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?

Jump to this post

I'm not sure I feel the tug on my heart muscle more so at the pacemaker insert site occasionally. When my pacemaker was placed my restrictions included not putting my arm up over my head and if I remember correctly I didn't sleep on my left side. I had weight restrictions and wasn't to lift my arm over my head. Those were 6 weeks post insertion. 3 months was no swimming. My biggest adjustment was the medication and they allow me to play with it. I think I am finally at a happy place with that. When I have to "report in" every three months I don't notice anything out of the norm during the reading event. When I have an event it feels like my heart beat is running over each other-don't know how else to describe that. Sometimes it is a short event and there have been times when it was out of sync for days but I had this action going on before the pacemaker and I think once the medication and I got into sync that has been less and less an event until we went through Wyoming recently and then I attributed that to the higher altitude. Hope this is helpful. I am 16 months post insertion.

REPLY
@bibi12

I'm a new pacemaker recipient. I'm so new to heart disease and pacemaker surgery a support group would be wonderful

Jump to this post

I am just now seeing this post. I really don't want to say welcome aboard but welcome aboard. This is a good place to learn, share and if need be pray.

REPLY
@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?

Jump to this post

I'm one of those who doesn't have high blood pressure I'm probably one who gives it-lol. So I can't speak to bp medications. I did get dizzy once in a while felt like my blood wasn't flowing all the way up to the top of my head was the analogy I shared with my PCP that got all this rolling in the first place. As for the big bump-I thank God often that was an option and I'm totally okay that I don't have a
defib but should that come to be I will says thanks to the Almighty that is also an option.

REPLY
@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?

Jump to this post

I too give thanks and Praise to our Almight Father. I do not worry because he is with me always. Thank You for giving God Praise. I am curious and enjoy reading others stories. Hearing what they feel and expierience. Its nice to have this site learn get others perspective.@balubeje Thank You all for welcoming me and for all the replies.

REPLY
@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?

Jump to this post

I stricly followed the same directions. Hands not above head and the rest. I have had awesome results. Each test confirms all leads are still in and working. Im just curious if a person could actually feel a tug from the leads. I think i have. Its not a problem. Im just exploring all areas of this experience. I feel great all the tine and have been so Blessed. Thank You for the response.

REPLY
@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?

Jump to this post

The answer to my post about blood work. Blood trst give cardic emzyme levels. Once you have heart trouble and take meds. There is a risk of blood clots and kidney function. Cardiac emzymes tell if your heart is struggling or not. So monitoring this can let you know ahead of time if changes are present. PT. PTT This information was explained to me by a Phisician. That stressed you have to push for it. To keep cost down its often put off.

REPLY
@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?

Jump to this post

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.

REPLY
@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?

Jump to this post

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.

REPLY
@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?

Jump to this post

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.

REPLY
@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?

Jump to this post

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.

REPLY
Please sign in or register to post a reply.