Pacemaker & ICDs: Introduce Yourself & Meet Others

Posted by Justin McClanahan, Moderator @JustinMcClanahan, Mar 12, 2025

Welcome to the Pacemaker & ICDs Support Group on Mayo Clinic Connect.

If you or someone you care about has had a pacemaker or an implantable cardio device (ICD), this is a great place to talk with others with similar experiences. Here, you will learn from one-another and share stories about surgery, recovery, lifestyle changes, successes, setbacks and what strategies helped other members on their journey.

Take these steps to participate in the group:

Follow the group.
Browse topics.
Use the group search to find relevant topics to your questions.
Introduce yourself.

Pull up a chair and chat. Why not start by introducing yourself? What type of device do you have? What tip would you share with others?

Interested in more discussions like this? Go to the Pacemaker & ICDs Support Group.

Linda, Volunteer Mentor | @walkinggirl | Apr 16 9:19am

In reply to @erryj10 "Hi, I'm Jerry. I am currently pre-op. My main concern is measuring what the direct benefit..." + (show)

@erryj10 Hello Jerry! Yes, this is a new device for you and you are asking great questions. In my opinion, it's worth it if it saves your life! Yet, we have no crystal balls to predict if we will be in that group. As you think about this, do search in your browser: Mayo Clinic ICD and Mayo Clinic Pacemaker. That hopefully will generate questions to ask and help you decide. Buddy, my ICD and I have been an item for over 3 years. No shocks, much pacing. Are you treated at a COE? What prompted your doctor to suggest a device?

Linda, Volunteer Mentor | @walkinggirl | Apr 17 9:10am

In reply to @erryj10 "Hi, I'm Jerry. I am currently pre-op. My main concern is measuring what the direct benefit..." + (show)

@erryj10 Hello again, Jerry!! Here are the links to information I hope you will find helpful. https://www.mayoclinic.org/tests-procedures/pacemaker/about/pac-20384689 and https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/multimedia/implantable-cardioverter-defibrillator-icd/img-20007914. Your statement "Some have commented that they have derived
little to negative benefit from the implantation" generates my question - how do they know that? Many of us have an electrophysiologist working with us and overseeing our devices. Does your neurologist monitoring your infarct areas work with an electrophysiologist?

erryj10 | @erryj10 | May 12 3:45pm

In reply to @eunice18 "Hi! My life with a PM started Aug 9th after passing out a few times which..." + (show)

@eunice18 Thank you for your comment. Call me Jerry. I have been advised to get an I(mplantable) C(ardiac) M(onitor), and I am hesitating in the hope that it self-corrects. I know that thats a pipe -dream, but it is my hope. I will have a further discussion with my cardiologist in about 1 week. Overt, obvious symptoms are difficult to identify. The pain is indistinct, transient, and mild. I am accepting any advice, I need a gentle shove into action.

erryj10 | @erryj10 | May 12 3:49pm

In reply to @walkinggirl "@erryj10 Hello Jerry! Yes, this is a new device for you and you are asking great..." + (show)

@walkinggirl Two mild strokes identified on a CT scan. If the neurologist had not seen evidence on the scan, I would never have known about them.

thoma175 | @thoma175 | May 26 12:45pm

Hello, I am a 57-year old female with HOCM. Was told I had heart issues in my 40's. Got a more definitive diagnosis at 50, but wasn't ready to try Camzyos. Covid hit and we moved to a different state. It took awhile to find a cardiologist. After I found one, I needed colo-rectal surgery, so that was a thing. I recently started focusing on heart appointments and now I am severe obstruction, so I started Camzyos 3 weeks ago, and I had a ICD put in on Friday, 5/22. I was very surprised by the ICD, and I don't think I was prepared at all. It has only been 4 days, but I am struggling a lot both physically and mentally. I am an active college professor who loves to travel. I am not at all impressed with my EP. I am wondering if patient care is not being taught in med school. Yikes! I am in an allied health field, so I know more that the average person about anatomy, health care systems, etc. This knowledge is not actually that helpful when it happens to you. I do have a visit to Mayo in Rochester scheduled for end of July. I am hopeful that I get better answers there. I appreciate hearing other people's perspectives.

jc76 | @jc76 | May 26 4:20pm

In reply to @thoma175 "Hello, I am a 57-year old female with HOCM. Was told I had heart issues in..." + (show)

@thoma175
If you have an appointment with Mayo in Rochester you are going to one of the most renown medical institutions in the world. I have been going to Mayo Jacksonville since 2006.

