Recent Myocarditis diagnosis for my husband.

[GreenMonday]

Hi all. After a really difficult six months of my husband being admitted to hospital three times and having a pacemaker (due to heart block) an ablation (due to svt's), MRIs and Pet scans he has now received another diagnosis of Myocarditis. He is 45 and four years ago also had a replacement aortic valve. As you can imagine it's been really difficult for the whole family (especially during the pandemic) but we now have another diagnosis and are struggling to receive any further consultant appointments to discuss treatment. I am really struggling with the whole situation. Basically I was wondering if anybody could advise what we can expect going forward. In himself he is feeling ok but does get tired and strangely a lot of pains in his back (this is intermittent). Any information would really be appreciated as we really do feel as though we are being lost in the system at the moment. Thanks all.

[Stu888]

Hi I can’t advise much on myocarditis as when I was diagnosed as having it I had recovered from it and within 6 months no longer had any symptoms of having it and have now fully recovered. I believe that they have treatments for it such as anti inflammatory and steroidal drugs but your consultant will know the best way forwards. If you are having trouble getting information all I can say is keep on ringing the secretary of your consultant and explain your concerns and anxieties. My wife did this for me as I was very stressed at the time and eventually got me seen. They are very busy, particularly at the moment, but if you keep on asking I am sure they will eventually reply. My uncle had an Aortic valve replacement last year (and triple heart bypass) and has now fully recovered so I think your husband has passed the most difficult stage of his journey.

The mental side of heart issues hit me quite hard and I struggled but would recommend reading the book “Mans Search for Meaning” by Viktor E frankl. It puts you in perspective of facing up to issues in your life but can get through them and it gave me inspiration.

Good luck and I hope you get some resolution soon!

[GreenMonday in reply to Stu888]

Hello, Thank you so much for taking the time to reply. It sounds as though you have also had a really tough few years. We have actually had calls with various consultants over the past week but we are struggling to get a joined up treatment plan. They are now suggesting the scan may not be showing myocarditis but possibly cardiac sarcoidosis. It's so hard for all of us to move forward when we still don't know exactly what we are dealing with. To say anxieties are running high is an under statement. Thank you so much for the book recommendation, I will be ordering it. Thank you again and I wish you well.

[Stu888 in reply to GreenMonday]

Yes a Sarcoidosis was one of the 4 possibilities of my original diagnosis but they ruled this out (I had a lung growth picked up on MRI that was suggestive of Sarcoidosis or lung cancer but was eventually diagnosed as a harmless hematoma!. Dr Richard Snowden at Broadgreen Liverpool was an expert in sarcoidosis (and arrhythmia) if you are allowed second opinions.

Good luck and I hope they get to the root of your issues.