EF

[Jackie5910]

About six weeks ago a biventricular pacemaker and ICD was implanted in me.  I had been diagnosed with a nonischemic dilated cardiomyopathy.  The EF at the time of diagnosis was 30% which was down from 50-55% about six months prior to that diagnosis.  My follow-up echo showed that the EF had increased to about 40%.  I have also been taking all the appropriate heart failure medications.  I definitely feel better and am able to tolerate more activity.  My question is will the EF continue to increase with time?  Could it decrease over time despite my efforts with exercise, drugs and diet. I am young and have been very bummed out about the activity intolerance.  

With the recent news about amiodarone, I have concerns about continuing to take that drug.  I understand that giving amiodarone for atrial fibrillation is really odd label though it has been very effective for with many side effects.  In reading some of the research that has been done related to the ICD trials versus amio, I have learned that amio is not as effective in preventing VT/VF  and death as the ICD is. If that is the case, I am wondering what other drug may be used to prevent the atrial fib.  I do have corneal deposits.

[CCF-M.D.-MJM]

Hi Jackie,

Sorry to hear about your health problems.  The guidelines for inserting ICDs suggest waiting 9 months after the onset of the disease because many people do improve, as it sounds like you have.  It is impossible to predict if the improvement will continue, but hopefully it will.

Regarding amiodarone, it depends on why you are taking it.  If you are taking it to prevent VT/VF, it depends on how often you are having VT/VF.  If it is very infrequent, it is probably safe to stop the amiodarone.  Sotalol is another mediation frequently used to prevent AF/VT/VF. If medications are not work, a AF ablation is another option.

I hope this helps.

[Carolina03]

Jackie,

I simply what to say that your heart -- the metaphorical and physical one -- is in God's hands. I know a few people with your condition who had low EF's then improved through proactive steps like you're taking.

I hope you have a good team of doctors looking after you. Be assertive in your care, don't be afraid to push for answers. Do you know what caused the DCM? I assume you do.

I have a failing thyroid which causes mild symptoms of fatigue, chest discomfort, palpitations and SOB. The illness started during my third pregnancy at age 36. Until then, I ran a few days a week and never once thought about my heart. I swear. Today my EF is 50%, not bad, not normal but enough of a change from last year that I wonder. Hopefully thyroid medication will turn things around.

If I may give you some advice: never, never give up and choose to look at life as if you're invincible. Be sensible but take risks. Speak up when you see an injustice. Find courage, and joy in the beauty of living. If you can't run, walk. If you tire easily, live through books and films. Having a chronic illness is liberating in a way. It makes you appreciate life so much more.  

All the best,
Carolina

[hankstar]

Hope fully a new promising device called the "heart stocking " will soon available to those suffering from DCM. It has the potential to reverse DCM, save lives, and drop some from the heart transplant list.

[Jackie5910]

Unfortunately, they do not have a clear idea of what caused my DCM.  I don't think it is genetic but maybe it is.  Some thought it might be a virus but there has been no biopsy to determine for sure.  Another physician thought it might be related to rapid heart rates which I did have over a period of two years.  I have also been somewhat hypothyroid though the endocrinologist did not think it was low enough to have had any effect on my heart.  In the end, it is probably a variety of factors that have caused it.  It occurred suddenly (out of the blue) so everyone is speculating.

Does anyone know about DCM that is genetic?  When does it appear?  What is it's progress?  How is it inherited?  I am totally unfamiliar with this.

[mmfd]

I have familial dilated non-ishemic cardiomyopathy!  When they can't find another cause after ruling everything out, they just say it is idiopathic DCM.  Sometimes they tell you it is viral instead of idiopathic, but rarely biopsy as the treatment is the same.  The latest thinking is that most of those labeled *viral* are really familial.  When my twin sister was diagnosed with the same thing, ours is now labeled familial type.  Hers was caught before she had any symptoms except zillions of PVC's.  It is recommended that parents, siblings and children all get screened for FDCM with echos and EKG's.  My sister had a positive echo, but 3 other sisters are normal.  There is a study going on now for FDCM, requiring only some bloodwork and the echo reports.  The website is www.fdc.to  BTW, my EF at diagnosis was 15% by cath and it is now 45% by echo!

[dafan]

I was wondering... did she have an echo that confirmed a low ef and lv enlargement that coincided with the pvc's? Or did the pvc's start occuring before the ef got low? I have pvc's for some reason and im trying to find out why. My echo and ekg and everything came out "normal" but i have probably 1000 pvc's a day that just came out of the blue. thank you so much.

