Aa
Is it really Cardiomyopathy? Worried about prognosis.
Hi,
I'm a 37 year old male, slightly overweight but generally fit and healthy.
18 months ago, got caught in the rain. Came in out of the cold, was drying off, relaxing, then a left sided spasm-like chest pain came on, leaving me with mild shortness of breath, a fast, heavy heartbeat, a continuous dull aching left sided chest pain, and excessive tiredness and fatigue. I sat on this for months, before finally seeing the doctor.
6 months after the chest pain and shortness of breath came on, I finally had a resting ECG, and an exercise ECG test / stress test and all the results were interpreted as "normal". The cardiologist was going to write me off as a musculo-skeletal case.
I pushed for an echocardiogram, the cardiologist reluctantly agreed 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 seemed normal...
12 months after onset of symptoms, I had a stress echocardiogram. There was comment of normal function, which ruled out ischemia, (coronary blockages). However, I know that my heart took longer to recover from this exercise than is normal for me (i was out of breath for far longer than normal). Unfortunately the technician did not measure the heart dimensions.
18 months after onset of symptoms, a new cardiologist has now arranged another resting echocardiogram, to look again at the dimensions. This is taking place early next month. I still feel easily tired, aching left chest and very slightly short of breath.
The cardiologist says that if this new echo shows no improvement in heart dimensions, he will diagnose mild idiopathic cardiomyopathy and “start me on an ACE inhibitor in the first instance”.
I'm scared. I am only 37. Recently married. I have read frightening things about Cardiomyopathy being chronic and unrelenting in its deterioration. I have read that 70% of newly diagnosed patients do not live beyond 5 years!
My questions are:
Is that poor prognosis definitely the case for everyone, even me, with relatively mild dilation and mild impairment of function?
Is cardiomyopathy the same as "heart failure" - is it just a matter of degree, whether you call it one thing or the other?
How should my condition be treated, to attempt to reverse it or stop it getting worse?
What can I do to help myself? - e.g. food supplements or herbs?
Thank you - I'd really appreciate any insight or ideas... Andrew....
I'm a 37 year old male, slightly overweight but generally fit and healthy.
18 months ago, got caught in the rain. Came in out of the cold, was drying off, relaxing, then a left sided spasm-like chest pain came on, leaving me with mild shortness of breath, a fast, heavy heartbeat, a continuous dull aching left sided chest pain, and excessive tiredness and fatigue. I sat on this for months, before finally seeing the doctor.
6 months after the chest pain and shortness of breath came on, I finally had a resting ECG, and an exercise ECG test / stress test and all the results were interpreted as "normal". The cardiologist was going to write me off as a musculo-skeletal case.
I pushed for an echocardiogram, the cardiologist reluctantly agreed 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 seemed normal...
12 months after onset of symptoms, I had a stress echocardiogram. There was comment of normal function, which ruled out ischemia, (coronary blockages). However, I know that my heart took longer to recover from this exercise than is normal for me (i was out of breath for far longer than normal). Unfortunately the technician did not measure the heart dimensions.
18 months after onset of symptoms, a new cardiologist has now arranged another resting echocardiogram, to look again at the dimensions. This is taking place early next month. I still feel easily tired, aching left chest and very slightly short of breath.
The cardiologist says that if this new echo shows no improvement in heart dimensions, he will diagnose mild idiopathic cardiomyopathy and “start me on an ACE inhibitor in the first instance”.
I'm scared. I am only 37. Recently married. I have read frightening things about Cardiomyopathy being chronic and unrelenting in its deterioration. I have read that 70% of newly diagnosed patients do not live beyond 5 years!
My questions are:
Is that poor prognosis definitely the case for everyone, even me, with relatively mild dilation and mild impairment of function?
Is cardiomyopathy the same as "heart failure" - is it just a matter of degree, whether you call it one thing or the other?
How should my condition be treated, to attempt to reverse it or stop it getting worse?
What can I do to help myself? - e.g. food supplements or herbs?
Thank you - I'd really appreciate any insight or ideas... Andrew....
There is much anecdotal support for the questions you ask. I don't know of any scientific studies or confirmation from the medical community regarding the helpfulness of the ingredient properties, but apparently it is helpful to some individuals. Although I don't have any experience with agents you have cited, I may start a regimen, and that includes fish oil as well. Thanks for your generous comments. Take care.
hi kenkeith
I hope this message finds you well.
I had my follow up echo today. Different technician. The technician said that EF still looks 50% to 55%, although he said that in his opinion the left ventricle was less dilated, probably just within the upper limit of normal range.
This seems to be encouraging - could any reduction in left ventricle size be due to the fact that I have been taking Co Enzyme Q10, L Carnitine, and anti-oxidants like sour cherry juice ( apparently, it has anti-inflammatory and heart health properties). I'm not on any ACE Inhibitor or Beta Blocker. What are your thoughts on these?
thanks
I hope this message finds you well.
