34 years old - diagnosed with myocarditis

[LukeWilliams]

hi everyone, I’ve never joined anything like this as I’ve never been admitted into hospital my entire adult life. This week came as quite a shock to me, I got severe chest pains on Sunday 11 Feb, lasted 2 hours, shortness of breath, crippling pain. Then I got it again the following morning for around 4 hours. I went into hospital still thinking they would find nothing and all was ok, so mentally, that’s where my head was at. My wife left me around 4pm as we have 2 kids and she needed to get back to make dinner, bed time etc, so I was alone in the hospital then. I eventually saw the doctor, and he confirmed my ecg was abnormal, and they were concerned about blockages to the heart, by the time he’d finished telling me he was sending me down immediately for an angiogram, the nurses had pulled me up a bed and gown, I was in shock and very scared. My mother had a triple heart bypass 15 years or so ago, and has had 2 angiograms before and I knew that they weren’t the most pleasant of experiences. Thankfully my angiogram was clear of blockages, I then went on to have an echo of the heart, x ray of the chest, CT scans and a cardiac mri, all of which I’d never had before. I was traumatised by some of these experiences over the week I was in hospital, in pain for some of them and just generally scared and feeling down. I was on a very high dependency ward, 2 people had flatlined in my ward, and the reality of the seriousness of what I was surrounded in and the seriousness of what this is really kicked in.

I have 2 kids, and am now back home, I work in music and run my own business, and this line of work can certainly be stressful.

I’m reading all these notes about just how important this rest period is, and I am hearing it loud and clear and don’t plan on over doing anything until I have my 3 months mri check up to see how the muscle is healing. I already got chest pains on my first day back home and felt like I did over do it already and I need not to. It’s hard when I have 2 kids, and you feel bad that your wife is now having to do everything and you feel useless.

this is going to be my biggest challenge is trying to balance the feeling of guilt with just resting and not succumbing into feeling the pressure of doing small things which can trigger pains or further damage.

it’s hard for people to understand or see the seriousness of the situation when there isn’t an obvious physical cast on your leg, or crutches, and you look ‘normal’ but from what I’ve been reading here, this is all about rest. Short term pain for long term gain I guess.

there aren’t really any questions here, but I feel better for off laying my experience in hospital and how I feel. Everyone seems so supportive here, and of course, deep down, I’m very very scared that my results will result in heart failure. I’m scared that these next few months will be a strain on the relationship with my family.

does anyone have any advice on how to balance being back home with the family and kids and recovery?

thanks for reading this, and hearing my thoughts.

best,

Luke

[BeKind28-]

Hello

I a so sorry to read your experience and it is frightening and I have so much respect that you have joined and opened up on how this has left you feeling as many just bottle it all up which never helps

As frightening and daunting as the Hospital can be we also have that security that if anything goes wrong Doctors and Nurses are there once we are home if we start feeling anything it can make us go in a panic as that security is not there and usually as soon as we do get home we start to tune into our bodies and feel everything

But if this was your wife going through this what would you do ?

You would make her rest and the fact you had to do most things you would be more than happy to do it as all you would want is for her to get better and I am sure she feels the same

It will be a difficult time but there are things you can do with the Children not sure what their ages are but just reading them a story playing a game with them helping them with their homework again depending on their ages while your wife gets on with other things

Maybe make a list of things you can do to help at the moment which is within you capability while this gets sorted and talk it through with your wife it will be a difficult few months but you did not ask for this to happen and together you will get through it now is when you need each other more than ever

I know while waiting for results are minds go straight into overdrive most of the time coming up with the worst scenario but in lots of cases it is never as bad as we build it up to it is going to be and whatever the results we cannot change them but we can have the security of the feeling that things have moved on now regarding heart conditions and medications so there is always something they can do

I am sure others will see your post that have been through this and share with you their experiences

Let us know how you get on x

[Pokemon555]

Hi Luke, sorry to read about your situation, I’ve just had a diagnosis that isn’t great and that’s off the back of several other issues. I’m a little bit older than you and just posted about the diagnosis which is different but we have partner and kids in common, so I feel a lot of what you are referring to.

