Hi there does anyone suffer from cardiac sarcoidosis

[Kimmykib]

I have recently been diagnosed with cardiac sarcoidosis and have also had a ICD fitted and wondered if anyone can offer tips and advice

[laura_dropstitch Heart Star]

Hello. I don't know anything about cardiac sarcoidosis, I'm afraid, but do have an ICD for a different condition and am happy to answer any questions you might have about that side of things. Let me know if you think I can help x

[Kimmykib in reply to laura_dropstitch]

Hi

Thank you for the reply i know a little about cardiac sarcoid and about the same on a ICD we just got given a booklet and told to look on the internet for information so it has been difficult to deal with and now its fitted i can see and feel it and i still keep having palpatations but it does seem to settle quickly i just wanted to know if anyone had any advice or there own experiences with there ICD

[laura_dropstitch Heart Star in reply to Kimmykib]

I've had my ICD over four years now, I think. It felt strange and quite noticeable for the first six months or so, but now I hardly ever think about it being there, it just keeps an eye on things in the background and is good for my peace of mind

There are a few threads on this forum which might be of interest to you...

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post....

And a BHF page about ICDs here -

bhf.org.uk/heart-health/tre...

If you have any specific questions, feel free to send them my way. Good luck.

[Kimmykib in reply to laura_dropstitch]

Thanks hun i had a good look at the links and they were very helpful

[daveydave]

Hi folks

Ive just finally discoverd that i have sarcoidosis after years fighting for my health. I have lots of palpitations too sometimes so im sure its affecting my heart. Kimmy did you find anything that might help? Im looking for ways to deal with the granuloams and am considering fasting, enzymes, things like that. If anyone has any ideas I would be grateful!

[Kimmykib in reply to daveydave]

Hey davey i havent had it that long to be honest and i have multiple system sarcoidosis and cardiac sarcoidosis and the only treatment i have had is steroids and methortrexate and my most recent pet scan the treatment is work as my lesions seem to be getting smaller which is brilliant news and on the cardiac front i take nevibolol which is a beta blocker and i have a defibrillator fitted and i have felt so much better since having it i still have the little flutter and sometimes palpatations but it has been far better so i finally seem to be getting there

If there is anything i can help with dont hesitate to ask x