My Journey with Heart Failure

By Mary Knudson

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.


 

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Comments

  • 10/18/2010 11:01 AM Bruce wrote:
    Congratulations on this new blog. It takes courage to write about your own serious disease, so I commend you. But who better to do it than a health writer? Wishing you all the best on your journey towards better health.
    Reply to this
    1. 10/18/2010 1:55 PM Mary Knudson wrote:
      Thank you so much. I look forward to writing the blog. Hope you visit again.

      Mary
      Reply to this
  • 10/18/2010 12:30 PM Deirdre wrote:
    Hi Mary,

    I heard about your new site from Gary Schwitzer on Twitter. My dad had heart failure and it was a difficult and confusing experience for our family. Many thank yous for adding clarity for the many people that live with CHD every day. Good luck to you.
    Reply to this
    1. 10/18/2010 1:49 PM Mary Knudson wrote:
      Hi Deirdre,

      Thanks for visiting my site. I hope to meet a lot of families who are experiencing heart failure. It is indeed both scary and confusing at times, but I've learned that many people can get better. You seem to use past tense in mentioning your dad's heart failure. I hope things did not go poorly for him. Thanks so much for your interest and your kind thoughts.

      Mary
      Reply to this
  • 10/18/2010 1:23 PM Fraz Ismat wrote:
    As a clinician & researcher, seeing this description of being on the "other side" of a terrible sounding diagnosis was very eye-opening. I hope that all of my fellow docs will read this story and make appropriate adjustments to how they (we) discuss such grave matters with our patients & families.
    Reply to this
    1. 10/18/2010 1:53 PM Mary Knudson wrote:
      To Fraz Ismat,

      Thank you so very much for your kind words. I appreciate your reading the story and commenting so beautifully.

      Many thanks,

      Mary
      Reply to this
  • 10/18/2010 10:37 PM Steve C wrote:
    Wow, what a story.

    My journey with heart failure began in 2002. I was born in 1966 with a Congenital Heart Defect (Tricuspid Atresia) and that was the trigger. I happened to be on a 10 day vacation when it become obvious - I was exhausted and tired and had no energy. I was traveling down the East Coast by train, taking in several minor league baseball games along the way. I got caught in a downpour in Charleston, SC and woke up the next day feeling horrible. I was convinced that I had caught a cold, so I took OTC meds and drank enough Orange Juice to drown an elephant.

    I was still exhausted when I got home, but I was certain that I had just had TOO MUCH FUN. A couple of nights of good sleep in my own bed would fix me right up. But my father asked me to sweep the carport - something I have done countless times before - but this time I was so exhausted that I just dropped the broom and sat down. Fast forward a month and I was at Emory University Hospital in Atlanta getting a pacemaker, learning the diet, and getting familiar with the HF medications.

    I write a blog about living with a heart defect titled "Adventures of a Funky Heart!" and with your permission, I would like to add your blog to my blogroll. Heart Failure is a part of my story, but only a part - and your blog would add more information and a differing viewpoint.

    Steve
    Reply to this
    1. 10/19/2010 6:55 AM Mary Knudson wrote:
      Hi Steve,

      We both got heart failure in the same year. by all means add my blog to your blogroll. Glad you're passing along your knowledge about heart disease. Thanks for getting in touch.

      Mary
      Reply to this
      1. 12/2/2010 8:18 PM Carissa wrote:
        See the 11/30 notice about Steve at ACHA.

        http://www.achaheart.org/news/
        Reply to this
        1. 12/2/2010 8:50 PM Mary Knudson wrote:
          I am so very sorry to learn of the death of Steve Catoe who suffered from a congenital heart defect and wrote a blog Adventures of a Funky Heart that educated people about this health challenge and marshaled support. I am honored that he got in touch with me to say that he appreciated this blog and asked to link to it on his blog. Steve was the message board moderator for the Adult Congenital Heart Association and many people will be saddened and surprised that he is gone and will miss him very much. I hope the work he was doing will continue. God bless you, Steve, and your family and friends. Thank you for alerting me, Carissa.

