{"id":4319,"date":"2010-11-03T12:25:19","date_gmt":"2010-11-03T16:25:19","guid":{"rendered":"http:\/\/blogs.nejm.org\/cardioexchange\/?p=4319"},"modified":"2011-07-19T17:45:25","modified_gmt":"2011-07-19T21:45:25","slug":"my-journey-with-heart-failure","status":"publish","type":"post","link":"https:\/\/blogs.nejm.org\/cardioexchange\/2010\/11\/03\/my-journey-with-heart-failure\/","title":{"rendered":"My Journey with Heart Failure"},"content":{"rendered":"

Well-known science journalist Mary Knudson is the author of HeartSense<\/a>, a blog about heart failure, from which the following post is taken. In this post, she describes her journey as a heart failure patient from bewildered dismay to self-empowerment; in an upcoming post, she questions the aptness of the designation \u201cheart failure.\u201d<\/em><\/p>\n

<\/em><\/p>\n

I got to know something about heart failure the hard way, by having it.\u00a0I 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.\u00a0Not only was my diagnosis overwhelming, but my first encounters with the health care system were dismal.\u00a0It took me three and a half months to find good care.\u00a0My 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.<\/p>\n

In heart failure, the heart can no longer perform well enough to get adequate blood and oxygen to the body.\u00a0With 6 million people living with heart failure in the United States alone, it is already a huge medical problem, and it will get bigger as baby boomers continue to hit their fifties and sixties.\u00a0Heart failure is a serious condition that can be fatal, but I would learn that it can often be managed with the right treatment.\u00a0My own research\u00a0about heart failure changed my life.<\/p>\n

In December 2002, I found myself getting fatigued and easily out of breath, with swollen ankles and a swollen abdomen. My asthma was normally under control, but I turned to my asthma specialist because of the shortness of breath.\u00a0He noticed my swollen ankles and said he didn’t think my problem was asthma.\u00a0I had begun to think the same thing.\u00a0He advised me to immediately see my internist, 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:\u00a0\u201cidiopathic dilated cardiomyopathy and biventricular congestive heart failure.”\u00a0It was those last two words that got my attention.<\/p>\n

I tried to get over my shock and digest the big words of the diagnosis,\u00a0searching the internet to make some sense of what had happened to me.\u00a0Cardiomyopathy, I learned, is a disease of the heart muscle, and dilated cardiomyopathy means that the heart is enlarged.\u00a0When a heart stretches, it is trying to work harder, but an enlarged heart actually functions more poorly.\u00a0The “idiopathic” in my diagnosis means doctors don’t know what caused my cardiomyopathy.\u00a0Half of the people who are told they have dilated cardiomyopathy have no known reason that it developed.\u00a0An echocardiogram, which uses sound waves to show the heart beating on a monitor,\u00a0revealed that the amount of blood my heart pumped out to my body with each beat was only 15% to 20%, instead of the normal 55% to 65%.\u00a0The left side of my heart was enlarged \u2014 the result of struggling to work harder.<\/p>\n

My search to understand my condition led me to national treatment guidelines for heart failure<\/a> developed by expert panels of the American College of Cardiology and the American Heart Association.\u00a0I recommend that every person with heart failure and their loved ones read these guidelines.\u00a0To my dismay,\u00a0I 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.\u00a0I turned to a second cardiologist.\u00a0He insisted that 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.\u00a0The question he wanted to answer was\u00a0whether I had\u00a0severe coronary artery disease that could cause a heart attack.\u00a0I didn’t agree to the angiogram immediately. I didn’t want to have this test, because\u00a0I am extremely allergic to the dye used in the exam, so he suggested I see a heart failure specialist, which I did.<\/p>\n

The specialist blew me away with his advice: I needed a heart transplant.\u00a0He 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.\u00a0However, the doctor running the test stopped before getting to the stress part.\u00a0“We found what we need to know,” he said.\u00a0The specialist would come in to talk to me.<\/p>\n

I waited for about half an hour, wondering what the heck.\u00a0The 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.<\/p>\n

“This part of your heart is dead,” he said.\u00a0“You have either had one large heart attack or several small ones.”<\/p>\n

I felt shocked to my bones because this was news to me, and, then, oddly, I felt a deep embarrassment, almost shame.\u00a0I was a veteran health journalist, and I had not known when I was having a heart attack?\u00a0How incompetent of me.<\/p>\n

The specialist agreed that I must have an angiogram and said he could give it to me.\u00a0The test would take 30 minutes and would likely find several very occluded arteries, he said.\u00a0The 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.\u00a0I chose the 20-minute man, reluctantly agreeing to this dreaded test.<\/p>\n

I warned this doctor who would perform the angiogram that I am very allergic to the dye he would use in the test.\u00a0I 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.\u00a0The doctor assured me that he could give me medicines before the procedure that would prevent any allergic reaction.\u00a0I took the medicines, the procedure began, and I thought this isn’t so bad, piece of cake.<\/p>\n

Then a technician called out, “Mary, how do you feel?”<\/p>\n

“I feel strange,” I said.\u00a0I had no pain or heaviness in my chest but felt a very abnormal and unsettling sensation in my heart.\u00a0\u201cVery strange.”<\/p>\n

