After just over 4 months off I’m returning to work on Monday February 26th.

What follows is a brief overview of why I was offline in an attempt to avoid repeating myself and likely boring people with the story over the coming weeks.

tl;dr - If in doubt always seek multiple medical opinions!

As crudely documented at the time on my private instagram account and later copied into this blog I was admitted to hospital back in October after finally getting a second opinion on some symptoms I had been having for the prior ~6 months. These symptoms included fevers, uncontrollable shivering and exhaustion but had unfortunately been misdiagnosed as night sweats. I was about to see an Endocrinologist when my condition really deteriorated and my wife finally pushed me to seek the advice of a second GP.

Within a few minutes of seeing the GP a new diagnosis was suggested and I was quickly admitted to Hospital. There we discovered that my ICD, first implanted 19 years earlier for primary prevention, had become completely infected with a ~40mm long mass (yum!) hanging onto the end of the wire within my heart. The eventual diagnosis would be cardiac device related infective endocarditis. I was extremely lucky that the mass hadn’t detached already causing a fatal heart attack or stroke.

If that wasn’t enough I also somehow managed to contract COVID within a few days of being in hospital and had to spend a considerable amount of time in isolation while my initial course of antibiotics were being given. This was definitely a low point but the Coronary Care Unit and Lugg Ward teams at Hereford County Hospital were excellent throughout.

Once I was COVID negative I was transferred to St Bartholomew’s Hospital in London and had an emergency device extraction via open heart surgery on November 14th. While the surgery went well there were complications in the form of liquid (~600ml) building up around my heart and lungs that led to more surgery at the start of December. During this time I remained on a cocktail of IV antibiotics that finally stopped in the middle of December and after numerous blood cultures (including one false positive!) I had an S-ICD implanted on December 20th before being discharged home the next day.

I’ve spent the time since recovering at home with family as my sternum and numerous wounds slowly heal. This time has been extremely important and I can’t thank Red Hat and my management chain enough for their support with this extended sick leave. I’ve been able to focus on reconnecting with my wife and girls Rose (3.5) and Phoebe (9 months) after 9 extremely difficult weeks apart. I’ve also ventured back to London for checkups and to thank friends who helped me through the weeks away from home. I’ve got many many more people to thank in the coming months.

I now feel mentally ready to return to work but know it’s going to be a little while longer before I’m fully physically recovered.

Thanks to anyone who reached out during this time and I’ll catch you all upstream in the coming weeks!

~Update 26/02/24~

I’m back to work today, many thanks once again for all of the responses to this on LinkedIn and elsewhere, they are all greatly appreciated!

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Fin - Discharged and heading home.

Thanks again to anyone who liked, messaged, visited or helped out back home. Expect my normal spamming of Rose and Phoebe pictures to begin again soon.

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Unfortunately while I’m feeling much better and basically back to normal a set of blood cultures taken last Friday somehow managed to grow bacteria from the same family (Staphylococcaceae) as my original infection. Additional cultures taken on Saturday and Monday did not growing anything leading to the assumption that the first set were somehow contaminated.

To ensure this really was the case another two sets of cultures are being taken today and should allow for the all clear to be given some time on Sunday evening.

This has obviously delayed my final S-ICD implant surgery but I’ve been assured that once the all clear is given the surgery should be able to take place on Monday or Tuesday at the latest. If anything does grow then I’m in for another 10 to 14 days of antibiotics before we try the process again.

I’m pretty gutted after assuming I’d be coming home this week but hopeful that things work out in the coming days and I can get home early next week instead.

Thanks as always to folks sending messages, visiting or helping out at home. We are almost there now.

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The last 7 days have been extremely difficult. From being told by a nurse that my pain tolerance is too low (it isn’t, see below about my lung), having a drain and bucket of blood attached to me for 4 days and being left all weekend without my phone, laptop, tablet and glasses it has honestly been the most trying week of my life.

The surgery to remove liquid from around my heart was successful (~750ml removed over 4 days) but we then discovered yet more liquid around my partially collapsed left lung. Thankfully the latter just required rest, exercise and time to clear and I was given the all clear yesterday for both.

