Endocarditis leading to AVR - my story

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jimbob123

VR.org Supporter
Supporting Member
Joined
Dec 10, 2023
Messages
25
Location
Perthshire, Scotland, UK
Hi all

I'm new here, and I've joined and posted in the hope it helps others. Sorry it's such a long story.

I'm a 51 year old male in the United Kingdom (Scotland), a never-smoker, light drinker, in good health.

In September my wife and I went on holiday to north Yorkshire in our caravan, arriving on a Sunday. I felt absolutely fine, no health issues. On the Monday we went for a short walk with the dogs. Around 6PM I started to feel a bit unwell, I didn't eat much dinner, and went to bed early. It was a really hot day, and a late summer heatwave, so I put it down to being too hot.

I woke in the middle of the night scrabbling around for blankets and duvets as I was freezing cold. My wife woke up and said "you aren't freezing, you are boiling". She found phone numbers for a local GP (doctor).

In the morning we went to the GP, who took my temperature. He imediately said "it's over 40C (104F), we don't deal with that here, get yourself to A&E".

I arrived at the nearest hospital, had a five hour wait (whilst feeling terrible), had a chest x-ray, ECG, two litres of IV fluids, and was sent away at 5AM with a box of Amoxicillin.

The next couple of days were a blur, I slept for much of the time. Then on Friday I had a very painful toe, and noticed a big black spot on it. So the next day I went back to A&E and they swapped my Amoxicillin for Flucloxacillin.

There was no diagnosis or explanation of what had happened.

By the following Wednesday (9 days after illness) I felt well enough to enjoy the final two days of our holiday!


Fast forward five weeks and I was moving some stuff in the garden and noticed I was getting short of breath and I felt a slight chest tightness. I felt fine otherwise. I got a GP appointment who referred me to my local cardio department in Perth Royal Infirmary. Soon after arrival I had a chest x-ray and a doctor listened to my chest and said I had a heart murmur (this was news to me). So he arranged for a TTE (Trans Thoracic Echocardiogram) the following day. I also had a dye-injected CT scan booked for next day too.

I went for the TTE and the registrar checked all my valves and then asked "have you had a high temperature recently?". I relayed the story and she said that it all made sense.

In summary, I had experienced Infective Endocarditis back during the September holiday, I had developed vegetation on one of the aortic valve leaflets, and it had caused a hole in the valve. This had resulted in severe aortic regurgitation and my heart was under stress (Traponin levels increased from 10 to > 100 over the following days). Surgery would be needed. And the black spot on the toe was linked; bits of vegetation can break off the valve and scatter to the bloodstream extremeties - toes and fingers. A subsequent TOE (Trans Oesophageal Echocardiogram) confirmed everything.

Due to this being bacterial, I was put on a high dose (2g) of both Amoxicillin and Flucloxacillin via IV every four hours, day and night. This wasn't good for sleep as each took 30 minutes to pump.

After two weeks I went via ambulance to Edinburgh where I underwent a six-hour procedure, via the sternum, to replace my aortic valve. The surgeons attempted a repair first but had to replace it.

I opted for a tissue value. Although I am relatively young, and might have to go through all this again in 15 years time (hopefully via TAVI/TAVR) I didn't fancy taking daily warfarin, and hearing the valve click would drive me nuts! So I now have a valve from a cow.

After surgery, my chest drains were taking out on surgery+1 day (I was still in ICU) and the pacing wires were removed on surgery+6 day. Day surgery+5 was the day where I "turned the corner" and started to feel better.

I continued on the IV antibiotics, which can only be given in hospital, for another two weeks, and that delayed my return home. During this time, Edinburgh managed to identify the bacteria from the old valve - gram-positive staphylococcus aureus - and that allowed the hospital to move me onto an oral antibiotic - Linezolid 600mg twice daily for four weeks. This gives a full course of antibotics for six weeks since surgery. Linezolid is pretty horrible but it's a small price to pay for being home.