The next thing I knew, the procedure was over, and the doctor who administered my angiogram was hurrying out of the room.\u00a0“But I have questions to ask you,” I said to the back of the departing cardiologist.<\/p>\n

“You won’t remember the answers,” he said over his shoulder.<\/p>\n

As soon as the doctor left the procedure room, a technician who had helped with the test spoke up.\u00a0“We had to shock you,” she said.<\/p>\n

I was dumbfounded.\u00a0“I didn’t feel anything.”<\/p>\n

“It’s a good thing you didn’t.\u00a0It would have been very uncomfortable.”<\/p>\n

I looked down and saw three burn marks on my chest and later found one on my left ribs.\u00a0I had died on the exam table and been resuscitated with four electric shocks.\u00a0But we found the answer to the doctor’s question, which I would soon learn.<\/p>\n

My accidental departure from this world during the angiogram led the doctor who administered it to admit me for an overnight hospital stay 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.\u00a0I’m a big believer in all’s well that ends well, and was glad to be alive.<\/p>\n

The specialist came to my room and told me what the angiogram had revealed:\u00a0my arteries were not at all blocked. I did not have coronary artery disease.\u00a0Therefore, he said, reversing what he had told me days earlier, I could not have had a heart attack.\u00a0My face lit up with a huge smile. “That’s great!” I nearly shouted.<\/p>\n

“Not really,” he said, no smile on his face.\u00a0“We could have fixed that.”<\/p>\n

“So where do we go from here?”\u00a0I asked, feeling deflated that he did not share my joy.<\/p>\n

“Heart transplant,” he responded.<\/p>\n

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.\u00a0Yet, 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.<\/p>\n

No, no, no!\u00a0You’re jumping the gun, fellah,<\/em> I thought.\u00a0I 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.\u00a0I knew I had to get away from this doctor and look once again for good care.\u00a0It was now three months since my diagnosis of heart failure, and the clock was ticking.\u00a0Without proper treatment, heart failure progresses and is deadly,\u00a0and a person who has it can experience sudden death unless someone can get to them with a defibrillator to shock their heart back to work.<\/p>\n

Frightened and very stressed, I asked myself Who do I trust?<\/em> That’s not grammatically correct, but it was what my brain was asking.\u00a0The answer came to me:\u00a0a neurologist I had seen many years ago at Johns Hopkins Hospital.\u00a0I contacted him and explained my situation.\u00a0He 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.\u00a0Uh, oh,<\/em> 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.<\/p>\n

Dr. Kasper listened to my story and\u00a0said that he would not consider a heart transplant.\u00a0The 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.\u00a0And if those didn’t work well enough, there were other things to try, such as implanted devices to help the heart work better.\u00a0A heart transplant was only a last resort.\u00a0I was scheduled to begin teaching a university writing course in a few weeks.\u00a0Would I be able to do that?<\/p>\n

Yes, he said. He was sure I would be feeling much better soon.\u00a0I thought he seemed almost nonchalant about my situation, which actually made me feel relieved.\u00a0He expected me to get better.<\/p>\n

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.\u00a0We decided I should get a biventricular pacemaker to correct an electrical timing problem that made my left ventricle beat out of sync.\u00a0This 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.\u00a0I recovered from heart failure.\u00a0I still have my own heart, which returned to a normal size and is pumping blood out at a very normal 65%.\u00a0I continue to take low doses of an ACE inhibitor and a beta blocker, avoid high-sodium foods, and exercise.\u00a0Since we don’t know what caused my cardiomyopathy, which caused the heart failure, I want to do all I can to avoid its return.<\/p>\n

My experience with heart failure and the health care system made me realize just how important we, the patients, can be in deciding on a treatment plan.\u00a0The patient must truly be a partner with her doctor and not passively accept whatever any doctor says to do.\u00a0To be a strong partner,\u00a0you will need to educate yourself to become informed and then get involved in planning your treatment.<\/p>\n

What turn might my life have taken if I had not done some research and continued looking for the best care?\u00a0Getting 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.\u00a0But a heart transplant also means a lifetime of taking many medications, having some serious side effects, and getting tested repeatedly.\u00a0Let’s be sure that those who get this precious gift, need it.\u00a0I, thankfully, did not.<\/p>\n","protected":false},"excerpt":{"rendered":"

Well-known science journalist Mary Knudson is the author of HeartSense, a blog about heart failure, from which the following post is taken. In this post, she describes her journey as a heart failure patient from bewildered dismay to self-empowerment; in an upcoming post, she questions the aptness of the designation \u201cheart failure.\u201d I got to […]<\/p>\n","protected":false},"author":394,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,14],"tags":[287],"class_list":["post-4319","post","type-post","status-publish","format-standard","hentry","category-general","category-heart-failure","tag-heart-failure-2"],"_links":{"self":[{"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/posts\/4319","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/users\/394"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/comments?post=4319"}],"version-history":[{"count":0,"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/posts\/4319\/revisions"}],"wp:attachment":[{"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/media?parent=4319"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/categories?post=4319"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.nejm.org\/cardioexchange\/wp-json\/wp\/v2\/tags?post=4319"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}