cardiomyopathy

[t.willis]

I am a 34 year old female who was diagnosed with ischemic cardiomyopathy in oct.2006. Since that time I have been hospitalized numerous times. My EF is right now at 40, but is like a roller coaster. Sometimes normal then the next month it is back down to 30. I am currently taking Coreg,cozaar,digoxin and spironolactone, and nitro when needed. My Dr. keeps telling me he doesnt know why my EF goes up and down, but he feels the meds and my recently implanted defib/pacemaker will be a great help.I have had a heart cath. and all is clear. I am a mother of 4 small children and my biggest fear is that I am going to become progressively worse. My question is, since I am doing all I can ( meds and ICD) and still have bouts when I have to be hospitallized, does this mean that I will only go down here from here? I have no energy and doing the small chores around the house become big chores. I have read all I can about this disease, but I still dont know the likely outcome. I ask my Dr. and he tells me every patient is different. To me, that is not an answer. I am desperate to know if this is most likely to be fatal or if I will never have an answer. I know it would be easier to know if I knew the cause however I do not. Could you please try to answer my question. Thanks so much!

[Forum-M.D.-bkj]

willis,

The EF in patients with cardiomyopathy can fluctuate for a variety of reasons including heart rate, blood pressure and other systemic influences. It most likely happens over the course of a normal day. I wouldn't worry too much about it and focus more on your actual symptoms.

My question is, since I am doing all I can ( meds and ICD) and still have bouts when I have to be hospitalized, does this mean that I will only go down here from here?

If you are experiencing recurrent episodes of heart failure requiring hospitalization,you should be seen by a heart failure specialist or heart failure clinic. They can help you with education and medication adjustment to try to minimize your requirements for hospitalization.  

good luck

[maggiemag]

There are a number of us on this board with CM, so we can help!  Has anyone mentioned low sodium diet to you?  They don't always stress it, but it can make a huge difference in how you feel and whether your CHF decompensates or not.  Usually under 1500-2000 mg. is recommended per day.  You have to read ALL labels and count at the beginning, but it does get easier and isn't hard after a while.  I cannot stress this enough.  Also are you limiting your fluid intake?  I used to measure mine out in the beginning, and it has been 5 years for me now.  How often are they doing echos?  Most places will only do one every 6 months to every year.  I think they say that they may vary +/- 5% at any moment.  Many can function well and even work at 30% and 40% isn't bad at all.  That's where I am now.  It can take a couple of years to reach normal and many do.  What dose of Coreg are you on, and your ACE?  Your doctor may tell you to exercise also.  I started VERY VERY slowly and it improves general circ. and feeling of well being too.  Don't believe what you read online about life expectancy, as it has improved a lot in the past 10 years due to      better drugs and ICD's.  You have your own built-in paramedic!  We are also told to focus on how we feel, and not the numbers.  If you had a biventricular pacer implanted, many have found those to make huge improvements in heart function. Good luck.

[t.willis]

Thanks so much for your comments. It did make me feel so much better. I did worry about my EF I guess way too much. To answer your questions I take 20MG of Coreg, 250MCG of Dig and 25MG of Cozaar. I monitor my sodium and fluid intake very closely and I am also on a low fat, low cholesterol diet.Like I said, I am trying to do everything I can to improve my health. To answer your question about Echos, I have had one done every time I am admitted to the hospital, which here lately has been every couple months.As far as exercise goes, the most I can do is to go up and down my stairs at home and that seems to be all that I can do, and that wears me out completely. LIke you said, I guess it will take time. Once again thanks so much for your advice.

[maggiemag]

Yes, it makes sense that they would want to do an echo at each hospitalization.  I did forget to mention that it is also very important to weigh every day after you get up and use the bathroom, and to report a weight gain of 2-3 lbs overnight to your physician.  If you have been closely watching your sodium and fluid then you probably already know about the weights. :-)  As for exercise, walking up and down stairs is still hard for me, but walking in your neighborhood at a comfortable pace would be a great start.  If you have access to a gym, I started with the recumbent stepper, where you just sit and move your legs back and forth.  The treadmill is good also as you can set it very slowly and then just gradually work your way up.

