Living on the lung transplant list during a pandemic

Apparently, it’s week two of the lock-down but some of us are already a few weeks ahead of the rest of you. Welcome to our world.

Recently (although it feels like a lifetime ago) we’d just breathed a sigh of relief at getting through most of flu season unscathed. Now, I’m already nostalgic for the days when my biggest fear was getting a bad cold in case I passed it on to my husband, John.

He has IPF – a progressive, incurable lung condition – and has been on the lung transplant list since October. Getting a cold or flu virus isn’t just potentially disastrous for his health, but could also jeopardise his chances of a transplant.

So, hand cleanser, avoiding crowds, wearing gloves on public transport, missing family gatherings, nagging colleagues to keep their germs at home, pressing lift buttons with the elbow – we’re old (sanitised) hands at that.

One door opens…

It’s probably true of any chronic health condition, but being on a transplant list makes you feel as if you’ve just stepped through a different door to those around you.

Quite apart from the limitations caused by the illness itself, now you have to work out countless Plan Bs for getting to the transplant centre from wherever you happen to be if the call came – at a Tottenham game (me, not him), the theatre, shopping, the office.

Life can become a round of constantly second guessing yourself. Double checking the mobile reception at every entertainment venue. Crossing venues off your list because their mobile reception is terrible. Cursing yourself for not booking aisle seats at the cinema because you’re bizarrely worried about the fuss of climbing past a row of people if you need to leave halfway through the film.

Every invitation, night out, possible weekend away, any plans to be in different places from each other – they all become a logistics exercise.

Unthinkable dimensions

But if that’s stepping through a different door, we felt we’d stepped into a different dimension when we first became aware of Coronavirus and its inevitable movement towards the UK. If getting a bad cold is threatening for someone with lung disease, then the prospect of a pandemic respiratory virus is unthinkable.

John began to self-isolate before it was fashionable, and I started to seriously rethink what I should and shouldn’t be doing to avoid even more undue contact with people. I caught earlier trains, worked from home more often, became an expert in supermarkets’ quiet times. I stopped going to football and seeing friends before the government even held its first Cobra meeting.

I’m not usually anxious, but every interaction became fraught with anxiety. And why wasn’t anyone else seemingly worried­­­? Were we paranoid? A friend casually asked if the new virus was something to be concerned about. People knew enough to stockpile pasta, but not enough to keep their distance while doing so. Sometimes I felt like Sarah Connor watching the oncoming nuclear explosion, other times like the woman waiting for the tsunami in Deep Impact. As my favourite film is Singing in the Rain, that’s quite a cinematic leap in my imagination.

Fragile handle with care

Like many people with serious health conditions, we’d carefully created a fragile way of managing our world of risk and uncertainty and now it was shattered. It’s even left the ever uncertain possibility of a transplant more uncertain than ever – critical care beds are in short supply, a transplant means peak immunosuppression at a time of a pandemic.

I have no idea if the government’s overall strategy is the right one, although we have made our own decisions ahead of any national measures. However, I’ve despaired at the wasted time prior to the first Cobra meeting, the terrible comms, anonymous briefings, unclear and inconsistent messages, lack of early public health advertising campaigns, a pandemic being turned into just another politics-media game show. And inexplicably becoming part of the dismal culture wars.

I’ve joined John in the 12 weeks of ‘shielding’ because any risk for me is clearly a risk for him, and that’s a risk too many, but we feel we’d been rehearsing for it in the previous few weeks. We’re fortunate to have friends and family to get groceries for us, although I have’t yet felt able to ask them for the real essentials of Pringles or fondant fancies, and we are able to work from home.

It’s hard to envisage where we’ll be – personally and as a country – in a few months, and I try not to dwell on how long it might be before we feel safe seeing friends face to face. But at least for the next 12 weeks I don’t have to worry about having a Plan B for where we are if the transplant centre calls.