New To Club

Hi All 

Just had my pacemaker installed ( A Boston scientific L331) last week and Ive been healing up physically pretty good but whats getting to me right now is the mental brusiing that I received after learning that I had Sick Sinus Syndrome and Bradycardia and needed a pacemaker. I am a depressed and anxious  and worried that I will not be able to get my old life back. I was very active prior to this diagnosis;  lots of exercising, weights, boxing gym, snowmobling, waverunners and traveling active sex life etc.  I am 54 and honestly never saw this coming. Am I on the yound side to be needing a pacemaker?? Im just curious about what some of your thoughts were and how you felt right after your diagnosis and recieving your device?  Im scared and feel like I have a long road ahead of me and now I pretty much have to give up the life I once had. Im also worried about if my life span has been significantly decreased as a result of this.  I need some honest commentary and maybe a little inspiration from my fellow members that have lived through this and have been living with their devices for sometime. 

Im trying to avoid faling into a deep depression here!!!

 

Thanks you all in advance and happy to come onboard. 


12 Comments

misconceptions

by Tracey_E - 2021-01-18 16:15:11

We have members who have been paced since birth and are thriving. I'm 54 also, have been paced since I was 27. This morning I went for a 3 mile run before doing my Crossfit workout (in my driveway, not comfortable being at the box yet). I hike or ski most vacations, keep up with two active kids of my own plus two Girl Scout troops. No one looks at me and sees a heart patient. 

It's normal for the emotional healing to be harder than the physical. It's like being blindsided and it takes some time to wrap our heads around it. But most find that once we heal and get back to our lives and are feeling good again, we forget it's there and get on with our lives. 

Weather permitting, get outside and get some fresh air. There's no reason why you can't go for a walk now. I think fresh air and exercise are the best anti-depressant. For me, the busier I was, the better I felt, and the easier it was to start to trust the pacer to do its job. You aren't giving up anything! It will all be there for you as soon as you heal.

That said, a bit of the blues is one thing. If it gets to the point where the depression is keeping you from enjoying life, it's time to get professional help. Clinical depression doesn't heal itself. 

l,ifespan

by Tracey_E - 2021-01-18 16:22:24

Forgot to address that... there is no reason to think we will live a life any shorter than a person in identical health without a pacer. Not having it would shorten our lives, having it does not. 

You will be fine

by Simon123 - 2021-01-18 16:30:45

Hi Steve, I understand your fears, because I had them too. I had my pacemaker fitted 4 weeks ago after a similar diagnosis to yours, SSS and bradycardia. I was also worried about losing fitness after a lifetime of running, weight training and ball sports. The mental adjustment to your new reality takes some time, and is greater than any physical ramifications, but I have now relaxed mentally as the initial discomfort from my procedure has quickly eased. I am 69 years old, still fit and intend to stay that way. Immediately after the procedure I started briskly walking 3 miles each day to maintain lower body fitness until I start running again soon and weight training a couple of weeks later. My wound is healing well, symptoms of SSS have disappeared and I see no reason why I should not live long and prosper. Yes, I will probably have a visible scar on my chest, but that isn`t important, and the other option, of not having the pacemaker, would be a lot more risky. I think the shock of being diagnosed takes some getting over. No longer pristine! But your/our future should be fine. Good Luck.  

Path forward

by Persephone - 2021-01-18 16:38:53

Hi Steve - I was right around your age at implant a few years ago, and also stunned to learn of my diagnosis.  Had only a matter of hours to prepare for the surgery.  Similar to your experience, the physical healing went well but I kept feeling like I was waiting for the next shoe to drop.  The not-knowing what was to come was a heavy weight, so I started seeing a psychologist who helped me work through the feelings of uncertainty and gave me coping tools.  I had never tried therapy before, and it was one of the best things that happened to me that year, for sure.  Highly recommend that you consider it if it is an option available to you.  Best wishes in your recovery; you've come to a place where there is a lot of support.

Sick Sinus Syndrome and Bradycardia

by AgentX86 - 2021-01-18 16:44:12

It should be noted that Sick Sinus Syndrome (SSS) is a diagnosis, while Bradycardia is a symptom (of, in this case, SSS).

