HeartSense: A blog about heart failure

My Journey With Heart Failure

I got to know something about heart failure the hard way, by having it. I also happen to be a health journalist. So when I got the stunning diagnosis in 2003, I began researching this condition that sounded so fatal. Not only was my diagnosis overwhelming, but my first encounters with the health care system were dismal. It took me three and a half months to find good care. My story is worth sharing because it illustrates how important it can be for a patient to become knowledgeable about an illness and get involved in her own treatment plan.

Heart failure is a condition in which the heart can no longer perform well enough to get adequate blood and oxygen to the body. With 6 million people living with heart failure in the United States alone, it is already a huge medical problem and will get bigger as baby boomers continue to hit their fifties and sixties. Heart failure is a serious condition that can be fatal, but I would learn that it often can be managed with the right treatments. My own research about heart failure changed my life.

In December, 2002, I found myself getting fatigued and easily out of breath, with swollen ankles and abdomen. My asthma was normally under control, but I turned to my asthma specialist because of the shortness of breath. He noticed my swollen ankles and said he didn't think my problem was asthma. I had begun to think the same thing. He told me to see my internist right away who referred me to a cardiologist who gave me a diagnosis in words that roll off the tongue of a heart specialist but shock the patient who hears them: "idiopathic dilated cardiomyopathy and biventricular congestive heart failure." It was those last two words that got my attention.

I tried to get over my shock and digest the big words of the diagnosis, searching the internet to make some sense of what had happened to me. Cardiomyopathy, I learned, is a disease of the heart muscle, and dilated cardiomyopathy means that the heart is enlarged. When a heart stretches, it is trying to work harder, but an enlarged heart actually functions more poorly. The "idiopathic" in my diagnosis means doctors don't know what caused my cardiomyopathy. Half of the people who are told they have dilated cardiomyopathy have no known reason why it developed. An echocardiogram which uses sound waves to show the heart beating on a monitor revealed that the amount of blood my heart pumped out to my body with each beat was only 15-20% instead of the normal 55 to 65%. The left side of my heart was enlarged, the result of struggling to work harder.

My search to understand my condition led me to national treatment guidelines for heart failure developed by expert panels of the American College of Cardiology and the American Heart Association. I recommend every person with heart failure and their loved ones read these guidelines. To my dismay, I saw that I was not on two of the basic medicines proven in clinical trials to treat heart failure and prolong life, an ACE inhibitor and a beta blocker. I turned to a second cardiologist. He insisted I have an angiogram in which a catheter is threaded through an artery in the groin up to the heart to see if the heart's main arteries are blocked by fatty buildups that could prevent blood from getting through. The question he wanted to answer was did I have severe coronary artery disease that could cause a heart attack. I didn't agree to the angiogram immediately. I didn't want to have this test because I am extremely allergic to the dye used in the exam. So he suggested I see a heart failure specialist, which I did.

The specialist blew me away with his advice: I needed a heart transplant. He ordered a stress echocardiogram, the same sound-wave test I had gotten before in a cardiology group practice center, but this time, it would show how my heart functioned when challenged by activity. However the doctor running the test stopped before getting to the stress part. "We found what we need to know," he said. The specialist would come in to talk to me.

I waited for about half an hour wondering what the heck. The specialist arrived, sat down beside me and drew a rough outline of my heart on a piece of paper, shading an area from the left side down and around the bottom.

"This part of your heart is dead," he said. "You have either had one large heart attack or several small ones."

I felt shocked to my bones because this was news to me and, next, oddly, I felt a deep embarrassment, almost shame. I was a veteran health journalist and I had not known when I was having a heart attack? How incompetent of me.

The specialist agreed that I must have an angiogram and said he could give it to me. The test would take 30 minutes and would likely find several very occluded arteries, he said. The second cardiologist I had seen, the one who referred me to the specialist, had told me he could do the angiogram in 20 minutes and held out more hope than the specialist did that he could perform some intervention during the angiogram to open the dangerously occluded arteries he expected to find. I chose the 20-minute man, reluctantly agreeing to this dreaded test.

I warned this doctor who would perform the angiogram that I am very allergic to the dye he would use in the test. I had never had an angiogram, but the same iodine-based dye is used in CAT scans as a contrast medium and years earlier during a CAT scan I suddenly couldn't breathe. The doctor assured me he could give me medicines before the procedure that would prevent any allergic reaction. I took the medicines, the procedure began, and I thought this isn't so bad, piece of cake.

Then a technician called out "Mary, how do you feel?"

"I feel strange," I said. I had no pain or heaviness in my chest but felt a very abnormal and unsettling sensation in my heart. "Very strange."

The next thing I knew the procedure was over and the doctor who administered my angiogram was hurrying out of the room. "But I have questions to ask you," I said to the back of the departing cardiologist. "You won't remember the answers," he said over his shoulder.

As soon as the doctor left the procedure room, a technician who had helped with the test spoke up. "We had to shock you," she said.

I was dumbfounded. "I didn't feel anything."

