Voices from the UK's pulmonary hypertension community

I’ve missed my hospice care

Fiona Ballantyne, 55, lives in Falkirk in Scotland. She has pulmonary fibrosis, and was diagnosed with pulmonary hypertension in 2019, a few months before the start of the pandemic.

“My mentality is very much ‘this is what it is, so we’re going to have to try and cope with it’ but I have missed things, especially my hospice day care. 

I used to go every week and take part in group activity sessions and have massages that felt like counselling sessions. But it all stopped because of the pandemic.

Things did move online but I find it difficult when everyone is talking at once and there were a lot of older people who didn’t have the technical knowledge.

In-person day care sessions are not going to be reinstated because they have realised they can actually help more people by using the resources on other things. They do still ring me, but I miss going a lot. I can now go for weeks without leaving the house.

A trip to the hospital is a day out and I know that sounds really sad.

Although I wasn’t able to go out much before the pandemic, because of my health, not being ‘allowed’ to go out is different.

I was denied that opportunity, and the fact I didn’t go out much before was irrelevant because I didn’t have that choice.

I had to be started on intravenous medication in August 2020 and I was in hospital for four weeks. It was horrendous.

I wasn’t allowed any visitors, so apart from when I’d get my drugs, I could go a whole day without seeing anybody. 

I was at the end of the ward, so sometimes my sister and my 19-year-old son would sneak up and we would stand on the phone and have a conversation through the window.

I had my laptop and my phone, but I’d spend most of the day alone.

I wasn’t actually worried about covid risks then. All of the staff had their masks on, and it was more a case of this is where I need to be, so what does anything else matter?

To be honest, I probably should have been in hospital long before, but I kept telling myself I didn’t need to go because they were already so busy and had so many other things going on [with the pandemic]. It actually got to the stage that I had to phone 111 at 11 o’clock at night because I couldn’t breathe.

I had to go into hospital again in August 2021 because of a chest infection.

In general, I think my medical care [through the pandemic] has been very good.

But I have found it hard not having regular face-to-face contact with my specialist PH centre. It’s hard to explain how you feel on the phone and they need to see what I look like. 

I’ve had all my vaccinations and I don’t worry about covid much on the rare occasions I do get out. I’m more worried about how I’m going to feel when I get back, if I’m going to have enough oxygen, and how much my muscles are going to hurt.  

I worry more about my family getting it, especially my oldest son as he isn’t even vaccinated. It drives me insane.

I almost feel like I’m fireproof myself [because I’ve not had it yet]. I don’t know if I’ve just been lucky.”

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


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