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Avatar universal

Is it really Cardiomyopathy? Worried about prognosis.

I'm a 37 year old male, slightly overweight but generally fit and healthy.18 months ago, I was drying off indoors after getting cold and wet in the rain, when I had a left-sided spasm-like chest pain, with a fast, heavy heartbeat and mild shortness of breath. This has left me with a continuous dull aching left sided chest pain, slight s.o.b and excessive tiredness & fatigue. I sat on this for several months, before finally seeing the doctor.

6 months after this episode, I had an ECG, and an exercise ECG / stress test: results "normal". The cardiologist thought my symptoms were musculo-skeletal.  When I pushed, he reluctantly agreed to offer an echocardiogram, as a "reassuring tool". This showed a slightly dilated left ventricle:

LV End Diastole 5.75cm ( normal is 4cm to 5.5cm)
LV End Systole 4.15cm ( normal is 2.5 to 4cm)
LVEF was 50% to 55% " low normal" Everything else normal...

12 months after onset , a stress echocardiogram showed “normal function, which ruled out ischemia, (coronary blockages)”. However, I took longer to recover from the exercise than is normal for me (i.e.: I was out of breath for far too long). The technician did not measure the heart dimensions.

18 months after onset of symptoms, I am still easily tired with an aching left chest. A new cardiologist is arranging for a second resting echocardiogram, again to measure the heart dimensions. He says that if this new echo shows no improvement he will diagnose mild idiopathic cardiomyopathy and “start me on an ACE inhibitor in the first instance”.

I'm scared. I am 37 and recently married. I have read that Cardiomyopathy is unrelenting in its deterioration. I have read that 70% of newly diagnosed patients do not live beyond 5 years!

Is that poor prognosis the case for everyone, even me, with relatively mild dilation and mild impairment of function? How should my condition be treated, to reverse it or stop it getting worse? What can I do to help myself? - e.g. food supplements or herbs?

Thanks… Andrew
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Avatar universal
Please do not let the Internet statistics worry you! I have cardiomyopathy (2nd time during my life) which means that I did fully recover the first time and am almost fully recovered this time!  Coreg or the generic carvedilol is a miricle drug and saved me both times. My EF was 30% the first time around, and 35% this second time around. The statistics you see on the internet are based on old studies and may even include rates from 3rd world countries, the current survival rate in the US is over 95%!! every case is differnt, you may fully recover, you may slightly improve, you may stay the same, or you might go up and down. For the majority of people the meds improve your heart function and/or keep you from getting worse. Your case sounds mild, mine is currently mild at 50% and I live a completely normal life, and my cardiologist reassures me all the time that I am not going to die from this. good luck to you, and try not to worry, the anxiety makes you feel worse!
Helpful - 0
Avatar universal
I wouldn't be too worried because the incident happened 18 months ago but you still have some type of chest pain. I have been having chest pain off and on my whole life, including being short of breath, etc. being told that I am still ok. Recently, I was diagnosed with perinatal cardiomyopathy, being cardiomyopathy during my first trimester of pregnancy with my last child. I do not know if I am over it, but I still get tired and can hardly do any type of exercise or anything. However, I would ask your doctor to check you for chest arthritis (sounds crazy but true). When I was 19 I was diagnosed with the chest plate joints having arthritis because I am always having chest pain. Also, the slight swelling may be your heart trying to recuperate itself from being overexerted. I was always told that everything is ok but I still have chest pain, dizziness, swelling in my feet and limbs (sometimes in my limbs but always my feet). Hang in there-things can always be worse. I would not worry just yet because if it is mild chest pain, then it may be in the early stages, if at all.
Helpful - 0
1293682 tn?1311956071
hi,
Your results are very good.  I wonder why they consider that cardiomyopathy? (just wondering to myself, I am no expert)  Anyway, that is very good news.  My EF was 27% and I am sure hoping I get better.  Your EF was good from the start... 50% is the low end of normal.  I would love to have that EF about now! :-)

anyway, take care and be happy you are in a good range.  I am on major amounts of Coreg and Lisinopril and now a diuretic.  Those same meds helped KenKeith who had similar EF to mine, so I am hopeful!

