Pacemaker & ICDs: Introduce Yourself & Meet Others

@walkinggirl Hello there, I have been diagnosed with HCM since 2017 and was told at that time I could possibly need an ICD. In May 2025 I had an episode where my heart stopped at church but thankfully I didn’t pass away. November I had an ICD implanted and as you experienced I woke up during surgery at the point where I heard my surgeon say “she’s ready for suturing” and felt pressure on my chest while my surgeon was positioning the ICD in my chest. But went back out reawakening in recovery. Since that time I’ve had numerous complications and to date on antibiotics for my second round of bacterial infections, tests and bloodwork. Seems my body is reacting to an allergic reaction to the titanium from the ICD. God willing I pray not another surgery. Please let me know if anyone else has experienced such and if an ICD has been removed due to an allergic reaction.

@walkinggirl @thoma175
I have never heard of being awake for the procedure either. A lot of time they use propranolol and you are in wa wa land but you remember nothing.

Being awake and aware and conscious of your surgery and remembering it is in my opinion something wrong.

My comment comes from experience. I have had 3 ICD/Pacemaker surgeries and remember nothing after my doctor came over and put an X on my surgery site. I have had catherizations while awake but never heard of ICD or pacemaker surgery without sedation or a type of anesthesia to prevent what happened to @thoma175.

@wclues2 Hello! Welcome to Connect! I see that this is your first post, and you believe that you are allergic to the titanium from the ICD. I read a posting quite a while ago where a lady developed an allergic reaction to the stainless steel wires used to finish her septal myectomy. Yes, she needed to return to Mayo where the doctors did come up with another method/material to wire the sternum (breastbone) back together. Are you receiving care at a COE (Center of Excellence)? Now, Mayo seems to have no articles on allergic reactions to ICDs, but I did find these from reliable sources: https://pmc.ncbi.nlm.nih.gov/articles/PMC10264757/ and the Medtronic website noted "What if someone who needs a heart device is allergic to the device or leads?
An allergic reaction to an implanted heart device is very rare but allergy testing can be done. Talk to a doctor about any specific concerns." Doing such an allergy test would rule in or out the titanium allergy. The Cleveland Clinic posted a couple of podcasts on this subject, too, the podcasts seemed to be aimed at medical personnel. Treatment at a COE is most likely to result in a positive outcome. BTW, the anesthesiologist may have upped your anesthesia when you began becoming conscious. Keep us posted @wclues2!

@jc76
I’m sorry. Let me clarify. They did give me conscious sedation medication. I woke up and was very aware of what was going on, because the procedure took a little longer than they thought it would.

@walkinggirl Hello and thanks for the information it was very helpful. And yes I surmised the anesthesiologist did exactly as you said. I reviewed the link you submitted and will do some further research into the matter, providing updates to everyone as I go. I am at a COE but may speak with another COE physician in my area. Again thanks 🙂

Hello! I'm new here. At age 37 I suffered a sudden cardiac arrest. I was fitted with an S-ICD. At age 40, I had a VT/VF event which required three shocks from the device. Always glad to be a part of an ICD support group. I've learned more about ICD's and arrhythmia's than most my age probably know.

Hello, A month and a half ago if you told me I'd be joining in ICD support group I would have told you that you were crazy. This is all been quite a surprise for me. I'm a very active and otherwise healthy 68-year-old woman. During the past year I had been told by nurses and a couple of doctors that I had too many PVCs. My cardiologist at home had commented on them, and told me that he'd see me again in May of 2027.

Long story short, I asked my primary for a referral to Mayo (where I usually go if there's something of concern) and was found to have quite a high PVC burden. I was told I would have an ablation and start on Sotalol (which was short lived due to a recent genetic discovery.) Days prior to the mapping and ablation, an ICD was mentioned as a possibility, if it was determined that I went into ventricular tachycardia easily, which I did. That was a shock, no pun intended! Five weeks later, I have my new Medtronic Cobalt(named Happy, after my old dog, who was so velcro he would have gotten under my skin if he could have) and am healing, and getting used to my new normal.

The worst thing for me is that I am extremely anxious about moving my left arm and displacing the leads. I was told not to raise it, or reach behind my back for 4 weeks, but I've also read 6 weeks. I too, was semi awake during the procedure when they were closing me up and really don't want to experience that again for a long time if I don't have to.

Can anyone please share any advice or experience with when they started using their arm and how? I would love to swim, eventually golf again, and even do a simple thing like putting my hair in a ponytail. At this point though I am hesitant to do anything that could possibly disturb the leads. Any insights would be sincerely appreciated. I apologize for the length of this intro. Thank you very much!

My only suggestion is to make sure you start moving your arm and shoulder as soon as you can. I started PT because my shoulder, arm and chest got stiff, tight and not moving enough affected my range of motion. Ask for some gentle stretching exercises to do and when to start them.

@tankah ask your care team about activities like golf. It's different for everyone and even different depending on the ICD type.

@abenn86, @acapsych and @tankah Welcome to all of you to the Connect discussion on ICD/Pacemakers! You have been discussing with good tips and advice and I learned a few things, too. Cardio rehab, besides PT, is a way to have supervision in returning to regaining the left arm movement we wish to regain. Here is a study by the NIH in regard to exercise: https://pmc.ncbi.nlm.nih.gov/articles/PMC6715540/ You may also wish to read https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/multimedia/implantable-cardioverter-defibrillator-icd/img-20007914 which may generate more questions from you to your doctor. I named my ICD Buddy, acquired at age 76 after a septal myectomy for hypertrophic cardiomyopathy (HCM). My lucky heart developed electrical problems, dizziness, giddiness, arrythmias and a couple of other things, Buddy has eliminated all of those life-limiting complications. I am very active (walked 10k with my walking club this morning). @abenn86 even children sometimes need a device, we need to have our own private EMTs with us 24/7. @tankah please do look into cardio rehab or PT, listening to your body and consulting with the experts on exercise will give you the most successful recovery and @acapsych sharing your experience is extremely helpful to us all. How have the people in your lives reacted since you became bionic people?