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.

Liked by Solo Act

@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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Colleen–you know me from another board. But I stumbled on to this one and want to weigh in. My daughter was born with major heart defects–single ventricle, transposition of the great vessels, a 12 percent coarctation of the aorta, and an atrial septal defect. She wasn't supposed to live too long, as kids with such complicated hearts usually lived only a few years and never to adulthood. But then a life-saving surgery and a new perfusion machine, which allowed surgeons to operate on as patient much longer, were developed. She had that surgery at Mayo's when she was 11. (The surgery was only done at four med centers in the U.S. at that time.) Three weeks after surgery, however, my daughter, like two-thirds of the kids, developed a post-op rhythm problem, superventricular tachycardia, (SVT) because the surgeons had to cut through the atrial sinus node and the scarring affected the heart rhythm. When she was 14, her rhythm problems exacerbated. Since her one and only ventricle was bradycardic, she had a pacemaker implant to keep her ventricle at a normal rhythm and medications to control the SVT. Seven years later, when the meds were no longer effective, she had two ablations–the first slowed and changed the SVT and the second eliminated it. She still has a pacemaker for the ventricle, and she's had several replacements. She just turned 47 last month, and has had pacemaker for 33 years. She is doing well and lives a normal, active life. She met her husband in their university marching band (Yes, she marched and played a trumpet at the same time.) Now he has his doctorate in music and is the marching band and pep band director at another major university. She designs marching band formations for him and other band directors. Just wanted to encourage the new pacemaker recipients on this board. You can live a normal life with a pacemaker. She got her first one in 1989.

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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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Think you need a pace maker…Run don't walk to get one. I have that common irregular heart since birth.I never thought much about it. My Internist 5 years ago said " you could sling shot a hemorrhage clot in the brain. As a preventive measure, I went to the Heart Hospital in Alburqeurque, New Mexico. They implanted a device to regulate my heart at 60 cycles. When I went home two days later, guess what? Man, did I feel stronger and less tired. I never thought it would make me feel that much better. I typically have a 100-109/over 55-70. Nurses have to take my pressure twice. There are many reasons for a pace maker, but mine does not need a battery for another 8 yrs. I am tested 2 times a year by the cardiologist office. The heart hospital gave me a home unit to put next to my bed. It monitors my heart wireless to the telephone back to the Heart hospital.It cost nothing for this service. I call their vendor when I go out of town. I am not aware of my pace maker unless I feel for it. There is no site pain. I hope this helps others. Oh! If I have surgery, the vendor for the pace maker comes into the surgical area and turns off the pace maker. On other occasions, the rep showed up and said they did not have to turn the pace maker off. But, there was never any inconveniences.

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@annmillercarr

Colleen–you know me from another board. But I stumbled on to this one and want to weigh in. My daughter was born with major heart defects–single ventricle, transposition of the great vessels, a 12 percent coarctation of the aorta, and an atrial septal defect. She wasn't supposed to live too long, as kids with such complicated hearts usually lived only a few years and never to adulthood. But then a life-saving surgery and a new perfusion machine, which allowed surgeons to operate on as patient much longer, were developed. She had that surgery at Mayo's when she was 11. (The surgery was only done at four med centers in the U.S. at that time.) Three weeks after surgery, however, my daughter, like two-thirds of the kids, developed a post-op rhythm problem, superventricular tachycardia, (SVT) because the surgeons had to cut through the atrial sinus node and the scarring affected the heart rhythm. When she was 14, her rhythm problems exacerbated. Since her one and only ventricle was bradycardic, she had a pacemaker implant to keep her ventricle at a normal rhythm and medications to control the SVT. Seven years later, when the meds were no longer effective, she had two ablations–the first slowed and changed the SVT and the second eliminated it. She still has a pacemaker for the ventricle, and she's had several replacements. She just turned 47 last month, and has had pacemaker for 33 years. She is doing well and lives a normal, active life. She met her husband in their university marching band (Yes, she marched and played a trumpet at the same time.) Now he has his doctorate in music and is the marching band and pep band director at another major university. She designs marching band formations for him and other band directors. Just wanted to encourage the new pacemaker recipients on this board. You can live a normal life with a pacemaker. She got her first one in 1989.

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What a story! Bravo to you for seeing your daughter through such difficult times. And bravo to your daughter for surviving and thriving! The miracle of modern medicine!

