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.

@danab ah, I understand. So thankful you were able to work with the pacemaker and then get the transplant.

REPLY
@ala123

@danab ah, I understand. So thankful you were able to work with the pacemaker and then get the transplant.

Jump to this post

Nancy /shortshot....... I had my first pacemaker in 208 sencond one december of328 Tjeu ;ast fpr 10 years. My doc is great and he keeeps me ticking. I have to transmit to hime every three months and if there is anythng out of order he calls me and I go in. So far nothing has be out ot order.

REPLY
@danab

@ala123 well in my case my heart got worse to the point that meds would not keep me under control and my pacemaker was having to give me shocks(mine had a difibulator) to often to regulate me so I ended up getting a Heart Transplant which also meant my pacemaker was not needed anymore. But don't let that worry you I have known many that lived a very long life with meds and pacemaker only. At first my pacemaker did very well and I had a very nice life with no issues. I did have a couple of ablations also but towards the end they were not helping and that's when I was evaluated for a Heart transplant. But I still am thankful for the additional year's I had working with the pacemaker and got me to a point where I could retire since my old work I could not still do with a transplant.

Jump to this post

I think you are a very couragous person. I am a 90 yr old Korean Aidman veteran. I appreciate you!

REPLY
@shortshot80

pS tHIS IS MY SECOND PACEMAKER. eVERY 10 YEARS YOU GET A NEW ONE. i OLD ONE HAD QUIT MY NEW ONE RIGHT AWAY AND YOU CAN STILL DANCE TO YOUR OWN PACEMAKER. nANCY /SHORTSHOT

Jump to this post

I believe the new batteries have extended the pace makers life. I have had mine 5 years and they tell me not to worry for another 10 years. I do have mine checked every 6 months

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 I am wondering how its going? Its been a couple of months since the pacemaker surgery I prey the problems you are having are subsiding.
Have a Blessed Day
Dana

REPLY
@danab

@cupcake1979 Hi I am wondering how its going? Its been a couple of months since the pacemaker surgery I prey the problems you are having are subsiding.
Have a Blessed Day
Dana

Jump to this post

My pacemaker surgery was one week ago. This is my first experience and came as a surprise since I had no previous issues with my heart that I knew about. Turns out I have an electrical issue with my heart that is described as a heart block. I am concerned because the placement of the device seems to be sitting on my collarbone and makes it painful for me. Will the pain go away?

REPLY
@hilanjd

My pacemaker surgery was one week ago. This is my first experience and came as a surprise since I had no previous issues with my heart that I knew about. Turns out I have an electrical issue with my heart that is described as a heart block. I am concerned because the placement of the device seems to be sitting on my collarbone and makes it painful for me. Will the pain go away?

Jump to this post

@hilanjd Hi and a week it's still probably a bit early for there not to be some discomfort. I remember with my first placement they actually build a small pouch of sorts on the inside to place the pacemaker in kinda like a shirt pocket of sorts. Now mine was placed about 4 inches down from.the top of my shoulder and almost directly above my left breast now im a man and I don't know if it's different for the Ladies based on mammary glands but also it takes about 6 weeks to heal. I remember that the first 6 weeks I was told light duty, no lifting more that 10 lbs and not to raise my arms over my shoulders.
I do remember how painful it was the first couple of days especially when they did an ultrasound to verify the placement. The tech had to dig that probe into my shoulder and it was intensive for a few minutes. On.thinking they usually probably did that part while your still sedated but I was fully awake and felt everything. So I hope that helps and if it botheres you too much longer I would definitely give your doctors call.
Now one other thing ill mention is mine was also pretty large since it had a defibrillator also it probably measured 3 x 2 inches in dimensions so it would sometime itch a bit and I would kinda move it around a bit to scratch it. It wasn't constant but happened occasionally.
Have a Blessed Day
Dana

REPLY
@hilanjd

My pacemaker surgery was one week ago. This is my first experience and came as a surprise since I had no previous issues with my heart that I knew about. Turns out I have an electrical issue with my heart that is described as a heart block. I am concerned because the placement of the device seems to be sitting on my collarbone and makes it painful for me. Will the pain go away?

