A life of pacemakers since 3 years old. Now I am 44 !!

Hiya, I just randomly found this site and thought I would get in touch with similar people in the same boat.

I am Nik, I have a rare heart condition which is inherited. Both parents are fine but brother died aged 2 and sister has the same. It's a gene on my mums side coupled with a gene on my dad's side. Parents fine, but combine these genes makes me !!! The chances of my parents getting together with the rare gene are a million to 1.

But here I am. I have had pacemakers since I was 3, and treated at the Royal Brompton in London. Shout out to them, as they are awesome!

I have played tennis and squash for the County as a kid despite being 100% reliant on the devices. It has been a bit tough at times, but I am competitive, and never let it stop me.

Now, I am 44 years old. I have kids now too. Loving life.

Just wanting to say hello and stuff and would love to meet others in similar position. 

I am happy and healthy. And never really let pacemakers or this rare condition stop my rock and roll lifestyle.

I was a TV presenter for quiz channels on sky for a while and now I am a photographer and artist.

Please to meet ya xxx love nicola xxx


6 Comments

Hi!

by Tracey_E - 2023-06-02 17:19:10

It's so nice to meet you!! I'm a few years older than you at 56, and I wasn't paced until I was an adult, but other than that we have a very similar history. I'm so grateful to have my pacer, it's the reason why I am healthy and active. 

Welcome, so nice to hear from you

by Gemita - 2023-06-03 03:08:18

Nicola, What a wonderful upbeat message and it is good to meet you too.  Hubby and I both have pacemakers (since 2018).  We live close to London, UK.  

I attend Guy’s & St. Thomas’ Hospital and hubby King’s College Hospital.  We were at King’s College Hospital yesterday for hubby’s pacemaker check.  It seems he still has possibly another 7 years battery life remaining which sounds amazing.  My battery is only expected to last another 3+ years but I have dual chamber pacing and hubby single chamber pacing.  The Royal Brompton is a great hospital to be under, so I am shouting out to them too.  You couldn’t be in better hands.

We are both much older than you so not nearly as active but our pacemakers have made a real difference to our quality of life.  I see you have children.  We now have two “great” grandchildren and thanks to our pacemakers, we hope to watch them develop for a few more years xx

Jey

by Nikster78 - 2023-06-03 03:54:11

@gemita @tracey_e

How lovely to meet you both.

Science is incredible isn't it. If it wasn't for the brilliance of science and the fabulous doctors I wouldn't have made it past 3 years old !! And I am here... paced all my life so I know no different. Lovely to meet you and loads of love xxx

What a positive post!

by Baban - 2023-06-04 15:46:50

Glad to know that you are doing great. I had my pacemaker implantation surgery done 1.5 months ago and I was super anxious about my situation. I am 28 years old. I am still kind of worried about my situation but luckily found this group. This group has given me so much positivity. Cheers to this group! What a fantastic initiative. I just want to ask you , what problems you have faced as an adult with a pacemaker? 

Nice!!!

by dwelch - 2023-06-08 01:21:25

I/we sometimes talk about folks like you. I was diagnosed pre-teen and first pacer at 19.  CCHB.   35 years of pacers you have me beat.  There is a gentlman here that started later in life but has 40 plus years as well, those big hockey puck sized ones like your first one may have been.

Happy you found us, I could probably ask a zillion questions, but wont bother.  

Sometimes we get parents here, being both the child and now a parent Im sure you have some experience and advice for those worrying about what this will do to their child.  My answer is make them normal and get to be a child but...who knows if they believe me.

There are a few of us that have CCHB (not sure if yours is that "simple" from the sound of it), and started teens 20s and have been doing this a while and post.  Tracey_E being a regular here and a list of past pacers.

I dont remember when I found the site it was a while ago now, but still 20 or more years of just doing this journey on my to then find the site and have others also on the journey some lifers like us.

Welcome to the club!

 

60 YEARS AND COUNTING

by chrispcritter57 - 2023-08-04 04:51:27

What great stories. My oh my, has this industry grown, as well as given hope and life to people with technology that didn't exist 70 years (or so) ago. Think about that! We are all here today telling our stories, and cheering others on. I am so excited to see what innovations are just around the corner.

I was hooked up to my first pacemaker on August 6, 1963. Yup! I am celebrating 60 years of life this weekend! My first generator was external, and the size of an old-time ham radio. I had open heart surgery, and went into complete heart block. The docs very quickly realized that there was no choice but to implant a permanent unit. I actually became part of their study to see if pacemakers were a viable option for people. I have a copy of the JAMA article on that study.

That fateful surgery was the start of a lifetime of pacemakers. I've lost count of the generators I have had. I know it is at least 20. And lead changes? Lost count of those also. You see I seem to have a history of breaking leads, therefore requiring new lead implants.

I've had a wonderful life. I have rollerskated competitivly (like the ice dancing you see on Olympcs - only warmer). I have ridden horses for 30+ years. I have entered into Women's Fishing tournaments. I have gotten the education and passed the test for a Masters' Captains Licence through the U.S. Coast Guard.

If nothing else my life's goal has been to educate people that pacemakers are not life limiting ... they are life enhancing. I pray that someone here reads all these personal, uplifting testamonies, and finds comfort knowing they are not alone on the journey that is called Pacemaker Club.

You know you're wired when...

Your pacemaker interferes with your electronic scale.

Member Quotes

A pacemaker suddenly quitting is no more likely to happen than you are to be struck by lightening.