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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

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2 November 2018