Jump to this post

Thank you so much for words of encouragement. It is still early in this whole process so I will try to keep my expectations low right now. I am using an ice bag right now to try and help with swelling. I have to go back to the doctor in a week for a wound check. The bandages were removed today and there are still a couple of small areas that need to heal.

REPLY

I am new to this forum. Had an ICD placed in November 2020. It’s been huge adjusting to not only the new normal, but the side effects of all the drugs. I’m on metoprolol and amiodarone. The first few months were pretty rough, but things are gradually getting better. Some of your success stories give hope that life will return to somewhat of a normal..

REPLY

I am a long hauler I've had a pacemaker battery dependent for almost 42 years and have had 8 battery changes. I worked in a woodyard for International Paper for 32 years (now disabled for 10 years). I am a poster child for wearing a seat belt, I had a wreck when I was 21 and at 22 had damaged my SA node and it is completely gone, December of 1979 I had my first, a single chamber pacemaker put in it was set to 80 beats a minute no matter what I was doing. I have a dual chamber pacemaker since 1987. Then in September of 1989 one of the lead wires was bad and had drained 55% of the battery in 15 months so they capped off that lead wire and ran a 3rd lead wire in the subclavian vein and I threw a blood clot in that area. It is still totally occluded but the small capillaries have taken over the blood flow in that area. 2015 I was diagnosed with a large ascending aortic aneurysm but it is stable but non operable(last checked 6/8/21) . April of 2018 I had fever for 23 days straight and during that time I also had my first heart stent placement. I have been deteriorating since the fevers. I have a team of 14 Doctors at Vanderbilt and they referred me to Mayo after over 2 years of trying to figure out what is going on... September of 2019 I had a MRI of my head and chest/abdomen. Finally in April of 2021 I made it to Mayo (covid) I received a lot of information but still no answers YET. The Neurologist at Mayo recommended neuro genetic testing and a MRI. The genetic testing would hopefully point them in the direction to look for diseases that has to do with central nervous system and the MRI of the head and spine to confirm the findings or help in making a decision in diagnosing. Here is the problem, after returning home, 3weeks later. Mayo CALLED and had scheduled for me to come back in August for 2 days of MRI's because of too much radiation for one day and to see the Neurologist for the results of all test. We booked our flights room, and car rental plus time off work for my wife to return in August. Everything was set (or so I thought) It takes a while to schedule a MRI for pacemaker patients because they have to have a team with you including a cardiologist. They have had my medical file 3" thick which includes information about my pacemaker, my last interrogation, stent, and a copy of the MRI from 2019 before arriving in April 2021. June 7, 2021 i get a message on patient portal the cardiologist cancelled my appointment in August because I have a "special pacemaker". I was told to have the MRI done locally!! I was furious and posted on this Mayo Clinic Connect site and received help. Thank you Deanna... (I can no longer see my post?? It appears it has been deleted.) Well by Friday Mayo changed again and will do the MRI after i have been evaluated by the Cardiologist. I have no problem seeing the Cardiologist there (I ask to see a Cardiologist while being there in April) I totally agree but that doctor gets to decide if they proceed with the MRI. I was then told I could make the trip and still not get the MRI. I was told they would reinstate my appointment for me after seeing the Cardiologist that day. Today I was told to come in August to be evaluated by the Cardiologist and if approved they went ahead and scheduled my MRi for Sept 2.2021. What happened to reinstating my appointment after seeing the Cardiologist at the August appointment same day? Really, it has been a sacrifice for me and my family to make the first trip but I am desperate for answers not to say the toll it has on my body to make this trip but to return 2 more times because YOU cancelled the appointments and sent it in a message instead of calling and waiting to see what could be worked out!!! ( My appointment is with a different cardiologist not the one that cancelled the appointments) I will be in a wheelchair in 6 months to a year if we can't figure this out. I fall weekly because of balance issues peripheral neuropathy from feet to knees and hip, cognitive and memory problems. I pray I can get the help I need and soon~~~

REPLY
Please sign in or register to post a reply.