Rob Schweiger
@robschweiger
@robschweiger
Posts: 17
Joined: Jun 29, 2019
Pericardial Resection/Window - HFpEF, Pericardial Effusion
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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bjanderson
@bjanderson
@bjanderson
Posts: 39
Joined: Jun 29, 2017
I have hf with pef and no usual symptoms. I try to walk 4-5 times per week. I walk 1 1/2 miles in 30 minutes. I am experiencing some tiredness but just upped metoprolol and that seems to have increased fatigue. I am in Afib all the time and the Drs. are controlling the rate with meds. I have not heard of this clinical trial. Sure hope it works.
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Rob Schweiger
@robschweiger
@robschweiger
Posts: 17
Joined: Jun 29, 2019
@happyheart13 Just wondering how they diagnose heart failure with preserved ejection fraction. My EF is always normal though I have stenosis and will need surgery at some point
Dr Borlaug at the Mayo cardio cath lab diagnosed it … involves measuring wedge pressure among other factors. Use to be called diastolic HF. Absolutely no effective treatment for it, although I am hopeful that CCM (cardiac contractility modulation devices) such as Impulse Dynamics’ Optimizer might finally be further developed to provide relief for fellow sufferers
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Rob Schweiger
@robschweiger
@robschweiger
Posts: 17
Joined: Jun 29, 2019
@bjanderson I have hf with pef and no usual symptoms. I try to walk 4-5 times per week. I walk 1 1/2 miles in 30 minutes. I am experiencing some tiredness but just upped metoprolol and that seems to have increased fatigue. I am in Afib all the time and the Drs. are controlling the rate with meds. I have not heard of this clinical trial. Sure hope it works.
I was able to manage 3 miles in one hour but my fatigue level just was ruining my existence so I have cut back to occasional exercise instead. I’ve been fortunate not to get afib (yet). The clinical trial had now been posted online.
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Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7203
Joined: Jul 23, 2014
Here is the link to the clinical study, @robschweiger refers to.
– A Study of Minimally Invasive Pericardiotomy as a New Treatment for Heart Failure https://www.mayo.edu/research/clinical-trials/cls-20455324
Are you considering taking part in the study, Rob?
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Rob Schweiger
@robschweiger
@robschweiger
Posts: 17
Joined: Jun 29, 2019
@colleenyoung Here is the link to the clinical study, @robschweiger refers to.
– A Study of Minimally Invasive Pericardiotomy as a New Treatment for Heart Failure https://www.mayo.edu/research/clinical-trials/cls-20455324
Are you considering taking part in the study, Rob?
Yes, I was originally scheduled to be the first patient but scheduling delays changed that. I believe I am now scheduled to be the third patient in late August. However, once again, I have not had all the details firmed up for me and the full procedure has still not been explained to me and I have more questions needing answers. I have been fortunate in that Dr. Borlaug has been very considerate in communicating with me often since he first diagnosed me four years ago and Dr. Rowse took the time to call me and answer several questions I had. I am hoping to speak with the clinical trial coordinator next week, Laura Kveene, whom has been very helpful, in order to answer my remaining questions.
REPLY
ninimurphy
@ninimurphy
@ninimurphy
Posts: 23
Joined: Feb 09, 2017
@robschweiger Yes, I was originally scheduled to be the first patient but scheduling delays changed that. I believe I am now scheduled to be the third patient in late August. However, once again, I have not had all the details firmed up for me and the full procedure has still not been explained to me and I have more questions needing answers. I have been fortunate in that Dr. Borlaug has been very considerate in communicating with me often since he first diagnosed me four years ago and Dr. Rowse took the time to call me and answer several questions I had. I am hoping to speak with the clinical trial coordinator next week, Laura Kveene, whom has been very helpful, in order to answer my remaining questions.
Wow – Good Luck Rob ! I hope trial works for you. I suffer from diastolic hf, so I will be following your results. Keep you in my prayers 🙏🏻
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ninimurphy
@ninimurphy
@ninimurphy
Posts: 23
Joined: Feb 09, 2017
@colleenyoung Here is the link to the clinical study, @robschweiger refers to.
– A Study of Minimally Invasive Pericardiotomy as a New Treatment for Heart Failure https://www.mayo.edu/research/clinical-trials/cls-20455324
Are you considering taking part in the study, Rob?
Hi Colleen! I checked the link you sent, not much information about procedure, so lots of questions about this trial.
Would love to be added to this group
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Rob Schweiger
@robschweiger
@robschweiger
Posts: 17
Joined: Jun 29, 2019
@ninimurphy Wow – Good Luck Rob ! I hope trial works for you. I suffer from diastolic hf, so I will be following your results. Keep you in my prayers 🙏🏻
I had to withdraw from this group for other health reasons, but encourage other people with HFpEF to apply. Contact the. Clinical coordinator Laura Kveene at 507-422-5241 to try to become enrolled. The doctor on this project is Dr. Barry Borlaug, one of the world’s leaders in this field of research.
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Rob Schweiger
@robschweiger
@robschweiger
Posts: 17
Joined: Jun 29, 2019
@ninimurphy Hi Colleen! I checked the link you sent, not much information about procedure, so lots of questions about this trial.
Would love to be added to this group
See the latest posting I put on this site along with the contact information to become enrolled
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7203
Joined: Jul 23, 2014
@ninimurphy Hi Colleen! I checked the link you sent, not much information about procedure, so lots of questions about this trial.
Would love to be added to this group
Hi @ninimurphy, you're right. The clinical trial link provides only the basic information. As Rob suggests, you can contact the clinical study coordinator for more details about the procedure and what it entails, without being obliged to participate. I encourage you to contact Laura Kveene at 507-422-5241 to ask all your questions. Let us know how it goes (if you want).
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ninimurphy
@ninimurphy
@ninimurphy
Posts: 23
Joined: Feb 09, 2017
Will do next week when get back home. Let you know what I learn
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Rob Schweiger
@robschweiger
@robschweiger
Posts: 17
Joined: Jun 29, 2019
@ninimurphy Will do next week when get back home. Let you know what I learn
Any more information available?
ninimurphy
@ninimurphy
@ninimurphy
Posts: 23
Joined: Feb 09, 2017
@robschweiger Any more information available?
Haven’t had chance to call. In middle of relocating elderly parents, so little nuts, between that and trying to stay healthy, as I am sure you can relate to.
I will post when have opportunity to call
Rob Schweiger
@robschweiger
@robschweiger
Posts: 17
Joined: Jun 29, 2019
@ninimurphy Haven’t had chance to call. In middle of relocating elderly parents, so little nuts, between that and trying to stay healthy, as I am sure you can relate to.
I will post when have opportunity to call
Wondering if you had an opportunity to get an update yet?
@happyheart13
Just wondering how they diagnose heart failure with preserved ejection fraction. My EF is always normal though I have stenosis and will need surgery at some point
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