Hypertrophic Cardiomyopathy

From My 2023 Recovery from Surgery to My 2024 Chest Pain Journey to Recovery Again

After writing my last three HCM recovery blog posts, I did not expect to ever write about my heart condition again. Since hypertrophic cardiomyopathy (HCM) is a progressive heart condition, I did think in the back of my mind that I may need additional treatment that I might write about at some point in my life, but I assumed that it would be in the distant future or maybe never happen within my remaining lifetime.

At first, I debated listing this as my seventh HCM blog post, since at the time I write this, my current chest pain and occasional breathlessness has been confirmed to not be caused by my ongoing HCM cardiac condition. As you read this HCM blog post, you will learn how my chest pain does, most likely, relate to my April 27, 2023, open-heart surgery, which I needed due to having HCM. I write "most likely," since I write this while still in the middle of actively seeking treatment that will be successful in stopping my chest pain.

I want to be clear that my chest pain is mild most of the time, but it has worsened the last two months (July/August 2024), and is now interfering with all of my normal life activities. My chest pain is difficult to treat, since it grows and subsides in intensity seemly randomly -- nothing makes it worse and nothing makes it better.

I decided to write the majority of this blog post starting in mid-August 2024 . . .

• to capture the current status of my progress to find a successful treatment while it is still happening.

• since I find that writing is something that I can do while in pain/discomfort, and it helps distract me from my current situation.

• as part of my goal to help me accept what I don't have control over. (This is hard for me.) Documenting the treatment process helps me mentally.

• to, most importantly, have a positive outlook for the future. Notice that the title includes the word "Recovery" at a time when there is no guarantee that I will get better. My plan is to write about what is happening to me through the end of August 2024, and then later add the final outcome which I expect to be positive!

If you are reading this seventh HCM blog post, it means that I published it because the journey that I document in the following text ended in the success I desired. To all those people that I mention in this blog post, I am grateful for their part in helping me to leave my chest pain in the past and now enjoy my life fully again!

NOTE from Stuart: On January 2, 2024, I was asked by the University Hospitals Harrington Heart & Vascular Institute Senior Media Relations Strategist to have my story added to The Science of Health blog and the Heart & Vascular Patient Stories sections of the University Hospitals website for February -- American Heart Month. I provided the photo for the story, and approved the story before it was published on the hospital's website.

The reason that I chose to publish this HCM recovery blog post today, Wednesday, February 28, 2024, was because the Hypertrophic Cardiomyopathy Association announced that today was HCM Awareness Day.

As we come to the end of American Heart Month 2024, I am glad to have permission from University Hospitals to share their blog post about my HCM recovery story with you on my blog.

---

---

This, my fifth HCM blog post, is about my being interviewed on January 22, 2024, by Spectrum News 1 reporter Kimberly Perez. It is a continuation of the last HCM recovery blog post, and a result of my cardiologist, Eiran Gorodeski MD, MPH, recommending that I share my story on television. I refer to this as my second "recovery" blog post of my HCM series.

Hiking on the Buckeye Trail, starting two months after my open-heart surgery, was a big part of my recovering my strength, stamina, and balance. When I was contacted to be interviewed by Kimberly Perez from Spectrum News 1 on Monday, January 22, 2024, I thought it was very important to have the interview take place on the Buckeye Trail. I suggested she conduct the interview while we hiked together on the Buckeye Trail to the Bridal Veil Falls Scenic Overlook in the Cleveland Metroparks Bedford Reservation. These Falls are on a beautiful section of the trail that is easy to reach by a short walk from your car.

I arranged for my wife and co-blogger, Julie, to join us to take photos of the interview process. I am so glad that she was able to attend, since she captured the beauty of the area with her photography. The day after I posted photos, the Buckeye Trail Association shared my Facebook post with their 11,000+ Facebook followers.

The temperature was in the 30s when Kimberly Perez and I starting talking while walking down the trail. She used her smartphone to record my answers to her questions, as I told my story of past backpacking trips; my debilitating HCM symptoms in the spring of 2023; and my recovery, which led to my backpacking trip on the Appalachian Trail.

On Saturday, February 10, 2024, at the same time I was heading to a Northeastern Ohio Orienteering Club event, Spectrum News 1 posted their video about me. Please watch the video and accompanying article.

I am already planning more adventures in 2024, which are possible thanks to my successful open-heart surgery at University Hospitals.

On June 11, 2023, I ended my third Hypertrophic Cardiomyopathy blog post questioning whether I would have a fourth "recovery" blog post:

Well, my idea of writing an HCM (hypertrophic cardiomyopathy) recovery blog post changed from a doubt to a must-do when my cardiologist, Eiran Gorodeski MD, MPH, recommended I share my story with others on television. He had University Hospitals Senior Media Relations Strategist Carly Belsterling contact me on October 16, 2023. After an initial interview with her, I met with TV-3 News Special Projects Reporter Lindsay Buckingham on December 5, 2023, at a special location. Dr. Gorodeski was also interviewed for the news story, and he shared how I have a specific type of heart failure called hypertrophic cardiomyopathy that affects about 750,000 Americans.

In this recovery blog post, I will share an update on the great progress I have made, information about the significance of the interview's location, and then the actual interview that was broadcast, along with its companion article.

In this third and final blog post about my December 2022 through spring 2023 experiences with hypertrophic cardiomyopathy, I share information about my week on the University Hospitals third-floor in both the Cardiothoracic ICU (intensive care unit), and then the post-surgical telemetry unit. I end the blog post writing about my first week and month at home.

It is interesting how my progress was not linear -- I had bad times after good. My strength and pain came and went away with no logical relation to what I was doing.

After the first week at home (May 4-11, 2023), issues arose that seriously slowed me down. Apparently, my successful first week of feeling energetic enough to walk was not the norm. Very similar to my experience in the hospital, my progress was not linear -- I had bad times after good.

It is hard to explain -- at the same time I felt so much better than I had for the first four months of this year with my hypertrophic cardiomyopathy symptoms, I now had problems caused by the after-effects of the surgery. The debilitating symptoms from having a deformed heart caused by HCM were eliminated by the surgery, but the surgery caused issues!

On March 28, 2023, Cardiologist Eiran Gorodeski MD, MPH., my wife, and I reviewed my options now that CAMZYOS® (mavacamten) was shown to not be a successful treatment for my hypertrophic cardiomyopathy (HCM).

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.

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 cardiologist appointment ended with Dr. Gorodeski making a referral for one appointment (on April 7, 2023) with both Interventional Cardiologist Anene Ukaigwe, MD, 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.

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, the two doctors 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!!

As I wrote in my "2022 Reflections" blog post, I was very active last year, but I ended the year having reservations on what the new year would bring.

With all of my activities in 2022, and throughout my life, you would not know that I had a progressive, genetic heart disease that would lead me to have to stop almost all my activities as I started 2023.

Being diagnosed with hypertrophic cardiomyopathy reminds me again (since I already knew) why I made time in recent years to hike sections of America's long trails (Appalachian Trail, Pacific Crest Trail, and Continental Divide Trail) and stay active attending events in the Cleveland/Akron area while I still had my health. I plan to return to my normal, active life after I find a successful treatment.

As you will read in this blog post about my condition, you will learn that despite having hypertrophic cardiomyopathy, modern medicine does offer hope for getting rid of the debilitating symptoms.