until today... (following 9n from yesterday's post)

March was a tough month. Sometime after 2013 I was prescribed what is called a 'rescue course' of antibiotics, two weeks of coamoxiclav, kept at the back of my mini-home pharmacy, with instructions to take it whenever I started to feel as though a respiratory infection, bacterial or viral, was creeping up on me. 

This is standard practice for many pulmonary fibrosis patients. The reason is, I think, that should any type of lung infection take hold, it will increase the scarring on my lungs, and because of the immunosuppressants I take I am very vulnerable to any bug or lurgy floating around. 

In fact my work as a peri music teacher and piano teacher was probably the worst environment I could be in! Although spending several hours every day singing and teaching singing games and a variety of instruments was also very good for me.

All that came to an abrupt end in March 2020 of course, although I had given notice regarding all my school teaching by then anyway.

We've been 'isolating' ever since; neither of us have had covid which is just as well. 

Fast forward to March 2024. After having a cold for two weeks I started the rescue course. One of the side effects of coamoxiclav is shortness of breath; I remembered this from the previous occasion back in August last year, but this time it was very much more severe. 

I had a prearranged appointment with the local hospital's respiratory clinic to arrange for a routine ct scan, on the grounds that if it could be done locally that would save trekking up to the London hospitals where the specialist clinics for Pulmonary Hypertension, Scleroderma and Pulmonary Fibrosis are.

The consultant was incredibly helpful, and there was no problem with arranging the ct scan.

He is also recommended arranging for a Home Oxygen Assessment, and, on hearing that my blood oxygen levels plummet tp 70% (or worse) going upstairs to the bathroom or bedroom, is also arranging for Occupational Health to come and assess what I need.

'If you are not moving to a bungalow of flat Very Soon, I advise you to get a stairlift' he said, 'and continue to exercise extreme caution when meeting people, and avoid going into buildings even wearing a mask.'

Actually, I don't mind the idea of 24/7 oxygen support  and stairlifts as much as I thought I would. It is a huge relief to give up the personal effort of maintaining oxygen levels through my own efforts. Better oxygenation also keeps me feeling well and cheerful; I've mentioned before that lower levels make be sad, tearful and grumpy. 

I finished the coamoxiclav course yesterday and that should help. I have been using oxygen support downstairs and the little lighter weight Inogen to help me up the stairs for several days and everything is so much easier. 

'Oh, how nasty for you,' said a member of the family, about 24/7 oxygen. No, you needn't feel sorry for me. I don't want to sound like some kind of pink frilly Victorian kind of sentimental heroine in an improving story for children, because I'm really, really not, but I'm OK with this. (At the moment, anyway!)


  1. So much depends on a person's attitude to their debility. My Mum accepted the necessity of oxygen and her stair lift, and was so grateful for the free NHS provision. My (young) daughters immediately christened it the Bat Lift after the Superhero's gadget. They certainly missed their joyrides on it when. my parents retired to a bungalow. I know you will be strong in mind and spirit, even if your body is weak. Much love πŸ™❤️πŸ‘πŸ˜Š

    1. Yes, I am indebted to the examples of three strong women; my grandmother, my mother and a friend who is about the same age as me and was diagnosed with MS at about the same time as I was diagnosed with scleroderma. All three coped with courage, dignity and positivity to the challenges they faced.

  2. I was diagnosed with mild Pulmonary fibrosis about 7 years ago, and thankfully it has got no worse. I have the tests annually and always panic beforehand, but the last one was better than I expected. You could occasionally indulge in a little Victorian moment? Do you have a fainting couch?

    1. I shall pray that the PF stays mild for you; I didn't change significantly for nearly 20 years, and Summer tests always came out better than Winter ones.
      I dream of having a chaise-longue to drape myself on, with a revolving bookstall close by....