"It's a good thing you didn't. It would have been very uncomfortable."

I looked down and saw three burn marks on my chest and later found one on my left ribs. I had died on the exam table and been resuscitated with four electric shocks. But we found the answer to the doctor's question, which I would soon learn.

My accidental worldly departure during the angiogram led the doctor who gave it to admit me for an overnight stay in the hospital for observation; but, although I asked to see him, he would not visit me. He turned my care over to the third cardiologist, the heart failure specialist. I'm a big believer in all's well that ends well and was glad to be alive.

The specialist came to my room and told me what the angiogram had revealed: my arteries were not at all blocked. I did not have coronary artery disease. Therefore, reversing what he had told me days earlier, he said I could not have had a heart attack. My face lit up with a huge smile. "That's great!" I nearly shouted.

"Not really," he said, no smile on his face. "We could have fixed that."

"So where do we go from here?" I asked, feeling deflated that he did not share my joy.

"Heart transplant," he responded.

None of the three cardiologists I had seen, including this one, had put me on the two major recommended medicines for heart failure, an ACE inhibitor and a beta blocker. Yet, without seeing what these drugs could do to improve my own heart's function, the specialist wanted to take my heart out of my body and sew in a new one.

No, no, no! You're jumping the gun, fellah. I was so surprised that after getting such good news from a test that nearly cost me my life he would want to proceed with the same plan as before the test. I knew I had to get away from this doctor and look once again for good care. It was now three months since my diagnosis of heart failure and the clock was ticking. Without proper treatment, heart failure progresses and is deadly. And one aspect of heart failure is that a person who has it can experience sudden death, dropping dead in an instant unless someone can get to them with a defibrillator to shock their heart back to work.

Frightened and very stressed, I asked myself, "Who do I trust?" That's not grammatically correct, but it was what my brain was asking. The answer came to me: a neurologist I had seen many years ago at Johns Hopkins Hospital. I contacted him and explained my situation. He contacted a colleague who was a senior cardiologist at Hopkins who told me the person to see was Edward Kasper, then director of the Heart Failure and Transplant Service. Uh, oh, I thought, concerned about the "transplant" part of his title. But a doctor I trusted was sending me here and I felt this was the right thing to do.

Dr. Kasper listened to my story and then said that he would not consider a heart transplant. The first thing to do, he said, was to see how I did on an ACE inhibitor and a beta blocker, along with some other medicines for heart failure. And if those didn't work well enough, there were other things to try such as implanted devices to help the heart work better. A heart transplant was only a last resort. I was scheduled to begin teaching a university writing course in a few weeks. Would I be able to do that? Yes, he said, he was sure I would be feeling much better soon. I thought he seemed almost nonchalant about my situation, which, actually made me feel relieved. He expected me to get better.

I took my new medicines faithfully and began improving. My attitude toward heart failure changed as I relegated it to the background of my life and got back to teaching writing and co-editing a book. We decided I should get a biventricular pacemaker to correct an electrical timing problem that made my left ventricle beat out of sync. This problem called a left bundle branch block was not the cause of my heart failure. But the uneven beating of my left ventricle caused my heart to work harder. I recovered from heart failure. I still have my own heart which returned to a normal size and is pumping blood out at a very normal 65%. I continue to take low doses of an ACE inhibitor and beta blocker, avoid high-sodium foods, and exercise. Since we don't know what caused my cardiomyopathy which caused the heart failure, I want to do all I can to avoid its returning.

My experience with heart failure and the health care system made me realize just how important we, the patients, can be in deciding a treatment plan. The patient must truly be a partner with her doctor and not passively accept whatever any doctor says to do. In order to be a strong partner, you will need to educate yourself to become informed and then get involved in planning your treatment.

What turn might my life have taken if I had not done some research and continued looking for the best care? Getting the gift of a new heart is a miraculous second chance for those people with severe heart failure who have not responded to medicines and devices to help their heart work better. But a heart transplant also means a lifetime of taking many medications, having some serious side effects, and getting tested repeatedly. Let's be sure those who get this precious gift need it. I, thankfully, did not.

About HeartSense

The problems I experienced during my three-and-a-half month search for good care prompted me to ask my fourth cardiologist, Ed Kasper, who has cared for heart failurepatients for 20 years and is now Director of Clinical Cardiology at Johns Hopkins Hospital, to write a book with me about heart failure. I wanted to alert the public to this mushrooming health problem that catches many of us unaware. Ed is deeply knowledgeable about heart failure and I was deeply inquisitive and searching for answers. I thought we made a perfect team. We agreed to write the truth as best we could find it about all aspects of heart failure. Our book, Living Well with Heart Failure, the Misnamed, Misunderstood Condition, led to this blog.

In this space I will talk about issues we raise in the book, bring new issues to your attention, and try to put in perspective some of the breaking news reports you may see regarding heart failure. And from time to time I will remind you about why it's important to build a strong, knowledgeable partnership with your doctor in planning your own care.