I copied this from Microsoft Co-Pilot (A.I.) and you can see it mentions Mayo Rochester as specializing in treatment of it. I read it is hereditary is that correct? Again you are going to one of the best places to go and will see experienced and knowledgeable specialists. Gook Luck!
+++++++++++
Why it shows up often on Mayo Connect
HOCM is one of the conditions Mayo Clinic is known for treating, especially at Rochester and Jacksonville. Many members share experiences about:
Getting diagnosed
Managing symptoms
Deciding between medications vs. procedures
Genetic testing for family members

Colleen Young, Connect Director | @colleenyoung | May 26 8:30pm

In reply to @thoma175 "Hello, I am a 57-year old female with HOCM. Was told I had heart issues in..." + (show)

@thoma175, welcome. Great to hear that you will be going to Mayo Clinic, Rochester. I encourage you to join the discussions in the Hypertrophic Cardiomyopathy support group here: https://connect.mayoclinic.org/group/hypertrophic-cardiomyopathy-hcm/

In the group, you'll meet @karukgirl @walkinggirl and many others who have been to Mayo Clinic, Rochester as well as others taking Camzyos.

Getting an ICD is emotional. Actually it sounds like you've been through a lot the past 7 years with confirmation of HOCM, colorectal surgery, Camzyos, ICD. No wonder this is having both a mental as well as physical impact. How would you describe how you're feeling about all this?

thoma175 | @thoma175 | May 27 2:41pm

In reply to @colleenyoung "@thoma175, welcome. Great to hear that you will be going to Mayo Clinic, Rochester. I encourage..." + (show)

@colleenyoung I definitely feel a loss of control. I also feel more like a passive member of my care team. I teach my graduate students to always make sure their clients/patients feel like they have a say or a more active role. The ICD happened quickly. I understand the reason, but I wasn't prepped well for the surgery. I thought that I would be sleeping through it. I was actually awake for the last 30 minutes, and I was scared. I will get over all this, but right now I am still processing everything, so when everyone is asking me how I am, I want to say that I'm not good.

Linda, Volunteer Mentor | @walkinggirl | May 27 2:47pm

In reply to @thoma175 "Hello, I am a 57-year old female with HOCM. Was told I had heart issues in..." + (show)

@thoma175 Hello! I see that Colleen has transferred your post to the Pacemaker & ICD discussion!

You have been through a lot medically and are ready to tackle the next challenge! I can identify with your statement "knowledge is not actually that helpful when it happens to you. " About a year after my septal myectomy, I wrote a 17-page essay, my cardiologist wanted to read it and said it was interesting to read about HCM and surgery from a patient's perspective.

You just acquired an ICD and yes, this is new and scary, you are now a bionic lady. Please give it time. I named mine Buddy and he/she became my constant companion after a septal myectomy; I never had "electrical" problems before, but they did develop about 2 weeks post-surgery. It was a great day when I met Buddy because the dizziness and giddiness from the arrythmias disappeared! My only regret is not being able to sleep on my stomach, and the one annoyance is the bra strap dilemma (sports bras work the best for me).

Now, you are going to Mayo in July! I love the statement by @jc76 "If you have an appointment with Mayo in Rochester you are going to one of the most renown medical institutions in the world." Here is the Mayo article in ICDs: https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/multimedia/implantable-cardioverter-defibrillator-icd/img-20007914

You may wish to read https://www.mayoclinic.org/departments-centers/hypertrophic-cardiomyopathy-clinic/overview/ovc-20442502 (Dr Schaff was my surgeon). In addition, you may place in your browser "Mayo Clinic HCM" to look at many other articles, some by Mayo Clinic and others from Connect if you wish. If you are not impressed with your EP, may I suggest you find a different one? If you live near Rochester, you may decide to receive all of your heart care there. We are all here to share our experiences, answer non-medical questions and to encourage you along in this journey.

Linda, Volunteer Mentor | @walkinggirl | May 28 2:47pm

In reply to @thoma175 "@colleenyoung I definitely feel a loss of control. I also feel more like a passive member..." + (show)

@thoma175 Just reread your discussion item. I cannot process the fact that you were awake! I would question that event with a higher person in charge. I'd be terrified!

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