Longevity of Dilated Cardiomyopathy Diagnosis

[BoulderJD]

I just found this site this morning and have been reading through the posts on dilated cardiomyopathy.  I was diagnosed last summer with an EF of 25% and severe blockage in one artery.  After inserting a medicated stint, and taking the max dosage of coreg (50 mg daily), tricor, altace, plavix, zetia and lipitor for nearly a year, my EF is 45%.  Aside from feeling tired, and not having the energy for skiing and hiking, I feel pretty good for a man of 54.   After visiting my cardiologist this week for a regular checkup, I asked him for a prognosis.  He said, "Well, considering we estimate you've had cardiomyopathy for four years, and considering the life expectancy is five years, I would say you've got a good solid one year left, but who knows".  That sounded awfully pessimistic to me.  Most of the posts I’ve read here don’t mention the possibility of sudden death within five years of diagnosis.  Just wondering what you all think.

[Forum-M.D.-MJM]

Hello,
There are many way to risk stratify someones risk of dying from heart failure.  Applying a blanket rule that the life expectancy is 5 years is not a safe assumption.  It has more to due with the type of heart failure (systolic, diastolic, or both), the degree of symptoms and progression of symptoms, response to medications, etc.

The fact that your heart function has improved with what sounds like a good heart failure regimen is an encouraging sign.

There are strong studies that show that people with reduced heart function (less than 36%) with New York Heart Association class 2-3 symptoms, a defibrillator would reduce the risk of cardiac arrest.  There is no data for an defibrillator placement in someone without ventricular tachycardia or previous cardiac arrest if your ejection fraction has improved to 45%.

I hope this answers your questions.  Thanks for posting.

[Dan1981]

I consider the comments of the Cardio were pretty strange.  Do you have a familial history of dilated cardiomyopathy or did you have other risk factors?

[BoulderJD]

My mother was diagnosed with viral cardiomyopathy at her late 50s, died at age 65 in 1996.  as for other risk factors...I'm a bit overweight at 6'1" 240, and my a1C of 6.6. I'm controlling borderline diabetes with diet by cutting (and closely monitoring) carbs.  

As for the cardiologist, I've replayed our session over and over in my mind.  He has had my chart confused with another patient twice before.  I know he has lots of patients, and while a skilled surgeon, he doesn't have the best bedside manners.  

[Celeste07]

I'm so sorry to hear about such an uncompassionate Doctor. Personally, I would have had two words for him, "Your Fired".

With the correction of your blockage and your rise in EF%, I would have expected a better prognosis from your Cardio. HF just isn't that clear cut from what I understand, especially if the underlying cause can be successfully controlled or corrected.

I was wondering if your cardio has ever suggested possible CRT therapy now or in the future? I'm not sure what the EF %  has to be to qualify in each individual case, but my aunt has been feeling great and getting better and better since it's implant.

"Results from COMPANION confirm that patients receiving either kind of (CRT-P or CRT-D) device had more than a 20% reduction in the composite endpoint of the study (i.e., total hospitalizations and death from any cause.) Furthermore, patients who received the CRT-plus-defibrillator showed a 36% reduction in mortality alone."
"Some studies have shown that CRT pacemakers can slow or stop the process. Over time, CRT pacemakers can even help the heart get smaller again. They can reverse some of the damage caused by heart failure."

Best wishes.

[Carey01]

I was offended and horrified by reading those comments as well.  I dont know about your health, but what I do know is that the only person who knows when our job here will be done is the Lord.  To tell someone they have a good year is just absurd.  Every day Dr's abilities to remedy heart problems are being discovered to improve not only longevity but quality of life.   That Dr's statements were inappropriate to say the least.  I hope you can disregard them.

[anacyde]

Sorry but I'd be finding a new doctor.  With an EF of 45%, that's a mere 5% from normal.  Your cardiac function is improving, not worsening.  I can't see why a doctor would be telling you that you've got a year left.  My understanding is that the 5 year life expectancy rule applies to people who are NOT IMPROVING or worsening, not those improving.

Seriously, this doctor is confusing your chart and saying things like this...I have no respect for that.  I'd be SO firing that doctor.

[lak]

Hi Everyone!

Just thought I would fill everyone in on what has been going in the the last 8 months.

I started feeling bad and went to see my cardiologist.  He told me that I had a 35% EF and that he thought I had a viral infection.  He said we would not do anything and just keep an eye on it.

Since I have high blood pressure and a very large amount of PVC'S I thought this is it and made an appointment at Cleveland Clinic.  I was there for 2 days and my EF was still 35%.  They wanted to do a heart cath and so that was what we did the following day.  

I was told that I need a pace maker defibulator and we scheduled that surgery for a couple of weeks.

I was home about a week and just a few days before I was scheduled for surgical implant.  They called and said that according to the cath my ejection fraction had came back up to 55% and they did not think it was necessary now.

It was just a viral infection. My family and I were shocked at the confusion but thrilled with the results.

We have a new cardio here in Portsmouth Ohio so I thought why go back there for check up if everything is ok.  I made an appointment with her and she did echo and her own work up and got all records from Cleveland Clinic.

My ejection fraction is holding at 42% and diagnosis is just cardiomyopathy and many pvcs. All I am on is Coreg for my heart 6.25 twice daily, 40 lasix twice daily and hyzaar 50 12.5 blood pressure.  

Does anyone know if this would be considered Heart Failure because I saw that on a report that I got...cronic heart failure but she has not came out and told me that.

She said everything was fine and I long as I took my meds we were good.  She even told me I could go back to my regular physician and call her if I felt like any changes?  But, I told her I would be more comfortable seeing her too every three months.

