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

Ive had HF for almost 8 years, my EF was 20 and at last check i was 49. I had an aortic valve replaced, ICD, meds that I responded well to, diet and exercise. And good dr. I worried about my EF but that doesn't help. I would suggest people focus on how you feel and let the dr. Worry about the numbers

I have combined systolic/diastolic chf newly diagnosed in July with emergency respiratory failure and pneumonia. Have mitral regurgitation for 2 years as well and now experiencing dizziness, very low blood pressures and wondering if it’s from my new meds or the new conditions. Anyone with experience in this area who can share their thoughts, experiences? Thanks in advance!

I appreciate Dr. Timimi's explanation. I have a normal EF over 60, but my doctor said I have Diastolic Heart Failure. I had never heard of this before. He has recommended some of the newer meds on the market designed for other conditions (Jardiance, for example). However, my cost is over $1000 per month, and I can't do that. Is there anything else I can do for DHF? I am short of breath on exertion, but I don't know if it is due to the DHF or something else. Like dcain01, I would appreciate hearing about someone's experience with this and what their limitations are and what can be done to help. Thank you!

Hello everyone. I was just diagnosed this week and had to travel 2.5 hours to see a cardiologist. I live in a very rural place. It was worth the drive. I like the Cardiologist a lot. It did upset me bc I had never heard of it and the words “heart failure”…. That night I did some reading online and really got upset. The Mayo Clinic had lots of information, but most of it was kind of disturbing as far as a prognosis. When I talked to the nurse on the phone at the cardiologist office the next day, I mentioned that I was upset by what I was reading online. She said stop reading things online! She continued by saying that every person is different and that what I’m reading online is the worst case scenario. Did your doctor talk to you about prognosis when you first went in? I know that’s kind of a negative question but it’s the only thing that’s been on my mind all week and I’m feeling so anxious about it. Thank you for sharing anything that you can.

Hi
I understand that 'heart failure' can point to a meriad of things wrong with the heart.

It doesn't mean you will die next week. It means you will need meds to control the result of your prognosis.

'heart failure' was never uttered but I have to have a CCB Diltiazem 120mg CD low dose morning to control my Day Heart Rate.

Listen, ask questuins.. The research companies like RADCLIFFE UK is worth asking them.

Also you have UK Heart Foundation to ask and this forum.

Do take care.

JOY. (tuckie)

Hi
What are your meds?
Metopolol was stopped for the 2nd time because of breathless on exertion. I said NO at the 2nd try. The 24hr Heart Monitor gave me pauses at night on my normal 47avg bpm.

It should not be used in asthmatics or probably folks who have eczena.

I was stopped on ACE Inhibrace earlier and Lo.............. took out proteins.

I have AF rapid and persistent.

cheri JOY. (Tuckie)

Thanks for the video. I was diagnosed with HFpEF last month and have only had my initial appointment with the cardiologist. I live in a rural area and I have to drive 250 miles to the specialist. I’m very concerned and my anxiety rises the more I read about it. I’d sure like to connect with other people who have this same diagnosis. Thanks.

Sorry, Tuckie - most of my email landed in "spam", and I did not realize you had replied. I am on Metopolol 50 mg (twice a day). I am also on Irbesartan. My BP is very stable. However, recently my HR has been elevated. I am also in persistent rapid AF. They had me on Flecainide, which didn't help. Now I am on Propafenone three times a day - still in AF.

I find the diagnosis of "diastolic heart failure" very disturbing and would very much like to hear from others with this diagnosis. Until my doctor (actually his PA) told me I had it, I had never heard of Diastolic Heart Failure! Like Louisy, I am very concerned and anxious. With a high EF, I though HF was one thing I did not have to be concerned about. I don't have any idea of a prognosis or what can be done about it.

I am very breathless after even mild exertion. I am 'assuming' it is because of the AF, elevated HR, and HFpEF. I appreciate all of you who share your stories.

Hi
Demand a 24hr Heart Monitor.
This is a true report of your status with your meds.
Metapolol was the culprit in my case and I had no back up that a former doctor's warning in taking it.
I suffered like a zombie for 1 year 5 months!
No one listened and I had said no to it.
Pauses at night too.
Bisoprolol is a better med for AF patients too - said the hospital heart specialist.
Demand to change.
I was OK on 49.75 in 2008 before Stroke with AF but doubling it - couldn't breathe. The specialist said just 10 bpm over 100 will do damage to your heart. X 60 x 60 x 24 for 1 day! I was 86 over!
With Bisoprolol 56 over.
Can you imagine what this 'stuff' does to your heart.
Changing to a Calcium Channel Blocker was the answer.
Do get on to it and get some interested person to look after YOU.

Be the CEO to your health. I did eventually.
vheri JOY (tuckie)

I do have this diagnosis and have received no education about it. What does it mean, “ incredibly salt sensitive”? I don’t take in much salt, and I am on on Torsemide. I’m not bloated. Where can I find more information about this?

I’m also SOB which my cardiologist insists is a lung problem and my pulmonologist insists is a heart problem 🤷‍♀️ I don’t like being stuck in the middle. However listening to this video and hearing how my heart is becoming a tin can, it would make sense oxygen couldn’t easily cross that barrier. Is my observation reasonable? And do others with this Dx also experience SOB?