My Hypertrophic Cardiomyopathy Part Two: Surgery

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On March 28, 2023, Cardiologist Eiran Gorodeski MD, MPH. (@EiranGorodeski), my wife, and I reviewed my options now that CAMZYOS® (mavacamten) was shown to not be a successful treatment for my hypertrophic cardiomyopathy (HCM). Please read my previous HCM blog post about the months of learning about HCM, trying a new medication (which did not work out), and ending with my third echocardiogram showing that as the CAMZYOS™ wore off, my gradient was getting worse again:

• My Hypertrophic Cardiomyopathy Part One: Diagnosis & Medication

(It is interesting to think that if CAMZYOS® had been successful, there would have only been a "Part One" HCM blog post. Now, there also a third HCM blog post entitled: My Hypertrophic Cardiomyopathy Part Three: Hospital & Home)

Before the meeting, I identified and researched what I thought were my five options going forward after the CAMZYOS® failed to work for me. I put together a spreadsheet with columns laying out the pros and cons of all five options, along with my questions for the two most likely options. I brought my laptop with the spreadsheet to my appointment with the results of my research.

Here are my five ideas with comments relating to the outcome of the meeting:

1. Continue current dose of CAMZYOS®
   My gradient had significantly improved while taking CAMZYOS®, maybe the side effects would go away like magic?? (sarcasm!!) -- continuing CAMZYOS® is unfortunately not a viable option!

2. Try lower dose of CAMZYOS®
   Dr. Gorodeski said that with the side effects I was having from CAMZYOS®, even a lower dose would not be a viable option.

3. Do nothing and just deal with chest pain and shortness of breath for the rest of my life!
   Not a viable option!

4. Septal ablation -- a procedure to destroy with alcohol the thickened part of my heart muscle that was causing the obstruction.
   Viable option one!

5. Septal myectomy -- surgeon removes a small amount of my thickened septal wall to widen the path the blood takes (outflow tract) from my left ventricle to my aorta.
   Viable option two!

In reality, I already knew before the appointment that I was down to just two valid options, but I was glad that I prepared for the appointment so that my choices were based on research and not just emotion.

The March 28, 2023, cardiologist appointment ended with Dr. Gorodeski (@EiranGorodeski) making a referral for one appointment (on April 7, 2023) with both Interventional Cardiologist Anene Ukaigwe, MD (@ACUkaigweMD), and Cardiac Surgeon Yasir Abu-Omar, MD, to get their opinion on if I was a good candidate for alcohol septal ablation and/or septal myectomy.

 

 

April 5, 2023 - Dreaming More!

Waking up during sleep impacts whether a dream is remembered – and some people remember them while others don’t. . . . let’s say they’ve been a slug all day. They’ve been laying around. They haven’t done anything. Maybe they took a nap. They’re going to have longer extended wake ups throughout the night that happened right after they’ve been dreaming. Therefore, they wake up and they’re like, oh my goodness. I was dreaming.

When I was thinking about writing the first HCM blog post -- My Hypertrophic Cardiomyopathy Part One: Diagnosis & Medication -- and this blog post, I thought to myself that I should include something about my dreams being noticeably different starting in 2023. At first, I decided against mentioning the huge change in my dreams, since I could not explain to others (or even myself) how my hypertrophic cardiomyopathy (HCM) symptoms caused this!!!

Then, on April 5, 2023, I saw the following @UHhospitals tweet, and it all made sense!!

Historically, I don't remember my dreams, but starting in early 2023, I started remembering dreams most nights. To quote the University Hospitals article, the answer is that I was now "a slug all day," just lying around and not able to do anything, maybe taking a nap. (My hypertrophic cardiomyopathy is truly debilitating.) Thus, I had more "longer extended wake ups throughout the night that happened right after [I'd] been dreaming," and therefore remember my dreams. It would be interesting to see if, after my hypertrophic cardiomyopathy symptoms are resolved through medical intervention, I remember fewer of my dreams. I look forward to being busy again during the day and not remembering so many dreams.

 

 

Contrast: April 7, 2023 vs April 7, 2022

After reading about backpacking on the Continental Divide Trail for many years, I finally stepped foot on this wilderness trail on Thursday, April 7[, 2022.] . . . Despite these years of backpacking, the desert of New Mexico was totally different than anything that I had ever experienced -- this adventure can't be explained in words. I had a great time, and I feel incredibly fortunate to have had this opportunity. . . . Hiking the Continental Divide is not just following one trail. It is a "choose your own adventure" trip, . . .

