Myocarditis? Low ejection fraction? Read for reassurance....

[dg2024]

I got myocarditis without finding any cause a month or two ago. I have been on a rollercoaster journey. In and out of hospital.

My ejection fraction dropped to only 25%. I was thinking the worst. I was in a low place. I remember dragging the drip trolley around in the hospital taking each day at a time. My mind can be cruel to itself sometimes by catastrophizing. I've have had incredible care by the nurses and doctors. I cannot thank them enough. They are my heroes. It moves me to tears what they've done for me.

A few months later after taking my tablets religiously, I am getting better. My ejection fraction is up to 45%. That is a great improvement. Yes I have googled and checked with AI everything and scared myself silly. The doctors (no surprise!) know what they're doing. Trust the medication. Follow their instructions and the chances are you'll get better. I'm not fully out of the woods yet but I'm on the right track. Don't give up. And don't over google like me! I justed wanted to give someone hope if you're suffering with myocarditis.

[RufusScamp]

Today's treatments are wonderful. My E/F improved from 20% five years ago to 60% a couple of years later. There is always hope.

[dg2024 in reply to RufusScamp]

Wow. 20%. That's low. To 60%. Incredible. Well done. I'm taking 10 medications a day currently. I said to myself, whatever it takes. I will do it. My only regret!? I wish I'd studied medicine and become a doctor.

[dg2024]

Just to add to my story above. I've had additional complications like blood clots and these are being handled. I was also convinced that I had dilated cardiomyopathy. When you see that on the list of possible diagnoses you just think the worst.

I really want to thank the medical staff who are treating me. I've always had huge respect for doctors and nurses. Now even more.

Yesterday I was at the hospital and dropped off some thank you cards. I had a tear in my eye when I said thank you.

[Wire57 in reply to dg2024]

good morning hope your feeling a bit more positive after reading some of the comments.

Five years ago I had a cardiac arrest having always thought I was very fit, I only survived because the shopping centre had bought a defibrillator two days before.

I later discovered I had dilated cardiomyopathy due to genetics. My EF was 10% and I was not expected to survive the sixty mile ambulance transfer to the specialist hospital. Now I have an RF of 33% walk over ten miles a day and am enjoying life to the full. There is life after heart failure so grab the second chance with both hands and enjoy the ride.

Take care and good luck.

[LizzieS33]

this is reassuring and I wish you well. My husband was diagnosed with dilated cardiomyopathy a couple of months ago and it has been a real rollercoaster. I am so glad that I have found this forum and all of you lovely people as reading about it on google was terrifying.

[HHH2017]

Hi, great to read your story and to hear how well you've been treated. Myocarditis isn't an easy one to disagnose so Im pleased your Drs & nurses have done well by you.

I had acute perimyocarditis nearly 7 years ago. It was a long road to recovery (2 years) and my life has permanently changed. I have a 'new normal' now but I am a live and I thank God for this.

As its still such early days for you I'd just like to suggest you continue to take it very easy. Our mantra on here for myocarditis is REST REST & then REST SOME MORE.

Overdoing doing it on a good day can lead to one step forward & 6 back!

My EF has settled at between 50-55 which is good but no further improvement in years now. My heart remains enlarged and scarred and struggles on exertion especially inclines, stairs etc but I can do most things at my own new slower pace.

I hope you continue to progress and improve but please take it very slowly & look after yourself.

Thank you for spreading good news 😊

[MoretonCross]

There's quite a lot about sudden onset myocarditis on YouTube. Can't discuss it on here because it's verboten. Good luck with it all.

[dg2024 in reply to MoretonCross]

What is forbidden? What do you mean?

[MoretonCross in reply to dg2024]

We are not to mention the recent worldwide health scare and the vaccinations thereof. As I said, you might be able to find out why you got myocarditis unexpectedly if you do a YouTube search.