[t.willis]

I am in the heart health care program through my insurance company. I have an electronic scale they sent me and I weigh myself every morning after getting up and using the bathroom and once again every evening at bed time.If the nurses who monitor my weight see a significant difference in weight they call me and they also send a report to my doctor. I guess the majority of my problem is chest pain. There doesnt seem to be a week that goes by that I dont have severe chest pain. It is very scary. I was wondering if you experience this also? Like I stated previously, my dr. did give me Nitro and I do use it when the chest pain does not go away after a while, but I hate using it because it causes me to have a severe headache. But then again, my chest pain does usually go away. The other question I had is my Dr. told me that chest pain can be related to the CM, however other people I have spoken to told me they do not get any type of chest pain. Am I the norm? Or is my chest pain really unheard of? Thanks in advance!

[Bodoni]

A few months ago, I was told I have Dilated Cardiomyopathy. I passed the treadmill stress test quite nicely. I passed a Heart Cath - and was told my arteries look pretty good. I am on a Baby aspirin daily.
I take a ACE Inhibitor- Zestril, and a beta-blocker, Atenolol.

I have no chest pain and have pretty good energy. In fact, my doc wants to start doing some mild exercising.

On my last echo, my EF was about 35-40%. I am to get another echo in about 6 months.

[t.willis]

Wow, that is great you are doing so well....I am very glad to hear that. That is why I was wondering why I do have the chest pain, no energy, etc. I guess it is true what the Dr. tells me that everyone is different. Good luck on your next echo and I hope the best for you!!

[maggiemag]

I have non-ischemic DCM, and have never had chest pain, thank the Lord!  I have heard that it is possible even with clear coronaries.  Maybe you are having coronary spasms?  I think even esophageal spasms can cause chest pain and actually respond to Nitro also, so maybe looking into trying a reflux drug may help?  The fatigue just goes along with the CM, plus you are still early in its course and it takes time to adjust to the drugs, even though your Coreg dose is not that high.  You have to learn to pace yourself although with 3 kids it will be harder for you.  I hope you have supportive family members.  One of my sisters told me today that I try to do too much; that I try to act like a *normal* person.  I said, well, yeah, that's my goal!  LOL! I am not gonna just sit here and veg, although I will admit that I spent much of the first year on the couch, but my EF was 15% at onset.  It sounds like you are being followed carefully and have all the bases covered.  I have never heard of an insurance company sending people scales!  Has your cardiologist considered putting you on a vasodilator too for the chest pain?  They may be totally contraindicated in your case, but maybe a small dose would be ok.  I just don't know......sorry!

[Carolina03]

Hi,

I take a diuretic, ACE, baby aspirin, fish oil and ACE for my ischemic DCM. I also have three children and am fairly young (40).

I cannot emphacize how important it is to WALK daily. Every heart patient should buy a dog and walk. You need to feed blood and nutrients to your weakened heart. I've correlated my symptoms with a lack of exercise. I also get chest pain that worsens around my period. My GYN thinks its related to the extra fluid retention at that time of the month.

It's a huge hurdle to get over the initial diagnosis, especially when you have young children. Give yourself a break. I mourned my shorten life for two years. Today my husband and I joke about it. I also have a close friend who keeps my mind off my heart.

The more you focus on your condition, the greater the chances you have to become truly depressed. Try to focus on your family, nature, exercise, anything that focuses your emotions and energy elsewhere. You WILL live a long life but you have to make critical changes in how you move, what you eat and how you think. It seems unfair but as the Irish say, it's the way of it.

Carolina

[eddie33081]

Hello Everyone.

My father has been diagnosed with cardiomyopathy. He is 63 years old and was told his EF is at 20%. I am very worried about him as he is also over weight (5'9 250lbs). He informed me that the doctor gave him a rough estimate of about 5 year or less life expectancy.