This then allowed my antibiotics to finally be stopped as my infection/inflammation blood markers all came crashing down. It honestly felt weird not being hooked up to an IV for 3 hours while I attempted to sleep last night.

With the antibiotics stopped I could then be booked in for S-ICD implant surgery on Monday, the final thing required before I can go home.

All being well this means that I should be discharged sometime on Tuesday and finally able to go home to see my girls for the first time in almost 8 weeks.

To celebrate I’ve just ventured outside on my own and had a flat white for the first time since I was admitted.

As always I can’t thank everyone who made the effort to message, visit or help out back home enough. I can’t imagine what this would have been like without your support so thank you from the bottom of my now disinfected and hopefully healthy heart!

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Morning all, unfortunately I’m heading back down to the basement at St Bart’s for more surgery today after liquid has built up around my heart.

This is a common complication from cardiac surgery and the procedure should in all likelihood be simple and over in about 60 minutes.

With this hopefully resolved I should then see my recovery continue after it platod over the last week or so, even with blood transfusions and the best efforts of the staff on the recovery ward.

Then it’s back to ensuring all of my inflammation and infection markers return to normal before stopping antibiotics and collecting blood cultures to ensure the infection is no more.

Once that’s done I’m then having an S-ICD implanted as an inpatient before leaving the hospital. This sits under the skin and doesn’t have a wire in the heart.

For anyone still following along it increasingly looks like I’m not going to be home for Christmas but given the recent discovery I’d rather return home fully fit than have to return here again in the new year.

Thank you once again to everyone who is chipping in at home with the girls, visiting me in London or just messaging (apologies if I don’t reply, often my head is just mush at the moment). We massively appreciate the support!

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Another quick update, just stepped outside for the first time in 3 weeks with Katie that was glorious. STILL waiting to hear what the Endocarditis teams plan is to get me home but the recovery ward are happy with my progress so hopefully it’s just a matter of time now.

A few folks continue to go above and beyond so thank you again, we are forever in your debt!

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Surgery on Tuesday went well but they had to leave a small bit of plastic sheath that had grown into the wall of a vein. Unknown what that means in the medium and long term but for now the ICD and bulk of the infection has gone.

I’ve been up on my feet and while everything is sore and painful I am slowly getting better each day. I’ve even had a MRI scan today to help decide if I need an S-ICD in the future.

Still lots of tests and antibiotics to take before I can even think about home but I’m getting closer to my girls with every passing minute.

Thanks again for the messages, apologies if I’ve not replied but the last couple of days have quite literally been hell.

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Another short update from me, surgery has been confirmed and booked for Tuesday morning. Katie is traveling up Monday and then it’s game on. Unfortunately the beard and most of the hair on my upper body has to go but it will grow back eventually.

Goes without saying but thank you to everyone helping out at home, the distance is starting to hurt but with surgery I’ll be one step closer to home next week.

Hopefully out of ICU by the end of the week and posting more boring updates. In the meantime keep the girls in your thoughts and I’ll catch you all on the other side.

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(15/12/23) I’ve decided to post the text of a series of Instagram posts I’ve made to my private account detailing what I’ve been up to over the last 8 weeks while in hospital.

The original posts and associated pictures can be found below, assuming I know you feel free to send a follow request!

https://www.instagram.com/lyarwood_/

I’m still waiting on various surgical teams coming to an agreement on my procedure. Essentially 2 stand alone ops interwoven into 1. Antibiotics flowing still but vastly reduced from previous weeks. I also finally have a PICC line so the daily cannula and bloods torture is over for now and my arms can heal. Still hopeful for progress this week, then onto recovery and eventually home.

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Will require yet more antibiotics for a few weeks afterwards but all being well I'll be home for Christmas. Thank you to everyone who has been in contact or helped with the girls so far. Please keep them in your thoughts over the coming days.

Lee

x

— fosstodon.org/@lyarwood 🇺🇦 (@lyarwood_) November 4, 2023

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