My solution for dealing with our kids needs was to just get involved in their board games, Lego, Nintendo , etc. etc. and they seem to have really appreciated my interest in their play. I found it really interesting as well and learnt a lot from them and about them, that I probably should have known anyways.

Good luck with your journey, I’m certain your wife won’t begrudge you it. We’re trying to shrink our lives a bit to allow room for all the medical stuff but with kids it’s really not easy as they need so much input. Stay strong fella..!

[Captain_Birdseye]

Hiya,

I was 34 when I was diagnosed with myocarditis just over 18 months ago - it's a terrifying and traumatic experience.

I ignored the warning of 3-6 months rest and ended up back in hospital after 2 months. I still have symptoms now, although things are improving. My only advice is really to stress how important that rest period is for a full recovery.

I ended up leaving a very stressful job to go to one with significantly less stress, and focused on my mental health. I'm only just building up my fitness again now.

With kids it's difficult, I can only suggest that you minimise throwing them about and running after them when possible (not always easy, but keep it low impact unless necessary)... you can still be involved in other ways.

It will be tough for your wife as she'll be worried about you, while potentially picking up some more... keep communicating with each other openly, and let some of the non essential stuff drop for a few weeks while you recover and then build up again. If you can rope in extra help for a short while it might help. Please keep talking things through.

You'll get through this... remember that recovery is rarely linear, so don't overdo it on good days as you can pay for it later. The vast majority of folk with myocarditis make a full recovery in 3-6 months and move on with their lives.

[roughquest]

The good news is you had 2 years of NHS dragging on appointments/test/diagnosis in a very short period of time 👍

The bad news is we all think we’ve beaten it, (myocarditis) then we do something seemingly trivial and it puts us flat on our back again.

Rest, rest and more rest - and it’s ok to be frustrated by it. The thing hardest to cope with is the career/lifestyle adjustment that’s your new future. Get to grips with that and you will find your recovery improves too, mine did, but this wasn’t an overnight thing.

Personally I wasn’t anxious or depressed (and the NHS will want to make you think it is, because they can dope you up and send you away) I was just frustrated I’d lived healthy and it still happened.

Here’s to a quick recovery Luke 👍

[Coffeelover2]

Hey, I haven’t got kids but had a heart attack and was in hospital for a week last year and I’m in my 30s as well.

Bast majority of people recover from myocarditis within a few months so whilst it feels tough and scary now, things will look up everyday. Rest and avoiding vigorous exercise is important but I think you’ll find you can do more than you think. Ask your doctors what you can and can’t do.

It’s good to talk and be honest with your wife and loved ones. You will need time to recover but you will find you will still be able to help out with the kids

[scentedgardener]

I can't advise with your job, I was already retired when my issues started.I would suggest a frank discussion with your wife; she is probably going out of her mind with worry about you. Tell her you feel very uncomfortable that she is having to do so much. Are there little ways, such as making her a cup of tea, that are not physically demanding but are a caring gesture. It can be the little things that mean a lot.

You don't say how old your children are. Another discussion is needed, but age appropriate. Instinct is to protect them, but they will pick up on the anxiety.

Sorry you had such an unpleasant week, but I have to say at least they are very thorough which is very reassuring.

Hope all goes well.

[Catkin-blake]

all I can offer is take the advice of rest rest rest, you have to, otherwise you will be back where you started with possibly more scarring to your heart. It’s so hard to do but the only way to get better,

I had this about 16 months ago and my husband had to do everything with my horses and dogs and looking after me, I was told I shouldn’t lift anything that will put a strain on your heart or even do things like grooming my animals for 3 months. You become so reliant on your family, and if like me once you where out if hospital bar the follow up mri and consultant apptmt I had no cardiac rehab offered, so you feel very alone and mentally so so frightened. This is where this group is so good to download.

Also don’t forget the BHF cardiac nurses are on the end of a phone line to chat to.

