Voices from the UK's pulmonary hypertension community
Jayne Venables, 53, lives in Kent with her husband Liam. She was diagnosed with pulmonary hypertension in 2014.
“In general, I would describe my experience of the pandemic as being okay really.
My husband Liam and I were used to not going out and mixing much anyway, and during the first lockdown, we didn’t really notice a huge difference.
The only changes were not seeing close friends and family, and having shopping delivered.
Before the pandemic, I did sometimes feel I missed out by not being able to go out and do things [because of my PH]. But once the lockdowns came and nobody was going out, it was like ‘now you see what our life is like all the time’.
Both of the kids were home as my son Jack (17) got sent home from the army and my daughter Lucy (15) was not at school. It was quite nice doing a bit of home schooling with her and as teenagers, because they were usually off doing their own thing, it meant we had another few months with them. It was kind of like time was given back to us.
The first lockdown was definitely easier, as we could go out and potter in the garden, but once we got into winter it was a lot harder.
We watched a lot of Netflix and did a lot of FaceTime and WhatsApp calls with family. In a way, I probably spoke to some of my sisters more than I normally would have done because they are usually so busy with their own lives.
After the Christmas 2020 lockdown we decided we would just go and see my mum and dad, and sit four metres apart in the garden, and be done with it then. We weren’t breaking any rules, and there is only so long you can go without seeing family and friends.
I’m so glad we did that as we lost my dad last year.
Not seeing family and friends was the biggest challenge, plus dealing with the uncertainty around my daughter’s GCSEs. Things seemed to change day-to-day in that respect.
My physical health was definitely affected because my walking dropped like a stone [when shielding came in]. I’m trying to get my walking distance back up now, but it’s definitely nowhere near where it was.
I do think I’ve lost confidence physically. I think ‘if I do this, I won’t be able to breathe, and then what happens when I can’t breathe?’
It ticks around in your mind like an anxiety thing, jumping from one thing to another. It’s just finding that confidence again, and I will, but it will take time.
It was really scary being told I was clinically extremely vulnerable to covid.
For a long time, I worried about touching things. The post was disinfected, everything was disinfected.
When shopping deliveries came, I would wear gloves, and clean all the items when they came in. Then I found myself cleaning the bleach spray that I cleaned the shopping with. I remember thinking ‘this is stupid, it needs to stop’’.
I slowly weaned myself off doing it. One week we didn’t clean the tins, we left them outside for 48 hours instead, and because nothing happened, I thought ‘actually, it’s ok’.
I was really worried about catching covid because everything we had seen made it feel like if you had PH and got it, then you would die.
When things started opening up again, I was pretty nervous. I would go to the shops, but at the last minute I would decide to stay in the car. I’d want to go, but then I would be too nervous.
Once we started to get a little bit braver, we would drive to the beach. Even if we didn’t get out, we’d just sit and look at the sea and that definitely helped.
Having the vaccinations made a big difference and I remember being in tears with relief when the first one was released.
By the time I had my third and fourth, I was a lot more relaxed about going out and about. I didn’t have any concerns about having them. The way I looked at it, [as people with PH] we take so many medications anyway and we don’t know what’s in them.
So, there’s no point thinking this one is going to kill me because it’s got 5G in it or something. We’re not scientists, we didn’t design them. If they say take it, I’m going to take it.
I think I do see things differently now. My attitude is to seize the day. If you can do it, do it now – because you don’t know what’s going to happen.
My PH care through the pandemic was really good.
My specialist centre switched to video calling quite early on and because it’s so far away from me, it was actually better in a way. It saved on the costs of petrol and parking, and instead of taking the whole day to have a clinic appointment, it was only taking 20 minutes.
You can’t gauge everything through video, so some things did get lost but most of it was really good.
Access to my GP wasn’t great in the beginning, in fact, it was pretty rubbish. But it did get better.
During the second lockdown I had pneumonia and was admitted to my specialist centre hospital, and even then, the care was absolutely excellent. I couldn’t fault it.
Now, my PH appointments tend to be a mix of video and face-to-face and that suits me. It works really well, and I don’t feel I’m missing out on anything.”
You can hear from Jayne’s husband Liam here.
We initially interviewed Jayne over the phone, in May 2022, where she shared the experiences above. A few weeks later we visited her and her husband in person, to record the video below.
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