Confused about Stiff Heart, Diastolic Heart Failure, or HFpEF?

Posted by Kanaaz Pereira, Connect Moderator @kanaazpereira, Fri, Jan 18 5:03pm

Nearly half of all patients with heart failure have a normal EF or ejection fraction. EF is a percentage of how much blood the left ventricle pumps out with each contraction. Why is that?

To get some answers, and with Valentine’s Day just around the corner (what better way to celebrate than by learning about your heart), we sat down with Mayo Clinic cardiologist and heart failure specialist, Dr. Farris Timimi. In this video, Dr. Timimi explains the phenomenon of heart failure with preserved ejection fraction or HFpEF.

Do you have heart failure with preserved ejection fraction (sometimes called Stiff Heart or Diastolic Heart Failure)? What limitations have you experienced with a HFpEF diagnosis? What has helped you?

Hi @barbarajane @cynaburst @cynthiamary @lynnkay1956 @medic7054 @evelyn247 @c410djh @jigglejaws94 @thankfulalways @mpeters @sammysky @bjanderson @jwoj @brittalisse @pfazenbaker @pepper1311 @predictable @thankful @hopeful33250 @harmonybentley @mzhp1988 @lioness @wangs @gibbs @soloact,

I’d like to invite you to join this discussion about heart failure with preserved ejection fraction or HFpEF – also known as stiff heart or diastolic heart failure. Share your experiences, ask questions, and let’s support and learn more from each other. Please drop a note to say hi and introduce yourself.

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Mitzi Perkins here. Thank you for the invitation I am newly diagnosed with stiff heart. I am the only person in my family who has this syndrome: I had never heard of it before.and would like to better understand what causes it.

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This was an interesting presentation by Dr. Timimi. I so appreciate your posting it @kanaazpereira. I've always found this to be confusing. I've been told that my stiff heart is caused by aortic insufficiency. My aortic valve only shows moderate leakage, but the fatigue I feel with even moderate aerobic exercise is discouraging to me. My ejection fraction (EF) is still strong so no one wants to do anything to the valve (replace or repair) which is understandable as there are many risks to open heart surgery. Also, I have no symptoms of congestive heart failure (edema of the feet, legs) so that is good as well.

It is discouraging however, to not be able to walk a flight of stairs, walk a half-mile without becoming exhausted. I'm waiting for the day when these kinds of heart problems can be fixed without such dramatic surgery, but not sure that is going to happen in my lifetime.

I'm looking forward to hearing from others. Will there be other videos like this which might discuss this disorder in more detail?

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I have hypertrophic cardiomyopathy with LVOT obstruction, high BP, and recurrent atrial fibrillation. Echo shows left ventricular stiffness and diastolic dysfunction.but no evidence of heart failure yet.on beta blockers and anti coagulation.
Only medicine to control BP is Amlodipine. But that worsens breathlessness!

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Hello @arcp

Welcome to Mayo Connect! I'm glad that you found this discussion and are sharing about your heart situation. I'm sorry to hear that your Amlodipine is causing breathlessness. That sounds very uncomfortable. Have you discussed this with your doctor?

I have been fortunate to use an ACE Inhibitor which works really well and I feel better shortly after I take it. I seem to relax all over when I take the ACE Inhibitor. Here is some information about the way an ACE Inhibitor works, https://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/ace-inhibitors/art-20047480

I also take a beta blocker which slows the heart rate. Whenever I have my BP taken at the doctor's office the machine always beeps a warning signal because my BP is so low, but the cardiologist said he prefers it that way.

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Hi, thanks for the invite. I’m always searching to learn more about my heart failure. I do experience some tiredness but tend to attribute that to the Metoprolol. I was first diagnosed after experiencing Afib. It is now chronic but the Metoprolol and Diltiazem keep it at a lower rate. I also have severe tricuspid regurgitation. I do wonder if the hf causes the tricuspid problem or if the tricuspid valve problem contributes to diastolic dysfunction. I, also, read of a medication used for Myscular Dystrophy that may be helpful for the stiffening of the heart. Has anyone heard of this?

