Content warning: Descriptions of medical procedures and internal anatomy

On Valentine’s Day I wrote about the health issues I’ve been experiencing since the start of the year. To recap, my pacemaker battery box has moved so it’s now in the wrong place, and the leads that run from the box to my heart are blocking a big vein and affecting my blood flow. All this is causing extra pain, affecting how much I can use my left arm, and making me even more tired than usual.

When I met the hospital cardiac team last month, they talked me through all the possible options. It was clear that there’s no easy fix and that they needed more information before they could make a decision. They explained that no one person would decide what to do, and that they’d collectively recommend a plan of action.

Yesterday I got a call from the specialist arrythmia nurse to fill me in on what they’re thinking.

They want to remove everything related to my existing pacemaker, both the battery box and the leads, and replace it with a leadless pacemaker. Removing the leads is tricky because they grow into the heart, so getting them out is a delicate process. It needs to be done in a specialist Hybrid Operating Theatre, which, from my understanding, has lots of extra imaging equipment so they can see exactly what they’re doing.

The operation will be done by two very experienced surgeons, one cardiac (heart) and the other vascular (veins), although exactly when is still to be decided. It’ll probably be in the next couple of months, but the pre-op assessment happened today so I’m on the list from now.

The last couple of months have been very uncertain, so I’m glad a decision has finally been reached. It’s also the option that I think makes most sense, and while the operation itself is riskier, once it’s done the longer-term risks should be less.

A leadless pacemaker makes sense for me because of the tics that involve me hitting my chest. Not having a battery box in there should mean I can use my arms more easily and keep the pacemaker safely out of the way of my fists.

The NHS is under massive pressure and suffering from years of under-investment and damaging political policies, but recently I’ve had lots of reasons to appreciate how good it is. While I’ve had to manage extra pain and uncertainty, at no point have I worried about the cost. The medical team have made the best clinical decisions for me without having to consider the interests of insurance companies or check my credit score. Things can change suddenly for any of us and having access to the care we need should never be a matter of wealth.

In terms of work, we’re taking things a few weeks at a time. I’m doing what feels manageable, handing tasks to other people in the team where that makes sense, and there are a few commitments we’re having to change or postpone. But with the latest news from the hospital, we’re much closer to having a clear timeline and being able to start planning our way through the uncertainty.

I do know that as a team we have the skills and knowledge to handle the unpredictability, that we’ll learn from these experiences, and that we’re being incredibly well supported by our partners and our communities.

I’m looking forward to a time when I can write more about our art than about my heart, but until then I’ll keep you updated as clearly and openly as possible.