Hi i went back to see the doc after the angiogram today, was told that my arteries were clear but they want me to have an echo because the doc is 99% sure with my symptoms and what's gone on with me I have cardiomyopathy. She sort of brushed over it when i asked what it was and if it was serious, so can someone please enlighten me. If it is a serious condition I'd rather know guys so please don't worry about upsetting me.

she gave me some calcium channel blockers today if that's any help, also i have an underactive thyroid if that tells anyone anything.

thanks for any info

Jackie x

This means that the heart muscle is inflamed. It is nothing to full around with. When is your echo? This is something that needs to be addressed and not left alone. If your echo is not within the next couple of days, I would call your dr. back and tell him/her that you want more information and testing. Good luck to you and let us know how you are. Bern

Thanks for that Schaff, she did say to ring the hospital to get the appointment sorted out, and i said "ok", but she seemed insistant. She was v. careful no to tell me too much, but I guessed it was serious by her 'not telling' me if you know what I mean.

Will phone hospital Monday and let you know what they say afterwards.

thanks for the help

Jackie xxx

Actually myopathy is beyond the inflammation state (myositis) and already in the muscle weakening stage. It is EXTREMELY serious. Since there are about 4 different types, each with its own prognosis and treatment, it's important to get a workup by a GOOD cardiologist.
An important number is called the "ejection fraction" which is the percentage of blood you are expelling with each beat compared to the averages. As the heart weakens, it is able to pump less and less efficiently and that causes most of the problems.

Unfortunately Jackie,
Cardiomyopathy is synonymous with heart failure (which is a term doctors don't like to use around patients for obvious reasons.)

Perhaps however, your doctor is barking up the tree...it happens a lot. The TESTS will tell.

Hi Jackie, I have been in a state of heart failure for some time now, it goes between mild to moderate and is very dependent on my level of activity. I am a 41 year old female and waiting for heart surgery to repair a hole in my heart and then following that i will have a valve replacement. Until then they give you meds and expect you do deal with the rest. You need to find out what the underlying cause of your heart enlargement is? Even after they knew that my heart was enlarged (by chest xray) then by an echo, i waited 2 months to see a cardiologist who then booked me for a TEE another month away. Anyways what i do understand is that you can live this way and they really don't seem to care. I am not sure what your symptoms are but a few you may experience if it gets worse is swelling in legs, hands, face, abdomen. Eventually your liver becomes enlarged you will have pain under your right rib area and kidney area. I take 120mg of diuretics daily. At first you will have shortness of breath with activities but eventually this will happen at rest and become worse when you lie down so most of the time you sleep with pillows or sitting up. You may be lightheaded or have the feeling your on a ship. You may passout without a moments notice. Chronic cough due to the congestion in lungs. Extremly tired all the time. Eventually you may experience arrythmia's. It is very seroius and you will need to find out what is causing your cardiomyopathy. I don't like that they are taking so long to fix my problem as my heart has had to work extra for many years and they tell me even after surgery i may still have problems. This is a defect i was born with and i started having symptoms 10 years ago. Good luck and i would be interested in knowing what they find. Sue

Wow, you almost make it sound like a death sentence. I think it is different in EVERY case. It all depends on which type and what the EF is at the time of diagnosis.

IMHO an echo should have been done prior to angiogram!!?

The least expensive and the usual steps are to first do an X-ray and EKG. If these tests present abnormalities, THEN an evasive (angiogram) test is done. At that time a stent or stents can be placed in blocked arteries >70% or about.

An echo will provide chamber deminsions and heart's pumping effiency. If one has heart tissue damage that cardiomyoathy indicates, then the heart's EF will be compromised, the walls of the heart will "quiver" and will display an on screen visual of the damaged area.

Unless something is left out of the original post it seems to me a big jump with an angiogram.

Ok best to start from the beginning and see what you guys think then.

the whole of my moms side have had heart disease / disorders. Her little brother was born with a hole in his heart and died when he was 2. My maternal Grandmother died of heart failure and had diabetes / cancer you name it, she wasn't well. But her heart was also a problem. they all have angina.

My Dad has angina and had a mild stroke. He has been told there is a problem with his vavles but they aren't doing a lot about it as his symptoms are 'mild'.

Since very small one doctor or another has told me i have a heart murmur. then another has told me i don't. After 30 odd years you don't take too much notice of them any more. then 18 months ago I started getting short of breath when walking and exerting myself, this shortness got worse an dwhen i went uphill I found I had chest pains that stopped after a few minutes if I rested.

totally aware of angina I took myself up the 'quack'. wher I was told I was too young to have any problems at all. During this time I also found myself more and more exhausted and sweating wheenver I do anything. The pains were getting worse and working their way up my chest and into my throat, the pain is like a severe pressure.

Eventually a doctor took me seriously and sent me to cardiology. I was given and ECG and told it was ok, but the cardiologist was not at all happy because I don't smoke or drink and my cholesterol was 6.3 and my blood pressure was 190/90. my lower number is never below 90 whenever my BP is done. so she gave me a GTN spray and booked a stress test for me. Low and behold the GTN helped the pain!

The stress test didn't go on for long enough and was stopped as I was distressed, so and angiogram was booked. the first one had to be cancelled because they couldn't find a pulse in my groin, yet it was there in my wrist and foot? finally it was sone via my arm in April and I was told no blocked arteries, but the surgeon told me straight away he thought I had a rare heart disorder, he was also pretty taken with how cold I was, which I always am, I can't get warm . .............. Friday at the hosptial she told me they were pretty sure it was cardiomyopathy.

