Dilated Cardiomyopathy and Reduced Ejection Fraction

By CommunityMember1652

1 min read

Hello all,

So I will start by telling you how I came to find out about my heart condition. I am a recovering addict, and my drugs of choice were heroin and cocaine. In 2016, I was hospitalized for an abnormal heart rhythm, and a couple of weeks later I went to see my cardiologist. He told me I had a heart disease called dilated cardiomyopathy and congestive heart failure.

At the time I blew it off and didn't start taking the meds. Then in 2021, I had an echocardiogram done, and my ejection fraction was at 42%. That is a little low but not a big concern. Then in September 2022, I repeated the echocardiogram. My EF was 25%, and the walls of my heart were pumping very poorly. My doctor put me on lisinopril and metropolol, and now my EF is at 20%.

My biggest question is, is there anyone out there who has a story like mine? What happened to you? What's going to happen to me? My cardiologist is horrible at answering questions or helping me, so any answers would be very appreciated!

Thank you.

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Olivia Rose Moderator & Contributor
<inline-mention username="CommunityMember1652" user-id="6125547"/> Thank you so much for being so vulnerable in sharing your story. I'm sorry about your diagnosis and that your cardiologist isn't really answering your questions. That can be very frustrating, but you've found the right place for support. I was diagnosed with dilated cardiomyopathy in 2014 after suffering a stroke. My EF was 10-15% and it went up to 20-25% with the medications my cardiologist prescribed. In 2018, I suffered another stroke and found out that I was in advanced heart failure. I had to get an LVAD (left ventricular assist device) and I was later put on the heart transplant list. Everything is based on a case-by-case basis so what happened for me may not happen to everyone. I would say talk to your cardiologist and if they aren't working with you the way you like, think about maybe finding a cardiologist who will answer all your questions. I hope this helps!
jgoodma1 Member
CommunityMember1652, In 2016 at age 62, I had a massive heart attack with 100% blockage of my LAD (the Windowmaker) while traveling on business. Because of unlucky circumstances, it was over 20 hours after the onset before I received 1 stent that saved my life. I was in the ICU for 5 days, with my severely damaged heart, resulting in an EF of 20% & heart failure. I almost died & was terrified. I was at this place with heart disease and heart failure because I was stressed, obese, sedentary, had sleep apnea and did not use my CPAP machine, and ate too much salt. I wasn’t paying attention. Home from the ICU, I completely changed my diet & lifestyle. Home from the ICU, I completely changed my diet & lifestyle. I thought I was eating healthily before; lots of salads, fish & poultry. Too much of it was processed & I ate out too much. I added up my daily sodium intake from the canned salmon on my salads, bottled salad dressing, whole wheat bread, & pre-cooked turnkey breasts from Costco. No beef, no hotdogs, no burgers; Chick-Fil-A salads for fast food. Shocked to find that my daily sodium intake was around 6000 mg/day, I immediately cut out all processed food. Home from the ICU, I completely changed my diet & lifestyle. Over the next 6 months I lost 55 lbs., went through cardiac rehab, & now go to a cardiac maintenance exercise program 3X per week. With heart failure, fluid retention and edema are the enemies & weight gain is the canary in the coal mine for worsening heart failure from fluid retention. I keep my sodium intake in the 1000-1500mg range per day and I follow the Ornish diet, which is very low-fat, largely vegan, and with a little dairy allowed. 6 years later, I still follow it. The DASH diet and the Mediterranean Diet are also heart-healthy diets, but I have to be particularly focused on what I eat and I choose to adhere to the stricter Ornish Diet because of my cardiovascular disease and history of having a heart attack. So, it’s been almost 6 years since my heart attack. I have been largely asymptomatic with my heart failure, though I had a mild case of Covid 6 weeks ago (I am double vaxxed and double boosted) and I am having some long-Covid problems that may have affected my heart, so I’m in the middle of some testing about those new symptoms. My EF is only 30% and will not recover beyond that because of the structural damage to my heart from the heart attack. Because my EF is below 35%, I am much more susceptible to going into cardiac arrest, so I have an implanted defibrillator as a protective measure. It has never zapped me, but I am glad I have it in case I need to be zapped. Everyone is different. There are people with significantly better EFs than mine who have significant heart failure symptoms they deal with daily. And then there are people, like me with lower EFs who function pretty well. My main limitation has been with strenuous aerobic activity. I do fine with moderate activity, but I run out of gas quickly with vigorous activity. Up until my Covid issues, I could do physical work on my property all day long with no problem. I believe that in my case, a big reason that I have been largely asymptomatic with my heart failure is that I do what I am supposed to do as a patient. I take my meds religiously. I exercise. I eat properly. I get plenty of sleep. I now use my CPAP machine EVERY night. I keep my weight down. I take if very seriously. Additionally, I have tried to educate myself as much as possible about my condition. I’m not talking about Facebook or other patient forums, though I have gotten some occasional good nuggets of information from them. I am talking about authoritative sources: Harvard, Mayo, NIH, PubMed, American College of Cardiology, AHA, JAMA Cardiology, Medscape, Cleveland Clinic, and Journal of Cardiac Failure. I get weekly and monthly cardiovascular disease and heart failure-related feeds from some of these sources in my email. I even get medical continuing education lectures and presentations that are intended for physicians and medical professionals. When I listen to these lectures, there is plenty I don’t understand about the biochemistry, but I stop the lectures and look up the meanings of terminology, acronyms and abbreviations that I don’t know or don’t understand, and I gradually become more knowledgeable about the details of heart disease and heart failure. I can ask informed questions of my cardiology team and gain a better understanding of my condition. These references also keep