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

Hi,
I am a 50y female and have been diagnosed with Hfpef with ejection fraction above 50% a year ago . In July 2024, my echo showed grade 2 diastolic dysfunction, moderate MR and significant water retention. My symptoms were extreme exhaustion after a long flight and intolerance to exercise which did not get better in a week and lead me to my cardiologist. For background, in December 2023, I was experiencing high BP, headache, chest discomfort and echo showed mild MR and was prescribed with (lisnopril 10 mg). In 2018, echo (done due to chest pain and discomfort) showed diastolic dysfunction and hypertension ( BP medication was. prescribed and was stopped in few months due to low BP) and in 2007, right bundle branch block shown in echo done due to occasional chest pain and palpitations with other symptoms (no medicine was prescribed back in 2007). I have been very healthy otherwise with a habit of eating healthy, daily walk and yoga. Before July 2024, my daily routine was never impacted due to all the episodes above. My daily activities have been greatly compromised since July 2024 and it took almost an year to get used to new lifestyle ( to slow down when walk or talk ) have proper medication which keep my BP in check ( is not super low anymore). My struggle since July 2024 have been a very low BP, dizziness, extreme tiredness, experiencing symptoms even with little activities in daily routine , 0 exercise tolerance. The issue was with the medication prescribed before would bring the BP down ( systolic in 90s and diastolic in 40s). After trying different sets of heart medication, now since past three months I have had consistent vitals with (eplerenone 50 mg and Dapagliflozin 5 mg medication) and my BP now stays in 100s/60s consistently. However, due to 0 activity or exercise and with some water retention every now and then, my weight have gradually increased by 15 pounds in past one year. I am still struggling to get a routine of daily exercise ( specially in summer /outdoors as heat and humid trigger my symptoms shortness of breath, palpitations, nausea, dizziness, headache, chest pain and discomfort etc). Since I am feeling a bit better now with medication, my goal for this months is to get some indoor exercise in routine. My energy level changes drastically during the day from feeling perfectly fine to extremely tired and catching my breath. I am learning the needs of my new/ required life style. Getting a habit of slowing down. I am not sure about the stage I am currently in and what is going to be my life expectancy. I am happy to join this group and looking forward to receiving insights from other group members.

I have had congestive heart failure condition for at least 6 months. My a fib really ramped up at that time for a month or more along with edema, breathing issues, low exercise tolerance. My cardioligst suggested testing for these issues, so after 2 months of testing they discovered Amyloidsis. I am on some medication for this, Amvuttrato help stop the further progression of the staffing. I would urge that anyone with a stiffened heart look into testing for Amyloidsis!

I, too, have been diagnosed with HFpEF. My latest echo says "severe Grade 3 diastolic dysfunction". As others have said, I have edema, breathing issues, and low exercise tolerance. Along with this, I have AFib with RVR (rapid ventricular response). My EP has scheduled an ablation. I had hoped that the ablation will alleviate my shortness of breath. Now, however, I am concerned that it will continue due to the HFpEF. My cardiologist has not suggested testing for Amyloidsis. I am going to ask him when I see him. Thank you for the suggestion.

I was recently diagnosed with HFpEF. I have had Drs mention some stiffness in the heart but they always said it was normal and acted as it was nothing to worry about. I recently had CABG surgery and still have too much fluid on me. My new cardiologist named and explained HFpEF to me. Also explained that had to do with the slow removal of the fluid. I’m getting the impression that there isn’t very much that can be done. Diet, exercise, and some medication may slow the progression but nothing will stop it. I’m hoping to learn more from others who are experiencing this condition.

Well after much searching and testing I was referred to the Mayo. The thoughts were that I might have dysautonomia from Covid. However, further testing that was not available in North Dakota revealed that I have HFePF and was put on Jardiance. I’m 5’9”, weigh 170. My cardiologists were surprised. I am on blood pressure meds. Further testing revealed I also have post Covid adult onset asthma. I’m on Symbicort SMART therapy for that.

Trying to sort all this out. The Jardiance helps. The Symbicort helps. Most days are ok but 1 to 2 days a week suck. When the asthma and the heart are both acting up it’s flat out hard to get oxygen.

