Close

Last year, our helpline stars answered 20,000 calls! But sadly, there were some people who couldn't get through to us. With your support, we can give more people the help they desperately need. 

Donate now

Why I'm still making my mind up about oxygen

John has IPF and is considering oxygen therapy, but it's a lot to think about. 

John is considering starting oxygen therapy for IPF

I have IPF. It’s an incurable progressive condition, which means that the only thing medication can do is slow it down.

The prognosis isn’t great, and if I lose my lung function, I’m not getting it back. Any scarring I get on my lungs, is for now, irreversible

My journey started with a routine check-up. I was a healthy person, playing badminton and tennis and cycling regularly. But I had an unexplained cough that just wouldn’t go away.

After many tests, including a lung biopsy, I finally found out from a multidisciplinary team that my results were consistent with IPF.

Even though I had prepared myself for this outcome, as my father died from a fibrotic lung disease in 1999, it really shocked me.

There are only 2 approved medications to help slow the condition and I have been on both – the first, Pirfenidone, was not as effective as hoped and so I was switched to Nintedanib.

I believe in self-management

I’m trying really hard to stay active, and I still work, but only part-time. I’m determined to get as much control over my condition as possible and believe in self-management.  I’ve taken pulmonary rehab at my local hospital to maintain my strength and fitness, I take walks with my wife, do yoga at home, and travel abroad for holidays. 

But my oxygen levels are slowly dropping and my stats are on the borderline of someone who would be considered for oxygen therapy.  I know that at some point, I’ll have to seriously consider it.

I feel conflicted

It’s so much more than just a medical question. 

I know that on one hand, it’d be the most sensible option, keeping myself safe and protecting me from pulmonary hypertension and coronary conditions. But on the other hand, I feel conflicted.

What if I become overdependent on it? Will I still put as much work into keeping fit and active if I can use oxygen instead?

I know putting it off for too long could have big risks which are to be avoided at all costs. If I end up unwell as a result of lack of oxygen, it could damage my chances of being selected for the lung transplant list.

It's been so useful to hear that Diz had similar concerns to me before she started using oxygen. Like her, I feel concerned about how it might label me as vulnerable.

It was good to talk it through with someone who’d been through it, and who had similar concerns to me.

It's a lot to think about 

It’s so much more than just a medical question. There are the practical aspects, like will my wife and I need to adjust our house, or move to a bungalow? Will I still be able to play badminton? And there’s also the psychological aspects and the social implications.

"With any chronic illness, it’s not the destination that’s important, it’s the process."

But of course, there are so many benefits to think about too. 

It seems in one way, oxygen therapy opens doors, and in another, it closes them. Either way, I am preparing myself to have this conversation with my health care professional. 

With any chronic condition, it’s not the destination that’s important, it’s the process. You constantly have to reassess what ‘normal’ is for you, come to terms with the new 'normal', and adjust your own expectations, and be able to make a well-informed decision that is the best one for you.

I hope my story can help people work through their own concerns.

Find out more about oxygen therapy


Comments

Hi John,  I was forced in to oxygen therapy at the age of 39. I was devastated at the thought that everyone would see I was disabled. Not to mention that I would have to carry that ugly bag on my back everywhere I went. I worried about how my little boy would feel about it and what his friends would have to say about it. Well I can truly tell you that it has completely changed my life for the better. I'm able to do so much more and life is no longer on hold. I keep myself as fit as possible the same as you, but I'm able to push my body further as a result. when you have a life limiting condition it is important to make the most of the time you have. Having oxygen will just help you live your life at full throttle. 
Your blog and that of Diz are a huge step in enabling a public discussion on the use of oxygen and the real questions patients with severe respiratory conditions have, but cannot always discuss nor share with anyone. Well done!
Trying to put it of for as long as I can!
Like you my says just keep dropping so in a way I had no choice but to go on oxygen therapy,but was there an option no did I want to no ,now I have to make the best of what I've got.

Add new comment

CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
2 November 2018