I had my follow up echo today. Different technician. The technician said that EF still looks 50% to 55%, although he said that in his opinion the left ventricle was less dilated, probably just within the upper limit of normal range.
This seems to be encouraging - could any reduction in left ventricle size be due to the fact that I have been taking Co Enzyme Q10, L Carnitine, and anti-oxidants like sour cherry juice ( apparently, it has anti-inflammatory and heart health properties). I'm not on any ACE Inhibitor or Beta Blocker. What are your thoughts on these?
thanks
Hi Athena
Thanks for your comments. Sounds like you have a lot to deal with and I really do wish you better. And I agree with you that Kenkeith is very considerate and helpful.
Thanks for your comments. Sounds like you have a lot to deal with and I really do wish you better. And I agree with you that Kenkeith is very considerate and helpful.
hi there,
I mean those kind words. You always help out anyone who has a question on here and you are very kind about it. You never act like a know it all and are never rude... and you do know so very much on the subject.
Have you found a particular book on the subject of cardiomyopathy that you really like? I need to get one.
I am glad you are doing well. Thanks for the kind words and support.
Talk at ya soon.
I mean those kind words. You always help out anyone who has a question on here and you are very kind about it. You never act like a know it all and are never rude... and you do know so very much on the subject.
Have you found a particular book on the subject of cardiomyopathy that you really like? I need to get one.
I am glad you are doing well. Thanks for the kind words and support.
Talk at ya soon.
Athena, you have expressed very kind words and I appreciate your asking how I am doing!. I'm doing very well, and it is good to hear from you! We have a very knowledgable group of experienced participants on this forum, and almost always one can depend on good advice related to heart disorders. Keep in touch, and wish you well going forward.
BTW... like Kenkeith said, the underlying cause needs to be determined, if possible. They checked my arteries as well and I did not have any plaque or blockages, so that was not my cause. We dont know the cause and it could be many things in my case, since I have Rheumatoid arthritis too... and that can do it... as well as other things, even infection. When its not known like that, they say the course of treatment is still the same. If you have artery probs, they can treat that tho. and of course that would help as Kenkeith mentioned.
hang in there...
hang in there...
hi there!
I havent been on here in a long time.
How are you doing?
I am hanging in there. I wore an event monitor for a week and it was fine. That was good.
Just waiting for the next round of tests to see if the meds are working... in a month. Send me some good healing vibes! :-)
I havent been on here in a long time.
How are you doing?
I am hanging in there. I wore an event monitor for a week and it was fine. That was good.
Just waiting for the next round of tests to see if the meds are working... in a month. Send me some good healing vibes! :-)
hey there,
Dont worry before you know anything yet. Hang in there.
I am in the heart failure range - 27% and it can be scary, but there is hope. The meds they have work very well. If you are in the 50% range, that is not bad at all. I understand your symtoms... I have them too... but the meds help after a while. I am on a rather good amount of Coreg and and ACE inhibitor both.
I am also your age. I have other major medical issues, so it can be scary at times.. but I would realy say... dont get stressed out until you have those answers and have that diagnosis. Stress will not help and you cant do anything until you find out, so try to take it easy.
I get my 6 month tests done in a month or two, to see if the meds help. If not, then I will get a defib. implanted. Not a fun thought, but on the other hand, it would be like having my own personal jump starter if anything were to happen. Of course, I hope the meds work! :-)
So, try to keep your sense of humor going strong... and hang in there. I failed my stress test and the echo was bad, so at least you passed yours. They will find what is going on.
KenKeith is super knowledgable (sp?) too and he is very kind, so good to ask him anything.
Cheers!
Dont worry before you know anything yet. Hang in there.
I am in the heart failure range - 27% and it can be scary, but there is hope. The meds they have work very well. If you are in the 50% range, that is not bad at all. I understand your symtoms... I have them too... but the meds help after a while. I am on a rather good amount of Coreg and and ACE inhibitor both.
I am also your age. I have other major medical issues, so it can be scary at times.. but I would realy say... dont get stressed out until you have those answers and have that diagnosis. Stress will not help and you cant do anything until you find out, so try to take it easy.
I get my 6 month tests done in a month or two, to see if the meds help. If not, then I will get a defib. implanted. Not a fun thought, but on the other hand, it would be like having my own personal jump starter if anything were to happen. Of course, I hope the meds work! :-)
So, try to keep your sense of humor going strong... and hang in there. I failed my stress test and the echo was bad, so at least you passed yours. They will find what is going on.
KenKeith is super knowledgable (sp?) too and he is very kind, so good to ask him anything.
