Only 28 Years Old

Hello Friends,

For the past year or so I had been waking up in the middle of the night and fainting. I would get up to use the restroom - and by the time I got back to bed - my heart rate would tank and I would lose consciousness. On July 7th, 2021 I went in for a Tilt Table Test. During my procedure my heart rate plummeted into the 20's, my blood pressure was so low that the machine could not read it, and my heart paused for 20 seconds. The surgeon came in and told me I needed a pacemaker and that he could do the surgery that afternoon. It was a lot to take in and I was extremely overwhelmed and terrified after the events that had just taken place. I opted for a pacemaker and now here I am - 4 days post op. I have been a CrossFit athlete for 10 years and was working as a CrossFit coach before my surgery. I am only 28 years old and I am having a very difficult time accepting the reality of my situation. I also have a bucket list that is 3 miles long and I am afraid I won't be able to do any of the things on my list. I could use some words of encouragement! Thanks everyone(:


6 Comments

The emotional impact is huge - and having no time to mentally plan before implantation is tough

by crustyg - 2021-07-11 12:01:39

I think that there are several themes here that need exploring.

1 Simply needing a pacemaker will not prevent you from leading a long, full, active, athletic life.  There are plenty of folk here who are serious runners, hikers, skiers, and still SCUBA dive, fly in - and even pilot - aeroplanes.  The trick is to focus your mental energy on filling the rest of your life with the goals and bucket list items that you have planned (and will need to save up for), because the less you worry about your heart the happier you will be.

2 The reason for the PM was the 20s pause - not the dramatic drop in BP.  20s of no heartbeat is very close to no heartbeat at all, and Game Over.  Try to see the PM as a little box that will save your life - which you are planning to fill with fun, achievements etc.

3 There are folk here who have tilt-table proven orthostatic hypotension - start searching (using Google) for their posts.  It's not fixed with a PM.  Some more work/treatment is probably needed in this area.

4 There is a condition, which you probably *don't* have, micturition syncope.  It usually happens in folk who tend to run a low BP.  The unconscious nervous system that tells the bladder to hold in the urine is the sympathetic system - the one that prepares you for fight or flight, and increases BP.  You go from lying flat, in bed, BP OK.  You wake, stand up, blood pools in your legs and the venous return to the heart drops sharply, so each heartbeat produces less output *but* the sympathetic drive holding it in makes each beat much stronger, so BP stays high enough.  Then you're in the bathroom, and the parasympathetic system takes over =>bladder empties.  But the extra support to the BP also stops, BP crashes and you faint. Tends to be much worse in men - standing up to pee.  It's not great to wake up next to the toilet bowl with a sore head from hitting something as you fall - I know, it's happened to me.  Sitting down to empty the bladder at night is much safer (as well as usually cleaner and less messy).

Focus on the List (try to avoid labelling it Bucket at this stage!): you have plenty of life ahead of you.

Thank-you!

by taywal93 - 2021-07-11 13:22:11

Thank-you Crusty!

Your post helped to EASE my mind! I look forward to 'checking things off my list' as soon as I am able (:

Have a wonderful day! 

I just wanted to second what crustyg has said.

by asully - 2021-07-11 14:10:29

I was 29 when I got my pacemaker, albeit for very different reasons.  But he is very much right that a pacemaker does not stop you from doing all the active things in life, in fact your likely a little safer with your new device on board!  Once you recover from surgery you will be able to get back to CrossFit, hiking, weightlifting, and just about anything you want to do (barring you don't have other medical conditions that might prevent you).  My first 3 years with a pacemaker I worked out 2 hours a day 5 days a week, lifted free weights with the boys, went rafting on the river, took hikes, went camping, rode my bicycle everywhere instead of driving, traveled across the country several times, I think you get the idea.  For many people, especially young folks, having a device implanted can be much scarier than it should be.  Hang around this club a bit and don't be afraid to ask questions and I think you will find many people who have gone through similar stories to yours and lived a full and happy life on the other side.  Their stories can be comforting and inspiring!

keep living your life

by Tracey_E - 2021-07-11 16:06:15

I've been paced since I was 27, which was in 1994 (different reason than you). I've been doing Crossfit for 10 years, hike or ski most vacations, kayak, love ropes courses and ziplines, ride roller coasters. Being paced doesn't slow me down at all. I do what I want and live a full, active life. 

As crusty pointed out, sometimes the pauses are only half the problem, the pacer can't control the blood pressure. 

It takes some time to wrap our heads around it so it's ok if you take some time to adjust. Know you are not alone. You might be the youngest in your doctor's practice but around here you're fairly average. We have members who are your age and have been paced since birth, some like me who got them at your age but have been paced for 20 or 30+ years, as well as the more stereotypical older patient. If you have questions about living an active life with a pacer, ask away. 

Thank-you!

by taywal93 - 2021-07-11 17:51:23

Thank-you asully and Tracey!

Once my surgical site heals (and I don't have to look at my huge bandage eveyday) it will be easier to cope and get back to a normal active life. 

I have found this forum to be very comforting. 

being active again

by Tracey_E - 2021-07-12 09:36:41

It gets a lot easier to stop thinking about it all the time when we feel good again and can be active! You'll be there before you know it. 

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Sometimes a device must be tuned a few times before it is right. My cardiologist said it is like fine tuning a car.