Curious about how other people cope with the HFePF. Also curious about others who have both asthma and HFePF deal with that.

@kanaazpereira
I there @tinheart here. At the moment I am trying to figure out why I can't get an answer about random episodes of brain fog, confusion and inability to concentrate. I have Stiff heart, HFpEF, pulmonary hypertension and on diuretics.
I have discussed my situation with multiple practitioners and always leave the office without conclusive advice. I'm sure I'm not the only one!
Feeling like a tin can getting kicked around an alley!

@tinheart

If you have stiff heart syndrome (Cardiac Amyloidosis) then your heart is getting stiff on the outside and your brain is not getting adequate blood supply which can cause ischemic strokes. I would suggest getting a brain MRI to see how many ischemic strokes your experiencing. I have HOCM and also have stiff heart syndrome. I'm told that there is no medication or surgery that will correct stiff heart syndrome.
Jim

@tinheart, I like your online name. It's so descriptive of your condition.
I have a form of "stiff heart" from my hypertrophic cardiomyopathy, but I thought I would stick my nose in over here just to welcome you to Mayo Clinic Connect, and let you know you are not alone. Stiff heart is not a cool diagnosis.
I found this information below online from AI, and thought it was interesting. Take a look:

Heart failure with preserved ejection fraction (HFpEF) can lead to cognitive issues, often referred to as "brain fog," due to reduced blood flow to the brain and other related factors. This condition is linked to cognitive decline, affecting memory and thinking abilities.
mdsearchlight.com okheart.com
Understanding HFpEF and Its Impact on Cognitive Function
What is HFpEF?
Heart Failure with Preserved Ejection Fraction (HFpEF) occurs when the heart's left ventricle retains a normal ejection fraction but becomes stiff and does not relax properly. This condition leads to poor filling of the heart and can cause symptoms like fatigue and shortness of breath.

Connection Between HFpEF and Cognitive Decline
HFpEF is linked to cognitive impairment, often referred to as "brain fog." This cognitive decline can manifest as difficulties with memory, language, and executive function. The relationship between heart health and brain health is significant, as reduced blood flow from heart issues can affect brain function.

Mechanisms Behind Cognitive Impairment
Reduced Blood Flow: Stiff arteries and heart failure can lower blood supply to the brain, increasing the risk of strokes and cognitive issues.
Calcium Leaks: Research indicates that calcium leaks in brain neurons, associated with heart failure, may contribute to cognitive decline. This leak can activate enzymes linked to Alzheimer’s disease and disrupt neuron signaling.
Chronic Conditions: HFpEF often coexists with other health issues like hypertension and diabetes, which can further complicate cognitive health.
Managing Risks
Improving cardiovascular health through lifestyle changes, such as regular exercise and managing blood pressure, can help reduce the risk of cognitive decline associated with HFpEF. Early intervention and treatment of heart conditions are crucial for preserving brain function.

Q: Nobody wants to feel like a 'tin can getting kicked around an alley!"
Have you been able to find a cardiologist who you feel listens to you?
Have you had a second opinion to help you be certain you are on the right path?
Just out of curiosity, and based only on my experience with the Mayo Clinic HCM Department, has the drug Jardiance ever been mentioned?

@karukgirl
Thanks for the welcome and the information. I am determined to figure out what is going on with the brain fog. Luckily it is not all the time. I am on supplementary oxygen which I started after having pulmonary emboli 3 years ago. Pulmonary hypertension and HFpEF were diagnosed by CPET 2 years ago at MGH in Boston.

I do have a new cardiologist locally. I really like him so far. He recently told me to get off Lasix for a few days to see if am not tolerating it well. I do take Jardiance.
The "kick the can" is an analogy to the many doctors I've seen without a lot of clear direction. It can be exhausting. When you're a can you get all dented up! LOL

@jachrist
Hi Jim
My PCP sent me for a brain MRI. So far nothing much showed. I also a had bilateral Carotid Artery Duplex done with no findings. As far as Stiff Heart, I was told to stay active.
Mary