HCM-ers: Introduce yourself or just say hi

@baystater101 wrote a detailed and understandable explanation about ICDs after a septal myectomy. After my septal myectomy in 7/22, I did not need an ICD. It was probably around 2 or 3 weeks later that I began experiencing times of dizziness and giddiness (I felt like I was being lifted up), when moving around. My cardiologist and colleagues could not find anything - well - looking back on it, I should have had a modified stress test just to see what was going on. After a syncope 10/22 I wore a Holter for a month, I had to press a button each time I was dizzy. before the results came back, I had another syncope. Once the results were in, it was apparent that I was experiencing arrythmias! It was a great day when my ICD was installed - no further dizziness again. Hearts undergo trauma during surgery and then heal; there is scar tissue which can interfere with the electrical functioning. I told my cardiologist that I think I should have had a Holter after a couple of weeks of dizziness, his response was that they are obliged to follow protocol, upon examination, one was not warranted. He is well versed in HCM and one to consult with colleagues and medical literature - I hope everyone learned something here from my experience. It was NOT FUN!

My heart-block situation sounds less complicated than yours, npfl, but some readers may find my story instructive.

I was advised before my septal myectomy and mitral valve repair surgery in July that in about 5 to 8 percent of septal myectomies, the surgery itself causes heart block because the cutting of the heart muscle interrupts neural/electrical pathways that control the heartbeat.

Turns our I am among that 5-8%. My post-op heart rate slowed to about 40 beats or less per minute, so 4 days after surgery a pacemaker was installed. My resting heart rate with the pacemaker is now in the low 70s. I was not told the specific type of heart block I experienced but from my online (amateur) research it seems like the AV type.

The pacemaker sends data daily to a computer. After about a week I was told the pacemaker was detecting atrial fibrillation so I am now taking a blood thinner, apixaban (brand name Eliquis), to protect against blood clots. (I do not feel any symptoms from the a-fib.)

The docs and I will see whether the a-fib resolves itself in the next few months, in which case I may be able to discontinue the apixaban.

Good luck addressing your issues, npfl; maybe someone on here has had a similar experience.

Hi @npfl, and welcome to Mayo Clinic Connect.
I learned something from you! I had no idea 10-12% of HCM patients end up with pacemakers!
I hope somebody from our little group can answer your question...in the meantime, has your care team referred you to Mayo in Jacksonville? Have they indicated this rapid progression of your heart conduction is related to HCM or is it in addition?

I found this online, but I am not sure it the same situation as yours:

Search Assist

Rapid progression of conduction disorders in the heart, affecting both the atrioventricular (AV) and sinoatrial (SA) nodes, can lead to serious arrhythmias and may result in symptoms like dizziness, fainting, or even heart failure. It is crucial to seek medical evaluation and treatment if such symptoms occur, as these conditions can be life-threatening.
Merck Manuals National Institutes of Health

Overview of Conduction Disorders
Conduction disorders affect the heart's electrical system, which controls the heartbeat. The two main types are:

Atrioventricular (AV) Block: This occurs when the electrical signals between the atria and ventricles are delayed or blocked.
Sinoatrial (SA) Node Dysfunction: This involves issues with the heart's natural pacemaker, which can lead to irregular heart rates.
Symptoms of Conduction Disorders
Symptoms can vary widely, but common signs include:

Slow or fast heart rate
Heart palpitations
Dizziness or lightheadedness
Extreme tiredness
Fainting
Shortness of breath
Chest pain or discomfort
Diagnosis and Progression
Diagnosis typically involves:

Medical History: Understanding symptoms and family history.
Physical Exam: Checking for signs of heart issues.
Tests: Electrocardiograms (EKGs) and possibly genetic testing.
Conduction disorders can progress rapidly, especially in cases of AV block or SA node dysfunction. Factors influencing progression include:

Age: Older adults are more susceptible to these disorders.
Genetics: Some conditions, like Brugada syndrome, are hereditary and can worsen over time.
Underlying Health Issues: Conditions such as heart disease can exacerbate conduction problems.
Management
Management strategies may include:

Monitoring: Regular check-ups to track heart function.
Medications: To manage symptoms or underlying conditions.
Pacemaker: In severe cases, a pacemaker may be needed to regulate heart rhythm.
Understanding these aspects can help in recognizing and managing conduction disorders effectively.

National Institutes of Health
Wikipedia
How are you feeling? When is your next appointment?

Wishing you a comfortable recovery after your upcoming surgery! Recliner - the nonelectric one I sit in to watch TV and movies worked well for me, a couple of pillows we had in the house were helpful when needed. Bras are an individual preference, I usually just didn't wear one, shirts and muumuus with patterns looked fine. If I needed to wear one, I had no comfort issues with my regular ones. I would close them in the front and then move the closure area around to the back. There may be that trial and error period to figure out the easier and most comfortable ways of doing things, it's so helpful to have a "bag of tricks" to try.

