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.

@kanaazpereira

Hi @bonniecanby,

There are a few Connect members who may be able to provide some insight; please meet @martishka, @guardian, @bevmaier, @gonefishinmt.
Bonnie, could you give us a few more details? Do you have afib, even after the ablation was done?

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You have a good outlook. I discovered my cardiomyopathy by happenstance as Weill. Had the pacemaker put in just over a year ago. I'm 53 now but trying to keep the same outlook

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First, I was so happy to find this last night that I didn't get to sleep till after 4 this morning! Read every post time and time again.? It's comforting to be able to see what others have gone through, and are dealing with. My experience with my pacemaker.

Two days after I turned 62 February 2017, I was admitted to the ER for a slow heartrate, upper 20's and lower 30's. Talked with the Dr the next day and he explained that I needed a pacemaker. Thursday morning, had the pacemaker implanted, and was released the next day. Other than being sore, I had more energy than I had for a long time. I was on the treadmill within 3 days taking it easy, and was feeling better each day.

Everything was fine till day 9. Had a strange feeling in my chest area that I did not know how to explain. Instead of going back to the ER, I just lived with it, till it began hurting more the next day. Back to the ER, and they found a had I had a blood clot in my left lung. Pain meds, and started on Xeralto.

Two days later I had a normal appointment with my Cardiologist. Got out of the car, and before I got more than 30 feet, I had sever chest pains, and trouble breathing. If I tried to get more than a fraction of air in my lungs, the pain was just terrible.

More test, x-ray, cat scan, and ct scan. The surgeon hooked me up to see exactly what was going on. The pacemaker was working, but wasn't having any effect on my heart. He contacted the Medtronic rep, who was in another town and he drive in and confirmed with the Dr that the lower lead had migrated through my heart. Asked where he would go and he made a recommendation to Wake Forest Baptist hospital. Now the problem was that I was on blood thinners, and the surgery had to wait for at least 48 hours.

Wednesday night they loaded me in an ambulance, and on the way I go. My heartrate was going down in the 20-30 on the 2 hour drive there. The paramedic ensured me that he had everything to take care of me, and he sure did!

Arrived at Wake Forest Baptist hospital, around 10 pm and had a nice long chat with the cardiologist. He said they would be doing the surgery the next morning.

Thursday morning, around 11, I was heading for surgery. From the time we got into the elevator, I really don't remember a thing. 5 hours later I was back in my room. They had to run a tube to the sack around my heart and removed about a cup of blood from where the lower probe went through my heart. Then, they removed the lower probe so they could make sure it did not bleed to much. Once they were satisified with that they inserted another probe in a different location. Drained a little more blood from the sack around my heart and patched me back up.

Two days later I was on my way home. This surgery was tough. Having been cut open twice within 16 days apart in the same spot was very painful compared to the first surgery. Much more swollen that the first time. To this day, I am still very sore, but each day is a little better than the day before.

Back to the ER a week after surgery with chest pains. They said it's from the area around my heart. More meds, and back on Blood thinners. Still felt the pain, but it was not as bad.

A week later at work, I started feelings real bad again. The chest pains started getting worst, so back to ER again. I know most of these people, and they are wonderful, caring, and do everything they care when I'm there. More meds, and steroids to help with the inflammation around the heart. So far, since my last visit, I've had no more chest pains for 4 days, until yesterday.

Got up around 9, and decided to cook breakfast for my wife. She's been worn out from all of this, and I can say it's been hard on both of us. Started cooking, and I noticed a pretty sharp chest pain ever once in awhile.

Took my blood pressure, and it was 151/84 with a heartrate of 78. Every time I felt the pain, I noticed my heart would skip a beat. It would work fine for 10-15 seconds, sometimes even longer, then just skip a beat, and that's when I would get the pain. Had my wife check my pulse without telling her what was going on, and she also felt it over and over again.

Called and left my Dr's nurse a message this morning. Now I'm just waiting on her to call me back.

I'm so sick of going to the ER. Just feel like it's waisting their time. It's not they way them make me feel that way, cause they have taken care of me each time with a smile on their face, and have told me over and over again to call 911 when I'm having problems to avoid my wife having to drive me there.

I'm really thankful to be alive, but having so many problems is taking its toll on me. Hopefully this will be nothing, we will see!

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Bless your heart ,you have really been through the wringer. I'll put you on my prayer list, even if I don't know your name. God knows you and cares about you. May you look back on this one day and laugh!

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Hello @canammick,

Welcome to Connect; thank you so much for taking the time to share your history. What a journey you've been on!

You mentioned that, "I'm so sick of going to the ER. Just feel like it's waisting their time."
Canammick, I'd like to emphasize that feeling like you may be "bothering" your healthcare team, or the ER, could have serious implications, especially with some symptoms where it's difficult for us to know whether they are serious enough or not to need review by your doctor. You are the best advocate for your own health.

While we wait for the other members in this group to join in, I'd like to tag one of our Mentors, @cynaburst, as she may have more insight for you.
You may also be interested in this information from Mayo Clinic, about pacemakers and complications that may arise: http://mayocl.in/2n6AE6y

@canammick, what type of pacemaker do you have?