April 7th is an important date in my personal history as a backpacker.

April 7th is both the anniversary date of the start of my Appalachian Trail Thru-Hike (from Georgia to Maine), and the start date of my northbound Appalachian Trail section hiking 10 years ago on April 7, 2013. (In the past nine years of section hikes, I have completed 10 of the 14 states from Georgia to southern Massachusetts. My original plan for April 2023 was to backpack another section of the A.T.) Last year, on April 7, 2022, I was starting a once-in-a-lifetime adventure -- a 22-day backpacking trip on the Continental Divide Trail (New Mexico desert section), starting at the Mexico border.

 

This year, April 7th is a very significant date for me in an entirely different arena.

On April 7, 2023, I had an appointment to choose one of two life-changing procedures to regain the life I had before I started having hypertrophic cardiomyopathy related symptoms approximately four months ago. (I wore my Continental Divide Trail t-shirt to the appointment to remind me of the appointment's significance.) During my appointment with Interventional Cardiologist Anene Ukaigwe, MD, and Cardiac Surgeon Yasir Abu-Omar, MD, they reviewed the current statistics regarding the success and risks for alcohol septal ablation and septal myectomy. In the end, they let me know that I was a good candidate for either procedure -- the decision was mine!!

I read some articles and watched a couple of YouTube videos about alcohol septal ablation and septal myectomy before the appointment, so I would be prepared for the meeting with the two doctors. Of all the YouTube videos I watched, the following are two videos that I shared with family members, since I thought they did a good job of explaining the two procedures:

Based on what I had read/watched and what the doctors told me, I made my decision. I chose the surgical option -- the septal myectomy!

It was good that my situation allowed me to make my own choice of the two options. Actually, I had pretty much already made the decision before the appointment, but hearing from the two doctors confirmed my decision. It offered the opportunity for my wife, Julie, to ask questions, and for both of us to hear from the two doctors the current information about the options. It is my hope that the surgery decision I made this April 7th will allow me to go back to having the type of adventures I used to have on April 7th in years past.

I also learned at this appointment that for either of the two options, I would have to first have a cardiac catheterization (heart cath). My next step would be to contact Dr. Ukaigwe's office to set a date for her to perform my cardiac catheterization.

Before my appointment where I had to decide between alcohol septal ablation and septal myectomy, I watched a good video which helped me learn more directly from a man's real-life experience with septal myectomy surgery.

If you found the video useful, please share it by retweeting the following:

 

I also watched this "The Two Minute Article" before deciding on septal myectomy:

 

 

April 10-12, 2023 - Binging Cardiac Surgery YouTube Videos!!

With my septal myectomy surgery decision made on April 7th, I spent a couple of days binge watching YouTube videos related to my surgery. I wanted to learn more about what was going to happen to me, and how to be prepared. Here are a few of the videos that I found most useful:

Preparing for Heart Surgery

I love how this former Boy Scout is following the Scout motto to "Be Prepared" for his septal myectomy open heart surgery:

Septal Myectomy for Hypertrophic Cardiomyopathy (HCM)

The following two videos have a YouTube warning stating: "Age-restricted video (based on Community Guidelines)." I would not recommend some people watch these videos, since they show actual surgeries, and you might find them disturbing. I, on the other hand, wanted to be knowledgeable about all the gory details.

• Septal Myectomy for HOCM
  Jun 11, 2021 -- This video shows the operative technique of extended left ventricular septal myectomy in an adult with hypertrophic cardiomyopathy.

• Extended Septal Myectomy (Graphic)
  Mar 1, 2021 -- Warning: This video contains actual surgical footage which may not be suitable for all viewers.

Open Heart Surgery

 

If you really want to see what the opening and closing of the chest for open heart surgery looks like, watch the next two videos together. I want to warn that many people getting the surgery and their family members might find these two graphic videos disturbing.

• How Chest is opened by Cardiac Surgeons for Open Heart Surgery / Mid Sternotomy Incision
  Explore Learn & Share
  Notice: Age-restricted video (requested by uploader)

• How is Chest closed after Bypass / Open Heart Surgery
  Explore Learn & Share
  Notice: Age-restricted video (requested by uploader)

 

Heart Lung Machine

Very cool tech in a heart lung machine!!!

