1. < Heart & Blood Health

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

Posted by Kanaaz Pereira, Connect Moderator @kanaazpereira, Jan 18, 2019

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?

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

susikelley | @susikelley | Aug 24, 2020
In reply to @tcokeefe "It seems from what I have read that with diastolic dysfunction or early stage heart failure,..." + (show)
@tcokeefe

It seems from what I have read that with diastolic dysfunction or early stage heart failure, there is basically nothing that can be done to improve it but that regular exercise like walking can help slow its progression. Is that correct?

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Yes that is what i was told, no cure. Keep you b.p low and watch ur pulse

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susikelley | @susikelley | Aug 24, 2020
In reply to @colleenyoung "Hi @susikelley, you'll notice that I moved your message to this existing discussion about stiff heart...." + (show)
@colleenyoung

Hi @susikelley, you'll notice that I moved your message to this existing discussion about stiff heart. Click VIEW & REPLY to see all posts of the discussion, including from Dr. Timimi, a cardiologist at Mayo Clinic. In this discussion you can also connect with members @harmonybentley @robschweiger @muriel66 @tcokeefe and others.

Susi, are you still in hospital? What rehab or lifestyle changes have been suggested for you?

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No im no longer in the hospital. I just have good days and bad days, on bad ones i have no energy ,appetite, just want to sleep

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hnutjb | @hnutjb | Jul 25, 2022
In reply to @kanaazpereira "Hi @barbarajane @cynaburst @cynthiamary @lynnkay1956 @medic7054 @evelyn247 @c410djh @jigglejaws94 @thankfulalways @mpeters @sammysky @bjanderson @jwoj @brittalisse @pfazenbaker..." + (show)
@kanaazpereira

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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Hello, I'm Jeff and suffer with Myocardial Bridging since 30 (now 60) and up until this year it was all anxiety and asthma and sleep apnea and GERD .... ridiculous. Recently (last Month) I had a Cardiologist here in Vegas tell me how MB was "OVERDIAGNOSED" and listened to my heart - took BP and cut my lisinopril in half. (end of that doc). Prior to covid I had a Stanford Cardiologist do a cath and said I had MB and sent me home with some medz. No big deal. After moving to Las Vegas I began to study MB and found that it was directly connected to my restrictive cardiomyopathy and found Dr. Ingrid Shnittger at Stanford (right down the hall from the idiot who told me I had MB and prescribed the wrong medz to me.) Ego I guess... all he had to do is refer me down the hall to someone who has been leading the charge for over a decade. Finally get to talk with Dr. Ingrid S. and she got me on the right medication and my BP is perfect since. Still have symptoms and in the process of getting VA to refer me to Stanford or Mayo Clinic (as Mayo is number 1 with 3 other problems I have. I have yet to find a doctor at Mayo Clinic who leads the MB study. Dr. Joanna Gabriel is the go to doc at Cleveland Clinic and as I mentioned Dr Schnittger at Stanford but that's it as far as I can see.
Knowing Mayo Clinic is #2 or #3 in Cardiovascular Diseases I'm sure some doctor there is heading up new patients there. Who might that be? I registered and sent in all my conditions to Mayo Clinic and suppose to hear back from someone there with a plan or something. Anyone know Dr. MB at Mayo Clinic??

Stanford has performed over 350 deroofing surgeries and has lost know one since I last spoke. I think this a good record but compared to what other?? Anyone who can point me to the Mayo MB doctor .... I will send a new heart. 🙂
Jeff

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deb2018 | @deb2018 | Jul 26, 2022

Hi Jeff. My husband just had a heart attack and was diagnosed with a MB. We immediately co ya yes Mayo Clinic in Jacksonville FL. Sent them all his records and never heard from them. We found a doctor in Miami and that’s who we have an appointment to see. Being so close to Stanford and knowing how advanced their research in MB’s and unroofing is I wouldn’t hesitate to stay with them. Probably the best place to be if you have one. For us it’s so far away that it will be a last resort but one we are willing to do if necessary. Cleveland clinic is also top notch and have ongoing research into MB’s. Best of luck in finding a doctor and getting the help you need. Keep us posted

