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

@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)

Jump to this post

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

Dana

REPLY
@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
@danab

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

Dana

Jump to this post

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.

REPLY
@balubeje

The middle of June I celebrate one year with my new “normal” life style. Years back I was diagnosed with junctional node rhythm and the way for me to have a NSR was to cough all the time, run all the time-literally so it was just accepted I was not meant to have a NSR. In Feb 2015 for several months I felt like my head was just not in the game-like I was in a fog or not receiving enough blood. Consequently I went through a bunch of tests but in Nov 2014 at my physical they couldn’t feel my pulse which started off a series of test-I ended up wearing a monitor for a month which showed I had 6 second pauses in my heart beating. I have a strong heart, no calcifications, excellent system with a very good ejection fraction-I just have no rhythm. I am also on Metoprolol that I can vary. Yet I go through days where I don’t even realize I have a PM and maybe weeks then I hit a period where it just feels like there is a battle with my heart so I’m not sure if its the PM working so much and the natural heart beat is resting more. Some days naps are my best friend.

Jump to this post

Have had pacemaker for almost 7 yrs. went along for first 4 years having arrythms many nights , skipped beats many nights, was affecting my balance, then. Two years ago startred researching, found out that there are things that triggered mine , like alcohol , any kind and very small amounts ( no more glass of wine before dinner) . Getting too hot working yard, getting too upset over things . Started to chsnging my lifestyle to try to avoid these things, now my pacemaker dr says that I have arrythms less than one percent of time. They also gave me a latitudes ( small machine that is connected to internet all the time, is on network but not active, the dr checks in on my pacemaker automatically from time to time without my even knowing) AFib never goes away, but it less active.

REPLY
@exboater

Have had pacemaker for almost 7 yrs. went along for first 4 years having arrythms many nights , skipped beats many nights, was affecting my balance, then. Two years ago startred researching, found out that there are things that triggered mine , like alcohol , any kind and very small amounts ( no more glass of wine before dinner) . Getting too hot working yard, getting too upset over things . Started to chsnging my lifestyle to try to avoid these things, now my pacemaker dr says that I have arrythms less than one percent of time. They also gave me a latitudes ( small machine that is connected to internet all the time, is on network but not active, the dr checks in on my pacemaker automatically from time to time without my even knowing) AFib never goes away, but it less active.

Jump to this post

PS. Caffine in coffee or tea. Decaf coffee now.

REPLY
@balubeje

I read a little from each of the posts you mentioned. Not quite sure how to tag on with them or vice verse. Several of these posts go back several years (2012). I’m really not sure exactly what I am expecting to learn just thought there must be others who have/had similar reasons for a pacemaker as mine and wondered if the healing process, the internal sensations run the same for everyone, how to know if something is abnormal. When to be concerned if there is a when would I know it.

Jump to this post

Pace maker was no big deal. My irregular heart could throw a clot, so the implant was a demand 60. I check with the cardiologist office once a year for a produce tech who does some test and battery life.. I have mine 8 years and battery still good for 10 more. I am 90 yrs old. The tech goes into surgery to turn it off.. They did not have to turn it off before neck surgery, but came and tested me an hour before surgery. I do not know it is there. Big deal. I have 2 total knees, C3-4 fusion, L3-4 fusion and a nail for the Talus, calcaneous ankle. I am active in the gym. Oh! I never knew how much I needed one, until I had it. My energy level doubled. Love your heart. Keep it happy with exercise and diet that opens the blood vessels . My heart is my best friend and I respect its needs.

Liked by patriciao

REPLY

I had a pacemaker dual chamber in January due to my heart stopping. I have since in the last 10 days experienced low blood pressure tachy. I was placed on beta blocker which landed me in the er due to heart rate dropping to 47. Echocardiagram comes back normal also blood test along with ekg. I am currently experience constant chest pains, migraines, shortness of breath and weakness. Can anyone shed any light

REPLY
@balubeje

I read a little from each of the posts you mentioned. Not quite sure how to tag on with them or vice verse. Several of these posts go back several years (2012). I’m really not sure exactly what I am expecting to learn just thought there must be others who have/had similar reasons for a pacemaker as mine and wondered if the healing process, the internal sensations run the same for everyone, how to know if something is abnormal. When to be concerned if there is a when would I know it.

Jump to this post

My doctor said my arrthymia might eventually contribute to a stroke. I had a St. Jude maker pace maker put in under anathesia in the operating room with a team at the Heart Hospital in Alburquerque, NM about 5 years ago. I was aware of the pace maker for about 1 week. Then, I forgot about it . Mine is a DEMAND type set at 60. So, other people have different setting or a different type other than demand. Let me tell you a secret. I felt immediately INCREASED energy. Remembert, I was healthy and had one for prevention. But with the increased energy, think about how much more it would help a patient with more needs

REPLY

@balubeje I had pacemaker put in Dec. 2019: had pain for about a month. I tend to be very sensitive to pain. I check my blood pressure and pressure/heart rate daily with wrist monitor. Have a pacemaker monitor at home, but unless I go in to pacemaker nurse, I am not notified of atrial fibrillation episodes when they come. I had the pacemaker put in for bradycardia, so I wouldn't pass out with low heart rate, but I also have atrial fib and am on blood thinner for it. I have a dual lead pacemaker and have been told 1% working in one chamber and 30% in other chamber. When my PCP put her stethoscope on it to check my breathing, she was surprised I jumped, because it can be sensitive if pushed on. As best as I can tell it is working, given I haven't passed out or fallen since on it. When my heart would have been pausing (bradycardia), the pacemaker is working to keep the rate up. Wishing you well!

