Voices from the UK's pulmonary hypertension community

Stories

We spoke to over 30 people affected by pulmonary hypertension, some on camera, to discover their personal experiences of the COVID-19 pandemic.

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

Katie

The lack of control is probably what I struggled with most

Sarah

I wasn’t willing to go back to work and put her in danger

Mark

Every corner I turned during the pandemic was scary, but my specialist centre gave me hope

Julie

The pandemic has made me more aware of having PH and it’s made me feel more scared about my condition

Sindy

We took the decision to live apart

Laura

As the mother of a child with pulmonary hypertension, the beginning of the pandemic was terrifying

Ashley

"The pandemic has proved very distressing"

Lynette

I lost a lot of hope

Linda

The post was disinfected, everything was disinfected

Jayne

I was petrified of Jayne getting covid and I still am now

Liam

It brought back the fear I had when I was diagnosed with PH

Julie

Our baby came home on the day that regional lockdowns began

Catia

We lived by the rules, as best we could

Anne

I think God looked after us well because of what we were doing

Adrian

It’s all been a bit of a rollercoaster

Jane

I’ve really struggled with the unpredictability and inaccessibility around medical appointments

Jo

We didn't want it to take over our lives

Paula

I didn’t realise how callous people can be

Emma

I couldn’t switch off from work because it was in the house

Lou

I locked myself in and got on with things

Mike

Looking back, I wouldn’t do anything differently

Chris

Ten weeks into shielding, my dad passed away

Emma

I’d have to get up at 2am to do jigsaws and drink chamomile tea

Anna

I feel like we are the lucky ones; a covid success story

Amy

I thought covid was going to rob me of the end-of-life I had been planning for

Gill

We agreed we were going to see things through, whatever it was going to take

Dave

I didn’t want my condition to define me as a person, but the pandemic has made that happen

Sonia

Being told I was clinically extremely vulnerable was nailing it home that I’m really ill

Shirley

I’ve missed my hospice care

Fiona

It was a bit like wartime; you just had to do what you had to do

Ali

I returned to art whilst shielding, and it’s been amazing

Myra

When I was told I had to isolate, I instantly felt alone

Victoria

For us as a family, technology has been really important

Lorna and Emily

The start of the pandemic, for me, was a rollercoaster

Paul

Those early days were emotionally very draining

Suzy