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tcokeefe | @tcokeefe | Jul 29, 2022
In reply to @hopeful33250 "This was an interesting presentation by Dr. Timimi. I so appreciate your posting it @kanaazpereira. I've..." + (show)
@hopeful33250

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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All I can add is that I too wish that there would be some progress with treatment of diastolic heart failure. It seems as if there are not a whole lot of hopeful things on the horizon. I’m 72 so I’m seriously doubting that I’m a candidate for a heart transplant. Plus I’m not sure I would even want to go through that at this stage of my life. But I would love to think I have another 10 years with my family. I hate to sound greedy but I guess I am. Not looking that way at the moment

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 30, 2022
In reply to @tcokeefe "All I can add is that I too wish that there would be some progress with..." + (show)
@tcokeefe

All I can add is that I too wish that there would be some progress with treatment of diastolic heart failure. It seems as if there are not a whole lot of hopeful things on the horizon. I’m 72 so I’m seriously doubting that I’m a candidate for a heart transplant. Plus I’m not sure I would even want to go through that at this stage of my life. But I would love to think I have another 10 years with my family. I hate to sound greedy but I guess I am. Not looking that way at the moment

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Hello @tcokeefe

I appreciate your post about diastolic heart failure. It sounds as if this is a significant problem for you. What is the most difficult symptom you are experiencing right now?

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1 reply
tcokeefe | @tcokeefe | Jul 30, 2022
In reply to @hopeful33250 "Hello @tcokeefe I appreciate your post about diastolic heart failure. It sounds as if this is..." + (show)
@hopeful33250

Hello @tcokeefe

I appreciate your post about diastolic heart failure. It sounds as if this is a significant problem for you. What is the most difficult symptom you are experiencing right now?

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Now and always, shortness of breath number 1. Tiredness and easily exhausted next. I’d like to stay in bed all day but don’t. I do lie (lay? Never could get that one) down frequently during the day.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 30, 2022
In reply to @tcokeefe "Now and always, shortness of breath number 1. Tiredness and easily exhausted next. I’d like to..." + (show)
@tcokeefe

Now and always, shortness of breath number 1. Tiredness and easily exhausted next. I’d like to stay in bed all day but don’t. I do lie (lay? Never could get that one) down frequently during the day.

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I am sorry to hear about your limitations, @tcokeefe. What are you able to do? Have you had any cardio exercise classes through your hospital system?

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1 reply
tcokeefe | @tcokeefe | Jul 30, 2022
In reply to @hopeful33250 "I am sorry to hear about your limitations, @tcokeefe. What are you able to do? Have..." + (show)
@hopeful33250

I am sorry to hear about your limitations, @tcokeefe. What are you able to do? Have you had any cardio exercise classes through your hospital system?

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I have not. I do not go to a local cardiologist. I go to someone at the Cleveland clinic. I’m not sure if I would be entitled to use a class at the local hospital. I guess I should look into that

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retirement75 | @retirement75 | Jul 31, 2022
In reply to @tcokeefe "All I can add is that I too wish that there would be some progress with..." + (show)
@tcokeefe

All I can add is that I too wish that there would be some progress with treatment of diastolic heart failure. It seems as if there are not a whole lot of hopeful things on the horizon. I’m 72 so I’m seriously doubting that I’m a candidate for a heart transplant. Plus I’m not sure I would even want to go through that at this stage of my life. But I would love to think I have another 10 years with my family. I hate to sound greedy but I guess I am. Not looking that way at the moment

Jump to this post

I share your sentiments about wanting more time than less. Disappointed they can’t fix more heart issues and the fact that we’re too old for heart transplant, although don’t know that I would be open to going through that.

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