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Hello @bjanderson

I had not heard of meds for Muscular Dystrophy being used to help with stiffening of the heart but find that interesting. Do you recall where you read that information?

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Hi Hopeful. I do have a website for you. It is:
http://www.sciencedaily.com/releases/2018/02/180207164033.htm
I did reread it and found the drug is being studied for muscular dystrophy also. It is not yet being used. Let’s hope it comes to fruition.

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Thank, @bjanderson. That is an encouraging thought! I appreciate your looking that up.

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@hopeful33250

Thank, @bjanderson. That is an encouraging thought! I appreciate your looking that up.

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Sure thing. If I find any other encouraging info I will pass it on.

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@bjanderson

Sure thing. If I find any other encouraging info I will pass it on.

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Great, @bjanderson. I'm always looking for encouragement as I'm sure we all are😊

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After reading all of your posts, I have a question. Evidently, my condition is advanced: I have had leg swelling for over 20 years, mostly in my left side. My left side has been larger than my right since birth. I have the extreme fatigue, the breathlessness after little exertion and have recently developed a cough. Where am I on the survivability scale? Oh, and is it better to try to push myself through the fatigue, as I do, or get more rest? I really want to know as I have recently found my son after 52 years and would like to get to know him. I can handle grim news if that is what it is. Thank you.

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Hello @mzhp1988, I am sorry to hear of all the heart difficulties you are experiencing. I'm sure that this makes you concerned about your future. As you probably know, @mzhp1988, on Connect we cannot make health evaluations. These type of questions need to be answered in a doctor's office. Your doctor would have the best information to handle these questions, especially about what types of exercise that would be helpful to you with your current heart problems. Will you contact your doctor's office and ask these questions?

Also, congratulations on finding your son after 52 years! How nice that you have an opportunity to get to know him now.

Will you post again and let me know how you are doing?

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@hopeful33250

Hello @mzhp1988, I am sorry to hear of all the heart difficulties you are experiencing. I'm sure that this makes you concerned about your future. As you probably know, @mzhp1988, on Connect we cannot make health evaluations. These type of questions need to be answered in a doctor's office. Your doctor would have the best information to handle these questions, especially about what types of exercise that would be helpful to you with your current heart problems. Will you contact your doctor's office and ask these questions?

Also, congratulations on finding your son after 52 years! How nice that you have an opportunity to get to know him now.

Will you post again and let me know how you are doing?

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Thank you. Yes, I will.

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@arcp

I have hypertrophic cardiomyopathy with LVOT obstruction, high BP, and recurrent atrial fibrillation. Echo shows left ventricular stiffness and diastolic dysfunction.but no evidence of heart failure yet.on beta blockers and anti coagulation.
Only medicine to control BP is Amlodipine. But that worsens breathlessness!

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I feel like a twin for @arcp, except for the left ventricle outflow tract (LVOT) obstruction, which has not been identified (yet?), and the Amlodipine medication for hypertension (mine is Carvedilol, a beta blocker, plus Lisinopril, an ACE inhibitor). Everything else seems the same as yours. As to symptoms, I'm not conscious of any, although lab tests, BP readings, EKGs, and sonograms all show evidence of the other problems we share. When my A-fib diagnosis was made four years ago, my cardiologist said it's the "very definition of diastolic deficiency" — reduced ability to refill the atrium with fresh blood and send it on to a ventricle. Although it may seem contradictory, I had a small stroke in June that doctors said probably was caused by a small clot formed in my heart as a result of A-fib. After six weeks of physical therapy, I'm now working to regain physical stability and have made a lot of progress on that. Fortunately, I haven't experienced breathlessness or dizziness, which would cause me to call 9-1-1 and get taken to the hospital in case another stroke is under way. I hope my plight will be helpful to you and others in this discussion. Martin

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