Voices from the UK's pulmonary hypertension community

Life is short, and that is exactly what the last couple of years have shown us

Katie Eaton is 37 and lives in Bolton with her partner and son. She was diagnosed with idiopathic PH in 2008.

“I went through the mill with the pandemic to be honest. My PH got worse just before it hit and I ended up in hospital the month before the first lockdown with what was thought to be a respiratory infection, but having since tested positive for antibodies, I’m sure it was actually covid. 

I was still off work sick from my job as an occupational therapist when shielding came in. My partner Ben and our little boy Shane all shielded together; none of us left the house or went shopping, or anything like that. 

We did the garden up to try and keep ourselves occupied and got some chickens. I also painted my living room, which I probably shouldn’t have done because I was pretty ill, but I was determined. 

As a family we were used to spending lots of time together anyway, but I did find the home-schooling difficult. My partner is a teacher, and he was working from home, so everything fell on me. 

I went back to work as an occupational therapist at my local hospital in the August of 2020, when shielding restrictions lifted. Because my antibody test came back positive, and I’d had all the covid symptoms back in February, I felt slightly more reassured by going back to work on the wards. 

I do think my health deteriorated [whilst I was shielding] but because I wasn’t doing normal day-to-day stuff, it wasn’t as obvious.

Going back to work, I really noticed it. It was just so difficult, but I ploughed on working full time. 

In October 2020, I was sent home from work for shielding again [during the November lockdown]. That time was really tough as my health was so bad. I ended up having really bad heart failure and swelling everywhere. 

I was glad to have hobbies like reading and making things – including clothes – as those sorts of things kept me going back then. I used to be a photographer before I became an occupational therapist, so I’m quite creative I suppose. 

It was pretty hard to stay positive. Especially in that second lockdown, I was really low. 

I was able to access counselling from the summer of 2020, and that continued for almost a year. It was good to speak to someone who I wouldn’t upset. My partner and I are very open with each other but there are only so many times you want to go on about something. 

My son has been so important throughout the pandemic, I don’t know what I would do without him. He’s kept me occupied – sometimes not in a good way! – but he is really good. 

We had good fun together during the first lockdown but that wasn’t really on the radar during the second one because I was so sick. That made our relationship a bit trickier because he was used to me being able to do a lot more, and I felt guilt and frustration about it. 

In the January of the second lockdown, I went into hospital to start on IV (intravenous) therapy for my PH. It was a really worrying time for him as I was in for three weeks, and although they let me see him away from the ward, I had an IV stand with me, and you could tell that he didn’t really know how to take it all. 

Looking back on the lockdowns, some bits were really nice, especially during the first one. But there have been parts that have been pretty hard and distressing, and coming out of the pandemic, I’ve found it hard that people don’t understand that you don’t want to be as sociable.

I have felt some pressure to go to back to ‘normal’ really quickly, especially with my job. But because the NHS were so strict on masks, gloves, and cleaning everything down, I don’t think it was as bad as it could have been. 

I still get really upset about the way covid and those who are clinically extremely vulnerable are discussed in the media, as I feel it’s been a divide between those who are ‘well’, and those who are not so well.

I’ve not got an illness because I’ve done something to acquire it, not that that should make a difference anyway, but anyone could be diagnosed with something tomorrow. 

I don’t think people realise what they are saying and how damaging it can be. 

My family has definitely helped me over the last couple of years. My partner is amazing and my little boy is brilliant too. 

We were looking to adopt again because we adopted him, but we’ve decided that’s not a good idea now. He’s been through so much in the last two years and has been so resilient.

In February of 2022, I caught covid again, so I’ve had it twice now, and that’s made me feel more at ease – especially as I’ve had all my vaccines too. 

I think now I’ve just got to try and live a bit more because life is short, and that is exactly what the last couple of years have shown us.

We initially interviewed Katie over the phone, in May 2022, where she shared the experiences above. A few weeks later we visited her at home, to record the video below.


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