Voices from the UK's pulmonary hypertension community

It’s all been a bit of a rollercoaster

Jane is 64 and lives in Surrey. She was diagnosed with idiopathic pulmonary arterial hypertension in 2018.

“My mother died just before the first lockdown and the grief was very raw when all the restrictions and shielding started. It made things harder. 

Because I was shielding, I couldn’t visit my father who lives close by. I would normally visit every day, but he was now living on his own, bereaved and isolated. It was heartbreaking. 

It’s all been a bit of a rollercoaster.

Physically, it has had its ups and downs and I think some of the physical difficulties have been caused by mental anxiety issues.

I was initially really panicked by the effects of covid, the possibility of being hospitalised (or worse), worried about getting medications, and it took a while to get shopping deliveries sorted. That impacted my mental health which in turn affected my physical health for some time.

I had been doing regular six-minute walk tests in my garden and the distances decreased. My mobility was certainly decreasing because I wasn’t going out anywhere. That only added to my anxiety. 

I was waking in the middle of the night, and it was then taking me several hours to get back to sleep – which made me feel really rubbish the next day. 

I think during the early stages of the pandemic, I just lost my perspective. I couldn’t get motivated to do anything except gardening. I normally love doing sewing and embroidery but I just lost my focus. 

I did worry at times that my PH was getting worse and when I was able to have a face-to-face appointment at my specialist centre in the August of 2020 it was so reassuring to discover I was still stable. 

As it was for everyone, the first lockdown was very hard, but things did start to improve and there were some joyous moments too. I remember sitting in the garden one Saturday morning and [because everything had shut down] all I could hear was bird song and it was just delightful.

When shielding was paused and I was able to start going out in the car and for walks in the countryside, it made a huge difference to my mental and physical wellbeing.

My physical strength and my six-minute walk tests improved, and I felt so much better  –  mentally and physically. 

I had no hesitation about having a vaccine and I think the speed with which they got them out was incredible. It was so efficient. It was amazing really. 

My anxiety is now much better but I’m still going to be cautious and not take too many risks. Covid hasn’t gone away, and I when I did contract it, I was very grateful to be able to get antivirals through the Panoramic* study. They made a huge difference to my recovery very quickly.

My family, my dog, and my garden, have all helped me enormously over the last couple of years and kept me sane during lockdowns. 

I am grateful for the support from the PHA UK, my specialist centre, and my GP surgery. They have been fantastic throughout.”

~Jane told her story to the PHA UK in the summer of 2022~

* Panoramic is a UK-wide clinical study, sponsored by the University of Oxford and funded by the National Institute for Health and Care Research, to find out in which people new antiviral treatments for COVID-19 in the community reduce the need for hospital admission and get better sooner.

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