Pacemaker & ICDs: Introduce Yourself & Meet Others

Posted by Justin McClanahan, Moderator @JustinMcClanahan, Mar 12 1:59pm

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.

barbhnniki | @barbhnniki | Jun 5 10:55am

In reply to @deniseheart "I would like to know what part has been debilitating for him. Some thoughts: pocket is..." + (show)

The entire physical condition is debilitating. The ICD is larger, heavier and moving lower on his chest. The incision is okay. Old wires were capped off and new ones are coiled on top of the defib. He is steadily losing weight due to the Parkinson’s changes: no smell, little taste, trouble eating and swallowing.

jc76 | @jc76 | Jun 5 11:06am

In reply to @barbhnniki "I’m confused myself. He had decreased heart function and got a PM. We thought it had..." + (show)

@barbhnniki

I’m confused myself. He had decreased heart function and got a PM. We thought it had a defib, apparently it did not, only a monitoring one. He developed a ‘pre-beat’ and then Afib. His cardiologist referred him to an electrocardiologist, expecting a certain ICD to be inserted.

What he did receive was not a ‘heart-strengthening’ ICD but simply one that would shock the heart if needed. Apparently there is a difference. The ICD has a third wire; the vein the dr wanted to use was blocked so he called in an interventional cardiologist to clear it. Our follow ups with the electrocardiologist were very unsatisfactory; he wouldn’t even tell me the name of the vein he used and didn’t post any information on Bill’s portal or the hospital records to say what was done. Our cardiologist couldn’t even get a copy. Four meds are standard following this, he was only on one he’d been on for awhile, the electrocardiologist did not add any.

When I say his reaction to the defib, he had several issues. He did not receive any shocks. His entire left arm, shoulder and chest were very bruised and remained red for almost two and a half months. I asked if there could be a bleeder but was told this was all normal. He was given numerous tests prior to the defib which gave 3 different functional readings in the 40s and 30s. It has now been determined that the heart is at 31%. He is even more tired, exhausted and weak since the surgery.

We don’t believe the Parkinson’s changes caused the reaction to the surgery weakness-wise, it is normal Parkinson’s progression; the electrocardiologist and cardiologist say the instruction to not elevate his arms initially and his strict adherence to that resulted in partially frozen joints for which he is now getting therapy.

At our cardiologist visit this week, three outcomes are possible. 1. The heart will stop; the defib will take care of that. 2. Aspiration and congestive heart failure will occur; metropolol was added to the lisinipril to help strengthen; we’ll take a break for a month before adding one med at a time. 3. No further changes at this time.

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@barbhnniki
In reading your post and bear with me as I have had a ICD/Pacemaker for almost 20 years so have a lot of personal experience with this.
You mentioned decreased heart function then another sentence 31%. I think what you are talking about is heart failure. Now don't get upset it is a terrible name. It only means the heart is not pumping a good as it should be.

31% if that is his ejection fraction (EF) it is quite low and per my cardiologist, Electrophysiologist and heart failure doctors (Mayo Clinic) this number is where they look at implanting a ICD.

The description of his surgery site (entire left arm, shoulder, and chest bruised and red for 2 1/2 months. Wow. Was he checked for infection?

The restriction of his arm is something I don't want to disagree with but my EP had me using my arm just no quick jerks, or over my head motions for several weeks and not tennis or fishing ectc. for 3 months. Why did he want me to use my are. To prevent frozen joints. I came into his office the day after surgery wearing a sling on my left arm that was given to me by release nurse day before. He said to his nurse get that sling off I told you no sling.

I am giving you what my experience was. We can only pass on our personal experience not if something is wrong or not done right as we are not medical professionals nor have your husbands medical record, medications, etc.

My suggestion reading your post is to suggest a second opinion including a dual implant for both pacemaker and ICD device. How close do you live to a major medical facility like Mayo, Cleveland Clinic, John Hopkins and other major experienced medical facilities with the exceptional and expereienced medical specialist.

I know you mentioned fatique but did they discuss exercise with him. The level, recomendation maybe cardiac rehabilitation.

He has parkinson disease and it maybe a reason for divation from my personal experience.

