Pulmonary Fibrosis and oxygen support

[Teenytinyvoice]

A family member has recently started using oxygen during the day (in a little backpack), in addition to the overnight oxygen they were already using.

Clearly this is an indication that their condition has deteriorated, but one of my friends implied that once oxygen is needed during the day life expectancy is probably short. The family situation is complicated and intense, and I can’t have all of the conversations I’d like to be able to have. I will be seeing the family member in the near future, and I’d like to be somewhat prepared.

Is my friend right, or is it more complicated than that? If anyone can share their experiences I’d be really grateful so I can mentally prepare myself, and the discuss with my children in an appropriate way.

It very much depends on the individual. People with PF can manage with oxygen for years - but can also succumb to a chest infection in a matter of days.

Prognosis isn't an exact science and with PF can be very difficult. Action for Pulmonary Fibrosis has some useful information - it's also worth looking at some of the cancer charities info around talking to children about cancer - the disease is different but the advice is similar.

It means the disease has progressed but that the doctors think there’s a reasonable chance Oxygen therapy can keep things from getting worse. I know several people in my family who spent nearly 10-15 years on oxygen support. One used to even go on holidays with his cannisters right up until he was 90. So without knowing the detail of his individual treatment plan you can’t really know his prognosis.

Thanks!
It had already occurred to me that any respiratory infection this winter would be a very bad thing.

I will probably have to resign myself to the uncertainty. Thanks for those info pages, I’m hesitant to google as it is so hard to know what is reliable info.

Thanks @Ozanj

The relative lives abroad and visits the UK occasionally. It’s good to know that it isn’t a given that this is the last visit.

It’s possible we’ll be able to have a conversation during the visit, but not a given with the children around!

@Teenytinyvoice

Thanks *@Ozanj*

The relative lives abroad and visits the UK occasionally. It’s good to know that it isn’t a given that this is the last visit.

It’s possible we’ll be able to have a conversation during the visit, but not a given with the children around!

In many countries doctors provide oxygen therapy earlier than they would in the Uk. For example in Europe, India, USA, so yes it’s def not a given this will be the last visit.

But if you are worried is there scope for you to travel to them?

Yes absolutely, they live in a European country with good transport links. Aforementioned complicated family dynamics means it won’t be straightforward, but it is doable. Certainly for me, even if not the whole family.

I guess if everyone had said, once you are on oxygen it’s x months or so, I’d have a different conversation with my children. It’s reassuring to hear it can be a management tool rather than always being end of life support.