Cheers!
hi Kenkeith
I appreciate your comments. Very pleased to read about your excellent recovery.
Andrew
I appreciate your comments. Very pleased to read about your excellent recovery.
Andrew
The cardiologist says that if this new echo shows no improvement in heart dimensions, he will diagnose mild idiopathic cardiomyopathy and “start me on an ACE inhibitor in the first instance”.
>>>>If your heart chamber is dilated due to the heart being overworked, and ACE inhibitor and/or beta blocker can reduce the resistance the heart pumps against and the heart may reverse remodeling.
I'm scared. I am only 37. Recently married. I have read frightening things about Cardiomyopathy being chronic and unrelenting in its deterioration. I have read that 70% of newly diagnosed patients do not live beyond 5 years!
>>>>Going on 7 years, I have recovered from an enlarged heart, low EF 13 to 29%, etc. and today my heart is currently normal in size and functionality. You are quoting a statistic that is very general. It does not include other existing health problems, age, medication effectiveness and compliance, etc.
My questions are:
Is that poor prognosis definitely the case for everyone, even me, with relatively mild dilation and mild impairment of function?
>>> your prognosis should be very good if you maintain healthy livestyle, diet, exercise. However, there are heart issues that don't have a very good prognosis....underlying cause is a major factor.
Is cardiomyopathy the same as "heart failure" - is it just a matter of degree, whether you call it one thing or the other?
>>>>Cardiomyopathy can/will cause heart failure. If the condition is advanced, heart failure will occur as the heart is weak and unable to pump enough oxygenated blood to meet the demand. If the EF is reduced to 29% and below, it is considered in the heart failure range. However, there are individuals that engage in normal activity and feel well.
How should my condition be treated, to attempt to reverse it or stop it getting worse?
>>>Medication, exercise, diet, etc reversed my condtion. Again it depends on the underlying problem. The underlying cause for my condition was ischemia (occluded vessels).
What can I do to help myself? - e.g. food supplements or herbs?
>>>>Answered in prior posts. Your doctor needs to treat the underlying cause...your doctor does not know the underlying cause, and if the ace inhibitor is ineffective that indicates the condition is ideopathic (cause unknown). You may want to get a second opinion whether the condition is ideopathic or not. The medication may help! Take care and thanks for sharing.
>>>>If your heart chamber is dilated due to the heart being overworked, and ACE inhibitor and/or beta blocker can reduce the resistance the heart pumps against and the heart may reverse remodeling.
I'm scared. I am only 37. Recently married. I have read frightening things about Cardiomyopathy being chronic and unrelenting in its deterioration. I have read that 70% of newly diagnosed patients do not live beyond 5 years!
>>>>Going on 7 years, I have recovered from an enlarged heart, low EF 13 to 29%, etc. and today my heart is currently normal in size and functionality. You are quoting a statistic that is very general. It does not include other existing health problems, age, medication effectiveness and compliance, etc.
My questions are:
Is that poor prognosis definitely the case for everyone, even me, with relatively mild dilation and mild impairment of function?
>>> your prognosis should be very good if you maintain healthy livestyle, diet, exercise. However, there are heart issues that don't have a very good prognosis....underlying cause is a major factor.
Is cardiomyopathy the same as "heart failure" - is it just a matter of degree, whether you call it one thing or the other?
>>>>Cardiomyopathy can/will cause heart failure. If the condition is advanced, heart failure will occur as the heart is weak and unable to pump enough oxygenated blood to meet the demand. If the EF is reduced to 29% and below, it is considered in the heart failure range. However, there are individuals that engage in normal activity and feel well.
How should my condition be treated, to attempt to reverse it or stop it getting worse?
>>>Medication, exercise, diet, etc reversed my condtion. Again it depends on the underlying problem. The underlying cause for my condition was ischemia (occluded vessels).
What can I do to help myself? - e.g. food supplements or herbs?
>>>>Answered in prior posts. Your doctor needs to treat the underlying cause...your doctor does not know the underlying cause, and if the ace inhibitor is ineffective that indicates the condition is ideopathic (cause unknown). You may want to get a second opinion whether the condition is ideopathic or not. The medication may help! Take care and thanks for sharing.
Have an Answer?
You are reading content posted in the Heart Disease Community
Is a low-fat diet really that heart healthy after all? James D. Nicolantonio, PharmD, urges us to reconsider decades-long dietary guidelines.
Can depression and anxiety cause heart disease? Get the facts in this Missouri Medicine report.
Fish oil, folic acid, vitamin C. Find out if these supplements are heart-healthy or overhyped.
Learn what happens before, during and after a heart attack occurs.
What are the pros and cons of taking fish oil for heart health? Find out in this article from Missouri Medicine.
How to lower your heart attack risk.
