Voices from the UK's pulmonary hypertension community

We lived by the rules, as best we could

Anne*, 78, lives in Sheffield. After being diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) she had a pulmonary endarterectomy in March 2021, just after the second winter lockdown.

“I used to play badminton, table tennis, and do a lot of walking. But in 2019, before the pandemic, I started getting breathless. After various tests, before the end of the year it was discovered that I had CTEPH.

When I was offered the surgery, I didn’t have to think hard about it. I knew the operation would give me a chance of getting better. But then lockdown came, and I assumed the hospital would be stopping the operations.  

However, in March 2021, two months after my first covid jab, I had the surgery.

My husband drove me down from Sheffield to the hospital in Cambridge and left me at the door. I didn’t see him again for a fortnight.

We purchased a new mobile phone for me so that we could FaceTime, so I was able to speak to him and the family. 

The doctors were in PPE (Personal Protective Equipment), and it wasn’t frightening, but it was hard. When someone’s mouth is covered you can’t always understand what they are saying.

When I was discharged, my husband and my daughter drove down to collect me, and I began my recuperation at home. 

Later that year, we finally made it up to our holiday home in Scotland. It helped me [through everything] knowing that we would get there again after so long. I’d lay in bed at night thinking about it. 

How did we cope over the last couple of years? We’ve just got through it all. We’ve done what we can, when we’ve been able to.

A positive attitude has helped, and we’ve done it together, with family too. 

All through lockdown, when they were allowed, my daughter and her husband would come and stand outside. If it was bad weather, we’d stand in the garage with the garage door open, and they would be on the pavement. 

We lived by the rules, as best we could.

We watched the news, and the daily briefings, nearly every day. It gave us confidence that they had things under control. Once they started injecting people, it changed things. 

I can’t fault the NHS [throughout all of this]. Every time I’ve been in hospital, they have been brilliant.

I recently was able to play badminton again for the first time, even though I wasn’t able to move around the court. Table tennis is easier!

And I recently went to the Sheffield Arena for a concert, and it was fine. People kept their distance; although there were no masks, I didn’t feel like we were all breathing on each other. It felt good to be doing something ‘normal’ after all this time.”

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

*Name has been changed on request 


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