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@lmclaugh

Support and sharing is a great idea. I will be 4 years post pacemaker in January. Many odd sensations the first 6 months and I was pacing 15 and 27 %. Suddenly at about 11 months post, my pacemaker was pacing about 80% more. I have wondered if the pacemaker itself triggered the dependence. I guess that I will never know.
I also regret not getting a second opinion at the time. I only say this now to encourage others to definitely get another opinion for peace of mind. It is also extremely important to be told that the pacemaker will impact tests (MRI-even if compatible) and increased chance of infection if having a surgery after getting a pacemaker. My Dr did not mention this.
Because of increased pacing and dependence, I get an annual ultrasound to check the ejection fraction and overall heart health. So far, so good. I exercise regularly and have good habits. Getting the PM before age 65 was a surprise and caused some depression. Also my resting pulse used to be around 50. Now it’s always 70-80 and occasionally higher. I don’t like this either but there is little I can do is my understanding.
Thank you

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Something does not sound right. . Mine is set at 60. A temporary change , like after a brisk walki n my walker can alter the rate but at rest, the heart should return to the control of the setting.

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@bill54321

Think you need a pace maker…Run don't walk to get one. I have that common irregular heart since birth.I never thought much about it. My Internist 5 years ago said " you could sling shot a hemorrhage clot in the brain. As a preventive measure, I went to the Heart Hospital in Alburqeurque, New Mexico. They implanted a device to regulate my heart at 60 cycles. When I went home two days later, guess what? Man, did I feel stronger and less tired. I never thought it would make me feel that much better. I typically have a 100-109/over 55-70. Nurses have to take my pressure twice. There are many reasons for a pace maker, but mine does not need a battery for another 8 yrs. I am tested 2 times a year by the cardiologist office. The heart hospital gave me a home unit to put next to my bed. It monitors my heart wireless to the telephone back to the Heart hospital.It cost nothing for this service. I call their vendor when I go out of town. I am not aware of my pace maker unless I feel for it. There is no site pain. I hope this helps others. Oh! If I have surgery, the vendor for the pace maker comes into the surgical area and turns off the pace maker. On other occasions, the rep showed up and said they did not have to turn the pace maker off. But, there was never any inconveniences.

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P.S. The bed side unit is Merlin Home. The Vendor is St. Jude Medical. I take Eliquist 2 times daily. I have back, neck and myoclonus dystonia syndrome issues. A lot of other aging problems put out hearts to task.At 90 yrs old, how lucky I am to have heart!!

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@bill54321

Something does not sound right. . Mine is set at 60. A temporary change , like after a brisk walki n my walker can alter the rate but at rest, the heart should return to the control of the setting.

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When I was on beta blockers (before I actually cured myself after almost 2 years on a high dose of beta blockers), at the gym, my trainer marvelled at how I could run on a treadmill and my heart stayed at 80 bpm, just as it was at rest.

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@afrobin

What a story! Bravo to you for seeing your daughter through such difficult times. And bravo to your daughter for surviving and thriving! The miracle of modern medicine!

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She's a trooper, like so very, very many kids, and now adults, who have congenital heart disease. (CHD). They are fighters and of all the ones we met over the years during her hospitalizations at a major Midwestern medical center (she only had her surgery at Mayo's), nearly all wanted to be treated like "normal" kids. They hated to be treated "special". Of course, Mom here has no input or even a discussion with her now about her medical care now, and I don't pry. I don't think that's my business. It's all up to her and my son-in-law, as it should be. But she is near one of the very best med centers in the South now, and I know she is getting the best of care. That's enough for me.

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Here's my story
A little background on me back in 2008 I caught a virus that caused major damage to my Heart. I was rushed to the hospital barely able to breath when lying down. After a couple of days sleeping sitting up I realized the flu I had was not getting better. I went to the er only to discover that fluid had built ip around my lungs and heart making it hard to breath. After massive doses of IV diuretics they were able to dry me out enough to be transferred to a Cardiac Hospital in Chandler Az. There they discovered I was pretty close to death and recommend a pacemaker plus antiarrhythmic drugs. I left for home with an ejection Factor of 5%. I did recoup from that and for a couple of years felt back to normal. My ef did get up to the 45% range and life was pretty normal. I enjoyed hiking and camping working around the house etc. But it did not last forever. In 2011 i received my first shock from the pacemaker and my cardiologist at that time recommend me see an EP Cardiologist. He recommended that I needed an Heart ablation to find the reason for my heart going into a bad arrhythmia. So he did find some bad paths and ablated them. Things were better but after a year i was still having arrhythmias more than he liked so we did a second ablation. That one was very successful. Things were good for a while but my heart got worse so in 2015 i had a bad set of arrhythmias about 8 shocks before they got my heart to settle down. After about a week and trying different combinations of drugs we got it better but still I would probably need my ablations. Well in Nov of 2017 my heart started having many arrhythmias and after a couple more ablations it was time to look at a heart transplant. My EP doctor recommended me to Mayo clinic to get evaluated. Well after getting to Mayo my heart got even worse. It got to the point that only IV drugs could control my arrhythmias. Well about the end of December 2017 i was put on the list for a heart. Then a miracle happen on January 4th the Lord provided a heart. So on 5 Jan 2018 the surgeon came in and let me know that he was going to pick up my new heart. With the Awesome Support om My Wife and caregiver plus the Prayers of my Church , Family and Friends here i am 2 years post transplant with a bright future ahead of me. Im doing well walking 3-4 miles 5 days a week, Hiking and i'm back on the golf course. Life is looking pretty good.

