A Patient’s Journey with Heart Failure

By Barbara Ficarra, RN, BSN, MPA

Q & A with Mary Knudson

Mary Knudson

Mary Knudson, a patient, health journalist and author, shares a glimpse into her journey with heart failure.

Mary Knudson was diagnosed with heart failure in 2003.

She knew something wasn’t quite right.  She became very short of breath and fatigued from walking from one room to another in her home.

After being diagnosed with heart failure, she was frightened.  “I thought the diagnosis sounded fatal and the doctor said he couldn’t predict my prognosis,” she said to me in an email.

“The first 3 and a half months I did not get good care and had several harrowing experiences.  Once I found the right treatment, I got better and eventually recovered from heart failure,” she added.

According to MedlinePlus, Heart failure is a condition in which the heart can’t pump enough blood throughout the body. Heart failure does not mean that your heart has stopped or is about to stop working. It means that your heart is not able to pump blood the way it should.

Research can change your life.

Mary writes in her blog, Heart Sense, “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….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.

Q & A with Mary Knudson

Q:  (Barbara)

What was your experience like with your doctor and other health care professionals?

A:  (Mary)

My experience differed from one doctor to another.  I had bad experiences and bad care for 3 and a half months and then my fourth cardiologist understood heart failure and put me on the right medications.

Excerpt from Heart Sense:

“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…”

[More on the journey with heart failure.]

Q:  (Barbara)

What questions should patients ask their doctor if they have heart failure?

A:  (Mary)

Ask what type of heart failure you have and together with your doctor see if you can figure out what caused it.  Many people have no known cause of heart failure.  Once you know what type of heart failure you have, take the time to read the Guidelines for Diagnosis and Treatment of Heart Failure in Adults prepared by a joint committee of the American College of Cardiology and the American Heart Association.

Check to see what medications are recommended for your type of heart failure and see if you are taking all of those medications.  If you are not, ask your doctor why you are not on the medications recommended in the national guidelines for treating heart failure.  If you don’t get a good answer that you understand and agree with, move on to another doctor.

Q:  (Barbara)

What is the most important thing that you want people to know about heart failure?

A:  (Mary)

Get to a doctor if you have symptoms of shortness of breath, fatigue, and swelling in your ankles. Not everyone with physical changes in their heart or arteries will have symptoms.  If you have had a heart attack or if someone in your family has a disease of the heart muscle called cardiomyopathy or has heart failure, you should see a cardiologist and get an echocardiogram, a sound wave test of your heart, and a checkup to see if you have cardiomyopathy or heart failure. If you do have heart failure and do not get on the right treatment, it will progress.  But many people who do get on proper treatment will be able to hold their heart failure in check or even improve or recover.

Q:  (Barbara)

Do you feel there is sufficient information on the topic of heart failure?  Is there enough public awareness?

A:  (Mary)

I don’t think there is yet much public awareness of heart failure, which is why we wrote our book Living Well with Heart Failure, the Misnamed, Misunderstood Condition.  The public is very aware of heart attacks.  But a person who survives a heart attack may go on to later develop heart failure because a portion of the heart died in that heart attack and is no longer working.  The rest of the heart has to take up the job of the dead portion and so the heart works harder.  There are many other causes of heart failure and not all causes are known.  Probably one day we will learn that there are more genetic influences that make people susceptible to heart failure. People need to be very careful in looking up information about heart failure on the internet.  There is some good information and some bad and unnecessarily frightening information.  Whatever statistics you find on prognosis and death from heart failure is outdated, so don’t believe it.

Resources Mary recommends [Heart Sense]

Mary writes in her blog.

“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.”

You and your medical team.

It can be very helpful for you if you partner with your doctor and other members of the health care team.

It has been said that, the patient is the most important part of the medical team:

Patients are the center and the most valuable part of the team.  We need to involve them in their care and understand that they are the integral part of the health care team.  We need to encourage them to be a proponent of their own health care.  We need to let them know that it is okay to ask questions and to take charge of their health.  Patients may have some self-doubt about questioning health professionals.  They may feel uneasy and perhaps they may have difficulty expressing themselves, but we can offer reassurance and continue to encourage them to be
proactive. –BF

Follow the journey.

For a full description of Mary’s journey, see Mary’s first post on her blog HeartSense.

Mary’s harrowing experience and journalistic expertise has led Mary to reach out to other patients to help them learn about the growing problems in health care, the importance of questioning health care professionals, and researching information from reliable sources.  Mary’s heartfelt blog offers expertise and insights that can help people gain a better understanding of their disease.

Her book, Living Well with Heart Failure, the Misnamed Misunderstood Condition, co-authored with Edward K. Kasper, M.D. explains in simple terms what you need to know about heart failure from treatment to the challenges.  It also talks about the Doctor-Patient relationship, what you need to know about being a patient in the hospital, plus where to find more information.

Your turn

Are you a patient with heart failure?  What has been your experience?  Share your journey with us?  Do you research heath information on the internet?

About Mary Knudson

Mary Knudson is a health journalist who is co-author of Living Well with Heart Failure, the Misnamed, Misunderstood Condition and teaches health and science writing at Johns Hopkins University. She is co-editor of A Field Guide for Science Writers and was a journalism fellow at the Harvard School of Public Health.  She blogs at Heart Sense.

[The content on this website and related broadcasts is for informational purposes only and is not a substitute for medical advice or treatment for any medical condition. Promptly seek professional medical care if you have any concern about your health. Always consult your physician before making any changes to your medical regimen.]

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