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