Voices from the UK's pulmonary hypertension community
Emma Edwards is 45 and lives in Portsmouth. She was diagnosed with idiopathic pulmonary arterial hypertension in February 2020, just before the onset of the pandemic.
“Tests began in the January and at the end of February, I was told it was suspected PH but not to Google it. I went home and Googled it and thought ‘oh my god’.
The pandemic was just starting to come about, and I was working as a teaching assistant in a school. One of my colleagues suggested I phone my doctor to ask what I should be doing, and he said to go straight home and isolate. It was really quite scary.
I have two teenage foster boys and so I had to phone both of their schools, explain the situation, and then they had to come home too.
I was grateful for their company, and I did have my family for support; my brothers would help me get my medication and another foster carer down the road would help with picking it up too.
Ten weeks into shielding, my dad passed away. My mum phoned me, and I thought ‘stuff it’ and went round. She had found him on the bedroom floor, and I couldn’t leave her there.
I did attend the funeral. It was very small; literally just me, the boys, my mum, and my brothers.
We didn’t keep apart; I think if anyone had said anything we would have told them to do one.
At this point, I hadn’t had an ‘official’ PH diagnosis because I’d not been able to have the tests. It was frustrating having appointments booked and then having them cancelled, because I hated the waiting, and I hated not knowing.
I hated the breathlessness and not being able to do anything.
I finally had a right heart catheter done in August 2020 and that was quite scary. Since then, I’ve had a few hospital stays up in London, and I’ve had telephone and video appointments too.
The boys were really good at helping me around the house [whilst I was shielding and poorly.] I’d call it ‘life skills’; I’d say ‘right, you’re going to get a life lesson today and learn how to cook spaghetti bolognese’.
I would do little things to make it a bit more interesting and keep a bit of sanity, like if they wanted a takeaway, they would have to run up and down the stairs ten times. Or I would send them a web page, and then ask them ten random questions about it.
They had their own lessons to do online from school, but I tried to think outside of the box to make things a little more interesting for them.
I kept up video calls with one of the little girls I used to work on-to-one with, and I used to absolutely love working with her. But I’m now medically retired because I’m unwell and I do still miss my job.
I quite liked being at home in my own little bubble.
Even when the boys went back to school, I felt safe here. But I did miss going out with my mum and seeing friends, and work.
I do go out now, but not very often. I’ve got an electric scooter and I take my oxygen, but I’m still really worried about covid because it could make me really ill.
When the boys went back to school, they would shower and change their clothes as soon as they got in, and they still do that now.
It’s the same after their weekly contacts with their dad, as they do it to protect him too.
The past two years have been really hard because [as well as the pandemic] we’ve had a lot of deaths in the family, including the boys’ birth mum. It’s been hard going.”
~Emma 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