PeriCut EFS for minimally invasive periocardiotmy

Congratulations, @altilla. I love hearing your experienced immediate relief of heart pressure. This is so wonderful!

I believe the study is the PeriCut Catheter System Early Feasibility Study, and the primary criteria you refer to is having heart failure with preserved ejection fraction (HFpEF). This system modifies the pericardium allowing the left ventricle to better fill and enhance cardiac output.

- Mayo Clinic Research PeriCut Catheter System Feasibility Study
https://www.mayo.edu/research/clinical-trials/cls-20575995
- PeriCut First-In-Human Use in 3 Patients
https://www.mpo-mag.com/breaking-news/hfpef-therapy-used-for-first-time-in-human-patients/
If I understand correctly you are one of up to 15 people who will participate in this study. Would you share more about this procedure using the PeriCut Catheter? How long have you been having problems, and did you have other options? What are your expectations going forward having this procedure behind you?

Good morning! Sure. Until September of 2024 I was a disgustingly healthy individual. Then I got a bad case of Covid and that started a sequence of events that led me here. Covid pneumonia with coughing so severe I detached the retina in my right eye, microscopic colitis, influenza A, post covid adult onset asthma, hypertension, Long Covid/dysautonomia and unexplained dypsnea. I think I forgot a couple things in there but it doesn’t matter. Pulmonologist and Cardiologist couldn’t find a reason. My cardiologist used to work at Mayo and after all the tests that were available in North Dakota recommended I go to Mayo for testing that he knew was available there. My Mayo triage team thought this was probably a long covid thing and I would be referred down that path but I had to clear cardiology protocols first. I didn’t. Last October I was diagnosed with HFpEF and put on Jardiance. I’m not the stereotypical HFpEF patient. Not overweight. Not frail. Only 68. A very active male. The Jardiance worked great for about a two months. Then either my body got used to it or my HFpEF got worse. I was offered a slot in the study. I was to be number 5 in February. Provider scheduling didn’t work out and patient 4 didn’t clear all the hurdles…so I became patient 4 this week. Monday was a long day of testing and interviews. Tuesday was a right heart cath with exercise to make sure my pressures were bad enough and then right in for the pericut (catheter switchblade by heart failure solutions) pericardiotmy. Should be released today had some minor lung drain issues but feel WUNDERBAR!

Just a quick follow up. Had a chest x-ray yesterday to verify the fluid is gone from lungs. Been getting a good amount of walking in for this stage. 1-3 miles. Yesterday we ran our hunting dogs across the prairie and it was wonderful. Like old/pre-HFpEF times. Six minute walk tests of .34 miles. 21 more days of “take it easy” doctor directed time but amazed at the difference pre-surgery to post surgery.

@altilla I love hearing your update, sounding like you are doing great.

What is next for you, what does follow-up look like?

@jlharsh I had a one week after telehealth and I have an upcoming telehealth call with the study coordinator in May. A couple months further down the road I do that again and take the KCCQ type life surveys again. At six month point (October) I go back to Mayo and redo all the baseline testing through the right heart cath/exercise test.

I continue to be amazed by the difference pre and post surgery. I had literally forgotten it was possible to feel this good!! No HFpEF symptoms at all. I took my huntings dogs on a cross country jaunt today of a little over a mile and then did a 4.6 mile walk at our gym with a .34 mile six minute walk test.

@altilla, it is exciting to hear how wonderful you feel…..how active you are! Keep up the good work.

October will be here before you know it and you will be off to Mayo to see how well your trial procedure is working.

Please come back and provide updates.

The 30-day telehealth appointment is complete. Below is the executive summary of the info I provided to Mayo.

“Executive Summary:

I had forgotten it was possible to feel this good!!!

No shortness of breath. No stopping to catch my breath. Stairs are not an issue. Hills are not an issue. I can talk nonstop without gasping for air. Never gasping while eating. Left arm tremors while sleeping are gone. I can sleep lying flat without feeling like I’m drowning. One hundred and eighty degrees from where I was pre-surgery. It is truly like someone flipped a switch and all was good.

Friends comment that:
1. “Your color is back.”
2. “You’re back to being you!”
3. “You’re an Energizer Bunny on crack!”

Stats:
Weight loss 9.5 pounds
Average resting HR 47 (not a change)
Average walking HR 72 (not a change)
Daytime Respiration 13-15 (not a change)
Sleeping Respiration 11.5 - 20 (previously 7 - 35.5)
Low Heart Rate Notifications 97 all but one while sleeping. They come in clusters. Some nights none. Some nights 13 or more.

BP: 111/58 last 30 days down from 137/78 for 1 Dec to 6 Apr”

Next step is the three month telehealth and quality of life surveys on Jun 23.

The team has a few more procedures to complete for this study. Hoping everyone has favorable outcomes and this option will soon be readily available.

Had my 3 month tele-health follow up today. Filled out the KCCQ-12 and SF-36 health/quality of life surveys. WAY different than early April. Next stop…Mayo in October for retesting. I have my goals…160 watts on the OR table bike and no values that would have qualified me for the study back in April. We are about halfway between the surgery date and the upland opener. The girls and I are ready.

Executive Summary 11 May - 20 Jun:

Stayed at a BNB for over a week that had 4 flights of stairs so did 16-20 flights a day. No issues at all!

Overall, pretty much the same as last report. From last report: "No shortness of breath. No stopping to catch my breath. Stairs are not an issue. Hills are not an issue. I can talk nonstop without gasping for air. Never gasping while eating. Left arm tremors while sleeping are gone. I can sleep lying flat without feeling like I’m drowning. One hundred and eighty degrees from where I was pre-surgery. It is truly like someone flipped a switch and all was good."

Some transient pain around the camera site. Sharp sometimes. Just irritation other times. A couple days of just chest pain ... not centered on camera site. Did take 400mg OG ibuprofen for a couple days. Seemed to take care of it.

Did the refill on the colchcine prescription because I will be three days short of the 90 days after surgery that was in discharge orders. No big deal either way I don't think.

Stats:
Weight loss 14 pounds since surgery
Average resting HR 45 (not a change)
Average walking HR 66 down 6 since surgery
Daytime Respiration 13-15 (not a change)
Sleeping Respiration 7.5 - 33.5 (one outlier night otherwise 7.5 -20.5)
Low Heart Rate Notifications (below 40 for > 10 minutes) 48 all but one while sleeping. They come in clusters. Some nights none. Some nights 13 or more.
BP: 113/63 statistically the same as last time (111/58)
Sleep up by 50 minutes since surgery

Hit the 90 days post surgery this week. That meant the end of taking colchicine twice a day. The first night with no antiinflammatories on board was rough. Felt like someone lit a bonfire in my chest. A couple days later things have calmed down a good bit. Maybe there should be a taper to the colchicine therapy?

Decided to give the CoQ10 a try starting tomorrow. I have been on a statin for long time and just thought it would be worth trying.