Pacemaker?
I was diagnosed with HOCM 2-3 months ago, and my cardiologist is wanting me to be evaluated for a pacemaker or defribillator. Is this common with HCM?
Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
You can have a sudden cardiac arrest and you may need a defibrillator or your heart may need to be regulated with a pacemaker. This is common with HOCM. If your Cardiologist says this is what you need then you should do so.
I personally have had 2 episodes of sudden cardiac arrest and I have a defibrillator.
Hello @starbear, and welcome to Mayo Clinic Connect.
Being diagnosed with HOCM just a few months ago must still have your head spinning...and now you have been told you need to be evaluated for a pacemaker/defibrillator.
That's a lot to process and I don't blame you if you have questions!
I would too.
Here is an article from the Mayo Clinic regarding HOCM/HCM:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
And here is another from the popular HCM group Hypertrophic Cardiomyopathy Association:
https://www.4hcm.org
I have a question for you; are you confident that your cardiologist is up-to-date on all things HOCM? It's important for you to be as educated about your new and unfriendly condition, so that you can participate with knowledge in any decisions on treatment or procedures.
I had several "second" opinions because I was just stunned at what I had just been told. I didn't want to believe it.
I am glad I did, because in the end, I was so confident that I made the scary, but correct decision to go forward with a septal myectomy at the Mayo Clinic.
Irregular heart rhythms are a very common in HCM/HOCM.
PVCs, SVT, Tachycardia, atrial fibrillation, and the BIG one, SCD...short for Sudden Cardiac Death, mostly due to Ventricular tachycardia/fibrillation which is often fatal. That's what a defibrillator is for.
Not to frighten you, but it is scary and does happen and is the reason some people with HOCM have this device. To prevent such an incident.
This is a lot to process, and hopefully you and your cardiologist will reach the right decision soon. Meantime, there are many members here on Connect with HOCM and defib/pacemakers.
For instance, member @walkinggirl lives with her device and they get along quite well together.
This is a lot to process, and hopefully you and your cardiologist will reach the right decision soon. Meantime, there are many members here on Connect with HOCM and defib/pacemakers. For instance, @wal
Since you just recently found out about your condition, have you noticed any changes you used to just ignore?
Is your health otherwise good and you can exercise and are active?
*sorry for the extra sentence about processing this all, not sure how that happened, and hopefully member @ wal will not wonder how they got this HOCM post!
Thank you Debra. My cardiologist seems competent and knowledgeable as best I can tell, and I feel comfortable with him, but I don't know if he has any special expertise in HCM.
I am now more aware of shortness of breath as a symptom during tennis matches or workouts and which I used to assume was just a function of age (I'm 78). I'm also now more mindful of pacing myself and avoiding excessive exertion. My general health is quite good and I'm hopeful I can remain active and competitive with tennis.
After a septal myectomy, I began experiencing arrhythmias and had two syncope episodes. Buddy, my name for my pacemaker/defibrillator (ICD), helps keep my heart beating at a steady pace. After close to 3 years I have not experienced any of those nor have I had any jolts from the device. Except for declaring its presence when going through security checkpoints, I am living a completely normal active life. For those with HCM, many of us strongly recommend cardiologists well versed in that condition.
Thank you. How do you suggest I find out how experienced my cardiologist is with HCM?
@starbear , I would start with checking the link I sent from the HCM organization. They have a section that shows you Centers of Excellence by State.
The Mayo Clinic, the Cleveland Clinic, Cedars-Saini, all are COEs for instance. These are places that have excellent research, treatment and outcomes for HCM/HOCM patients.
HOCM is such an elusive condition at times to even diagnose, which happens to many HCM patients. They go misdiagnosed for years with other heart conditions because HCM mimics many other things.
It is important that you educate yourself on what is living inside your heart. That way you will be able to advocate for yourself and help in the process of choosing the right treatment plan going forward.
I would not let distance or personal convenience be my deciding factor in choosing a place to go either. I flew across the country from CA to MN to be seen at the Mayo Clinic. Best decision I ever made.
You want to be able to swing that tennis racket like a champ for as long as you can!