I want to end with my EF is 25%. I do Sprint Triathlons. So keeping his EF up is what you should be discussing with your cardiologist. Mine went from 48 all the way down to 25 but stopped when I got my ICD/Pacemaker and put on Entresto and Carvididol.
Good luck. Consider getting a second opinion on treatments.

barbhnniki | @barbhnniki | Jun 5 12:23pm

Thank you JC76! I appreciate your experience and further explanations.
I do understand the 31% EF and heart failure.
He was checked for infection. All responses were basically ’There there, everything’s just fine, all is normal.” Like all people my age are unintelligent!
Love your comments on the sling! Bill has so much going on that I tend to lean to don’t do anything to cause him more pain. He’s had rotator cuff surgeries, two total knee replacements (one immediately before a quad bypass). He’s was an avid golfer and used golf to forestall Parkinson’s problems as long as he could. He’s now in remission from prostate cancer for which he’s had surgeries including cryosurgery. He’s a strong personality and fights all these problems which he has accepted almost stoically.
He has little stamina for travel now; we have a five month old great granddaughter he couldn’t make a 3 hour trip to see. He has therapy twice a week for his joints and neck/back muscle spasms. We go out daily for lunch. Therapy and walking with a walker wears him out and he naps most days.
I admire your Sprint Triathlons and 25 EF!
I will discuss keeping his EF up with the cardiologist during our monthly appointment and if Entresto and Carvididol are feasible. I have the impression that palliative care at this point is his only option.

barbhnniki | @barbhnniki | Jun 6 8:37am

Thank you JC76 for helping me further understand what is happening with my husband’s situation.

kb49 | @kb49 | Jun 7 2:56pm

I would be interested to know how your husband progresses while my own situation is much different my fatigue after routine pm surgery can’t be explained I’ll keep you both in my thoughts and prayers

mbixler | @mbixler | Jun 26 1:01pm

In reply to @JustinMcClanahan "To get the conversation going in the new group dedicated to Pacemakers and ICDs, I am..." + (show)

All the questions! Am 3 weeks out from having my pacemaker surgery, and while I’ve researched it online, I know there must be a ton of things I’ll need to ask the doctor. Can anyone recommend questions I should ask?

mbixler | @mbixler | Jun 26 1:10pm

In reply to @jc76 "@eunice18 Can you go into what a loop recorder is and it's concept versus a ICD/Pacemaker?..." + (show)

I got a loop recorder after being diagnosed with Atrial Fibrillation. It was remotely monitored, so the cardiologist could tell if the Flecainide was working to control my heart rate. It is only good for monitoring, no intervention of cardiac issues.

jc76 | @jc76 | Jun 26 5:08pm

In reply to @mbixler "All the questions! Am 3 weeks out from having my pacemaker surgery, and while I’ve researched..." + (show)

@JustinMcClanahan
If I understand your post you are having pacemaker surgery in 3 weeks is that correct?

Not knowing your medical history or why you are getting a pacemaker kind of limits what we can pass on via our experience with this on the questions.

But I have a lot of experience with ICD/Pacemakers (are you getting just a pacemaker or both). I first got my ICD/Pacemaker in 2006. I am now on my 3rd device meaning I have had 3 surgeries.

The first implant is always more involved as it requires the wires to be placed. A question her I would asked does your surgeon use static leads or screw in leads. Difference is what sits in your vein the other gets inbetted.

Asked what manufacturer of your device. Then go on that web site as it will contain tons of information on your device, recommendations, ability to asked questions, and see how the device works, etc.

Ask your surgeon about post recovery and be specific about use of your arm, activities, signs of infection, etc. Ask if you are going to have it implanted below skin or chest muscle. I had mine done below chest muscle as my skin was very thin and also I was very active.

Asked your Pace or cardiologist about how it will be programmed on rate of being paced, and why. Will he/she have exercise mode turned on? Asked about any concernes with electrical inferernence from devices and precautions you should take. Most new devices have very good protection from electrical devices.
If I knew if you were getting a ICD also it would help.

Feel free to send me a private message and I can give your more depth experience and the questions I learned to ask after getting now my 3rd device and having one now for 20 years.

You can click on my name and it will pop up send private message.

kadenhaviken24 | @kadenhaviken24 | Jun 27 11:48am

Hi my name is Kaden, I have been diagnosed with ARVC for 5 years. My defibrillator was implanted when I was 16 and I have gotten shocked 12 times since then. 11 of those 12 came from vtac storm that happened 2 years ago, and I am still struggling to cope with the trauma. I have many sleepless nights and nearly every time I have a pvc, my head starts to race. Does anyone have any tips and tricks I guess to help overcome the fear of getting shocked.

barn67 | @barn67 | Jun 27 1:24pm

Sorry to hear this.
Do you take any medication for heart rhythm ?I also got shocked 7 times in one Afib/vtac storm.
I have had my defibrillator/pacemaker installed 2016 all was fine with meds until last year when I got shocked. I am 67 years old. Yes It took me a long time to get over it. Still when I have PVC or PACs my head starts going is it going to happen again(shock). I did have an ablation right after that because Afib was triggering Vtac and my heart would start racing. This pass year has been tough but no more heart racing just PVCs I do worry but learn to deal with it. Check with your Cardiologist or a EP doctor.

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