Content warning: Descriptions of medical procedures and internal anatomy

Today is Valentine’s Day so it seems appropriate to give you an update on the state of my heart. At the end of last month I wrote about some new and unexpected changes to my health that I’ve been experiencing recently. Since then, I’ve been to several more appointments and had further tests and conversations.

A couple of days ago I met the Arrhythmia nurse with my sister to find out where they’d got to with their thinking. There are at least three layers of complexity that I’m currently navigating – the health issues themselves, issues relating to my tics like how difficult it can be for me to be still for all the tests, and unfortunately some ableist assumptions that can creep in about the type of work I do and how many people rely on me.

The nurse has been brilliant and has a clear understating about how complicated and urgent this all is for me. But, as you can imagine, the situation with my health is far from straightforward.

There are two main areas of concern. Firstly, my pacemaker appears to have moved from where it’s supposed to be. In a worst-case scenario, there’s a chance that it might come out of my body – a bit like being stabbed from the inside. It’s unlikely, but possible, and having a fall of any kind would definitely not help. However, because of the extra pain, I’m having to find different ways to transfer in and out of my chair, which, if I’m honest, are more precarious than I’d like. So, not ideal.

Secondly, the leads that connect the pacemaker to my heart are starting to block the flow of blood though my veins, which is making one big vein smaller than it should be and some smaller veins bigger than they should be. Removing these wires is an extremely risky procedure, particularly after the first year of having them fitted, because they grow into the body over time. Mine have been in place for 17 years. Again, not ideal.

It’s high stakes and as a result a lot of different specialists are involved – heart specialists, vein specialists, pain specialists, anaesthetists, my GP and me. It’s clear they all want to resolve this quickly, but they definitely don’t want to do it in a rush.

It’s looking increasingly likely that I’ll need to have an operation sometime soon – this could be in a few weeks, but it could realistically take months. The current plan is to do all the prep work so I’m ready for the operation, even if it’s not clear exactly what it’ll be. I’m thinking of this like boarding a plane and getting ready for take-off without knowing what the destination is. In the meantime, I will need to manage my increased pain levels and the additional tiredness this is causing, as well as going for more tests, and avoiding falling over!

Writing it all down, I realise that it sounds like a lot to deal with, and it is, but thankfully I have some brilliant support from my friends, family, co-workers and lots of the healthcare professionals involved.

This is an unpredictable time, even for me, and my plans are likely to change significantly at short notice, so once again, for everyone we’re going to be working with over the next year, I wanted to let you know as honestly and clearly as possible what’s going on, to ask for your patience and understanding and to let you know that I have a brilliant team supporting me if for any reason I can’t be involved in specific events or activities in person.

My sister, who works as a consultant at another busy London hospital, is being an incredible advocate for me as this situation unfolds. I usually work out how concerned I should be about my health based on her reaction, and I know that right now she’s worried. I can also feel how much love and care there is for me and that’s really what Valentine’s Day is all about.

I need to get as much rest as I can over the coming weeks so I might be a little less active here for a while, but if you have any questions please feel free to drop us an email.