As others have noted, you're certainly not alone and not, by any means, the youngest to need a pacemaker.  Your PM surgery will slow you down for a few weeks or maybe even a couple of months.  After that, you'll be back to normal and afer six months you'll barely know it's there.  We like to say that you know that your bellybutton is there but you don't often gaze at it.  So will it be with your PM.

SSS is the simplest condition that a pacemaker can fix.  After all, a pacemaker can only speed up the heart it really can't do much else.   Since your only problem is that your heartbeat is too slow, it's a perfect solution.  All fixed.

As others have said, this is a surprise for you and can be a little scary but it shouldn't be.  There is no reason to get depressed and it's counterproductive.  Get on with your life.  There is nothing holding you back from what you love to do.  The only thing in your list that could be problematic is boxing.  It's highly unlikely that it'll cause any damage but you'll certainly know it if someone whacks you directly on your PM.  Full contact sprorts are discouraged.  

Steve, was in your exact spot 9 years ago

by jds66 - 2021-01-18 18:19:31

It was 2012, I was 46 and diagnosed with SSS which lead to the bradycardia(and a host of other heart issues after that which I am still battling, mainly heart block and other weird beats)

If truly bradycardia was your only issue, how did you feel before the pacemaker? Were you having symptoms? Me, I was getting some heart block that they worried that I might start passing out, never did though. I did notice I was pretty sluggish, as my day heart rate was in the 40's and at night, down into the low 30's. 

Yes, I waw very active, and still am, but that was not right. I can honestly say that without the pacemaker, I am guessing my heart block would have gotten worse and my sinus/AV node would have probably rendered me more compromised. My guess, I would have probably went so sleep one night in 2013/2014 timeframe and just never woken up again. 

Now, was I able to wrap my mind around this in April 2012? Heck no! I was an active guy, had stuff to do, was the iron man, and yes, enjoyed having sex also, sound familiar? Yes, I was the same guy as you said you are today. 

Now, in Janauary 2021, I am on my SECOND pacemaker, almost 55 now. And, I am active, still have stuff to do, am still an iron man, and yes, even still have sex(with a woman who is my wife no less!).

So, listen to me, this horrible mental early time, you are going to have to ride it out. I had thought in April of 2012 after I got my pacer that I made a BIG MISTAKE. To the point that I even inquired right here, on the Pacemaker Forum of how to get a doctor to REMOVE a pacemaker. 

Fortunatly, that isnt so easy when you have a diagnosed condition. Know this, they did not put that device in you without some good medical reason. Insurance is pretty strict on that, I can tell you my most recent device, the hospital bills came in over $200,000(thank God for insurance)

I didn't sleep more than a couple hours a night for the first 6 weeks after my 2012 implant. I was out of my mind! (sleep deprivation is a horrible thing). BUT, because I had a strong body before the surgery and mentally I just kept pushing through, I eventually got back on the horse. 

Sound familiar Steve? I am you, just in a different time space. 

So, I promise you this. Once you understand exactly what condition and how severe it was, you are going to be thankful you made the choice, or someone tried to prolong your life. 

You are still strong, you can still do active things, in fact, you can probably go out and do some of those right now with your legs. Do that, show yourself that you are NOT dimished. Your life is not less, it actually now may be longer because of this. 

By spring, April or May, please come back here and post that things are better for you. I am betting alot that you are going to have a good story for us. 

Good luck Steve, read the stories people are going to post to help you out. Know that you are going to be okay, in spite of this temporarly turmoil. 

Jds66

by SteveV - 2021-01-18 20:26:15

Hi Jds66

Thank you!!!!!  You are so on point. As im reading your post its almost like I reading the script for the movie of my life right now. Im going to follow your advice and try to do the things you said. It's just scary!! Im afraid to run my heart rate up right now. I feel like it's pounding and it's going to just stop. Im sure its all psychological.

