Endocarditis advice

[Laraa473]

HELP!

Just a bit of a back story - when I was 5 (weeks old (1998) I had valve replacement surgery and since then I haven’t so far needed more surgery to replace this valve again (I’m now 23) each year I’ve had check ups and everything has seemed to be working well enough for me to wait for my surgery.

Now, I had always wanted tattoos and I spoke to my cardiologist about this, they advised against it but said it’s a personal choice and do my research and go to a clean and licensed tattooist which I did. I haven’t had any sign of infection with my new tattoo, I’ve had it for over a month now and it looks healthy etc however, I suffer with anxiety and anything small triggers it real bad. I’ve been constantly googling endocarditis symptoms and the last 3 days I’ve noticed my shoulder ever, ever so slightly aching when I move it. Now I’m probably over reacting and I’ve probably slept on it funny but aching joints/muscles are a symptom. I have no other symptoms and feel absolutely no different than I ever have (apart from an anxious mess) but it’s freaking me out.

Did anyone else have this? Or what symptoms did you have and the severity?

I tried to call my hospital and talk to the cardiology nurse but they’re too busy and said they couldn’t talk right now.

[IChoose]

Oh dear, I'm so sorry. I feel like I can sort of feel that scream for help. I don't know anything about these matters but any question you see your doctor. I kind of get what happened and my rule is if I have a "what if" anxiety about something non essential I would advise not doing it . So much can cause our heads to spin and that does put stress on the heart. I would not get any more tattoos, just in case. Maybe you can can enjoy the temporary stick on tattoos. Or play with makeup and hair color and nail polish if that is safe for you. Perfume was a hobby of mine for a while.

[Clairealou]

Hi Lara. I had endocarditis in 2012 which resulted in my 3rd OHS and I’m just recovering from having my 5th. I have many tattoos, most quite large and many of them since the endo episode. Yes, it’s true, tattoos are one of many things that can be a factor in endo but having said that, so is not looking after your teeth and having an infection that is not treated. I’m on warfarin now so not sure if I should get more now I’ll bleed so much more but as You’ll know, they’re very addictive! I can’t say what you should do and I suppose a doctor would always suggest you don’t have needles stuck into you by someone other than a doctor. But, I’m always of the belief that you should do what makes you happy (unless it’s something significantly risky) and weigh up the pros and cons. I know I’m going to get another from my usual tattooist who I’ve been with for years and understands how warfarin works. But, that’s my choice and others may think I’m silly but I’m alive and going to celebrate it in the best way I know how……stay well and happy and don’t worry about the things you can no longer change x

[Laraa473 in reply to Clairealou]

Ahh thank you! I’ve done so much research into endocarditis and tattoos before I had my tattoo and once I had it, it’s healed really well. I had no problems and no signs of infection at all. Just since having it I’ve been more paranoid about endocarditis I guess which is causing anxiety and googling things really doesn’t help 😂 I weighed out all the pros and cons and it’s something I always wanted to do and it’s made me feel incredibly happy having a tattoo.

Can I ask what your symptoms from endocarditis were and how severe? X

[Clairealou in reply to Laraa473]

I think my endo came from my second surgery that I’d had 4 months before. I had had an infection in my sternum which took a while to heal and I think it may have been from this. I just woke up one day feeling ‘not quite right’ but couldn’t put my finger on it. I had chest discomfort but nothing too bad. I called my doctor who said I should call an ambulance due to my recent surgery. When they took me in, they said I had endo and took me back to Kings where I had had my previous surgery and I had it done again the next day. I was in hospital for a month and on intravenous antibiotics which were very strong. However, I got through it and had a large tattoo to celebrate! 9years, 2 surgeries and several tattoos later, I’m still going strong. I’m 53 btw

[Laraa473 in reply to Clairealou]

Oh wow! I’m glad you’re doing so well! I think my anxieties are getting the best of me. I got lost in the world of google and saw “joint and muscle aches” and instantly panicked, although mine isn’t bad at all, honestly can only feel it slightly when I move my arm so I’m hoping all is good. I’ll just keep an eye on it. It’s reassuring to hear you also have tattoos! X

[Hidden]

Hi Laraa, A bit young to be having surgery, but you seem to have a good awareness of your situation.

I'm similar to Claire, having picked up an infection in my 2nd surgery. It turned out to be Endo and resulted in my 3rd surgery. Having had a really good operation when I was younger I knew there was something wrong, so it wasn't a big shock when I was redone.

Unlike Claire and yourself I don't have tattoos, for no other reason than I've never wanted one. I dare say if I wanted one, I'd have it by now, Endo or not.

At the end of the day, you can't live risk free. On that note, I'm off for my INR check soon and then I'm out for a few beers later

Take care...

Heed

[Laraa473 in reply to Hidden]

Yeah I had my first replacement valve surgery when I was 5 weeks old and haven’t needed another since so far but I know I’ll need OHS at some point in the future. Since getting my tattoo I’ve just been more paranoid based on the fact I know it holds a possibility of endo.

If you don’t mind me asking, what were your endo symptoms and how bad were they? X

[Hidden in reply to Laraa473]

My symptoms were straightforward, breathlessness, tiredness, migraines. I cant honestly say much about aches and pains, as my body hadn't recovered from the surgery.I basically didn't recover as I should have, and my health was deteriorating until I had the 3rd surgery.

Try not to get anxious over every ache or pain, or you'll end up paranoid over the slightest thing.

[Sunnie2day]

I've been able to avoid endocarditis so far but it's a constant worry for my dentist owing to my multiple heart conditions so he insists on antibiotics before and after any thing more complicated than a check-up. I had a root canal first round of treatment in 2019 that brought on an ultra acute flare of my recurrent pericarditis (and during the flare I caught Covid, yikes, but managed to avoid hospital) and for a while there the medics were really concerned about endo.

I was told the following: call for an ambulance immediately if 'flu-like' symptoms arose and if at the same time I had what they called 'a swinging fever' - meaning at 8am I'd have a normal temp then by 10am having a moderate-to-elevated higher than normal temp that went back down to normal - but jumped to high by 2pm, rinse and repeat. They stressed the 'swinging fever' was a serious symptom.

I'd laugh but it would be a grim laugh - swinging fever happens with an acute pericarditis flare, it happens with myocarditis, and it is a serious sign of endocarditis.

Those 'carditis conditions, they just are the 'gifts' that keep giving 🤨

So, write down the symptoms on a sheet of paper, post it on your fridge or notice board and refer to it every time you start to worry. I do it and it really keeps panic at bay to have a tick-list to go through when my mind wants to go places.