Raya Mynot was diagnosed with PAH as a baby, and here she shares her experiences of being on oxygen therapy – her helping hand for the last 24 years…

“Pulmonary hypertension comes with its fair share of symptoms, a couple of them being low saturations and shortness of breath. Many people with PH, including me, have to use oxygen to help with this.

I have been on oxygen since I was diagnosed at one year old (I’m now 25!) I mainly use my oxygen overnight whilst I sleep, but in the last ten or so years I have been using more during the day as I started suffering with migraines.

During school I always had oxygen in the medical office, and this would also get taken on any school trips I had. I don’t think I ever needed to use my oxygen during school time itself though. Although I got short of breath quite often, my body was always really good at recovering quickly afterwards.  I know that all my closest friends knew where it was kept during my time at school. The teachers also were told, but I can’t say they were great at retaining that knowledge, as they had too many other things to think about! A couple of my friends also knew how to turn it on in case I ever couldn’t.

I didn’t really start getting migraines until very late in school, and my mum would usually be there really quickly to pick me up, so I didn’t need to use the oxygen at school. We don’t really know why I need oxygen when I get a migraine, but if I don’t go on oxygen I start to lose feeling in my arms and legs, and I can’t recover from the actual headache properly without it. Even though my saturations don’t drop during a migraine, I always need oxygen.

My normal saturations sit between 70%-80%. However, during activity or even just walking, they can go as low as 45%. I’m really lucky that my body is able to recover back to normal sats really quickly, so I don’t use my oxygen for this, although I think my mum would prefer that I did sometimes!

If I’ve had a particularly busy or active day, by the time it gets to evening time, I can feel my body is ready for oxygen. My chest is a little tighter, I get out of breath more quickly, and sometimes I’ll have a headache. My hospital did say a little while ago that they think I would be okay without oxygen overnight if I wanted to try, but I declined because it really does give me a boost, and if I ever forget to put it on (very rarely) I can feel all day that I haven’t worn it.

Even if I’m particularly tired during the day I’ll put it on for a little while and it can really make me feel more awake again! I will say though, sometimes wearing oxygen every night does cause my nose to get sore, so sometimes I wake during the night and take it off, but I do this without even noticing. But as long as I’ve worn it for the majority of the night I do feel okay the next day, and I feel very lucky that I can do that, because once it starts hurting my nose I cannot get back to sleep with it on!

I honestly really don’t mind having to use oxygen, day or night. It doesn’t feel inconvenient at all. My partner Jade doesn’t mind it at all either. I sleep on the side of the bed nearest the door so that my oxygen doesn’t have to go all over our bed. Jade also of course doesn’t mind carrying it round with us when we go out. It’s never been a problem, and I’m so grateful for that!“