Monday 4th November - My Oxygenated Life

I'm nearly at the end of a series of hospital appointments; last week was a trip to London to see the ILD (interstitial lung didease) consultant  - 'carry on as you are' was the conclusion. 

Today was a home oxygen follow-up at a local hospital for the 24 hour oxygen prescribed at the beginning of September. It involved the usual tests; a blood sample from my ear and 6-minute walk tests, walking up and down a length of corridor for six minutes to check the distance I can cover and the effect on oxygen levels and heart rate.

In the event I stopped the first test at 4 minutes, using 6 l/m, as I could feel a tightness beginning in my chest. I'd been told previously by the heart specialist that I can keep going until I can feel the tightness starting, and then I must stop and I catch my breath before carrying on. 

Second time around, using 7 l/m I walked for nearly 6 minutes before I said I had to stop.

I learned some useful information; 

when I'm active I should aim to keep my heart rate below 100 beats per minute and my oxygen saturation above 88% 

it's OK to cross these boundaries for a very short period of time as long as I then allow plenty of time to recover. 

These levels will protect my heart from having to work too hard to get the oxygen in my blood pumped around my body.

(By the way, this is specifically for people like me with Pulmonary Hypertension and severe Pulmonary Fibrosis. I don't think it applies to 'normal' people!)

The respiratory nurse also commented on how much better I look now. 'Your colour is much better; your colour was a bit grey and washed out'. Yes indeed. She's not wrong; I had got so tired from trying to get some clarity and useful advice on how to manage my oxygen needs, as well as battling through on lower levels of oxygen than I actually needed.

Also, the respiratory nurse was the first person who was able to tell me which moisturising creams I can use. I knew it was really important to avoid creams with parabens - paraffin type products - and not to use vaseline type products if you are on oxygen. But which ones could I use? I'm not sure of the details, but these substances react with the oxygen in an unhealthy way. The only advice I ever got was 'Read the labels'. Have you ever tried to read the labels on the tubes and understand what the ingredients are?

She suggested I switch to Aveeno products. I am using their moisturisers, cleanser and shampoo. My skin had become very dry and flaky; now it is so much better.

Next week I'll have an echocardiogram at a local hospital, and them I'm 'done' until after Christmas, I hope!