What Diastolic Dysfunction Feels Like

Well, I was tired, fatigued, had trouble breathing, couldn’t catch my breath. For me this all showed up after a bad bout of COVID. Pulmonologists thought it was cardiac. Cardiologists thought it was pulmonary. Some docs and I thought it was dysautonomia and long Covid. My cardiologist suggested MAYO Rochester for additional testing that wasn’t available elsewhere. That testing yielded a definitive diagnosis of HFpEF (diastolic dysfunction). I started on Jardiance and that was initially very helpful but soon waned in effectiveness. I was lucky enough to be enrolled in the REIMAGINE-HFpEF surgical study and that has been a game changer for me. Off to the gym in a bit a couple hour workout and then yard work.

@altilla --- What were your BP numbers (symptoms) that led to your diagnosis? I have had "wide pulse pressure" where my diastolic reading was 60+ difference below/from the systolic reading. I believe they also call this diastolic hypotension in some cases. I'm curious what you learned about this from your process.

Hi carlcumer
Everything you're describing sounds typical for diastolic dysfunction with HFpEF and pulmonary hypertension. I share your symptoms and discomfort. Right now I am struggling to get my BP under control with 100mg of Losartan. So far, it doesn't seem to be effective after 3 weeks but I have read that it takes about 6 weeks to reach optimum effect. Also on Jardiance for the heart failure but also too soon to know if that will work because it's only been a month.
A woman on this thread had a surgical procedure as part of a study. It's called the pericardial cut and she says she's feels so much better after the procedure. I have written to the company that makes the surgical catheter used in the operation to see if they know when it will be available for everyone. If I hear anything, I will post it here.
Meanwhile, don't push yourself. Rest. Keep your fingers crossed.

@marcwall When diagnosed I was on Losartan, Amlodipine and hydrochlorothiazide for BP. My numbers were not outrageous. None of the doc mentioned HFpEF until my RH Cath with exercise showed wedge pressure numbers that are definitive for HFpEF.

@bch72 @marcwall I am probably the person you are talking about except I’m not a woman. The PERICUT device is the catheter you mentioned. The initial in human use trial is still underway and enrollment in the study is still open if you are interested. Until the device is approved by the FDA it won’t available except through the study. Information including eligibility and disqualifying issues and a contact number can be found at the link below.
https://www.mayo.edu/research/clinical-trials/cls-20575995

@carculmer
What is your diagnosis? Do you have heart failure, low EF?

Medication and your heart itself can cause blood pressure issues. But do you have heart failure? What is your EF. The symptoms you described can't and should not be diagnosed by us on MCC. You need a good cardiologist.

Talk to your doctors about an echocardiogram to test for ejection fraction and functions of heart. Are you on BP medications. In today's world Jardiance and Tadafil are now give to improve heart as well as initial intent of medications. I am on both.

I think you should talk to your doctors about Tadafil before stopping. If Tadiful was given to help remodel heart it will take a long time for that to show a benefit. You have a lot of test that can be done to get a more clearer diagnosis of you symptoms and the appropriate treatments.