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HeartSense: A blog about heart failure

HeartSense: A blog about heart failure

Picture of Mary Knudson

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.

Comments

Picture of Michelle Levander

Mary, thanks for sharing this moving and important story. A few years back, I accompanied my mother as she tried to decide whether to have a knee replacement. Each doctor she saw had a dramatically different assessment of the problem and a different recommendation for how to fix it. It seemed disturbing at the time, but it was only a knee. A heart is another story all together.

 

 

Picture of Mary Knudson

Thanks for reading and commenting.  I'm sure you and your mother were disturbed by your different visits to doctors about her knee because you were left wondering what to do.  I think all we can do is educate ourselves about our health problem and then try the less extreme before the extreme treatment if there is reason to believe that the less extreme will work.

Mary

 

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Mary, your story is incredible. You've done a real service by writing a book and doing this blog. And I'm so glad that you're back to good health.

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blood tests have been used for approximately 50 years to detect substances that are present in the blood that indicate either disease or a future risk of the development of a disease (Table). Blood tests detect substances that normally are not present or measure substances that, when elevated above normal levels, indicate disease.

Creatine kinase (CK) is an enzyme—a protein that helps cells perform their normal functions—found in the heart, brain, muscle and blood of healthy people. Blood levels of CK rise when your muscle or heart cells are injured. CKMB is a form of the enzyme that is found mainly in heart muscle. While a high level of total CK can indicate damage to muscle, a high CKMB level suggests that there is disease or damage to the heart muscle specifically.

http://clinicalnegligencesolicitorsuk.wordpress.com/

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I was diagnosed a month ago with CHF with an ejection fraction of 25%. Although I believe I have had exceptional Medical care and support from my family I have been getting progressively depressed and scared -especially at the prospect of sudden cardiac arrest. I was truly encouraged by w
hat I just read. I was wondering how long (if ever) it would take for me to wake up and not have my first thought be about my heart condition or my fear. I am following my doctor's direction and changed my diet but every little physical change (imagined or real) scares the crap out if me. Thank you so much for sharing and giving me the first optimism I have felt. Though people try to be supportive no one knows what you are going through unless they have gone through it themselves. Thank you!

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I have heart failure PEF and feel ill and breathless most of the time, have also hypothyroidism and polymyalgia rhuematica.

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Lengthy.....But such an educative post....

Normal people do not even get to the edge of the problem and get sever heart attacks.

Your post is like a ray of hope.....A small guide to understand the health issues and get to the edge of the problems in advance.

Great post!!

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He was diagnosed with nonischemic cardiomyopathy after being hospitalized with fluid in both lungs in Aug 2016 LVEF 30-35%; repeat echo in Nov 2016: LVEF 20-25%. Heart cath in Aug 2016 revealed nonobstructive CAD. He was prescribed beta blockers and an Ace inhibitor and two different fluid pills. He has finally started to feel stronger, although still tires easily. He has returned to work, where he is an editor for NASCAR. He had another echo done on Feb 27, 2017 and his LVEF has increased to 30% and the dr has suggested that he have an ICD implanted. My son is very worried about this as he has heard horror stories. Is this normal procedure to follow? Is it possible for his EF to return to 55-60%? His cardio drs can not tell him what his prognosis is and/or if he will get better. We are so worried. Reading your blog has been very encouraging. Thank you for your research. I have ordered two of your book, Living Well With Heart Failure.

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I can't walk15 ft w/o stopping to rest, about 4 rest times to get to my front door. Severely out of breath, legs feel super tight and heavy. My CHF specialist sent me to a Pulmonary doc, because she felt my shortness of breath isn't due to my heart. Pulmonary doc gave me a short test, walk 6 min in a air conditioned room, on a flat surface, I passed and I could not get oxygen. When I walk even a slight hill, bend over, try and do the very basics of life (bathing) I am so out of breath, my son has to carry me to my room. My so called CHF doc I haven't seen in awhile, 8/11 again she won't be there for my appt. I will be seeing her nurse. My doc's next appt is 9/29. I have some strange things happening, when I eat, I get severely out of breath and more strange things. I have seen many specialty docs, everything is normal. Can't get to the kitchen to make a simple meal, if I do succeed I feel I can't get enough air after I eat it. I have another appt with a Endocrinologist 8/29. This is probably another dead end but I'll try it. I live alone and am scared. My ICD/pacemaker went of 3 times in 5 days, they sent me home from ER. 3rd time they kept me because St. Jude rep said you better keep her at the hospital. They found out I had a aynourism in my aorta. I have had 3 heart attacks and a triple by-pass and my doc cancel's my appt when I'm feeling so strange. This hospital needs some serious overhauling. Too many patients not enough doc's.

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Hey Karol,
Your story sounds just like mine!! It is aggravating being sent place to place and with NO answers. I never even thought about an aneurysm. I have had a murmur in my aorta for a really long time. Thank you!

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Good Article.

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My Dad was diagnosed with heart failure on 09/06/2017. We don't have a history of family with hear condition and this was his first time hearing anything about hear failure. Needless to say we are devastated, this was the first positive article I have read . Thank you

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Thank you so much, Mary, both for your blog and book. Wonderful that you have regained your health. Terrifying to think what would have happened but for your research.

My husband has HF (EF 15-20 percent) and we've found the cardiologists we have seen to be very intimidating, and they certainly want to be in full control and dislike patients to express views or ask questions. Your book and blog have given us confidence to be more assertive and hope for the future. Thank you and Dr Kasper so much!

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thanks for the post

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thanks for the blogs very useful and grateful too

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The heart is like any other muscle in body. It needs an adequate blood supply to provide oxygen so that the muscle can contract and pump blood to the rest of the body. A heart attack occurs when a plaque ruptures and forms a clot in the artery causing a complete blockage. That part of the heart muscle that is denied blood supply starts to die.

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Thanks for sharing this information with us,I am learning a lot from you.

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Your blog is quite interesting and helpful. I just loved reading your blog. Thank you so much for sharing.

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Thank you for this informative blog. I'm learning about heart health from you

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