Pacemaker recipients: Looking for support from others

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!

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.

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.

I got my first pacemaker in 1992 because of complete heart block/bradycardia. I received 3 more in 1997, 2004 and 2010. They were better and better each time and the batteries lasted longer and longer. I never had any real issues other than getting use to having your heart beat only because of a small machine in my chest. I have been 100% paced in the atrium and ventricle for many years now. After a relatively simple history, everything changed in 2018 when I had an episode of ventricular tachycardia and my heart rate shot up to 480 bpm and I was almost unconscious. The ambulance arrived and they worked on me for 45 minutes to get my heart rate down enough to head to hospital. 10 days and many tests later, I had a new machine put in—a CRT-D which has a pulse generator, pacemaker, debrillator, and cardiac resynchronization modality. I have had 3 minor attacks since, but the CRT has 17 modalities that immediately go into effect to try and restore a normal rhythm. So far it has worked 3 times. But I will tell you that I have had what I call PTSD since knowing I could be shocked at anytime or die of cardiac arrest. I am 70 years old now. The CRT comes with a monitor that I placed by my bed. It tracks every beat and the green light turns yellow or red depending on issue and I can talk to someone on call whenever that happens, It notifies my dr too and I go to the heart clinic the next day or ER immediately. They can do an EKG transmission over the phone and I am glad to have this free equipment, though the CRT-D cost $130,000. My advice to you is get a great dr who is a cardiac dr and a top notch electrophysiologist and relax. Pacemakers are wonderful inventions and people like you and me wouldn’t be here without them. I thank God all the time that I live in this day and time. I take Metoprolol, Amiodarone, Eliquis and Lisinopril as well as meds for reflux, type 2 diabetes and peripheral neuropathy. Would love to hear others experience with CRTs. God bless you. Beckie

Pacemaker in 2017 after two years of parox Afib. That was a brutal two years. Felt I was going die with each episode. My heart would quit beating while trying to get back into rhythm. Awful! Had an ablation and them my cardiologist told me my heart was way too slow. 45 to 60 most of the time. So I had a pacemaker put in. I was 65 and felt my life was over. But my pacemaker has made me feel like my old self. A few skips and flutters with my heart but 99.9 percent of time I feel great! Have no regrets at all!

I had a pacemaker implanted about one month ago. It is a Boston Scientific Pacemaker, demand type. My pulse was about 45-55 for many years. Recently I developed HOCM (hypertrophic cardiomyopathy) . My pulse never went up even when I exercised. I also have a Lattitude monitor by my bed that connects with Boston Scientific and my cardiologist daily. If there is a problem. It tells my cardiologist there is an issue. My normal life has resumed

I reluctantly got a pacemaker 12/23/19. One week check up said it was working about 18% of the time. I had bradycardia below 60 and MD thought pauses would lead to fainting. How has yours worked?

This is true for so many of use! The heart wants a calm life, no alcohol, no caffeine, no smoking, and not too much stress or too much work. The heart will tell us what is "too much" since we're all different ages and have different health situations. Those of us who are retired with already grown families have an easier time of doing just what the heart prefers! Life is usually hardest for younger people. It's good if we can help them out.

I have a pacemaker for six years from total heart and then bradycardia one thing that took me almost four years to figure out is the triggers that cause aarythms. Most important for me was alcohol in any form and any amount caused that not right away but late after I had gone to bed. Also caffine - drink only because now, also stress getting too hot or really angry

Have posted here before. Had total heart block , level 3 In 2013 sinus quit working. Dr told me that I would have been dead had I passed out. I have bradycardia.,
Have major changes in lifestyle. Found several things that cause aarytems Now avoid them I now have a latitude ( little box that lab worker transmits data from at different times without disturbing me) in my den hooked to internet all the time. One word of caution exercise can cause blood pressure to go down too far u need to avoid this, mine could go below 100/40 now with lifestyle changes my aarythems ate less than 1 pct. I feel good