Diagnosed myocarditis in China

[Rykerfive]

I’m working in China and just diagnosed, what is the recovery time ?

[SheldonC]

Grab a piece of string and measure it!

[SheldonC in reply to SheldonC]

From what I have read, a few months to many years, it really does depend on so many factors.

[Milkfairy Heart Star in reply to SheldonC]

Have you got a lived experience of myocarditis?

[SheldonC in reply to Milkfairy]

I think I said “from what I have read”! Have you got a lived experience of myocarditis?

[Milkfairy Heart Star in reply to SheldonC]

Please can you help me understand why you feel it necessary to respond in the way you have to me ?

[SheldonC in reply to Milkfairy]

If you help me understand why you responded to me the way you did?

Is it a prerequisite that someone has a lived experience to reply?

[Milkfairy Heart Star in reply to SheldonC]

Having a lived experience of a condition that you can share with another is often very much appreciated by another forum member

[SheldonC in reply to Milkfairy]

But not essential to reply! So your response to me was for what purpose? Best not reply here as I fear you are hi-jacking the op’s post.

[Milkfairy Heart Star in reply to SheldonC]

The NHS recognises the importance of the lived experience.

Most research funding requires patient and public involvement.

england.nhs.uk/blog/buildin...

Empathetic responses with kindness are usually welcomed.

Last response from me.

[SheldonC in reply to Milkfairy]

But as I said “not essential to reply”.

Not sure what point you where trying to make, but you succeeded in hi-jacking the thread.

I assume every other reply that is not from a lived experience will get the same response from you?

My last response.

[Clerkenweller in reply to SheldonC]

We try to treat people on this site with support and respect answering from our own lived experience. Glib answers are not a help.

[SheldonC in reply to Clerkenweller]

I answered from my lived experience of carditis and the answer was not 'glib', poor humour maybe, but it is what I experienced as no one (medically trained or otherwise) could answer this question when I asked it.

[CrazyLif in reply to SheldonC]

And I do understand the immense frustration of not getting any answers. Myocarditis is a rare condition that has been ignored to now. So very few doctors or specialists/ cardiologist know anything about it or the long term diagnosis or effects - hence it is incredibly hard to get any information. There literally just isn’t any out there. So in the mean time the patients are left drifting around with no answers.

[CrazyLif]

Early intervention and rest is key. If it becomes chronic it’s there to stay with lost of follow on problems. Don’t ignore it, and take care of yourself. There is very little knowledge about the long term prognosis, as it used to be very rare condition until now.

[Rykerfive in reply to CrazyLif]

Thanks, I am still waiting on my full prognosis.

[Milkfairy Heart Star]

I had Myocarditis about 10 years ago. It was found on my 1st MRI.

I have been left with a small patch of scarring which showed up on my subsequent MRIs.

I still have ongoing chest pain as I live with vasospastic angina.

Most people do recover overtime, unfortunately some people take longer to recover or develop chronic myocarditis.

Cardiomyopathy UK has this information which you might find helpful.

cardiomyopathy.org/about-ca...

Rest, rest and more rest is important. Then it can be 2 steps forward one step back.

Try not to be tempted to do too much especially when you feel a little better.

Pacing your activity is really important.

You can also contact the BHF cardiac nurses by email for further advice and support.

[e-mail]

[Rykerfive in reply to Milkfairy]

Thank you, problem is I am currently working in China, and also still trying to get a clear indication of severity and long term treatment from the Chinese doctors.

[Milkfairy Heart Star in reply to Rykerfive]

That must be challenging!The BHF cardiac nurses are very helpful and knowledgeable so it maybe worth emailing them.

On going tiredness and fatigue can be a big issue.

How the condition affects each individual is different. However the recovery time can be months.

Have you had a cardiac MRI?

This test can show how the heart muscle has been effected by the infection.

I hope you can get the support and information you need soon.

[croggler]

I’m three months in & just starting to recover. I do believe everyone is different but I hear 6 months to fully recover. If you’re on Facebook , there are some helpful myocarditis groups on there with varied experiences

[Rykerfive in reply to croggler]

Thanks for the info, I will check out FB.

[HHH2017]

Hi Rykerfive, Sorry to hear you have myocarditis. Can I ask have you hospitalised?

I ask because severity of the attack tends to link to recovery time.

I was in hospital for 3weeks with acute myocarditis & pericarditis. For me recovery was 2 years and I am left with some permanent damage to my heart so life has changed considerably but Im still enjoying it.

The most important thing is rest! You will have good days and bad days and will, like all of us, probably over do it on the good days! Its been said already but its true its a recovery of 2 steps forward & 3 back for quite a while.

You will however get to know your body, your limitations and your levels of activity/rest needed.

At this early stage I advise taking time of work as much as you are allowed, give your heart time to rest & repair. My stepson works in China and I know systems are very different but I hope you can do this. (If you've been hospitalised this maybe easier to achieve).

Your heart has most probaby been enlarged, will be working extra hard and has suffered a trauma. It needs time to rest and recover - did I mention that 😉 please be as kind to yourself as you can be. It could be 1 month, 3 months a year 🤷🏽‍♀️ It will depend on the severity, previous health, ability to rest and most importantly IF there is any long term damage (this is rare). MRI, ECG's, heart monitors, echo & angiogram are all common tests in this country if you haven't already had some of these do talk to your Drs if symptoms are on going.

Out of interest what part of China are you in? Best of luck with everything - it will get better 👍🏽

[Rykerfive in reply to HHH2017]

Thank you, I am currently in hospital, it’s a bit difficult to get answers , but prob for a week.I am still waiting on what the recovery plan will be.

I am in Shenzhen.

[HHH2017]

Hi, how are you doing? Better I hope 🤞🏽 Are you home yet?

[Rykerfive in reply to HHH2017]

Hi, home ( in China) after a week in hospital and 2 weeks of total rest. Just had a heart scan today and it came back with no issues , although I have been told I have an irregular heartbeat. Don't know if this is from the Myocarditis or not. I also get very tired very quickly. Been taken off all the drugs I was on.

[HHH2017 in reply to Rykerfive]

So glad to hear you are home and that scan showed no permanent damage is fab news.The tiredness will likely continue for quite a while and don't be surprised to get chest pains/tightness sometimes especially as you start to do 'a little' more. Really pace yourself. Your heart is a muscle that has gone thru a huge trauma, it needs rest and then v gentle exercise, gradually building up to normal. But Im sure you will do great. You are young & otherwise fit and healthy. Though do get regular checks and follow up on irregular heart beat but they wouldnt have let you home if not happy. Taking two weeks of complete rest is excellent 👌🏼 Most of us on here have fallen foul of having a good day and gettin over confident doung too much then having a set back so baby steps and still lotsa resting if you can 😊I really am so pleased you are out ofhospital and you can nowlook forward to a good recovery ❤️