He is taking the following medicines:
Carvedilol 25mg
Simvastatin 80mg
Furosemide 40mg
Apsirin 81mg

He isnt very computer savvy and I have decided to do any research I can do to help.  

He has another doctors visit scheduled for next week for "chf". I am going to go with him so that I can ask the proper questions and get any additional information that I can.

Can you give me some suggestions on what to ask? I have read that there are several types of cardiomyopathys as well.  Should I find another doctor for a second opinion? Let me know if you have any other tips I can ask.

Thank you for your help.

Eddie

[fbrowo]

I was diagnosed with restrictive cardiomyopathy nearly 5 years ago, my symptoms have slowly progressd. I still work but can not find anyone with the same diagnosis. I would love to be able to chat with someone with the same diagnosis, so I can compare symptoms or share what we are both experincing. Please contact me.

Thank You
Fred

[toyota1964]

I was diagnosed with DCM in April 2007 and am taking Coreg CR 40 mg, Atacand 16 mg, and hydrochlorothiazide 25 mg for it (along with other meds for diabetes, cholesterol, and reflux).  I was feeling exhausted this entire time and couldn't do simple household chores.  I also wasn't sleeping well at all during the night.  Last month, I saw the internist at my cardiologist's office and she suggested I move the Coreg to bedtime.  It has made a world of difference to my energy level.  What time of day are you taking your Coreg?

[Jillejam]

Don't you take coreg twice a day, most people I have come across take smaller doses twice a day instead of one big one.  

[belizabe]

.I was dignosed with IHSS.  I have never had high bp.  I carried 6 children to full term with no problems.  I have done some reading and found a treatment called alcohol abulation. Is this done in your clinic?
The only think bothering me now that I am 63 is that I need to exercise, but am frighted to, as I sometimes get light headed and do not want to faint while alone.  I also have asthma and am sometimes short of breath but do not know which disease to put the blame on or both.

[sugarcane]

Hi, Cleveland Clinic does do alcohol ablations. They also do septal myectomies, which is still considered to be the best option for septal reduction in most cases. IHSS is the old name for hypertrophic cardiomyopathy. If you are fainting and you have HCM, you may be having arrhythmias which can be fatal. In my opinion, you need to be evaluated by someone who is very familiar with HCM. Not all cardiologists are. Good luck.

[belizabe]

I am in Huntsville, Alabama do you know of anyone familiar with HCM close to me?

[tstubbs457]

i presume that if you have been diagnosed as having ischemic cardiomyopthy, that you have had a cardiac cath.  was a myocardial biopsy done ? if so, what did it show.  what is the state of your coronaries?  have you had an infarct ? do you take a multi-vitamin routinely? was the onset of chf/ symptoms related to cardiomyopathy temporally related to pregnancy ? do you have any valvular abnormalities ?

[toyota1964]

The Coreg CR is the extended release version that you take once a day.  Taking it at bedtime has made an immense difference for me.  I've never taken the regular Coreg so I don't know about it.  

[Michaelccc]

this may not matter that much but i'm sure every little thing helps. did you make lifestyle changes? you don't smoke do you? eat healthy food? lots of veggies especially green ones. lots of water intake but not too much . about 8-10  six  ounce glasses a day. celery juice. some studies show half a cup once every two days cleans up blood reduces blood pressure and may even reduce cardiac issues. this obviously is not to substitute medicines that are prescribed by the doc but may be used in conjunction with docs advice or approval.    FLAX seed oil is supposed to be amazing for arteries and heart. teaspoon once a day. maybe look into gettting a relaxation tape as being relaxed at night before bed can do wonders for stress and stress reduction in turn will do wonders for the heart. cut out all sodas and artificial sweets and candy and such that will wreack havoc on the whole body. i hope this helps in someway. i hope you feel better real soon

[Ram747]

A related discussion, septal wall thickness of 2.8cm was started.

[poopie1]

A related discussion, pregnancy with cardiomyopthy was started.