I also have an underactive thyroid, which is not controlled as it seems to just drop at a moments notice, if that's anything to do with any of it? clutching at straws here.

They have now given me calcium channel blockers too. I get upset and the pains come on, I carry bags, the pains come on, I go up the stairs, the pains come on ...... I understand the angina, but I think they are looking for the reason for it now.

any help here is so much appreciated

Jackie

Hi Jackie,

Sorry to hear of your extensive health problems.

I see, you had a stress test before the angiogram. The stress test should provide the doc information regarding the heart's efficiency output and evidence of any ischemia (lack of blood flow) to the heart muscle and hypokinesis (decreased, abnormal muscle movement). The fact you did not finish the test does not indicate a lack of information to help make a dx.

Probably the echo will confirm the stress test result, and it will also focus on blood flow through the valves regarding a possible murmur issue that needs treatment.

It seems to me to give a stress test before an echo is unusual. In addition to help in dx the test can provide the doc with how much exertion one can safely sustain in developing the parameters of an exercise program... A stress test (treadmill) can sometimes be detrimental to a patient's heart under certain circumstances.

Hi again

Can I ask which country you are in?

We are in the Uk and I'm wondering if you live somewhere that they do something different.

My Dad went through exactly the same procedure and testing, all in the same order and he lives in a different health authority area.

I will be asking why a non invasive procedure couldn't have been performed first though when I go

thanks for the help

Jackie

Jackie:

I had a nuclear (thallium) stress test recently and flunked it. So I was sent to get an angiogram. I have six coronary bypasses dating from 1981, and evidently that fact "fooled" the stress test, because they found no blockages on angiography.

Back to your original point, cardiomyopathy is serious. Have you had a child in the past few years? That will sometimes trigger cardiomyopathy.

Shortness of breath and angina in the absence of coronary blockages may indicate that your ejection fraction is substantially reduced. That in turn cuts down on the blood available to your coronary arteries and to the rest of your body. I've had congestive heart failure since at least 1994, and my left ventricle ejection fraction is 35% (vs a normal 55-70%). But I still live a reasonably normal life.

Hope this helps a little.

Regards,
Bill

Hi Bill,

Thanks for this, I have 2 children, both times while pregnant I was told I had a heart murmur.

Cassie is 13 (v. bad birth, lost a lot of blood and needed a transfusion, but wouldn't have one, ended up with v. strong iron tablets and being kept a close eye on for months as my blood count went way too low. I was v. stubborn because Cassie was discharged and I was told I had to stay in hosptial, I refused to have any of it so they had to compromise with me - stupid thing now when i look back on it). Dominic is 7, quicker and easier birth (more bloody painful though lol), although afterwards I had a terrible infection that made me really ill. I had diabetes in both pregnanacies, which cleared up afterwards.

I also had an accident when I was 17 and lost a hell of a lot of blood, I was unconscious for nearly 2 weeks. I was told afterwards that the docs thought they'd 'lost me' twice on the night of the accident as I was so ill. I was very weak for a long time afterwards. Got ill at the drop of a hat.

Don't know if these are anything to do with it, but it's worth a thought. I'm seeing my GP tomorrow so I'm going to have a long chat with him about things.

thanks again

Jakcie xxx

Jackie,
I am in the USA and following is the procedure for me makes sense:

I was admitted to ER for pulmonary edema. X-ray showed an enlarged heart and EKG was abnormal.

Then an echo visually showed muscle damged due to a silent heart attack sometime in the past!? EF was 29%. MR was severe.

A day later I had an angioplasty and one artery was totally blocked (remains so today), another was 95% blocked and stent was placed at blockage site, and another was about 70% blocked and left without a stent. It has been a year now, and I feel fine. I couple of months ago I was given a stress test, and it was stopped after 5 minutes due to abnormal observations. Results showed ischemia and hypekinesis. In my opinion it provided no useful information not already known. It was expensive as in additon to the expense of the test a doctor had to be present at all times during the test.

Today my heart chambers are in the normal size range. EF at 50% is low normal and the mitral valve regurg is moderate to severe. The doc believes the valve problem may get better with medication. If not and I develop symptoms, the surgery and a bypass will be considered.

Hope this gives you some perspective.

Hi again KenKeith

Yes makes more sense to do it that way. Would ahve beena lot happier if they'd started there with me than angiogram.

Silent Heart attack? Wow, lady I know by me had one, she has to have angio in June, but she must have had echo before hand to know. Can't understand their way of doing things at all over here half the time.

Jackie x

Jackie:

Let us know what you find out at the doctors.

We can't offer much but understanding and sympathy, but sometimes that helps a lot.

Good luck..
Bill

Jackie,

Cardiomyopathy can also improve. Mine was picked up when I flunked a pre-employment physical because of the ekg. With a lot of medicine my left ventricle is getting back to a reasonable size (though still enlarged) and my EF has improved a lot. The main thing, as others have noted, is to find out what is causing your myopathy and start treating it.

Have just phoned the hosptial to find out about the echo and the hospital have lost the request form, so now I have to wait for them to send another one through!

Don;t know how long the waiting list is, but hopefully shouldn't be too long before it's done

thanks for all the avice / info

Jackie

My mother is going though the same thing, I'm living with her to help her out. it's hard cause I just lost my grandma a year ago to heart problems!
argggeee!!!!

(((((down and out))))))

A big hug to you just for being so caring as to move in to help your mom. She must be proud of you for being such a great person. Sorry about your grandma too, must make things so musch harder in the worrying dept.

Take care of yourself as well

love Jackie

xxxxx