          Mary
          Reply to this
  • 10/25/2010 2:16 PM Heather wrote:
    Hi Mary,

    I'm excited to follow your blog and hear about your journey. I just wanted to share a blog post I wrote recently on the loss of my mother to "heart failure" and how we should know more about this catch-all term:

    http://beaker.sanfordburnham.org/?p=1659

    Thanks!
    Heather
    Reply to this
  • 10/25/2010 2:30 PM Mary Knudson wrote:
    Thank you so much for writing, Heather. My next blog post is looking at the name "heart failure" that is, on the one hand too unnecessarily scary for many people who get the diagnosis and yet is fatal, sometimes through sudden death which your mother experienced. I'll write a future post about sudden death. Devastaing as it was, please know that the good part is that your mother didn't suffer. The bad part was that she was way too young to die. Heart failure is far too big an umbrella for all the people who are told they have it. So glad you found my blog. Please keep in touch.

    Mary
    Reply to this
  • 10/29/2010 9:47 PM Rebecca Fortunato wrote:
    Dear Mary;
    Your story has truly moved me. You've undergone an amazing journey and are kind enough to share it with the rest of world...thank you.
    I, too, write a blog about my heart disease and it would be an honor to post a link to your site on mine. Might that be ok?
    Take care,
    Rebecca Fortunato
    Rebecca's Heart
    Reply to this
    1. 10/30/2010 1:27 PM Mary Knudson wrote:
      Thank, Rebecca. By all means, happy for you to post a link to this blog site. Wishing you the best!

      Mary
      Reply to this
  • 11/2/2010 2:01 PM Mary Knudson wrote:
    You're welcome. Thanks for visiting this blog. Glad you enjoyed what you read.
    Reply to this
  • 11/4/2010 4:05 PM pulse oximeter wrote:
    I agree about being a partner with your doctor. If Doc says to do something, then DO IT! Don't be critical. But don't be afraid to ask questions, either. I am lucky, my wife is a nurse.
    Reply to this
  • 11/8/2010 2:36 PM exterminador nueva york wrote:
    I learned, is a disease of the heart muscle, and dilated cardiomyopathy means that the heart is enlarged.
    Reply to this
  • 11/12/2010 5:10 PM Karen Kording wrote:
    Thank you for writing of your experience. It is a bit better than mine but nonetheless I have lived with the same diagnosis as you since 1991.

    One must certainly become an advocate for themself and seek out the appropriate care. When in doubt...look further.
    Reply to this
    1. 11/13/2010 1:44 PM Mary Knudson wrote:
      Karen, Congratulations! You are living nearly 20 years since your diagnosis. Indeed, it is so important to learn about your condition and proven treatments, become an empowered patient, and find the best care.
      Glad you found this blog and I hope to hear from you again.

      Mary
      Reply to this
  • 11/17/2010 9:10 AM Gucci Borse wrote:
    That is terrible journey. .You are really strong
    Reply to this
  • 11/30/2010 11:04 PM Jamie wrote:
    Mary,
    It was comforting to hear from someone that has experienced this condition. I'm 5 years into my heart failure and 1 year since my pacemaker/defib implant. I received 2 shocks from my defib a few months ago. I wasn't having a cardiac event. I was walking and fully conscious when it happened. I've lost my peace of mind and don't feel in charge of my body anymore. I always cry when I think how much it has hurt my 6 year old and how close I came to getting a 3rd shock. It would have been twice the voltage as the first two. They don't know why the device stopped at two, but I'm so thankful it did! I look forward to getting a copy of your book.
    Reply to this
    1. 11/30/2010 11:19 PM Mary Knudson wrote:
      Dear Jamie,

      Thanks for writing. I understand your feelings aout your defibrillator (ICD). Did you get your ICD read after it went off? The technician who checks it out can tell you if it fired appropriately or not. The technician or doctor can read what was going on with your heart at the time of the shock. A person can experience sudden death while walking or while sitting with family watching a TV show or whatever. That's why you got the ICD implanted to prevent such a thing from happening. Sudden death is not a heart attack. You don't feel a crushing pain or weight in your chest. It is sudden. When you get my book, see the chapter on sudden death. I experienced it once. If your ICD fired inappropriately, I can understand your being nervous that it may fire inappropriately again. Many more of us get an ICD than ever turn out to need one. I had one for a few years and had it removed because it never went off and I and my doctors agreed I didn't need it.

      Take care and thanks for being in touch. All best to you.

