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Thu, May 28 1:12pm · Repatha as a treatment for high HDL Cholesterol in Heart & Blood Health

I am on my second year of Repatha. It is a fantastic drug and game changer. Amazing how it drops LDL and absolutely no side effects. I give myself shots in alternating thighs and there is virtually no discomfort at all.

Dec 2, 2019 · Pericardial Resection/Window - HFpEF, Pericardial Effusion in Heart & Blood Health

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.

Oct 16, 2019 · Pericardial Resection/Window - HFpEF, Pericardial Effusion in Heart & Blood Health

I should have added that the latest issue (Vol 17, No. 2 2019) of the Mayo Cardiovascular Update features this "Minimal Invasive Pericardiectomy for Treatment of HFpEF." Again, my major objection is that this is not at all a "minimal invasive" procedure. Hopefully, we all can get an update on this procedure from Mayo

Oct 16, 2019 · Pericardial Resection/Window - HFpEF, Pericardial Effusion in Heart & Blood Health

No, Dr Borlaug and I know there are no “next steps” for HFpEF patients such as myself. He is aware I’m seeking treatment through an interatrial cardio implant through Corvia in Germany. I would be most interested in learning how the clinical trial that I was supposed to be in at Mayo is doing and what happened with the other patients he was able to procure. Obviously, I do not want confidential patient information but it would be helpful to me and my local doctor to know if the clinical trial so far has proved successful or has it resulted in complications as I suspect.

Oct 16, 2019 · Pericardial Resection/Window - HFpEF, Pericardial Effusion in Heart & Blood Health

I cancelled my participation in the clinical trial because once I got further into the details, it was going to be anything but "minimally invasive." I found out from one of the surgeons involved that they would now do it by cutting through the chest muscles in addition to putting a drain between my ribs. For this, they would allot one day in the hospital. Mayo then expected me to recover after that in a nearby motel. The time I would have to spend in Rochester would be a week or so … at my expense; and I had the feeling that I wasn't going to be in any shape to recover in a motel, make my way back and forth to Mayo for further testing; then make my way back to FL on my own. I decided if I was going to be a guinea pig, it wasn't going to be on those terms.

Aug 4, 2019 · Pericardial Resection/Window - HFpEF, Pericardial Effusion in Heart & Blood Health

The discussion of pericardial effusion should not have been combined with the discussion of the clinical trial I was involved with for HFpEF. The only commonality was that the percutaneous pericardial resection clinical trial I was involved with was initially going to have a subxiphoid window for drainage purposes when they were going to make the cut through the pericardium. The purpose of making the cut, theoretically, was to relieve wedge pressure in the left ventricle.
I am again requesting the Connect moderator to not combine these two subjects

Aug 3, 2019 · Pericardial Resection/Window - HFpEF, Pericardial Effusion in Heart & Blood Health

I appreciate the effort you made to reference the clinical trial and research paper. However, I already had reviewed both quite a while ago. In fact, I was scheduled to be the first research human being to undergo the procedure but due to scheduling problems in the spring, I was unable to do so. Other developments then led me to not undergo the procedure yet. I am keenly interested in knowing how the first patient did. I believe there will be a second patient this week or next and then a third patient. If Dr. Borlaug is successful with this new clinical trial, it would indeed be a game changer for other patients such as myself with HFpEF. Looking forward to hearing more about this when it is available.

Jul 29, 2019 · Pericardial Resection/Window - HFpEF, Pericardial Effusion in Heart & Blood Health

Wondering if you had an opportunity to get an update yet?