Pacemaker recipients: Looking for support from others

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 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

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.

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.

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!

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.

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!!

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.

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.

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.