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@danab

Here's my story
A little background on me back in 2008 I caught a virus that caused major damage to my Heart. I was rushed to the hospital barely able to breath when lying down. After a couple of days sleeping sitting up I realized the flu I had was not getting better. I went to the er only to discover that fluid had built ip around my lungs and heart making it hard to breath. After massive doses of IV diuretics they were able to dry me out enough to be transferred to a Cardiac Hospital in Chandler Az. There they discovered I was pretty close to death and recommend a pacemaker plus antiarrhythmic drugs. I left for home with an ejection Factor of 5%. I did recoup from that and for a couple of years felt back to normal. My ef did get up to the 45% range and life was pretty normal. I enjoyed hiking and camping working around the house etc. But it did not last forever. In 2011 i received my first shock from the pacemaker and my cardiologist at that time recommend me see an EP Cardiologist. He recommended that I needed an Heart ablation to find the reason for my heart going into a bad arrhythmia. So he did find some bad paths and ablated them. Things were better but after a year i was still having arrhythmias more than he liked so we did a second ablation. That one was very successful. Things were good for a while but my heart got worse so in 2015 i had a bad set of arrhythmias about 8 shocks before they got my heart to settle down. After about a week and trying different combinations of drugs we got it better but still I would probably need my ablations. Well in Nov of 2017 my heart started having many arrhythmias and after a couple more ablations it was time to look at a heart transplant. My EP doctor recommended me to Mayo clinic to get evaluated. Well after getting to Mayo my heart got even worse. It got to the point that only IV drugs could control my arrhythmias. Well about the end of December 2017 i was put on the list for a heart. Then a miracle happen on January 4th the Lord provided a heart. So on 5 Jan 2018 the surgeon came in and let me know that he was going to pick up my new heart. With the Awesome Support om My Wife and caregiver plus the Prayers of my Church , Family and Friends here i am 2 years post transplant with a bright future ahead of me. Im doing well walking 3-4 miles 5 days a week, Hiking and i'm back on the golf course. Life is looking pretty good.

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I am a little confused . Demand pacemakers usually are set at a level. Mine is 60 The issue for me is to make sure the battery is normal. I check 2 times a week in the cardiologist office and the vendor tech for St.Jude provides the testing back to the Cardiologist. A shock from the pace maker would indicate a failure that should result in replacement. Leaving a pacemaker that has gone sour in and killing the sensory nerves with abatments is strange to me. Have you considered a second professional opinion. I have had spinal abatements but killing nerves to prevent a pacemaker shock doesn't seem reasonable.I am 90 years old. Please excuse my bluntness. Arrhythmia is not cured. It is controlled by the pace maker to avoid a stroke and with a suitabe blood thinner.

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I don't know anything about pacemakers but I did cure my arrhythmia. I had the worst case of A-fib my cardiologist had ever seen. I didn't have 3 consecutive beats. They were all over the place and I was lightheaded and air hungry. I was put on a very high dose of beta blockers. After 1 year and 8 months, I read that exercise helps arrhythmia and I joined a gym where I went 6 days out of 7 for 4 months for 65 minutes of exercise that included 30 minutes of cardio. Inside one month I was able to reduce my beta blockers to…zero! The cardiologist said it was impossible to cure the arrhythmia and he would see me soon. Well, here we are exactly 25 years later and no arrhythmia. I keep far away from alcohol, coffee, tea, chocolate and any stimulants. If I falter and have let's say…some chocolate or half a cup of coffee, I will often get some blips…and that reminds me to be careful because if I can avoid it, i don't want to deal with a-fib again. And that's my story of how I cured arrhythmia.

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@bill54321

I am a little confused . Demand pacemakers usually are set at a level. Mine is 60 The issue for me is to make sure the battery is normal. I check 2 times a week in the cardiologist office and the vendor tech for St.Jude provides the testing back to the Cardiologist. A shock from the pace maker would indicate a failure that should result in replacement. Leaving a pacemaker that has gone sour in and killing the sensory nerves with abatments is strange to me. Have you considered a second professional opinion. I have had spinal abatements but killing nerves to prevent a pacemaker shock doesn't seem reasonable.I am 90 years old. Please excuse my bluntness. Arrhythmia is not cured. It is controlled by the pace maker to avoid a stroke and with a suitabe blood thinner.

