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

Message your Dr and ask what your prognosis is. I read that info too. When I asked Dr, he believes I have a mild case and thinks it will stay that way.

Hi. I know how frustrating and scary you feel. I just got diagnosed three weeks ago, but the doctor didn’t give me much information at that visit. She started me on Jardiance for the swelling in my feet and ankles. It’s super expensive, but the cardiology clinic has a program where they will cover the cost depending on your income. I have a follow up appointment in a few weeks, but in the meantime, I’m reading about this online and it does scare me. I’m kind of upset that they didn’t give me more information about this at that visit. I probably shouldn’t have looked it up online but every article I read pretty much said the same thing and I didn’t like any of it. Did they start you on any meds? What exactly did they say your diagnosis was? Mine is heart failure with preserved ejection fraction or HFpEF. I have to drive 2 1/2 hours to the cardiologist. If they were closer, I’d be insisting on another appointment right away so I can ask all my questions. I started a list. Let me know how it’s going for you. I’m curious what meds everybody are taking And what the doctors have been telling people. Sending a hug your way.

Thanks I will call and ask. The thing that bothered me was when I read the docs MyChart note from our visit. She made a comment “Will start Jardiance to help with edema and reduce hospitalizations.” She said REDUCE; not “prevent”. This is what really got me going. I’ll message them in the morning and find out what she’s thinking. It’s downright cruel to leave people hanging with no information after receiving this kind of diagnosis. And having to wait another 5 weeks to find out what to expect and what the prognosis is! And then they say “don’t read what’s on the internet!” What else would they suggest? I’m disappointed in the lack of understanding what it’s like when you receive a diagnosis with such a disturbing name: Heart Failure. It scares the heck out of me. Thanks for replying.

Thank you! I have been on Metapolol for years. According to my Apple watch, my resting heart rate has significantly increased over the last week. Since that was about the time I started propafenone, I thought that might be the culprit. However, maybe it is the Metapolol. My cardiologist wants me to add Jardiance, but I just don't want to add anything else. I will contact my cardiologist and my EP. Thanks!

Yes! It is scary and unnerving to go through this experience and so frustrating the current medical state has whittled away compassion, education and a supportive environment. But insurance doesn’t pay for those things.
I was glad to discover this online support- eases the journey to know you’re not alone.

I had my diagnostic last September. I have medication : jardiance, Atacand, Aldactone and others for diabète, gout, hypthyroidie.
I eat reduced in salt, sugar, animal product, fat dayries, process food. I walk 2 to 3 times a day and Ihave a physical program from a cardiac kinésiologue from at hospital.
My cardiologists told me good exercices for are very very important, as medication is. This sickness could bring you others problems. So. Eat well, moove, sleep, be happy. My cardiologist told me I could leave very old, like my mom and dad, 93. I feel progressively better and better sine September. I could run a little now. But exercices with my arms, still very hard. So you need help to know what to do or not. Stay confidente, try this.

Thank you so much. It was especially comforting to hear that your cardiologist said you could even live as long as your parents. I really need to increase my exercise routine. You’re doing great with your routine! You inspired me. Keep it up and thanks again!

Thanks for the comment. It seems like it’s getting worse as doctors are getting more pressure to see more patients. With all the technology available to help provide communication between patients and doctors, you’d think they could at least follow up with some printed information on the diagnosis through MyChart. It would take less than a few minutes. The support staff could provide it. Just something for patient education between visits especially when there are 5-6 weeks between appointments. I’m just frustrated and needed to vent. Thanks for replying. Be well!

I was also diagnosed with HFpEF a couple of years ago. I am a previously active 75 year old female who lives on a farm in southern Indiana and is not used to a sedate life which is what I am facing. I had a septal myectomy in 2020 for HOCM at Cleveland Clinic and thought that would take care of it and make me feel better. That is not the case. I am very exercise intolerant now and must pace myself. It agree that it is a very frustrating diagnosis. There are some new treatments in clinical reviews now for this but other than medications, there is no direct help. My cardiologist who is very experienced is also frustrated. Many treatments for reduced EF are available including helpful devices that are not available for HFpEF right now if one's EF is normal. I did cardiac rehab last winter after I had 3 stents and found their methodology of exercise for me did not work. It was a very strict program where everyone did the exact same program no matter what different heart conditions people had. I kept telling them the program made me dizzy and the nurse just kept saying "drink more water". Cardio exertion makes one feel poorly with HFpEF. I wish the cardio rehab folks can come up with a more appropriate way to exercise safely and be more flexible and creative. I take a lot of meds now but still feel poorly. I hope something can happen in the near future but with all the funding cuts for medical research, I am concerned many options will be put on the back burner.
Good luck to all who are dealing with this. We are in this together.

Hi and thanks for sharing. It was a relief to hear you say “a couple of years ago “ even tho that isn’t the focus of your comments. I am 70 and also live on a farm (in NE Oregon)! I was diagnosed last month and feel shocked and confused. If I read information online I get very anxious. I’m told not to read it but it’s too late for that. I still don’t know the extent of my situation. I have a follow up appointment in a few weeks and have a LOT of questions! My EF is normal too and I also have exercise intolerance. Yes, very frustrating. It’s pretty rural here so I have to drive 2.5 hours to a cardiologist. If it wasn’t so far away I’d be insisting on a follow up in 2 weeks. But not the case. Sorry to hear the cardiac rehab didn’t work out. I have considered trying that. It’s only 1 hour away. I can easily do that. You mentioned an additional cardiac issue but I’m not familiar with it. Is that part of why you are on several meds? I was just put on Jardiance. And she doubled my B/P med. otherwise I’m just supposed to check daily B/P and weight until I see her again. I also feel like my stamina has fallen in the dumper. It’s hard just taking the dogs for a romp when I used to do it twice a day not that long ago. I read about some trials to make a dent in this condition. The researchers expressed frustration too that they’ve had little luck so far. I was glad to hear you say they’re making progress. Take care and keepep in touch. I am so interested in hearing how other people have done especially if they’ve had this for a long time. If you have any resources I’m sure there are folks here (including me) who would appreciate anything current. Take care and thanks again.