Good luck to everyone!  Cheers!
Helpful - 0
Avatar universal
I had the follow up echocardiogram today. It was a different technician. I know that two people can interpret the same images differently.

He said that EF was 50% to 55% and that LV End Diastole arounfd 5.5cm ( normal is 4cm to 5.5cm)

Won't have the full results until he has written up his report, and my followup appointment with the cardiologist is quite some time away.

However, It seems encouraging.

Can the apparent reduction in the Left Ventricle size be due to the fact I have improved my diet (less sodium, less fat) and have increased the level moderate exercise i have been taking. I have also been taking anti-oxidants such as drinking sour cherry juice, and taking Co Enzyme Q10 and L Canitine - could this have helped?

Thanks
Helpful - 0
Avatar universal
I had a baby in January and they think the pregnancy put pressure on an already weaker heart. It isn't postpartum cardiomyopathy though. Basically all I know so far is that I have 'moderate ventricular systolic dysfunction'. The cardiologist thinks I may have always had a weaker heart. Explains why I was rubbish at sport...  
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Avatar universal
Hi thanks for your comment. I have no idea what caused this. I am kicking myself for not taking myself straight off to A & E to get it checked out, the moment the pain / spasm came on.  I just thought i'd sleep it off. what a fool.  I'm thinking it may  have been a mild case of viral myocarditis ( i had a nagging sore throat some weeks earlier), so I guess there is nothing they could have done to treat this anyway - but I just don't know.

How are they treating you? Are you on any meds?

andrew
Helpful - 0
Avatar universal
Hi, It's good advice, what you recommend. To feel better I have started to take more moderate exercise ( walking, golf, cycling, badminton), and I am trying to loose weight.  I'm eating more salads, cutting back on the fatty foods and reducing the salt intake. I might even be able to get back into some old clothes if I keep this up! :-)  But for now, I can still "feel" the dilation.

Why won't they do another echo for you? Have they not given you a diagnosis?
Helpful - 0
Avatar universal
Hi  - indeed it really is rubbish having to deal with this in your 30s!  We're supposed to be in the prime of our lives, planning and building for the future. Trying to keep a positve outlook (like you) is definitely the way forward.

Have they given you meds? And what do they think is the cause of your problem?

Wishing you better, A.
Helpful - 0
Avatar universal
Hi,  I just wanted to let you know that I started having these symptoms 11 years ago and I can't get a Dr. to do another echo on me.  I just continue to get weaker, but I still feel pretty healthy most of the time.  Also, my father was diagnosed with cardiomyopathy at 50.  He was in terrible shape, already in congestive heart failure.  However, he took care of himself and did what he could to improve symptoms and his quality of life and managed to live another 13 years.  Take care of yourself.  Don't focus on the cardiomyopathy diagnosis too much and focus on ways to improve the way you feel.  Find out what they can do to help eliminate the chest pain.  That will ease your mind a great deal.  Take care.
Helpful - 0
Avatar universal
Hi. I am 32 and have also been told I have cardiomyopathy. They are sending me for an MRI to find out more info about my heart. As far as I am aware, every case of cardiomyopathy is different with a differing prognosis. If you only have mild loss of heart function you probably don't need to panic just yet! I have been told that mine is moderate and have a possibility of reversal in the next year. If not, the plan is to try and stabilize and support heart function for a long period of time. The info on the internet is enough to stress anyone out. Listen to your cardiologist as they will know the most about your specific situation. And btw, isn't it rubbish being told you have to deal with this in your 30's? Hope you get some more info soon.  
Helpful - 0
Avatar universal
Sounds like you may have had an episodic abnomal heart rate like atrial fibrillaton or also known as parasoxmal atrial fibrillation PAFor Atrial tachycardia . This can cause pressure in the chest, SOB, Pain, dizziness, and fast irregular heart rate. ( I have a similar situation and am 29years old). This could be referred to a Electrophysiology doctor to be diagnosed. Usually you would have to wear a Holter monitor for 24 hours or even a month to catch these episodes on recorder. I would avoid caffeine, smoking, and alcohol until you are sure what is going on. All of these things can trigger an episode of PAF. Usually can be treated with minor medications without incident.
Helpful - 0
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