[mmfd]

My sister had the echo  stating that her left ventricle was dilated (6.0), plus a decreased EF of 45%, (which is still very good and may stay there now that she is being treated for the DCM.)  She has had PVC's for years, but they were benign.  Now they aren't b/c as the heart enlarges with the CM, the electrical system goes out of whack, and the arrhythmias increase.  Her PVC's in the past DID NOT cause her DCM!  I want to make that clear to all the PVC sufferers on this board.  NOW they are a problem as her last Holter showed 20,000/24 hours!  No that is not a typo!  Having just a 1000/24 hours is not significant, truthfully.   I had only 1000/24 hours on my last Holter and my doctor and I were thrilled to have so few!  As the doctors on this site have said over and over, if your workup with EKG's and echoes and Holters say you don't have a heart problem, then you don't!!!  Without cardiac structural abnormalities, PVC's are almost always benign.

[Jackie5910]

I am interested in knowing more about the familial cause for DCM. At what age does it usually present?  I do recall that an Aunt of mine had severe CHF but my parents did not.  My Dad died of an MI and my Mother died of alzheimers. I realize the treatment is the same but I have children and am obviously concerned for them.  I have also had PVCs my entire life and have always considered them benign.  But in the past two years I have had almost every heart problem anyone could have.  Suffice it to say, I did end up with nonsustained VT and easily induced VT and VF which is secondary to the disease (whatever the cause).  I am still learning about heart failure and all its ramifications. In fact, I have reviewed much of the research related to resynchonization, ICDs, and drug therapy.  Though I don't always understand all of it, I find it very reassuring to know what the current knowledge and practice is for us.

[Jackie5910]

I did read about the heart wrap to they are trialing and expect to be approved next year sometime.  I am also aware of the cardiomyoplasty procedures that they tried in the 80's and 90's.  Those were found to be unsuccessful for the most part so I am not too hopeful that this new procedure will hold a lot of promise.  I am really convinced that daily exercise, drug compliance, weight control and regular visits to my excellent cardiologist will keep me going for a long while...at least I am hopeful that is the case.

[hankstar]

I understand this so called"heart stocking" is showing some very positive and promising results. In the maintime if something is working for you, stick with it, all the things you mentioned have a positive impact on DCM.

Good luck and Happy Holidays.

[mmfd]

Sorry, but I don't know when FDCM usually presents.  It probably varies greatly.  I was told that I had probably had it for a long time and was just well compensated.  It is a good thing that you are researching the disease.  Knowledge is power!  I do recommend chfpatients.com and also heartcenteronline.com  as excellent resources.

[Jackie5910]

I love the chf patients.com website.  It is incredibly valuable.  I already read the exercise part.  I do exercise everyday and have done so since by biventricular/ICD implant in Nov.  What I haven't been doing is taking a day off now and then which i can see in very valuable for recovery.  Thanks so very much for the information.  I have used the other website often.

[Giorg]

Hi,

I live in Italy, I am 30 years old and 3 years ago I was diagnosed with Familial Idiopathic Dilated Cardiomyopathy. I was the fifth in my family diagnosed with that disease, but the youngest so far. My mother and my uncle (diagnosed about 14 years ago) had a heart transplant 4 years after diagnosis, a cousin of my mother died in the eighties, another cousin is now in transplant waiting list.

In my family the genetic defect that leads to DCM was found by analysis and match of DNA of me, my mother and my cousin: it is in the Laminin A/C gene. So far there are about 10 genes that were discovered to be involved in DCM, Laminin is one of those.

At the diagnosis my EF was 17%, then with standard therapy with ACE and betablockers and exercise I improved a lot going up to 45%. But now I am a 30% and in the last weeks I am diuretic-dependent since I am not well compensated. My left ventricle it is just mild dilated (as usually happens in patient with that gene defect). I am now in class NYHA II after being in NYHA I for more than 2 years. I hope to improve again and go back to class NYHA I. It could happen with DCM that is some periods you go up, some you go down. I have PVCs and V-tach but, luckily, an ICD.

The gene defect usually in DCM is autosomal dominant, meaning 50% of chanches to pass it to sons. But if one has the defect, not necessarly develops the disease: mechanism through wich one gets the disease is not clear yet. Statistics say if in a family there is the defect, a member has 20% of chances to develop the disease. In my case, with that gene defect, usually the disease every generation comes before: my mother was diagnosed at 40 years old, me at 26.

You can ask for a genetic screening, hopefully they could find the gene, so you can check your sons: if they do not have it, you can stay serene - if they do have it, you have to check them with echo at least every two years. Prognosis is much better if DCM is diagnosed at the beginning.

Hope you stay well