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

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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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@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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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.

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I have been diagnosed with heart failure with preserved ejection fraction, HFpEF. So far, no major problems other than a persistent cough. I've had chest x-rays, CT scans, three endoscopies, blood tests. Nothing to show where the cough is coming from. No allergies, virus or cancer. Doctors' consensus is that it may be related to HFpEF. Anyone have comments on this? Thanks!

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@john6stodolka

I have been diagnosed with heart failure with preserved ejection fraction, HFpEF. So far, no major problems other than a persistent cough. I've had chest x-rays, CT scans, three endoscopies, blood tests. Nothing to show where the cough is coming from. No allergies, virus or cancer. Doctors' consensus is that it may be related to HFpEF. Anyone have comments on this? Thanks!

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Hi @john6stodolka I see you joined Connect about a year ago, but this is your first post. I'd like to officially welcome you to Connect and thanks for joining the conversation. You will see I moved your discussion to an active post about heart failure with preserved ejection fraction, HFpEF. The benefit in doing this means you can connect with other members who are experiencing the same health concerns as you are and discuss your individual experiences. I would like to invite @robschweiger, @jakedduck1, @bjanderson, @ninimurphy, @predictable, @thankful, @hopeful33250 and @johnbishop to join once again and discuss any updates they may have or just to welcome you.

One of our mentors John also offered some reference information from Mayo Clinic that might be helpful in your search for answers.
Confused about Stiff Heart, Diastolic Heart Failure, or HFpEF?: https://connect.mayoclinic.org/discussion/confused-about-stiff-heart-diastolic-heart-failure-or-hfpef/
Video Q&A about Advancements in Cardiology and What They Mean for Patients: https://connect.mayoclinic.org/webinar/video-qa-about-advancements-in-cardiology-and-what-they-mean-for-patients/

The first link that has a presentation by Dr. Timimi does mention a cough as a symptom. When did you first notice the cough? Did s/he suggest anything for relief?

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@john6stodolka

I have been diagnosed with heart failure with preserved ejection fraction, HFpEF. So far, no major problems other than a persistent cough. I've had chest x-rays, CT scans, three endoscopies, blood tests. Nothing to show where the cough is coming from. No allergies, virus or cancer. Doctors' consensus is that it may be related to HFpEF. Anyone have comments on this? Thanks!

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I have exactly the same issue. I have had a persistent cough for a few years now, yet they seem to think it’s not caused by my diastolic heart failure with preserved ejection. I have had a chest x-ray that was clear. I went to an ENT who thinks it might be silent reflux and I’ve been taking Pepcid for many months with no change at all in the cough. I really wonder if it isn’t a side effect of the blood pressure medication, my first one was lisinopril which made me cough like crazy. I switched then to losartan , and then eventually to valsartan. Although the cough was never as bad as on lisinopril, it has remained ever since.

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@amandaburnett

Hi @john6stodolka I see you joined Connect about a year ago, but this is your first post. I'd like to officially welcome you to Connect and thanks for joining the conversation. You will see I moved your discussion to an active post about heart failure with preserved ejection fraction, HFpEF. The benefit in doing this means you can connect with other members who are experiencing the same health concerns as you are and discuss your individual experiences. I would like to invite @robschweiger, @jakedduck1, @bjanderson, @ninimurphy, @predictable, @thankful, @hopeful33250 and @johnbishop to join once again and discuss any updates they may have or just to welcome you.

One of our mentors John also offered some reference information from Mayo Clinic that might be helpful in your search for answers.
Confused about Stiff Heart, Diastolic Heart Failure, or HFpEF?: https://connect.mayoclinic.org/discussion/confused-about-stiff-heart-diastolic-heart-failure-or-hfpef/
Video Q&A about Advancements in Cardiology and What They Mean for Patients: https://connect.mayoclinic.org/webinar/video-qa-about-advancements-in-cardiology-and-what-they-mean-for-patients/

The first link that has a presentation by Dr. Timimi does mention a cough as a symptom. When did you first notice the cough? Did s/he suggest anything for relief?

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Hello @john6stodolka

I'm glad that you posted about this. I have a similar diagnosis as you and I also have a chronic dry cough. One of the groups of meds that are often used to treat this type of heart problem are called Ace Inhibitors. Perhaps you are taking one of those? I take Vasoctech which is an ACE Inhibitor. I've gotten used to the cough as I know the medication works really well to ease the burden on the heart. If you are comfortable sharing more information, what meds are you currently taking?

Here is some information from Mayo's website where you can see a list of the ACE Inhitibors and see if your med is one of them. As you can see, a cough is the first side-effect listed.
https://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/ace-inhibitors/art-20047480
Will you post again?

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@hopeful33250

Hello @john6stodolka

I'm glad that you posted about this. I have a similar diagnosis as you and I also have a chronic dry cough. One of the groups of meds that are often used to treat this type of heart problem are called Ace Inhibitors. Perhaps you are taking one of those? I take Vasoctech which is an ACE Inhibitor. I've gotten used to the cough as I know the medication works really well to ease the burden on the heart. If you are comfortable sharing more information, what meds are you currently taking?

Here is some information from Mayo's website where you can see a list of the ACE Inhitibors and see if your med is one of them. As you can see, a cough is the first side-effect listed.
https://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/ace-inhibitors/art-20047480
Will you post again?

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Thanks for the reply! I am not taking anything other than L-Argenine, which was suggested by a cardiologist. The cough is a mystery. What's really weird is that I cough every time I bend over. (Other times, also.) I can get something off the floor or tie my shoes and invariably cough. Does your cough react similarly? Thanks.

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