As I write this, surgery was five weeks ago, my chest wound is healing nicely, and it still hurts (a lot!) to sneeze. But it's behind me.

Anyway, that's my story!



Jim
 
Last edited:
Many thanks. In all honesty, the antibiotics were worse than the surgery! During my first two weeks I endured 13 cannulas/venflons as they kept failing and/or tissuing. Nurses were running out of veins! I also had a registrar try to insert a midline but gave up trying after an hour. So having all those lines inserted, then being woken up every four hours, was rough. Mind you, that was assuming I was able to sleep, I'm a light sleeper so a noisy hospital meant I was continually shattered.

For the TOE and the surgery I was fast asleep and oblivious, and then after waking up from surgery I was on oramorph and oxycodone 10mg so the pain was well controlled.

After surgery they put a PICC line in, so that helped with the subsequent IV antibiotics, although that also became problematic.

So yeah, the surgery was the easy bit :)


Jim
 
Hi Jim!

32 year old here from the UK who had infective endocarditis which went on from May to August before finally getting diagnosed (I feel lucky I didn't drop dead during that time due to how unwell I was). I was in hospital for antibiotics for 7 weeks in August until late Sept. Looked like the valve damage wasn't too bad until I was home nearly 4 weeks when I bit of the dead vegetation broke off and went to my eye causing vision loss for a few minutes.

Straight back to hospital to find the vegetation had left a hole on the valve causing severe regurgitation like yourself. Been in hospital since, had the operation over 2 weeks ago (Went for mechanical due to being so young) and back on antibiotics again requested by the surgeon. Hoping to get home next week though.

Hope your recovery goes well at home.
 
Jim - I'm glad you are progressing well! I had endocarditis 1 year ago. We killed the infection, and then in September I got a mechanical aortic valve installed, and I got my mitral valve repaired.
 
Greetings Jim!
And welcome to the forum.
Incredible story. Glad they finally made a correct diagnosis on the endo. And glad you are now on the mend. Sending best wishes for a continuing good recovery.
 
Hi Jim!

32 year old here from the UK who had infective endocarditis which went on from May to August before finally getting diagnosed (I feel lucky I didn't drop dead during that time due to how unwell I was). I was in hospital for antibiotics for 7 weeks in August until late Sept. Looked like the valve damage wasn't too bad until I was home nearly 4 weeks when I bit of the dead vegetation broke off and went to my eye causing vision loss for a few minutes.

Straight back to hospital to find the vegetation had left a hole on the valve causing severe regurgitation like yourself. Been in hospital since, had the operation over 2 weeks ago (Went for mechanical due to being so young) and back on antibiotics again requested by the surgeon. Hoping to get home next week though.

Hope your recovery goes well at home.
@GreenGiant91 Wow, and I thought I had a rough ride! To go through what you did at 32, and think you were clear after 7 weeks of IV only to be back to square one.....I'm not sure if I would have coped with that. For me the hospital stay was awful - noisy, lack of sleep, horrid food - I lost 10KG in my 4-week stay; if I'd been there for 7 weeks I'm sure I 'd have withered away to nothing :)

Hope you finally get home soon, in time for Christmas, and you can begin to put this nightmare behind you.

Jim
 
Many of us that have had endocarditis were misdiagnosed, even with valve replacement surgeries under our belt.
I felt fine, walked my dog 2 miles. Next day while traveling by car to visit my daughter, I started having major aches.
By that evening, my shoulder was so painful I couldn’t use a knife or zip my pants. I waited 2 days then to ER. Was told I had the flu and rotator cuff pain.
We drove home and I went to my own urgent care and got tested for everything.
I ended up in the ER again with a brain bleed 3 days later and then the next day my blood cultures came back with staph. Lugdunensis. I ended up at Stanford, got a picc line, sent home to infuse 23 hours a day. After 6 weeks I had SOB and after tests, I needed everything replaced from 1st & 2nd surgeries!
I totally get what you’re going through.
I never knew how I got my bacteria, either.
 
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