I really would appreciate anyones comments you can look up previous posts.

I am female, 48 years old and have 2 children 2 step-children and 9 grandchildren a full time job as a administrative assistant for a financial advisor and a part time realtor.  Yeah I am tired and have pain but hey I have no intentions of just being around five years.  

Lisa                              ***@****

[tickertock]

LAK,More POWER to you that's the way to look at life!! As for the original poster who asked the questions, I must say with a doc like that I'd walk straight out of his office , you've improved significantly and will probably live a normal lifespan with vigorous treatment of medication and life style adaptions. Sound as you had ischemic induced cardiomyopathy which has been improved with stent and medication, just do the right things and you can look forward to many mnay more years in my personal opinion. I have a friend who had bypass surgery about 6-7 years ago who was recently hospitalized just before December and given just days to live with an Ef of 10-15% and a pacemaker/ICD , his legs were spilt open from swelling and he called all his friends & lawyer at his bedside to witness and make his will. I for one did not give up on him and take a guess, today he is driving his car and doing remarkedly and amazingly well, nothing short of miraculous!! Never give up no matter what, It's amazing what will power and a positive attitude can do , im nmy personal opinion such a negative comment from a doctor is not justified.

[anacyde]

You're on good medications for cardiomyopathy.

Cardiomyopathy is a type of heart failure, so to speak.  It doesn't mean your heart has quit, it just means it isn't as efficient.  CHF or Congestive Heart Failure refers to volume overload, like fluid in the lungs.

[southbell]

Has anyone ever heard of cardiomyopathy due to pregnancy?It has been 20 years. My daughter was fine.I had terrible complications,I was in ICU for two weeks.I took heart meds for a few months.After that they said Thew would watch me closely.I have been every year for 20 years.They assure me tha this should not happen again unless I become pregnant.I had a tubal done in 1992. Other than that I can't get any more answers.If you have any comments,please help.This has caused terrible problems through the years.

[southbell]

I have really been confused for the pasat 20 years.Whan I was 21,I had what they diagnosed as peripartal cardiomyopathy due to pregnancy.The doctor followed it closely.I almost died.Was in ICU 2 weeks.I had a tubal,so no more kids.Later on he told me he really did'nt know what happened.It did'nt follow the normal pattern.I'm grateful,but confused.I had no more children because of this.I don't take heart meds.I do have premature beats,which drive me crazy sometimes.They have said they are benign.But very scary.What happened to me was very traumatic.The cardiologist says that everything went wrong that could have during and after pregnancy.I am still being checked this long after.Have you ever heard of this?

[DottyCece]

I have dilated cardiomyopathy.  I was diagnosed two years ago after two heart surgeries and multiple problems.  My EF was 30%  I went on the heart failure drugs, had a biventricular pacemaker implanted with an ICD.  My EF today is around 50%.  I am functionally much improved.  Recently I did have two episodes of Ventricular Tachycardia/Fibrillation.  I was rescued with my ICD shocks and am here to talk about it.  I am now on Tikosyn to try to prevent future episodes.  Because my function was so improved, I never in my wildest dreams thought that I would need my ICD.  My EP told me that there was no corrolation between increased function and risk of VT/VF.  I have come to realize, I will always struggle with things and I won't be the same as I was before all this started.  All I can is work closely by my medical team and pray for the best.

[GG0508]

I was dx'd 5yrs ago with viral dilated cardiomyopathy EF 20%.  I have been on a regiment of Rx (Lovastatin 20mg, Furosemide 60mg,Toprol XL 50mg, Citalopram 20mg, Warfarin 5mg, Tricor 145mg, Spironolacton 25mg, Avapro 150mg, Prilosec and Ambien.  My EF has improved to about 40%, but I still am exhaused if I try to get my heart rate up with any kind of exercise.  I have not worked since I was dx'd in 2002.  While pleased that I have improved, I cannot believe that I don't feel better.  I am a 60 yr old female, single and live basically a stress-free life now.  Will I need to continue taking all these meds for the rest of my life?  Why don't I feel better? Thanks.

[harristiffan]

What is happening?  My husband (41 years old) was a perfectly health man until a little over a month ago.  He got a sinus infection?  Maybe turned into bronchitis due to not liking doctors?  Now, pneumonia with a Dr. visit.  Wrong agian.  Liver disease (1 week with a hepatologist).  Coughing up blood - emergency room.  Pulse of 240 and admitted (of course).  Then the echo, cardiomyopathy with a 5-10% EF.  Now considered viral (considered because a heart cath was too risky with the blood clots and Ef).  He is now home after two weeks with a defibrilator vest (room for improvement).  Meds were working great initially, one week later, water retention, breathing problems, pulse different every 5 minutes.  Pulse ranges between 95 and 160.  Blood pressure ranges from 90's over 60's to low 60's over high 40's.  We're  scared.  We have three little boys 11, 9, and 5.  Married 20 years next wednesday.  Does anybody have any similar experience with this?  They believe that it may be the Barr-Epstein virus, but, they're still trying to prove that the connection is possible.  As I said, the heart cath was not possible, so no definites.  I just know that there is so much I don't know (though I've learned so much about the heart and liver in the past month that I feel like I could pass my barr exam).  I've read alot about others with cardiomyopathy, but a 5-10% EF hasn't come up.  Is there anybody out there who has come through this?  

[Delana]

I have just turned 32 wand told my EF is 10-15%. They belive mine was caused by the brochitis I had 3 months ago.

[marccc]

A related discussion, pregnant with viral cardiomyopathy was started.