Before CHF

I was always an active, healthy person who exercised religiously, worked full-time, traveled, ran around after my kids, and enjoyed life. In late 2000, at age 42, I came down with what I thought was a bad chest cold. My internist thought it was bronchitis, possibly pneumonia, and put me on antibiotics. I had all the typical CHF symptoms described by so many at this site: I couldn't catch my breath when lying down, had gurgling in my throat at night, used the bathroom multiple times at night, and had shortness of breath when exercising.
     Eventually, after several rounds of antibiotics that didn't work, I ended up in the ER completely unable to breathe. The docs thought I had a pulmonary embolism and did a CAT scan, which was negative. After about 6 hours of questions and consultations, the ER attending physician decided to do an echo. Well, big surprise, my heart was terribly enlarged and my EF was 17%.

My CHF

I had the misfortune of being assigned a resident who had zero bedside manner. He had no idea what CHF meant besides what he had read in a medical book that evening. He came into my room and told my husband and me that my heart was failing and I was dying. Needless to say, this was a horrific shock. A caring intern who witnessed this terrible interaction actually did some calling around and came back to apologize and tell us that this wasn't necessarily the case at all; that many people without risk factors did very well, which was a relief to hear.
     That night they drained all the accumulated fluid off me with Lasix, and started me on Coreg and Accupril. After several days I had a cath to confirm what they suspected: that I didn't have coronary artery disease, but probably had suffered from an unknown virus that affected my heart muscle. Viral cardiomyopathy was the official diagnosis.
     It was Thanksgiving weekend and I didn't see a cardiologist until the day after I was admitted but when I did he was incredibly encouraging. Luckily for me, I was in a major Chicago hospital that had a CHF clinic so they really knew their stuff. They told me after several days that it was overwhelmingly likely I'd be fine since I was young and didn't have any other health issues.
     I stayed on my meds, raising my Coreg dose easily to 37.5mg twice a day even though I only weigh 115 lbs. I also exercised every day after a stress test confirmed it was okay to do so. My 3-month echo showed an EF near 50% and I felt totally fine. At 6 months my EF was 57% and has stayed there ever since. My heart function was called normal after that echo, plus a cardiopulmonary stress test. I still exercise every day, work full-time at a wonderful job in the technology field and am enjoying myself again after lots of angst.
     My cardiologist told me this week after my latest echo that I didn't have to come back for 7 years, when I am 50, and to keep taking my meds and "go have a nice life." He said there was nothing to track since I'm clinically stable and have no other issues.
     Something interesting that I've noticed on this site is that when people have gone off their meds, their heart failure returns. My clinic has seen that same trend and they never let people off the meds. It's a life time commitment but a small price to pay to stay well. These meds do have some hormonal benefits that protect the heart from additional disease. I strongly recommend that people ask their doctors about this and if they don't get a satisfactory answer that they get a new doc.

My Meds

Coping

     One thing I don't think the health community deals with enough is the emotional aspect of this diagnosis. My first cardiologist, while technically adept, had trouble understanding what I was dealing with on an emotional level. I had two children under the age of 6 and was terrified that I was going to die. He kept telling me "Oh, you're so type A" or "Take a Xanax." Well, I didn't want to take a Xanax, or be condescened to; I just wanted to understand what was happening to me. As Jon says, these people work for you and if you don't like what you're hearing, then you should find a new doctor. I did that very thing. It was immensely difficult since I'd been with one doctor and his wonderful nursing staff for over a year, but I'm so glad I did.
     Jon's additional advice about finding a cardiologist who specializes in CHF is also very important. You want a CHF specialist who has the most cutting-edge knowledge and you don't want to be passive about it - this is your life! This site is awesome and I wish I'd found it a year or so ago when I was really struggling emotionally. I decided to write because I want others to know that this diagnosis can have a positive outcome. I've read all your bios and know many of you are struggling. I'm thinking of you, praying for you, and wishing you well.

Pamela - May 8, 2002

All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. No one here is a doctor. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. This web site and all its pages copyright © 1997, 1998, 1999, 2000, 2001, 2002 Jon C.