← Return to Pericardial Resection/Window - HFpEF, Pericardial Effusion

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@bjanderson

Hi Regina. I was diagnosed in January of 2015. I now have chronic Afib and it is being managed by medication. I still am able to walk most days and feel pretty darn good. How about you?

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Replies to "Hi Regina. I was diagnosed in January of 2015. I now have chronic Afib and it..."

Regina, in response to your email, I am fortunate in that I only suffer from exhaustion and inability to do meaningful exercise with my HFpEF. I have normal BP, no swollen ankles, take no meds, maintained my low BMI, etc. What I have discovered since being diagnosed by Mayo and seeing my life go from one of regular long distance running and biking to barely having the energy to do a treadmill walk is that patients need to learn everything they can about alternatives available to them. It is an established fact that there are no medications, procedures, or protocols to lessen or resolve HFpEF. Trying to get into clinical trials for me has been one frustrating experience after another of being told I don't qualify as I am a "unique" patient. All that means is that I don't fall into the pigeon holes they want patients to fit into in order for them to meet the criteria set by the companies that are paying for the trials. In the meantime, I have become my own cardio researcher, subscribe to over a dozen journals, and follow up on any article that seems to offer some new thoughts. I have met with leading HFpEF researchers around the country. My next step is I'm paying 100% of the cost of getting a Corvia IASD implant in Germany in January inasmuch as I believe that either Corvia or V-Wave may offer some relief to my HFpEF exhaustion. I STILL have not heard anything further about the Mayo percutaneous pericardial trial in which I was originally suppose to be the first patient. I backed out of that trial when Mayo changed the protocol. Even thought they STILL call it "minimally invasive" (see Mayo's Cardiovascular Update, Vol l7 No. 2 2019), cutting through one's chest muscles and inserting a drain into the lungs is anything but "minimally invasive." Unlike you, I have not yet developed Afib, but my suggestion to you is to research the hell out of the medication prescribed to you and see what alternatives exist. Also, do not assume that just because you are seeing a cardiologist that your physician is knowledgeable enough to treat your HFpEF. Most know about cardiovascular disease; not HFpEF.