Oxygen changed my life, but it was hard to get used to

Diz has been using oxygen for 4 years, but it took her a long time to decide to try it. Now, she's feeling much better, and her quality of life has hugely improved. 

I've had sarcoidosis since I was a medical student, but it started to affect my lungs when I was about 26.

I’m 75 now, and since then, I’ve had relapses much of my life. Steroid treatment used to work, but now my symptoms respond less well and I'm very breathless.

For the past 4 years, I’ve been using oxygen therapy. 

I developed pulmonary fibrosis, which gave me a whole new set of difficult issues to deal with. I was in and out of hospital with chest infections and respiratory failure.

During one of those admissions, I shocked to find that even with mild exercise, my oxygen levels were in my boots. 

My doctor suggested oxygen therapy, but I was so resistant - even though I'm a doctor myself!

I felt it would be a badge of my poor health, and that tubes going into my mouth or nose would label me in public as vulnerable.

Once you can finally get over your doubts, the benefits are so resoundingly clear. 

I knew I was being illogical but the emotional aspect of oxygen was quite something else. 

It took me a long time to take it seriously

I was told that not being on oxygen was putting a serious strain on my heart, so I decided I had to try and take it seriously. That took quite a long time. 

The decisions I faced were a bit like the ones that John is facing at the moment

It was hard to get used to. It took me about 6 months. But with support from my husband, I finally began to get on with it. I started off using it just at night, in the privacy of my own home. Then I eased myself gradually into using it outdoors, at my own pace. 

In the end, it was wonderful

Diz is feeling better after starting oxygen therapy

Now, I have a portable oxygen concentrator on wheels that I use for things like shopping or getting out and about - it looks like a little shopping trolley on wheels. It can go in a backpack for country walks.

For nighttime use at home, I have a bigger static concentrator.

In the end, it was wonderful and changed my life. And I couldn’t believe how readily everybody accepted it.

From that point on, it was easy. I couldn’t believe how much more I could do, or how much faster I could do things.

My quality of life has hugely improved, and I'm now able to enjoy socialising with my family and friends at the cinema, theatre, concerts and on trips with my husband. My grandson now calls me 'Supersupergran'!

I'm retired, so I never needed to use oxygen in my working life. But I understand that if you're still working,  there would be are additional worries about fitting oxygen therapy into your working life. 

I don’t think my story is unique

I don’t think my story is unique. Oxygen therapy is such an emotional subject, and being resistant is a very common reaction. People can be really worried and feel embarrassed, but it has the biggest upside - making you feel so much better!

And once you can finally get over your doubts, the benefits are so resoundingly clear, you begin to wonder what took you so long. 

Find out more about oxygen therapy


Comments

I really cannot understand why anyone is reluctant to accept oxygen therapy if it recommended by a health professional. I have been on O2 for 4.5 years and actually asked to be assessed before my formal diagnosis as I was so breathless and my sats were low. I did have a headstart as my husband has been on O2 since 2010, but have never worried about going out wearing a cannula. I actually look upon this as a badge of pride as I can be an active member of my community, go out, exercise, join in church and community activities which would not be possible without O2. Would those with doubts refuse any other precribed medication which could prevent other serious complications, or would you refuse a cast or crutches if you broke a limb?
Thank you. Sometime in the not too far away future I shall have to make the same decision. Your experience and benefit is very valuable.
I had no idea, Diz, that you had so many doubts about using oxygen. We take it now that it is just part of you and don't give it a thought when we are together. Advice to those thinking about it from a friend of an oxygen therapy beneficiary - go for it!! Definitely!
Diz has been a long time friend of ours, must be nearly 50 years now! She always showed determination and spirit when suffering from her sarcoidosis and also compassion in her NHS Consultant role. I was diagnosed with IPF just over 2 years ago and know that I will have to consider Oxygen Therapy sometime. Chatting to Diz at a party a few weeks ago, I found my concerns about taking this step were much eased.
Diz, thank you so much for sharing with us the reality of using ambulatory oxygen therapy. Yes it does take an enormous amount of courage to accept being seen in public with oxygen tubing and device, and thus a lot of gradual encouragement to overcome emotional issues.
Diz, I am a mirror of your story. It was refreshing to read and made me feel, I am not alone in how I felt to, when told I need to use oxygen. Since I developed PF like you. 
It was so interesting to read about oxygen therapy. So pleased that you took the plunge and are now able to live a good quality of life. I'm sure your story will motivate others.
I'm on oxygen and I find using the tanks when out and about heavy and aleays worry they will run out, can you get portable concentrators on the NHS? Thanks

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1 October 2018