Pacemaker recipients: Looking for support from others

Posted by balubeje @balubeje, May 25, 2016

I am coming on a year post op having a pacemaker placement for bradycardia. I would be interested in a support group with the same concerns. I think a support network would be so beneficial.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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Yes. Most of the time a nap is refreshing and it doesn't usually interfere with my nightly rest.

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@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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Amen. I not going to waist any time God gives me on Earth. Im not afraid to find out his Kingdom is my home. I Pray i that when im judged that is my destination.

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@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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I think maybe the days of fatigue may be age. I get them too. I think i know exactly what you mean. Complete body fatigue with no rhyme or reason. Un predictable. Is that how yours is?

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@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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I never got depressed either. I did think i eas going to give myself a heart attack worrying about not doing anything. Laying around was the hardest thing. I agree with you. Changing gears to a slower life. I thought would surely kill me. Thank you Dear Lord for allowing me to realize. I was working my life away. Then giving me my life back. After following the Dr's orders for a year. I am a walking miricle. At the very best they said an EF of 40 would be good. Now that my EF is 55. My cardiologist said clearly you have someone above looking over you. He said i can onky do so much and your recovery is not by my work. I always had this feeling God had strengthend my heart. After a Prayer one day in not a pressing way he sometimes make something clear.i thought he did it. He answered my Prayer. I kept thinking its just you telling yourself. Then the results were the proof. I will always believe this eas not just chance.

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@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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Yes I have a very strong healthy heart. Honestly I am assuming that the junctional node is the cause of the pacemaker. Years back-many years back I found out by the grace of God that I was not normal-sad day-I always thought I was-I was put on medication they give to asthmatics and I lost 5 pounds in one week-everything on the inside was speeding up like having my foot on the accelerator. In the end the cardiologist said stop the medication I'll be fine and I went with that. The only time I would have a NSR was if I would cough continuously or be on the run literally-well that's not possible so I lived with it. Junctional node means that my rhythm comes from the junction-in the center of the heart- and not at the top of the heart like NORMAL people. I guess it is one of those it is what it is and no matter how it goes I am in a WIN WIN situation. I'm thankful for the days I wake up and get going and when they day comes and I wake up and have a new address I'll be HOME.

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@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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One of the questions I had during my interview with my EP was depression. I personally didn't have that problem. My biggest issue is fatigue. I was adjusting to retirement life and the pace I had been use to for many years being changed and then the introduction to my PM I haven't figured out the fatigue still. Can't blame it on weight gain that isn't an issue. I am very active but some days I crash and burn in the afternoon.

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@colleenyoung

That's a great place to start @balubeje. To tag a particular member, simple add their @username (including the @ symbol) in your message. Like I tagged you in this message.
@balubeje what internal sensations from your pacemaker unsettle you?

@ronbee @jimana @martishka @billmichalski How do you know when something is wrong with your pacemaker? What signs have you been told to watch for?

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Cardiac emzymes. Once you have a heart problem and start meds. Blood clots or kidney problems are possible. Blood work shows cardiac emzyme. Which tell if you heart is struggling or not. So it can indicate a change is needed before complications. I was told they dont push it due to keeping cost down.

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@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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Is your heart healthy other than junctional node. Also is that something that gets worse. Or do you just deal with un normal SR. Im not at all familiar with this issue.

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@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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My ef is 55. Perfectly normal. I had an 80% blocked artery called the widow maker. The right side and SR are still fine. The left side of my heart was damaged pretty severe. My pacemaker uses my SR with one lead. Another lead stimulates the top of my left side. I was told the upper muscle area is hardly used during normal life. So that part is in good shape and now its used by the pacemaker. The third lead is the difb lead. Just in case. I have no trouble going distance on my treadmill or lifting. I know God is with me always. My Faith has been my life long before getting this battery. I also couldnt dance before the pacemaker. Odd that i can dance so well now. NOT just an attempt to agree with your humor. Its nice to be able to hear how others are doing. I personally keep a good outlook and enjoy life. If you know of anyone needing Prayer or just an uplifting positive perspective. Im glad to help in any way i can. I hear some people get depressed post op.

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@colleenyoung

What a great idea @balubeje. A group for people who have pacemakers. I'm tagging fellow Connect members who have mentioned that they have pacemakers. Please meet @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98.

@balubeje why don't you kick off the conversation. What is your primary concern? How has living with a pacemaker changed how you live today?

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I'm due to have a face to face meeting with staff in the next few weeks. I'll ask them about the PT, PTT - Prior to the pacemaker I had a CT cardiac mapping done which the EP wasn't expecting anything to show up but he wasn't excited about a possible surprise-nor was I but that indicated that my heart is strong-my EF is in a happy place-Just can't keep a happy rhythm-must be why I'm a poor dancer-just kidding-well actually that is definitely true. I definitely didn't get any indications to routinely monitor PT, PTT labs. I left with knowing I will go through another placement in 12-15 years as the battery will most likely give out before the heart will. The other oddity
was during the stress test-techs are mum all the way through the test-mine flipped him out but I wasn't concerned as I don't know that I have ever had a NSR I have junctional node. I did have ST depressions but that bounded back. After the test I was being hooked up to a holter monitor for a month-that was interesting ride. I was having 6 second pauses and there is no doubt in my mind God intervened twice. So He's not ready for me yet.

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