Myocarditis

[Chlica0923]

Good morning, I am new on this forum. I got diagnosed with myocarditis the beginning of December and at the moment my Ef is 20. They are trialing different drugs to see what works and what doesn’t. Is there anyone on here with the same condition and can you make a full recovery from it? It is such a lot of information to take in from the cardiologists.

[Hidden]

Dear Chlica0923

Hello and a big welcome to you and I hope that you will get both the answers and support that you need from us.

Unfortunately I do not suffer from the same ailment as you, so that side I cannot be of any help, other members will come along soon that can.

I can only offer support and a hearing ear, I hope that is enough.

Welcome once again, we are looking forward to hearing and learning about your journey.

Take care

[Chlica0923 in reply to Hidden]

Hi Blue1958

Thank you for taking the time to reply. I think it is just going to take time for them to get my medication right. Hopefully they will be able to get my EF above 20%. 🤞🏻

[12dr]

Hi I have been diagnosed 7 weeks ago and been very unwell with it mine kicked off during covid .I’m still not feeling better but many do after a couple weeks .How were you diagnosed if you don’t mind me asking ? Was it an echo and bloods ?

[Echo6]

Hello!

Sorry to hear you are having a difficult time. I had Myocarditis and Pericarditis last year and my EF was reduced too. It’s much better now! It is now back at the bottom end of the normal range! Stay positive, follow all of your cardiologists advice and don’t Google!

Best wishes x

[Hidden]

Hi. I was diagnosed with myocarditis in May 2021. Having been in contact with many others, it's clear that each person is different. Some recover quickly and make a full recovery. My experience is that it is taking much longer than the cardiologist thought it would. Knowing what I do now, I would have done things differently. At the beginning, I would have good days and bad days and would try and do things on the good days. It was like taking one step forwards and two steps backwards. It took many months before I stopped getting worse. Although I was resting and taking the medication prescribed, I tried to carry on doing what I could.In the end I had to give in to it. My medication was increased and I ended up having to have a period of complete rest for 2-3 weeks. As there was some improvement, the cardiologist has been working with me to very slowly increase what I can do.

I still have to rest every afternoon - and not do very much the rest of the time. Some meds have been decreased but there is still a way to go.

The good news is that the cardiologist is confident that I will make a full recovery. I have no scarring and an MRI in October showed an improvement and my heart rate is under control. I have to plan everything carefully to make sure I don't do too much on any one day or week and have had to say no to so many things. But it will be worth it if one day I can get back to full health.

So I hope that you are able to do the same. Listen to your body and push for all the help you can get. And rest!

[Hidden]

Welcome Chlica0923! My question is: Does your Cardio know what is causing your Myocarditis. As Habershon says some will recover quicker than others depending on what is going on with their Heart. My EF is 25% but my Heart is enlarged and does not pump properly. Keep a list of medications and side effects, if any. This helps you and your Cardio. It's been 6 years and I am doing well but I have to watch not to overdo. Slowing down is one of the hardest things for me. You are right, finding the right meds is key. Have a Blessed Day!

[Beats_on]

Hi there I was diagnosed with myocarditis in 2020 - from an autoimmune disease and covid. My EF was 10%, it’s gone up to 47%. Lots of great drugs out there. I did cardiac rehab and now can enjoy regular activities. I enjoy badminton. Build your stamina up slowly. Don’t lift heavy weights. Yes I have heart failure but I can lead a relatively normal life. Stay positive about your future. It takes a long time to get your head around diagnosis. I went from intensive care and 6 months of feeling really overwhelmed, sad, I was 36, I was told I might need a heart transplant. Now 2 years later I feel more confident in myself. Good luck with your journey