Hi,
I was diagnosed with NOHCM in 1995 and evaluated twice at NIH. I had a pacemaker placed in December
2024 and now apparently have a rapidly progressing multifactorial conduction disorder. I live in the Jacksonville suburbs. I think returning to NIH is unlikely given the turmoil within HHS, so I may ask my EP or cardiologist for a referral to Mayo Jacksonville. I understand the incidence of HCM is about 1 in 500 and of those 10-12% have pacemakers ( a 1 in 5000 incidence). The vast majority of those patients have one level — SA or AV node conduction disorders. My conductive issues involve all levels and has progressed rapidly. Does anyone have a similar condition?

https://connect.mayoclinic.org/discussion/what-i-learned-from-my-open-heart-surgery-part-1/
https://connect.mayoclinic.org/comment/1258080/
Hello @pga17, so glad you found this Mayo Clinic Connect group before your surgery.
I posted something you may find interesting.
WARNING! It's looonnngg! But full of good information.
I have posted before that I had like seven pillows in bed with me.
One for each arm. One for my head. One for my feet. One to hold on to. I guess that's really five pillows. But still...they were so comforting.

I went to TJ MAXX and got a two-pack of lounge bras for after surgery. These were so easy to just step into and pull up. It's not easy using your arms right after surgery. Trying to hook a bra is not impossible...but the lounge bras were such a great thing.
You do not want underwire anywhere near your chest wound! The bras were soft and felt like a gentle hug.

Before we left for Rochester, my guy got a La-Z Boy recliner that was electric with a remote.
I used it mostly because he was so wonderful to buy my an electric chair. It was nice, but I would have been fine without it as well.

You will be amazed at what your body will be able to do! It just knows.
Sure, you're gonna be sore for several weeks, but I promise...each day gets a little bit better.
Where is your surgery being performed?

Yes, pga17, my surgeon repaired my mitral valve during the septal myectomy surgery. He said he was not able to achieve 100% repair, but sufficient, in his judgment, to be better than replacing the valve, with whatever complications that would have wrought.

My pre-op shortness of breath (SOB) was intermittent, and not severe, and I think it is too early to tell whether it is significantly improved because I have not yet returned to full-on physical activity. (For example I am still restricted from carrying more than 8 or 10 lbs. per hand for another week or 2.)

I did not have palpitations or fatigue before the surgery. I did have occasional dizziness when I stood up quickly. In the first post-op weeks I was warned that ould still happen, and it did, but it seems to be dissipating. I had some leg-swelling post-op (gained 8 or 10 lbs. water weight immediately post-op) but the swelling (and the water weight) has gone away.

Generally, I am still at the stage where I am feeling better each week, so still don't know the extent of my eventual improvement. I am learning (and relearning) patience as I slowly but surely improve.

That’s a good idea. Hadn’t thought of a recliner. Has the myectomy helped with your pre-operative symptoms if you had these-shortness of breath, fatigue, dizziness or palpitations. When I stand up, I also feel sometimes like I don’t have good blood flow to my legs. It takes about 30 seconds to feel better. I already got a pacemaker last year.
Sounds like you are walking well! I’ll probably do cardiac rehab too. My surgeon says it’s up to me. Did you have any other surgery on your mitral valve at the same time. Thank you! Wishing you good improvement and good health!

@dbruskin, TY for sharing more information with me, although I hated to read that you still have periods of breathlessness. 🙁

Your information about Medicare was fabulous new! TY so much!!

Thank you for the welcome, Debra. You're right. No one wants to join this club! I live in a rural area, where neighbors don't really get to know each other, other than to say hi when we're picking up our mail. (Our mailboxes are 2 miles from our houses!) Another issue is that the drive is over a mountain pass where there has been a large fire for the past month. And before we know it, we'll have lots of snow to deal with. Our temps are already dropping to 40 at night. (That's good for the firefighters, though!)

My GP told me to call the doctor's office at OHSU and ask if the doctor ever comes over once a month. A lot of doctors at OHSU do that, but not the doctor I need to see. Also, this doctor is the only person in the state that deals with Camzyos.

Aww. I absolutely love the fact that 73 sounds young to you. These days I feel as old as Methuselah! I do have Medicare, as well as a supplemental plan and a prescription plan. I'm so grateful to know that Medicare Part D will cover everything but $2000.00. That's huge! All of the links you posted are very helpful!

Again, thank you for your empathy and your helpfulness, Debra!!