Wellness

[ruthbe]

Has anyone been diagnosed with myocarditis?.  A dear friends brother was.  He is 56.  Doesn't drink or smoke.  Slightly over weight.  Works in a stressful job.  Feeling very tired and an occasional flutter in chest, but not actual pain.  Those are basic symptoms.  Was diagnosed with stress test and echo.  He is seeing a cardiologist. 

He has been able to work.  Resting on weekends.

I think she wants words of wisdom or life experiences from others who have experienced the disease.  But also understanding that every experience is different. 

[sgraham30]

@ruthbe I was told June of this year that at some point in time I'd had myocarditis, it wasn't known when I had it or what caused it, it was found when I had a cardiac MRI June 2017. This was ordered & interpreted by my current electrophysiologist (cardiologist who specializes in electrical disorders of the heart)

Here's some info on it :myocarditis

I'm convinced that I had it the summer of 2015, I think mine was caused by bacteria that traveled from an infected tooth to my heart, which caused inflammation of the heart muscle. My symptoms were fatigue, extreme shortness of breath to the point where i was literally gasping for air when I attempted to do any type of cardio, & swelling of my feet, fingers, & ankles.

When I my doctor called me with the MRI results, he told me that I'd had myocarditis & it had damaged my heart, I have several areas of scarring in my left ventricle because of it. I also have multiple arrythmias because of the damage to my heart.

To date, I've had 2 ablations to attempt to eliminate the arrythmias. The first one was a failure, my arrythmias returned after 8 months. I started out with 4, had 7 when they returned.

The 2nd ablation my electrophysiologist got the worst arrythmia, then the procedure had to be aborted because he accidentally nicked my aorta,leaving me with 6 arrythmias. I ended up in ICU for 2 days.

He said that he could do  3rd ablation to try to get rid of the other arrythmias. I made it clear that I did NOT want a 3rd ablation so my arrythmias are currently being controlled by an anti-arrythmic medication called flecainide. I'm starting to have problems again so I don't know when exactly, but I'm sure there will be a 3rd ablation in my future. I'm not too thrilled about it but if it's my best option, I'll do  it.

[ruthbe]

thank you for the information.  Best of luck to you!!  Sending you my prayers.

[sgraham30]

@ruthbe, thank you.

[TeriK]

Tears just automatically came to my eyes when I saw the word Myocarditis. About 10 years ago I came home from teachinng school for the day. All of the neighbors were still out in their yards,as the ambulance had just left my house. My 14 year old daughter had come home from school and my 19 year was sitting on the coach with his coke can still in his hand.....dead!  We didnt find out why for 3 months. The autopsy said Myocarditis. I am so glad your friends was diagnosed soon enough to deal with it.  They also said it wasnt the first time my son had it. The whold family was tested because it can be hereditary. We were all ok. Apparently his was a virus that attecked his heart. He hadnt been feeling well, low grade fever off and on but would take a tylenol and feel fine. But was on pain pills from a major knee surgery which they said probably masked the pain. Also did have shortmess of breath but thought ashma was acting up.  Best wishes for your friend.....again at least it was diagnosed now do what the doctor says.  Best wishes!

[sgraham30]

@TeriK, I'm so sorry for what happened to your son, it's a devastating diagnosis, I know it's turned my life upside down.

I knew my shortness of breath wasn't from asthma because of how severe it was & because I wasn't wheezing. When I have shortness of breath because of asthma, wheezing always accompanies it.

[sfnative]

It is devastating to read accounts of those affected personally or with loved ones with myocarditis.

When I saw the title to this thread, the first thing that occurred to me was, "This is very serious stuff and nothing to fool around with."

As you've read, myocarditis can kill.  It does every day.

I've been ill for nearly 8 weeks and seen 4 physicians.  Each has asked me the questions to rule out myocarditis and for that I am grateful.

Please, if you have a loved one or know someone who has been ill for a while and is putting off being seen by a physician, do everything in your power to get them in to see their PCP. 

[TeriK]

Thank you! Yes, good luck to you ! I can remember the day he said to me" Mom, I think my asthma is back again." I remember saying, "I hate asthma". Wish I would have questioned him a bit more.

[TeriK]

I agree and dont just think because someone is young that it cant be Myocarditis. The Drs. said to me that even if you had brought him in we wouldnt have given him a echo because you dont just give a 19 year olds a echo and that is the only way we would have diagnosed it.  In the last 10 years or so I think they have learned a lot more about heart conditions such as that and kids. We as parents have to be proactive and usually I am but sure missed it with my son . When I look back there were signs but he had 3 surgeries in the last year he was alive and I just missed it.  So many If only.........

[sgraham30]

@TeriK,the gold standard for diagnosing myocarditis is a cardiac MRI with contrast. Before my current electrophysiologist started treating me, an MRI was never mentioned. My first visit to him, he did a 12 lead, 10 pages of read out EKG to see what was going on with my heart. Based on what he found, he ordered the MRI.

I've had numerous echocardiograms in the past 2 years, none of them indicated that I had heart damage from myocarditis. They also missed a hole in my heart, which was discovered when I had my most recent ablation earlier this year.