Voices from the UK's pulmonary hypertension community
Sindy Banga is 56 and lives in Northampton. She was diagnosed with pulmonary arterial hypertension in 2014.
“For me, the pandemic has been negatively life-changing. I now identify myself as being quite anxious; I was far from that before.
I live alone in a flat and the first couple of weeks of the first lockdown were great because I didn’t have to go out anywhere, but it soon became very lonely.
My best friend, who used to come to my hospital appointments with me, would stand outside and I would pass him a cup of tea through the kitchen window.
He’s been a rock, and I was so grateful he was able to drive for 45 minutes just to stand outside.
We just didn’t know what we were dealing with. We stuck to the rules and made up our own restrictions too, to be extra safe.
I was still working full time, as a university lecturer, but I was working from home. The structure helped, but I found myself working twice as hard as before.
Before the pandemic, I was a lot more active. I’d get the train, bus, or drive to spend time with my family, but all that came to an end.
For a year-and-a-half, I only left my flat to go for a daily walk. I live in a block of 18 flats, with one shared front door, so just getting through that door was traumatic as I had to disinfect everything to touch the handle. And then walking round the park involved me constantly having to move out the way of other people who didn’t seem at all bothered.
In June 2020, while I was still shielding, my father died, and I couldn’t go to his funeral.
I had to watch it online, and that was hard. I had kept my condition secret from my family for five years, but I had to tell them then in order to explain why I couldn’t go. It was a bit of a shock to them.
The pandemic has made me more aware of having PH and it’s made me feel more scared about my condition.
In terms of my PH care, everything changed at the beginning of the pandemic. All hospital appointments came to an end, and it was telephone consultations instead.
I was happy with that, as I was petrified because of the number of people you heard about dying on the news, so being clinically vulnerable, I didn’t even want to leave my flat. The last place I wanted to go was to a hospital.
Because of the medication I’m on, I was going to my GP surgery once a month for blood tests, but off my own back, I asked if I could go in every other month instead. The surgery had changed the way that shielded patients were being seen so it felt very safe.
I had three face-to-face appointments at my specialist centre between summer 2021 and summer 2022. It was worrying, but they were very strict, so it was very safe.
My friend used to come in and sit with me all day during clinic appointments, and it was very useful having him there, but they stopped anyone else coming.
In general, I have felt well-looked after by my PH team over the last couple of years and I’ve felt able to contact them if I needed to.
It’s been different with my GP practice. It’s an effort to get an appointment and they still continue to be ineffective.
The behaviour of other people has been a worry for me over the last couple of years.
Some of it has been irresponsible and thoughtless, especially in terms of mask-wearing, and I’ve been afraid to be around people.
I feel less trusting of the general public and also of my own family members, because even though they would go out and do something when they were allowed to, they wouldn’t then tell me about it. It does make me feel quite isolated.
Even though I’ve had all the vaccines, and I’ve had covid, I’m still scared to take the train because nobody wears a mask. I think some of my behaviours will never go back to normal.”
~Sindy 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