 

• Heart Lung Machine | How does it work in (2022)
  "I am sharing some scenes from a recent heart operation where we used the heart lung machine. I am using this opportunity to share how the heart lung machine works and how it is connected to the patient. This video is for educational purposes only. Viewer discretion is advised, as some heart scenes may be disturbing for the viewers. Age-restricted video (based on Community Guidelines)"

 

Blondie - Heart Of Glass

As I was looking at all these YouTube videos about heart procedures, the lyrics "soon turned out had a heart of glass" jumped into my head, so of course I had to listen to:

• Blondie - Heart Of Glass
  Feb 24, 2009 #Blondie #HeartOfGlass #Remastered
  REMASTERED IN HD!
  Watch the Official Music Video for Heart Of Glass performed by Blondie.

 

 

April 12, 2023 - Preparing for Surgery with SeamlessMD Patient Engagement Platform and Emmi® Programs

With my selection of septal myectomy, University Hospitals started the pre-surgery education process using website and app resources:

• Emmi®
• SeamlessMD

Emmi®

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University Hospitals
Education for Patients on Conditions and Procedures
Emmi® is a series of free, animated online programs that walks patients through important information about a health topic, condition or procedure.

The Emmi® video is a good review of what will happen before, during, and after surgery. It also contains some warnings of what could happen if things go wrong -- including death!!!

 

SeamlessMD

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University Hospitals Harrington Heart & Vascular Institute has launched SeamlessMD, a HIPAA-compliant platform for patient engagement, remote monitoring, and virtual care. It is now using the platform for patients undergoing open-heart surgery at University Hospitals Cleveland Medical Center, to keep patients safe, on-track and connected . . .

UH’s Harrington Heart & Vascular Institute is a leader in cardiovascular care and was looking to further drive innovation to elevate its open heart surgery program. To achieve a standardized, higher-quality consumer experience, while also improving clinical outcomes, UH looked for a Digital Patient Engagement platform to keep cardiac patients safe and connected to their care team while at home.

UH rolled out SeamlessMD to engage and monitor patients more effectively before and after Open Heart surgery.

15-day countdown with SeamlessMD Patient Engagement Platform!

SeamlessMD was the main communication technology used for preparing for surgery. There is access via both website and app. I found the iPhone app most useful, and did comunicate with the SeamlessMD tech support efficiently when I had questions.

 

@SeamlessMD tweets about @UHhospitals:

 

 

April 14, 2023 - Publicly Sharing on Social Media

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Once I let all my family members know that I had chosen septal myectomy, I decided to publicly announce it on Twitter and Facebook. I greatly appreciated the people I connect with on social media wishing me well with my upcoming surgery.

 

 

April 19, 2023 - HCM Hiker Near PCT!!

After learning about her choices – including alcohol septal ablation or open-heart surgery (myectomy) – she picked the right treatment for her. It has made all the difference in helping her feel better and live her life.

I saw it as a good omen that the first American College of Cardiology patient story video I watched was about a woman who was able to go hiking after having septal myectomy surgery. I got chills when I listened to her story about being able to walk up a hill and not get winded (she started crying). I realize that her story might be my story -- being able to hike again after my septal myectomy surgery.

I got even more excited when I used a photo in the video to figure out her location. She was VERY close to where I hope to backpack on the Pacific Crest Trail someday:

 

Please retweet the following two tweets so that more people learn about Megan's HCM story:

Please learn more by reading Megan's two HCM stories:

• Patient Voices: Listening to Your Body is Part of Managing HCM

   

• Patient Voices: Know Your Choices for Treating HCM

 

 

April 19, 2023 - Pre-Admission Testing

 

A COVID-19 test was also required:

 

 

April 21, 2023 - Cardiac Catheterization

Anene Ukaigwe, MD
Dr. Ukaigwe has special interests in hypertrophic cardiomyopathy, transcatheter therapies for aortic, mitral and tricuspid valve diseases as well as left atrial appendage occlusion for stroke prevention in patients with atrial fibrillation. She has authored numerous publications and given presentations on these topics at local and national professional meetings.

University Hospitals Patient Resources:
What is cardiac catheterization?