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@bill54321 you have a rather unique pacemaker. I only had mine checked for battery level maybe 1 a year. They are usually only replaced every 5-7 years for battery level. I too was set at 70 but also I was not afib but Vintricular Tacricadia and if pacing did not get me out of an arrithmya them it had to shock me back into rhythm. My pacemaker had a built in defibrillator just like the ones doctors use in an er setting. So i dont think we had the same kind of issue. My shocks were deliberate and saved my life. But they always tried pacing first shocks were only if i basically was on deaths door. Have a Blessed day and may God bless! You.

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@danab

@bill54321 you have a rather unique pacemaker. I only had mine checked for battery level maybe 1 a year. They are usually only replaced every 5-7 years for battery level. I too was set at 70 but also I was not afib but Vintricular Tacricadia and if pacing did not get me out of an arrithmya them it had to shock me back into rhythm. My pacemaker had a built in defibrillator just like the ones doctors use in an er setting. So i dont think we had the same kind of issue. My shocks were deliberate and saved my life. But they always tried pacing first shocks were only if i basically was on deaths door. Have a Blessed day and may God bless! You.

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No one should have to go through the misery you have. God bless you also.

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@danab

Here's my story
A little background on me back in 2008 I caught a virus that caused major damage to my Heart. I was rushed to the hospital barely able to breath when lying down. After a couple of days sleeping sitting up I realized the flu I had was not getting better. I went to the er only to discover that fluid had built ip around my lungs and heart making it hard to breath. After massive doses of IV diuretics they were able to dry me out enough to be transferred to a Cardiac Hospital in Chandler Az. There they discovered I was pretty close to death and recommend a pacemaker plus antiarrhythmic drugs. I left for home with an ejection Factor of 5%. I did recoup from that and for a couple of years felt back to normal. My ef did get up to the 45% range and life was pretty normal. I enjoyed hiking and camping working around the house etc. But it did not last forever. In 2011 i received my first shock from the pacemaker and my cardiologist at that time recommend me see an EP Cardiologist. He recommended that I needed an Heart ablation to find the reason for my heart going into a bad arrhythmia. So he did find some bad paths and ablated them. Things were better but after a year i was still having arrhythmias more than he liked so we did a second ablation. That one was very successful. Things were good for a while but my heart got worse so in 2015 i had a bad set of arrhythmias about 8 shocks before they got my heart to settle down. After about a week and trying different combinations of drugs we got it better but still I would probably need my ablations. Well in Nov of 2017 my heart started having many arrhythmias and after a couple more ablations it was time to look at a heart transplant. My EP doctor recommended me to Mayo clinic to get evaluated. Well after getting to Mayo my heart got even worse. It got to the point that only IV drugs could control my arrhythmias. Well about the end of December 2017 i was put on the list for a heart. Then a miracle happen on January 4th the Lord provided a heart. So on 5 Jan 2018 the surgeon came in and let me know that he was going to pick up my new heart. With the Awesome Support om My Wife and caregiver plus the Prayers of my Church , Family and Friends here i am 2 years post transplant with a bright future ahead of me. Im doing well walking 3-4 miles 5 days a week, Hiking and i'm back on the golf course. Life is looking pretty good.

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Congratulations…….The Lord has helped you recover! Don't know how old you are but that doesn't matter….My dad had heart trouble, but wouldn't do anything about it. He died at 73. I did not have any problems like you. Mine were small almost missed the signs. I saw my doc in a 2008 visit told me I needed the pace maker. Might just as well do it now and get it over with. I will be 87 next month and have had 35 different surgeries. Not proud of that but I'm still alive and have the two different kinds of Lung cancer. The Lord has been my friend for a very long time!Nancy )shortshot80)

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@shortshot80

Congratulations…….The Lord has helped you recover! Don't know how old you are but that doesn't matter….My dad had heart trouble, but wouldn't do anything about it. He died at 73. I did not have any problems like you. Mine were small almost missed the signs. I saw my doc in a 2008 visit told me I needed the pace maker. Might just as well do it now and get it over with. I will be 87 next month and have had 35 different surgeries. Not proud of that but I'm still alive and have the two different kinds of Lung cancer. The Lord has been my friend for a very long time!Nancy )shortshot80)

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All the best to you. Your positive attitude inspires me.

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@shortshot80

Congratulations…….The Lord has helped you recover! Don't know how old you are but that doesn't matter….My dad had heart trouble, but wouldn't do anything about it. He died at 73. I did not have any problems like you. Mine were small almost missed the signs. I saw my doc in a 2008 visit told me I needed the pace maker. Might just as well do it now and get it over with. I will be 87 next month and have had 35 different surgeries. Not proud of that but I'm still alive and have the two different kinds of Lung cancer. The Lord has been my friend for a very long time!Nancy )shortshot80)

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@shortshot80 You are an inspiration, Nancy! That is for sure!!

Just wondering, did your UTI clear up and are you recovered from your hip surgery?

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