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

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.

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.

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?

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!

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.

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?

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?

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.

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

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