In cardiac catheterization (or cath), your healthcare provider puts a very small, flexible, hollow tube (catheter) into a blood vessel in the groin, arm, wrist, or in rare cases the neck. Then your provider threads it through the blood vessel into the aorta and into the heart. Once the catheter is in place, several tests may be done. Your provider can place the tip of the catheter into various parts of the heart to measure the pressures in the heart chambers. Or they can take blood samples to measure oxygen levels.

On April 7, 2023, Interventional Cardiologist Anene Ukaigwe, MD (@ACUkaigweMD) let me know that I would need a cardiac catheterization before having my septal myectomy, and that she would be doing the procedure. I thought that a cardiac catheterization was always done through the groin, but I learned of a second option that she ended up using -- entering at the wrist.

Here is a good 3D animation video of the process that I watched before my April 21st appointment with Dr. Ukaigwe, except that the animation shows entering through the groin:

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Since I had a "Cardiac Cath Left & Right Heart," I had two entry points on my right arm, and one on my left arm. An IV on the my left arm was used to give me pain medication. The one at my right wrist led to the heart via the arteries (these are blood vessels that carry oxygenated blood away from the heart to the body), and the other inside the bend of my right elbow used the veins (these are blood vessels that carry blood from the body back into the heart).

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Immediately after the surgery, a clear, inflatable compression sleeve was put on my wrist to apply pressure to prevent any bleeding. Over approximately two hours, a nurse attached a syringe (see air valve in photo) to slowly let air out to decrease the pressure. I was not allowed to lift anything over five pounds for the five days after the procedure.

Except for my wrist hurting at times, I found that the procedure was straightforward. The videos at the top of this section of the blog and in the following tweet are actual views of my heart from my April 21, 2023, cardiac catheterization!!

 

 

Wednesday, April 26, 2023 - CDC COVID Data Tracker

I had been sharing on Twitter the Centers for Disease Control and Prevention (CDC) COVID Data Tracker results for months. It was good for me to see that whole state of Ohio was listed as "low" risk for the first time ever the week leading up to my entering the hospital for my surgery.

 

 

Thursday, April 27, 2023 at 6:00 am -- THE BIG DAY!!
Septal Myectomy Surgery Day

Yasir Abu-Omar, MD, DPhil, is the Surgical Director of the Advanced Heart Failure & Transplant Center, and the Russ and Connie Lincoln Chair in Cardiovascular Innovation at University Hospitals Harrington Heart & Vascular Institute. He is also a Clinical Professor of Surgery at Case Western Reserve University School of Medicine.

University Hospitals Patient Resources:
What is septal myectomy?
Septal myectomy is a type of open-heart surgery for thick heart muscle (hypertrophic cardiomyopathy). It decreases symptoms of the condition.

A muscular wall called the septum separates the left and right ventricles, the 2 lower chambers of the heart. In hypertrophic cardiomyopathy, the walls of the ventricles and septum may thicken abnormally. The septum may bulge into the left ventricle and partially block the blood flow out to the body. This causes the heart to work harder. It also contributes to many symptoms of the disease, such as fatigue and shortness of breath.

During septal myectomy, a surgeon removes excess muscle from the thickened septum. This allows the blood to empty from the ventricle more easily.

The night before my surgery, I finished the first very rough draft of everything in My Hypertrophic Cardiomyopathy Part One: Diagnosis & Medication, and everything up to this point in this blog post. Writing these two blog posts ended up being very therapeutic. It resulted in me being very relaxed as I entered the operating room, since I knew generally what would happen during my surgery.

As I entered the operating room, the last two things I remember before going under anesthesia is thinking that I was surprised by the large number of people there to take care of my needs, and hearing Dr. Abu-Omar go through a checklist of the surgical plan with the entire team.

My wife told me afterward that I was in surgery for approximately 3-1/2 hours. She then had to wait another three hours after surgery, while the doctors were waking me from the anesthesia and performing other post-surgery care, before she could see me in the Cardiothoracic ICU (intensive care unit).

 

 

After Septal Myectomy Open Heart Surgery

The third and final blog post of my December 2022 through spring 2023 experiences with hypertrophic cardiomyopathy (HCM) continues with:

• My Hypertrophic Cardiomyopathy Part Three: Hospital & Home

If you have not read the first blog post about how I learned about hypertrophic cardiomyopathy (HCM), please see:

• My Hypertrophic Cardiomyopathy Part One: Diagnosis & Medication