REPLY
@lov

@balubeje I had pacemaker put in Dec. 2019: had pain for about a month. I tend to be very sensitive to pain. I check my blood pressure and pressure/heart rate daily with wrist monitor. Have a pacemaker monitor at home, but unless I go in to pacemaker nurse, I am not notified of atrial fibrillation episodes when they come. I had the pacemaker put in for bradycardia, so I wouldn't pass out with low heart rate, but I also have atrial fib and am on blood thinner for it. I have a dual lead pacemaker and have been told 1% working in one chamber and 30% in other chamber. When my PCP put her stethoscope on it to check my breathing, she was surprised I jumped, because it can be sensitive if pushed on. As best as I can tell it is working, given I haven't passed out or fallen since on it. When my heart would have been pausing (bradycardia), the pacemaker is working to keep the rate up. Wishing you well!

Jump to this post

I appreciate what you are going through. Although my pace maker is different, let me make a few suggestion from 5 years with a loving pace make. 1) When ever you are due in 6 months to see your cardiologist, make sure you keep OR 2. make that appointment. They will connect to the pace maker with one electrode and a weighted strap that goes over the shoulder, with the forward part over the pace maker. It will give the information about how the pace maker is working. ALSO,3. it will give you an estimate on the life of the battery. BE advised, 4. whenever you need an MRI( X-ray image) you must do it in the HOSPITAL where a company tech or Hospital tech can read the pacemaker and tell the doctor whether you will need to have the pace maker turned off before the MRI OR during surgery. This 5.does not take long and is usually done just before a procedure. (I went to an out patient radiologist and was refused) Give your pacemaker friend a little time to work; give him a little praise. Ha. After all, he is saving or improving your life.

REPLY
@lov

@balubeje I had pacemaker put in Dec. 2019: had pain for about a month. I tend to be very sensitive to pain. I check my blood pressure and pressure/heart rate daily with wrist monitor. Have a pacemaker monitor at home, but unless I go in to pacemaker nurse, I am not notified of atrial fibrillation episodes when they come. I had the pacemaker put in for bradycardia, so I wouldn't pass out with low heart rate, but I also have atrial fib and am on blood thinner for it. I have a dual lead pacemaker and have been told 1% working in one chamber and 30% in other chamber. When my PCP put her stethoscope on it to check my breathing, she was surprised I jumped, because it can be sensitive if pushed on. As best as I can tell it is working, given I haven't passed out or fallen since on it. When my heart would have been pausing (bradycardia), the pacemaker is working to keep the rate up. Wishing you well!

Jump to this post

was of opinion pacemaker intended to resolve afib. This apparently not the case?

REPLY
@elwood

was of opinion pacemaker intended to resolve afib. This apparently not the case?

Jump to this post

It has more uses than just a demand feature like mind. You would have to talk to others

REPLY
@cupcake1979

I had a pacemaker dual chamber in January due to my heart stopping. I have since in the last 10 days experienced low blood pressure tachy. I was placed on beta blocker which landed me in the er due to heart rate dropping to 47. Echocardiagram comes back normal also blood test along with ekg. I am currently experience constant chest pains, migraines, shortness of breath and weakness. Can anyone shed any light

Jump to this post

@cupcake1979 Hi and welcome to connect. I'm sorry to hear you are having some pain from your pacemaker I also had a pacemaker a while back for about 10 years but mine was for fast heart rate called Tachycardia. I would suggest some of the pain is from the initial surgery to put it in. I remember when I first got mine I had to take it easy for a few months while everything healed. Are you feeling better now that a few months have passed? Plus also how it works is different for everyone and can take some time to adjust it for your particular symptoms. If it is still bothering you I would get with your ep cardiologist so they can make adjustments. On the other symptoms your having make sure you tell the doctors so they can be addressed. Good luck and please let us know how you make out.

Have a Blessed Day
Dana

REPLY
@elwood

was of opinion pacemaker intended to resolve afib. This apparently not the case?

Jump to this post

@elwood Hi I'm not an expert on Afib but have you mentioned your concerned to your EP Cardiologist? Pacemakers have lots of adjustments and maybe just some changes could work better for your condition I remember having mine adjusted regularly to solve issues. So I would suggest asking about how we could get it working better. Let's us know how you make out. And have a Blessed Day
Dana

REPLY
@danab

@cupcake1979 Hi and welcome to connect. I'm sorry to hear you are having some pain from your pacemaker I also had a pacemaker a while back for about 10 years but mine was for fast heart rate called Tachycardia. I would suggest some of the pain is from the initial surgery to put it in. I remember when I first got mine I had to take it easy for a few months while everything healed. Are you feeling better now that a few months have passed? Plus also how it works is different for everyone and can take some time to adjust it for your particular symptoms. If it is still bothering you I would get with your ep cardiologist so they can make adjustments. On the other symptoms your having make sure you tell the doctors so they can be addressed. Good luck and please let us know how you make out.

Have a Blessed Day
Dana

Jump to this post

@danab Hi I have had 3 ablations for afib, aflutter and tachycardia over the past 3 years and my EP has mentioned that I may need a pacemaker. Did you have to take high doses of betablockers along with your PM? Also you say you had a PM for ten years…. Sounds like you were able to have it removed, so how did that work?

REPLY
Please login or register to post a reply.