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@kanaazpereira

Hello @canammick,

Welcome to Connect; thank you so much for taking the time to share your history. What a journey you've been on!

You mentioned that, "I'm so sick of going to the ER. Just feel like it's waisting their time."
Canammick, I'd like to emphasize that feeling like you may be "bothering" your healthcare team, or the ER, could have serious implications, especially with some symptoms where it's difficult for us to know whether they are serious enough or not to need review by your doctor. You are the best advocate for your own health.

While we wait for the other members in this group to join in, I'd like to tag one of our Mentors, @cynaburst, as she may have more insight for you.
You may also be interested in this information from Mayo Clinic, about pacemakers and complications that may arise: http://mayocl.in/2n6AE6y

@canammick, what type of pacemaker do you have?

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@kanaazpereira

Thanks you!

I'll go back to the ER if I really have to, but it just feels like it's a waist of their time. Twice for chest pains after the second surgery, both time feeling completely different. They have truly been wonderful to my wife and I. I will never forget how much they have helped me through this all, and I know I would not be here without their help!

I'm new to all of this, so other than posting now sure how to contact someone.

It's a dual chamber Medtronic pacemaker.

Hopefully they'll get me in sometime today. Maybe it really nothing.

I've read so many different things that it's hard to tell what's actually fact, versus fiction.

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Hello, I'm shortshot80 and I have had a pacemaker (medtronic) for almost 10 years now, am due sometime I think in the next six months. Perhaps I am fortunate, as have not had any problems with mine. I send a report by phone every three months. So far no problems with it. I however have several other problems. I found out a year ago last January that I have lung cancer in both lungs. Plain lung cancer in the right lung and mesothelioma in the left lung. I just found out last Thursday that both had grow some. My pacemaker is the least of my problems. I also fond I have kidney disease. So I can't leap any more buildings. I just turned (84) yesterday. Everything seems to be a little more scary and I can't make any difference in anything I do. Just visit with my church people and my maker. Have a great day!!!

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@shortshot80

I hope and pray that everything works out the best for you. I hope that I'll be still talking with you on here for many years to come. Life is so precious, and sometimes we just take it for granted! I know I have.

Before I went through all of this, I never really gave it much of a thought. Figured I would live to be an old man, much older than I am now. Both of my parents lived to be close to 90.

Today was the best day I've had in the last two months! I am still sore from having surgery twice in exactly the same place within 16 days, but I can finally tell that I'm feeling bette.

I do have a question for everyone, "how many of you have had skipped heart beats with your pacemaker".

My heart will be beating fine, then just skip a beat, and when it happens I get a pain in the center of my chest. It's happened a few days, and it domething to get use to.

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Of course each or our cases is a little different, but I thought for years my heart was skipping beats. I learned later that what was happening was actually a premature beat - either a premature atrial contraction (PAC) or a premature ventricular contraction (PVC). Seeing them on an EKG strip plainly showed that. After the premature (early) beat, the time to the next beat is often a little longer, making it seem like a skipped beat, but the number of beats was the same, at least in my case. Even with a pacemaker I will occasionally have them although there may not be as many or they are harder to detect.

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@shortshot80

Hello, I'm shortshot80 and I have had a pacemaker (medtronic) for almost 10 years now, am due sometime I think in the next six months. Perhaps I am fortunate, as have not had any problems with mine. I send a report by phone every three months. So far no problems with it. I however have several other problems. I found out a year ago last January that I have lung cancer in both lungs. Plain lung cancer in the right lung and mesothelioma in the left lung. I just found out last Thursday that both had grow some. My pacemaker is the least of my problems. I also fond I have kidney disease. So I can't leap any more buildings. I just turned (84) yesterday. Everything seems to be a little more scary and I can't make any difference in anything I do. Just visit with my church people and my maker. Have a great day!!!

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It comforts me to know that your PM has served you well for 10 years. You have 20 years on me and there are times I dread the thought of replacing the battery and being under restrictions once again. Just a little whine there. I am coming on two years with mine. I am encouraged with the different articles that have caught my eye about pacemakers. I am very thankful having a PM was an option. Happy belated birthday. Thank you for making a difference.

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@canammick

@shortshot80

I hope and pray that everything works out the best for you. I hope that I'll be still talking with you on here for many years to come. Life is so precious, and sometimes we just take it for granted! I know I have.

Before I went through all of this, I never really gave it much of a thought. Figured I would live to be an old man, much older than I am now. Both of my parents lived to be close to 90.

Today was the best day I've had in the last two months! I am still sore from having surgery twice in exactly the same place within 16 days, but I can finally tell that I'm feeling bette.

I do have a question for everyone, "how many of you have had skipped heart beats with your pacemaker".

My heart will be beating fine, then just skip a beat, and when it happens I get a pain in the center of my chest. It's happened a few days, and it domething to get use to.

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To hear your description I think I would have to say I do. Not all the time but when it occurs I'm thinking you can cut that out anytime now and I may not experience it for eons and then other times it seems to last for eons. I feel like my PM and heart beat cause a traffic jam.

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