Voices from the UK's pulmonary hypertension community
Ashley Gunn and her husband Gordon live in Motherwell, Scotland, and have two children. Their youngest, Zac, was diagnosed with pulmonary hypertension a few months before the pandemic began.
“Zac was diagnosed with PH in September 2019, and when the pandemic struck, he had only had his Hickman line in for three months.
When he was first diagnosed, it was very intense, and very stressful. Then when the pandemic hit, I can honestly say it was the most terrifying thing ever, and it added so much pressure on to us as a family.
We were so worried about Zac catching covid. We basically cocooned ourselves away; I wasn’t working, Gordon wasn’t really working, so there wasn’t money coming into the house. As much as it was terrifying, we were the safest we could possibly be. And we had to try and not let the kids be scared.
It was actually amazing having the four of us in one house. As much as pulmonary hypertension is at the forefront of our minds, the boys were able to be themselves during that time.
Zac was allowed to be a wee boy, there was no stress involved with it, it was actually nice.
You have to take the positives from situations, because if not, you’ll just live in a sad bubble. As the mother of a child with pulmonary hypertension, the beginning of the pandemic was terrifying. But it’s also been a blessing.
Of course, the pandemic has been terrible, but for us as a family it was time together that we would never get back – just me, Gordon and the two boys.
It was hard not letting our parents into the house though. And as restrictions started to lift, if I went out, I’d get undressed by the front door, scrub myself in the shower, and only then would I go upstairs. If I could have drunk bleach to make sure I wasn’t bringing anything into the house, I would have done.
We were very paranoid at the beginning, but less so as time went on.
Zac did end up getting covid and then pneumonia a few weeks later. He fought both and was ok.
Now, in August 2022, the two boys are flourishing, because we’ve allowed them to. If we had kept them in that cocoon of sadness and worry, it would be different.
For example, we used to go for walks in the woods [during lockdowns] and Jacob [my eldest] would be worried about people walking towards us. We’d have to tell him it was ok. He was only three at the time, and we had to stop having the news on because he would zone in on how many deaths there has been.
That was the hard part, trying to shield them from it all. We had enough trauma in our family already.
We don’t even say the word ‘covid’ in our house anymore.
~Ashley told her story to the PHA UK in the summer of 2022~
Life is short, and that is exactly what the last couple of years have shown us
The lack of control is probably what I struggled with most
I wasn’t willing to go back to work and put her in danger
Every corner I turned during the pandemic was scary, but my specialist centre gave me hope