David FitzGerald: my experience of COVID-19

I was diagnosed in 2012 – I went to the doctor when my vision was degrading rapidly; you don’t tend to wait too long to go to a doctor when something goes wrong with your eyes.

I was referred to an ophthalmologist who initially suspected HIV or Bechet so ran some blood tests. The next day, I got a call and was asked if I could go to Barts Hospital where they’d be expecting me for some tests. I happened to be working just a few minutes away from there, and they said I should go right away because the blood test showed very high white counts and many other abnormalities. Naively I thought this was all routine stuff and told my wife there’d be no need to come and join me at the hospital.

When I arrived and was in the waiting room, I couldn’t help but notice I was clearly in a haematology department – it was then that I cottoned on that cancer was on the cards. Sure enough, the consultant spoke to me and said that they were virtually certain I had chronic myeloid leukaemia (CML) and they’d take a bone marrow sample to definitively confirm.

Lots of things started to make sense. I asked if this was why I was very tired, had a really sore sternum, and was it also why I had lost loads of weight but had a bit of a pot-belly? My spleen was huge. They explained to me that I had so many white blood cells that they were rupturing my retinas, and this was why I was losing my sight. All the health problems I’d been having at least had a common cause.

I then asked what has become known in our household as the stupidest question ever asked to a doctor: “Does this mean I can’t go on holiday to Thailand next week?” Of course it did!

Things started to hit home. Cancer. Leukaemia. Very big words, and ones I struggled to get out of my mouth when I rang my wife and told her that she should come down to the hospital, after all. The next 24 hours involved lots of signing of consent forms, sperm banking, and a great deal of uncertainty. A blood test came back with results which looked like this was much more than CML and something more imminently life-threatening. That turned out to be an error, quickly rectified, but made me happy it was “only” CML. This combined with the success story of TKIs that I was told about, I was optimistic for the future.

I was placed on 400mg of imatinib, but it caused me bone pain, so after a couple of months with no improvement I was switched to 100mg of dasatinib which I tolerate well. Through constant dialogue and shared decision making with my consultant, I have reduced my dose of dasatinib over time and now take just 20mg a day. My theory is that as a relatively young CML patient, and the potential long-term need to take the medication, the lowest working dose is best for me. My CML is at very low levels – my most recent test did not detect any, the first time that’s happened.

David and his wife. With thanks to Melissa Viviers for the photography

I contracted COVID-19 on the 14th or 15th of December, from our nanny. Symptoms started on Saturday 19th December, which initially were aching muscles and a mild temperature. This increased over the next two days to have a higher fever of about 39°C, and a persistent painful cough.

At no point was I totally bedridden, probably because I didn’t really have a choice as my wife and I, both of us having COVID-19, had to look after our twin toddlers, so that wasn’t really an option.

I think I was quite lucky. The worst part was the first few days, wondering how bad it would get. As blood cancer patients, we are in the “clinically extremely vulnerable” group, so I was worried I would take a turn for the worse. My wife’s friend’s dad had COVID-19 the same week, took a turn for the worse and suddenly degraded and died.

After about a week of symptoms, I was more confident that my symptoms were stable and I would not get worse, and this turned out to be the case.

A month later, I still had a cough and required salbutamol inhalers. My sense of taste and smell began to return too.

Now almost two months later, it’s clear my lungs have been hardest hit. I have had to start to take steroid inhalers, something I haven’t needed since teenage asthma. I think it’s going to take a while to recover 100%.

We shielded for a long time and were the most careful people you could meet. But we had one known risk vector, in our nanny, which was our undoing. I think to avoid infection you really can’t have anyone in your house at all that you do not have 100% understanding of what they have been doing and where they’ve been.

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