If your pain does feel very bad go to A&e to be checked out. I did a few times, I over did it on xmas day , didn’t rest 4 weeks in, Boxing Day A&e so learnt the hard way. It’s rest rest rest. They also said they would rather you always go to be checked out just in case.

Final advice I can offer is don’t google about it to much and become fixated by numbers just look at the BHF website.

[Larneybuds]

Good morning Luke....so sorry to hear about your situation and I really hope you feel some positivity from replies you get on the forum. Having a heart event at any age is scary and a walk into unknown territory but understanding the condition and knowing what you can and can't do can make it seem a bit less daunting. It's lovely that you are concerned about your wife and children but I am sure all they want is for you to feel better. Rest is so important for you but if you feel guilty as you say about not doing things with the children or helping your wife I am sure there are small contributions you can make without them having a drastic effect on your condition. You could read with the children and assist with homework....play computer or board games with them and just explain that whilst you are not feeling so good you have to take things a bit more steady. To help with your wife are you able to do the lightweight things like washing up occasionally or helping to prepare meals, which can be done sitting down. Don't hide anything from your wife and discuss with her about how you feel about not being able to help as much at the moment. I am sure there will be some fraught times, it's only natural when people are dealing with health issues but discussion plays such a big part in all parties having more understanding and compassion to each other in the situation. It's all a big learning curve but don't run before you can walk....take it steady...get your rest and fingers crossed you will start to feel better soon. X

[fishonabike]

Hello Luke, this sort of condition can be vry hard to get your head (and body) aroond, as you are finding - others have already made some helpful suggestion and i will add my own to add to them

as someone with a chronic poorly understood condition for which there is no effective treatment and which has seriously reduced my capacity to be active since my early 40s, i can identify wth your feelings of guilt about having to rest while others have to cope around you - this leaves you feeling helpless and is very difficult to deal with - but you will get there

may i suggest that you look up information on Pacing from the MS Association and the ME Association - i believe there is similar info available more generally now as it can also be useful for people with the lasting effects of a serious viral infection which recently hit the world (but we can't mention here because posts naming it are removed)

there was guidance issued for athletes returning to physical activity after Myocarditis linked to the lurgy- this might also be helpful for you, even if your myocarditis had a different cause

good luck

[LukeWilliams]

Wow, thank you so much for all your support and guidance here. It’s slightly overwhelming to be honest.

My children are 10 months and 3 years, so young and still in the baby bubble. I’m finding time to have breakfast with them, sit and play in the playroom with them, nothing strenuous, but still having the time to interact.

I remove myself from situations if the 3 year old tries to jump on me or begins to get too physical / playful.

I hear everyone loud and clear, rest rest rest. I think this is my only chance to repair and reverse the diagnosis, if I don’t, then I risk long term damage and that’s scary and what I’m dealing with.

I’ll be easing my way back into work, I have a great team that are helping me and taking the work load from me right now which is hugely helpful to have confidence in that whilst I try and relax and rest.

Thanks again everyone, it’s so nice to have an outlet where people can feel inclusive and not alone, and also hear first hand from people that have gone through this.

I live in Windsor if there is anyone here that’s close to the area.

[Warm-heart]

Hi Luke, I am so sorry to hear this, really tough on you and your wife & young family. Do remember that your mere presence with your children is what they most value as they will interpret the time you spend with them as love. In my lowest times I found the work of Joe Dispenza a real help too (he has several books, eg, amazon.co.uk/You-Are-Placeb..., and watching testimonials online. The body is an amazing healer. Also changing diet helped a lot, eg the Pioppi Diet written by a cardiologist: amazon.co.uk/Pioppi-Diet-21...

You have my thoughts & prayers, please keep us posted (if you wish) 💌

[Travellingman76]

hi Luke, just read your post. It can be a very anxious time. I have been having health issues which the doctors now think is due to viral myocarditis. It’s difficult to rest when you do have children and I think it is a balancing act. But part of the balance is trying to avoid stress and anxiety. Am not near Windsor but if you ever need a chat let me know am willing to lend an ear.