      Mary
      Reply to this
  • 12/12/2010 1:42 PM Billy Merle wrote:
    Thanks Mary,
    Ordered your book for Christmas present for me the caregiver. Not every patent addresses issue head-on or at all. That is where the caregiver fits in. The patient, my spouse with similar left pacing problem is within 18 months of 1st CRT battery replacement. The 2nd caregiver is the bedside monitor read in middle of night by pacemaker technician weekly or when alarmed. Caregiver role was important as cardiologists and electro-cardiologists changed and new one refused, argued with caregiver questions - have new electro-cardiologist now for battery change. Meds have helped along this 30 year changing, except for 3 generics that proceeded hospitalization - poor cost savings - now only non-generics. One was recall that was multiple times powerful (reason for recall), primary care physician asserted himself against the stint cardiologist and cut meds to 1/2 doses, 2 years ago - great call! Some heart patients are sensitive to many medications and dosages. Thanks for sharing and good luck on your continuing journey.
    Reply to this
    1. 12/12/2010 4:30 PM Mary Knudson wrote:
      Thanks for writing, Billy. My, you and your wife have had quite a journey yourselves. You're right, it is so important to have a caregiver who will be an active patient advocate, especially when the patient is too sick or too shy to speak up. As you well know, it is important to know what your medications are for and report any side effects, keeping in mind that side effects may occur months after beginning the medication. All best to you both!

      Mary
      Reply to this
  • 1/5/2011 7:07 PM sarah wrote:
    Wow, can't believe how much your story spoke to me, thank you for publishing. also am living with cardiomyopathy have a biv defibb and now am hearing talk of a transplant, have been on all the drugs you mentioned however my ej fraction is only 27 percent yet there are days i feel fine. Can't imagine having to face a transplant. Was wondering if you used alternative meds (vitamins) as well.
    Reply to this
    1. 1/5/2011 9:05 PM Mary Knudson wrote:
      Hi Sarah,

      I wish you the best. Ejection fractions are funny things. They say something significant about how well the heart is beating, but they don't predict how well someone will feel or how much energy they have in getting around. I hope you don't need to get a heart transplant. Be sure to get a second opinion on that at a different hospital just to be sure you have two independent opinions before deciding to do it. You asked about taking vitamins. I have long taken a multivitamin daily.

      Keep in touch. I welcome your comments on other posts on this blog. Take care of yourself.

      Mary
      Reply to this
  • 1/11/2011 5:23 PM Thomas Medical wrote:
    Mary - I just finished reading your story. Your right it very much calls you to be in control of your own medical care. My dad has been struggling with some of the same things that you were - I definitely need to get him to a heart doctor. -Karen
    Reply to this
  • 1/30/2011 4:41 PM James Borton wrote:
    Mary,

    Thank you for establishing your blog and for the courage to share your heart event story. I am also a writer/blogger and survived my triple bypass surgery. Although I bled out and remained in a coma for nearly 8 days. The journey to purgatory and back was eventful and I had no Virgil as a guide.

    Would like to post your story on my blog and also publish your photo (send a jpeg image) and of course, promote your new book.

    Best regards,
    James Borton
    asiareview@yahoo.com
    Reply to this
  • 1/30/2011 8:14 PM Mary Knudson wrote:
    Thanks, James. I'm glad you survived your surgery and the terrible aftermath.

    You are welcome to post my story on your blog. I hear from people who have heart failure that the book is helpful to them. Thanks for spreading the word about the book.

    I hope you are okay now.

    Mary
    Reply to this
  • 1/31/2011 12:02 PM emma wrote:
    Very emotional article. Well done to the author.
    Reply to this
  • 2/11/2011 10:03 PM lasik eye surgery wrote:
    I don't want to copy this web site, but I actually like the design. Could you touch upon which theme you are using or was it customized for this website?
    Reply to this
  • 2/15/2011 10:57 AM Mike wrote:
    Thank you Mary,
    I also suffer from a cardio myopathy, I see Dr Kasper and I read your book. This is an adventure. I plan to follow your blog and hopefully get some tips on exercize, diet, and the meds. My cardio-version has held for eleven months and I am an active partner with the Doc. Thank you for this forum.....Mike
    Reply to this
  • 10/21/2011 3:54 AM vi da wrote:
    . I try to get out of the house as much as I can and do productive things such as Institute, church, Home Evening, and shopping for the necessities. I have an appointment with the HF doctor in a week and hope to get an idea of what to expect. I am a little nervous because I don't know much about whats wrong. I know we'll just have go a day at a time. Anyway. Some of my phriends are having some problems and my heart and prayers go out to them. May God bless them in their endeavors. May God direct their doctors in treatments as I know He has directed mine.
    Reply to this
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