I will definitely stay on the forum and update you in the next few months about how things are going. Hopefully I'll be telling you how great  im working out and about 1 or 2 of my snowmobiling trips upstate 

Ty again 

Me

by Alli - 2021-01-18 21:53:22

Hi Steve. I have had my PM 2 months and 21 days and i am still having some problems with mine. I am only 45 years old but i have hope. I remember my dr told me if my enlarged heart does not get better i may get a heart transplant. So i can hope on that. Then they can take this "stone" out of my chest. :)

Alli

by SteveV - 2021-01-18 23:32:38

Hi All

I hope things work out for you!!!!

Are you having problems with the PM or with your heart or both??

Are you working with your dr to have them addressed???

 

My Reply

by Alli - 2021-01-19 18:09:04

Steve i am having trouble with my PM. Please read some of my post i don't want to go through that again. Right now i am in pain. I hope part of the PM is not coming through my skin. I would give anything to reach my dr but he is either busy or out of town. At least i got my mom taken care of now.

You be fine

by PacedNRunning - 2021-01-23 02:35:24

Hey! I got my pacer at 46 for exercise induced 2:1 block. Exercise of all things! I'm very active. Runner, bike, golf, volleyball, hike and ski. Mentally it sucks when you find out you need a PM. But your life will be no different. Life expectancy is the same as someone without one. After mine, I started walking 2 days later. Running 2 weeks later. With my doctor approval. But I wanted to get back to my life as soon as possible. The way I see it. The pacemaker joined my life.  Not the other way around. The good thing for you is you have bradycardia which means you should not use the pacemaker at all for exercise so you should feel no different.  Because I have heart block. I rely on the pacemaker to pace me 100% while I'm exercising. That takes time getting use to but definitely doable. You have it good as far as exercise. Just ask your doctor when you can resume certain activities and keep on living! 

My Two Cents

by Blacks Bodhi - 2021-01-29 20:42:44

Hey Steve, I'm new too. Though I've had almost a year to get used to it. Our situations are different, so I'll only speak to the issue of hope for normalcy after bad luck resulting in an AICD.

In early March, I survived cardiac arrest which occured in my sleep. Through the heroics of my wife (waking up to it happening) and my 18 year old son (waking up to do compressions), I was put in the hands of first responders who needed 4 shocks with the AED to get a pulse. Miraculously, I survived with no losses (thanks son!) and was discharged from the hospital in a brisk 6 days, just as covid 1.0 was making reservations. I was gifted a single-lead AICD, installed below my left clavicle (instead of under the arm pit) in hopes of preserving my ability to paddle a surfboard.

I felt comfortable to begin surfing again in May. Small stuff obviously, but even small days require sustained paddling and elevated heart rate. On my sixth session back, I had just ridden a wave and was sitting up talking to a friend when "BAM!" my device fired. I knew immediately what it was, but was confused as to why. I felt normal leading up to it. A little out of breath, but that's surfing. As I collected my thoughts, it fired again. Now I was panicked. I began paddling for the beach, at least 50 yards inside, and "BAM" another one. In the few minutes it took to scramble out of the water, I was shocked a total of six times. It wasn't until I made the sand and stopped exerting that my heart rate fell below the threshold of the ICD and it stopped "treating" my fast rhythm.

It turns out, one of my upper chambers had a "short circuit" that caused the ventricles to race. My ICD was set to fire at 180 bpm and I hit 181. It was not a misfire or malfunction. The device isn't smart enough to know what's a good rhythm or bad, it just does the math and reacts. I kept my cool, but it was easily the scariest waking moment of my life. I now understand what PTSD feels like because for a few weeks I feared that next THUMP any time my heart rate climbed. My cardiologist and electrophysiologist(?) both agreed that an EP study was appropriate and could possibly eliminate the offending problem by ablation. It seems to have worked and I've been back in the water without fear or limitation ever since.

In short, I spent much of the year wondering if I'd ever surf (or be active) again. I am lucky, and I recognize that all of our cases are different. But hopefully my story provides some hope. We're all forced to adjust in one way or another. But normacly can be re-found. The first step is remaining positive.

You know you're wired when...

You read consumer reports before upgrading to a new model.

Member Quotes

I have a well tuned pacer. I hardly know I have it. I am 76 year old, hike and camp alone in the desert. I have more energy than I have had in a long time. The only problem is my wife wants to have a knob installed so she can turn the pacer down.