me quite up to date on the latest developments with heart failure drugs. With heart failure and dilated cardiomyopathy, your body secretes different enzymes and hormones that will try to make your heart beat harder to compensate for its diminished pumping capabilities, and that can be bad for your heart. CommunityMember1652, you mentioned that you are on lisinopril and metoprolol. Lisinopril is an ACE inhibitor and metoprolol is a Beta-blocker. Angiotensin-converting-enzyme inhibitors (ACE inhibitors) work by causing the relaxation of blood vessels as well as a decrease in blood volume, which leads to lower blood pressure and decreased oxygen demand from the heart. Beta-blockers slow your heart down. My heart failure cardiologist explained that one important function of the Beta-blocker is to slow the beating of my heart to permit my stiffer, damaged left ventricle more time to fill with blood before it’s pumped out to my body. The “blocker” and “inhibitor” labels refer to the fact that these drugs interrupt the function of hormones that would try to make the damaged heart beat harder. There are some great new drugs for heart failure. From what you have said, you have heart failure with reduced ejection fraction (HFrEF) and 2 types of drugs that have been shown in a recent large study to be particularly effective for HFrEF patients are ARNI’s (angiotensin receptor/neprilysin inhibitors) and SGLT2 (Sodium-glucose Cotransporter-2) inhibitors. You may have seen TV advertisements for them: Entresto (ARNI) and Jardiance and Farxiga (SGLT2 Inhibitors). Entresto replaces Lisinopril. In medical lectures I have listened to and from what my heart failure cardiologist has told me, the current evidence now suggests that patients with HFrEF should be treated early with a combination of 4 drugs: an ARNI, Beta-blocker, MRA (Aldosterone receptor antagonist – Spironolactone or Eplerenone), and an SGLT2 inhibitor. You did not mention that you are on 3 of these 4 types of drugs. Beta-blockers are cheap and MRA’s are cheap. Entresto and both Jardiance and Farxiga are not cheap, but their manufacturers do have financial assistance programs if you cannot afford them. They can work wonders and you need to ask your cardiologist about these drugs! One other important routine you should do daily is to take 4 readings and write them down in a daily log: Weigh yourself, take your blood pressure, and take your oxygen saturation level and heart rate. Wear the same clothes or lack of clothes when you weigh yourself each day. First thing in the morning, when you get up is a good time to do it. You can buy an inexpensive fingertip oximeter and a blood pressure cuff at CVS or Walgreens. Weighing yourself is very important. It is the first line of defense against fluid retention, which can be a serious problem for heart failure patients. If you begin retaining fluid, your cardiologist may prescribe a diuretic for you to take to shed fluid. I take a diuretic every day. If I gain 3 pounds or more in one day, or 5 pounds in one week, I am supposed to call my heart failure team and they instruct me on taking additional diuretic pills to bleed off that excess fluid. The last piece of advice I want to give you concerns what you said about your cardiologist being bad about answering your questions. You MUST be your own advocate! If you are not getting what you need from your cardiologist, tell him/her and if they still do not give you what you need in that regard, look for a new cardiologist. I actually have 3 cardiologists, and my cardiology team is fantastic. I have an interventional cardiologist who deals with my cardiovascular disease and heart attack-related issues. He is my “plumber”. I have an electrophysiologist, who is the cardiologist who deals with my heart’s electrical issues and my defibrillator, and I have a heart failure cardiologist with a full heart failure clinic team behind him. My heart disease is pretty well controlled, and my heart failure is the biggest issue I deal with and so my heart failure team is now my first point of contact. Heart failure clinics are experts in designing treatment programs unique to each patient. They are particularly adept at dialing in the right combination of drugs to maximize their effectiveness on each patient. Heart failure clinics are not always available in smaller towns and cities. They are often associated with a hospital with a cardiology department. But I cannot emphasize enough how important my heart failure clinic has been to the stability of my heart failure and my quality of life. If your cardiologist is not a heart failure specialist, ask your cardiologist to refer you to a heart failure specialist and/or heart failure clinic, if at all possible. Feel free to private message me if you have questions. I know this is very scary and overwhelming when you first start confronting heart failure. I’ll be happy to help in any way I can. I, of course, am not a doctor and I knew nothing about any of this stuff when I had my heart attack. Understanding my condition and staying on top of the latest developments has been empowering for me and helped my emotional health in dealing with it. What I’ve told you here has been my experience and what has worked for me. 
1. JessicaL Community Admin
 Hi <inline-mention username="jgoodma1" user-id="3932542"/>! This is quite the story! I was wondering if you would consider submitting your own story, which would be published on the site similar to the one you commented on (you can copy and paste exactly what you commented above). Feel free to submit your story here: <a href='https://heart-failure.net/stories' target='_blank'>heart-failure.net/stories</a> -Jessica, Team Member
2. Montana Kathy Member
 <inline-mention username="jgoodma1" user-id="3932542"/> what diuretic do you take every day?
jgoodma1 Member
<inline-mention username="Montana Kathy" user-id="6710794"/>, I am on Torsemide. I was on Furosemide (Lasix) for 3 years but it began losing its effectiveness for me. Torsemide has worked well. It has longer "bioavailability" than Furosemide, meaning it acts on your body for more hours... about twice as long. I am on 20 mg of Torsemide.
Kimberly Connell Moderator & Contributor
<inline-mention username="CommunityMember1652" user-id="6125547"/> Hello are you? Thank you for sharing your story. I started off with hypertrophic cardiomyopathy that advance to congestive heart failure. I also took lisinopril and metropolol, and my EF was at 20%. My biggest struggle was build up fluid And trouble breathing. I stayed there 4 years before receiving a heart Transplant. Kimberly (Heart-failure.net Team)