1. < Heart Rhythm Conditions

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.

bill54321 | @bill54321 | Feb 11, 2020
In reply to @danab "Here's my story A little background on me back in 2008 I caught a virus that..." + (show)
@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.

REPLY
1 reply
AFRobin | @afrobin | Feb 11, 2020

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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Mentor
Dana, Volunteer Mentor | @danab | Feb 11, 2020
In reply to @bill54321 "I am a little confused . Demand pacemakers usually are set at a level. Mine is..." + (show)
@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.

Jump to this post

@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.

REPLY
1 reply
bill54321 | @bill54321 | Feb 11, 2020
In reply to @danab "@bill54321 you have a rather unique pacemaker. I only had mine checked for battery level maybe..." + (show)
@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.

REPLY
1 reply
shortshot80 | @shortshot80 | Feb 12, 2020
In reply to @danab "Here's my story A little background on me back in 2008 I caught a virus that..." + (show)
@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.

Jump to this post

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)

REPLY
3 replies
mayofeb2020 | @mayofeb2020 | Feb 12, 2020
In reply to @shortshot80 "Congratulations.......The Lord has helped you recover! Don't know how old you are but that doesn't matter....My..." + (show)
@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.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 12, 2020
In reply to @shortshot80 "Congratulations.......The Lord has helped you recover! Don't know how old you are but that doesn't matter....My..." + (show)
@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?

REPLY
Mentor
Dana, Volunteer Mentor | @danab | Feb 12, 2020
In reply to @shortshot80 "Congratulations.......The Lord has helped you recover! Don't know how old you are but that doesn't matter....My..." + (show)
@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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Hi Nancy, ill be 61 next month and thank you for the words of encouragement.

Dana

REPLY
1 reply
shortshot80 | @shortshot80 | Feb 12, 2020
In reply to @bill54321 "No one should have to go through the misery you have. God bless you also." + (show)
@bill54321

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

Jump to this post

Bill4321 Thank you, It has been tough this whole last year. Getting somewhat better. I have my church people to be there when needid.. Thats a plus! Nancy

REPLY
shortshot80 | @shortshot80 | Feb 12, 2020
In reply to @danab "Hi Nancy, ill be 61 next month and thank you for the words of encouragement. Dana" + (show)
@danab

Hi Nancy, ill be 61 next month and thank you for the words of encouragement.

Dana

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Hi Teresa, I had the UTI for over a year as all the urine tests came back as"understandable" and not any of the medicines they gave me would work. So I was sent to "disease doc and our OHSU. She couldn't do anything at that time either. So in November my belly hurt so bad I called the ambulance at 1am and went to the hospital. The infection just jumped into my belly and blocked everything from moving. It took the third day in the hospital and they started me on some medicine that they put into my port for nine days. I had to be in the hospital to get it, but could go home till the next day and drive back to the hospital which is 25 miles from me. My son's drove me each day as I can't drive anymore. I have severe oraculard problems. Am doing better now with that and I'm slowly getting better with my broken hip that I did Jan 19 of last year. I will be 87 next month.

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