Isla’s Isolation

It’s a strange time we’re all going through. Everyone is adapting to a new (temporary) way of life, and some people are finding it very tough. Don’t get me wrong, it is tough; little things we took for granted like a quick trip to the shops because you realise you haven’t got a pepper to put in your tea, are no more. Personally, I love a bit of social distancing; I don’t know if this has always been the way I am. I’m sure I used to be more sociable but time has made me cynical and closed off from the world. I would say this is due to my experiences the last 4 years and I’m now much less tolerant of stupidity. My vision of common sense is the right way and people not doing what is, in my eyes, the right thing, are idiots and are stealing much needed oxygen from the intelligent people. Seeing the number of people ignoring the current government advice proves their existence, and while it seems to be the minority, I focus on the negative rather than the positives and the fact that most people are staying inside. It just makes me hate mankind.

Although the guidance from the government about high risk patients for Covid-19 includes heart disease, it doesn’t include Isla. Long Qt is a heart disease but it technically doesn’t make someone any more at risk if they contract Coronavirus… with a few footnotes.

I have been watching all the SADS (sudden arrhythmic death syndromes) Foundation interviews with Dr Ackerman in which he and his esteemed colleagues talk about Long Qt and Coronavirus. It’s been reassuring to hear the experts discuss Long Qt and listen to the progress that is being made, particularly in regard to continuous monitoring of the Qt interval. However, it doesn’t convince me that Long Qt patients, in particular Isla, isn’t high risk.

One worrying thing they have discussed though is the lack of knowledge in the wider medical community about Qt prolonging drugs. Hydroxychloroquine, Chloroquine and Azithromycin were the early trail-blazers for Covid-19 treatment. Despite no real evidence it is an effective treatment, the ‘leader’ of the ‘free’ world (during lockdown, define irony) aggressively promotes using Hydroxychloroquine as a potential “game changer”, “What do you have to lose?” he said on Saturday, “Take it”. What do you have to lose? If you’re a Long Qt patient; your life.

The number of doctors who didn’t a) have a clue about Qt Prolonging drugs and b) disregarded the cautions of drug induced Torsades was staggering. Dr Ackerman said some doctors considered drug induced cardiac arrest as ‘friendly fire’. Wow. Couple this with the fact that most of the treatments given for people struggling to breathe are Qt prolonging; if you have Long Qt and get Covid-19, in my opinion, you’re in a mess. If the virus doesn’t kill you, the doctors might.

Another complicating factor with Covid-19 and Long Qt is the febrile side of the virus. Last time Isla had a febrile illness, the flu, she had 6 cardiac arrests. This all happened because of her fever. While a fever isn’t considered any more dangerous for Long Qt patients in general, in Long Qt 3 patients, at least those I’m aware of, a fever is a big deal.

Basically, Isla is extremely high risk, but we won’t get that letter to say so. I’ll just shield her anyway because when you’ve spent day, weeks, months in a hospital ward with dodgy Wi-fi and crap tv, quarantine at home with Sky, all the toys V-Tech has created, swings, baths, home cooked food and a washing machine is a breeze. I can see how people find having to stay at home hard but really it couldn’t be easier. Live out of a bag, in a hospital, in a new city, on a hard bed, with only microwave food, with a poorly child in a constant state of dread… That’s hard.

On Thursday we had our telephone clinic appointment with Dr Starling at GOS. Amazing how these things can happen. Basically FaceTime with your consultant. There was nothing really new that came about from the conversation. They want to complete the sympathetic denervation by doing the right side as soon as possible, which I knew would be the case considering she still had a sympathetic triggered response when she last fell at school. It wasn’t that news which particularly bothered me; it was more the urgency at which they were keen to get it done. GOS is essentially closed other than for emergencies, yet they would consider Isla’s sympathetic denervation as an emergency. In this scary current Covid climate, the risk vs benefit of travelling down to London to get his procedure done was on the table. I decided that the potential of her getting Coronavirus wasn’t worth the risk right now so Luke was happy to delay until things have settled down. It was still a bit of an eye opener though that they would class Isla’s denervation as an emergency. It’s literally unnerving for me that denerving her is so vital. She really is that brittle. And that makes me sad.

Just because I now need cheering up!

Dr Ackerman said he prefers physical distancing to social distancing because we can still be social and talk to each other through things like social media. It’s a very good point. All the sensible people are staying home but the people I want to talk to I can FaceTime or send a message to. It’s not the end of the world. Everyone is putting messages on the Socials to tell people to stay at home to help protect our loved ones and our NHS. I love the message of ‘your only, is my everything’; Isla really is my everything. It’s a great message but unfortunately the people we want it to reach won’t see it, and if they did, they probably still wouldn’t give a shit.

I hope everyone has a lovely physically distanced Easter.

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