Pericardial Resection/Window - HFpEF, Pericardial Effusion

Posted by Rob Schweiger @robschweiger, Jul 3, 2019

Mayo has just begun a clinical trial involving percutaneous pericardial resection … in effect, making a longitudinal cut through the chest muscle and pericardium in order to possibly provide relief to a hard, stiff heart muscle. This will occur in the cardio cath lab at the St. Mary’s campus. I’m interested in hearing from anyone who has undergone this or a similar procedure. Also interested in hearing from anyone with HFpEF that has no “usual” symptoms other than inability to exercise and major exhaustion

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

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

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Hi @robschweiger,

Thank you for all the support and information you are offering – I sincerely appreciate your making Connect members aware of the clinical trial led by Dr. Borlaug. I think I can understand your objection with regard to the merging of the two discussions. Since you remarked, "The discussion of pericardial effusion should not have been combined with the discussion of the clinical trial I was involved with for HFpEF,” I hope I can offer some clarification as to my reasons for combining the two threads.

Both procedures – percutaneous pericardial resection and pericardial window – effectively relieve pressure from around the heart, whether that pressure is caused by fluid or the heart muscle (stiff). Hence, rather than discern differences between symptoms and conditions, I noted the similarities between the two procedures – albeit percutaneous pericardial resection is yet an “experimental” therapy.

Most importantly, I was hoping to ‘connect’ you with fellow members – as you mentioned in the very first post of this discussion – "I’m interested in hearing from anyone who has undergone this or a similar procedure.”

Mayo Clinic Connect is a patient-to-patient community – the most important ingredient of Connect is its members, like you. It is not designed to be a community for medical experts, but is a place to learn from all your shared experiences, insights, suggestions, and tips. On the other hand, you can view Mayo Clinic experts talking about various health conditions, treatments, published studies, etc. by visiting the Connect Pages at https://connect.mayoclinic.org/pages/

I want to assure you that my intention is only to help, not dictate or influence your participation in any way. I just hope to help you reach as many people as possible. Should you have further questions, feel free to let me know and I will do my best to address your concerns.
I look forward to your continued participation on Connect.

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Hi @robschweiger,

I was wondering how you’re doing – did you undergo the procedure?

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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.

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@robschweiger

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.

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I’m truly sorry to hear that, @robschweiger. May I ask if your doctor has provided any “next steps”? How are you coping with HFpEF at present?

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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.

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@robschweiger

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.

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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

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Just looking for conversation.

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@12regina12

Just looking for conversation.

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Hi @12regina12 and Welcome to Connect. I moved your message and combined it with this existing discussion to help you connect with others talking about HFpEF. If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

You may also be interested in this video and discussion.
Confused about Stiff Heart, Diastolic Heart Failure, or HFpEF? https://connect.mayoclinic.org/discussion/confused-about-stiff-heart-diastolic-heart-failure-or-hfpef/

Regina, what other conditions are you managing along with HFpEF?

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@colleenyoung

Hi @12regina12 and Welcome to Connect. I moved your message and combined it with this existing discussion to help you connect with others talking about HFpEF. If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

You may also be interested in this video and discussion.
Confused about Stiff Heart, Diastolic Heart Failure, or HFpEF? https://connect.mayoclinic.org/discussion/confused-about-stiff-heart-diastolic-heart-failure-or-hfpef/

Regina, what other conditions are you managing along with HFpEF?

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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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