Update: pacemaker, young and paced

[Jude07]

Hi,

A little update, I was brought in last week for my loop recorder implant and a few days later I got a call to say my new EP wanted to see me urgently. After seeing him, its now confirmed that I am getting a pacemaker, after trial without medication proving my hearts too fast a few weeks ago and according to loop recorder my new medication is making my heart too slow. The only option now is pacemaker to work alongside the rate control medication, so Ill be getting the call for it as soon as his secretary can slot me in. A lot to take in and at 24yrs it isn't what I wanted to happen but praying this is now the answer to get my life back on track! If there happens to be anyone young-ish or anyone with pacemaker for similar reasons, I'd love to hear from you.

Jude

[Finvola]

Jude - that’s your new EP’s area of special expertise and his reputation is international in the field so I hope you can finally get your heart under control and get on with your life.

Very best wishes.

[Jude07 in reply to Finvola]

Thank you, that is so good to hear! He has been exceptional so far, and everytime I see him he has said he wants to get my life back on track. Thank you again!

[Luludean]

Hi Jude, I sympathise!

I seem to be in a similar sort of situation. Persistent AF , usually deal with it but now, it is not responding to drugs. Very demoralised. Have to wait 5 weeks for a simple monitor. Could have a private one TODAY . I don’t know what the LOOP you mention is. The

Private EP recommended another ablate and pacemaker to totally control heart. I totally understand your anxiety!!!

Have given up talking to friends. “ Well you look fine “ is all I get. Grrrrrr. Hope you get sensible humane advice. It is not just about our heart it is about all of our body!

[Jude07 in reply to Luludean]

Its difficult when your heart isn't responding to drugs, truly hope they find a solution for you! Waiting is one of the hardest things especially when you feel so ill. The loop recorder is a heart monitor that is implanted under the skin in the chest and it wirelessly send the readings to the dr, it records automatically if it picks up something or you can record a symptom through your phone, it can be in for 3 years depending on what they find I believe. Mine will be removed on the same day I get the pacemaker.

The ablations can work and with a pacemaker to be fully dependent on it, Mine is only going to stop my heart going too slow, hopefully!! Youre absolutely right its mentally exhausting. But hopefully it works, and gets things back on track! I know how you feel, when people say you look ok, they have no idea how hard it is on the inside, and the symptoms that come with it. We are just good at hiding them when other people are about. This Dr Im under now is a second opinion and he has been very gracious but to the point with his advice, relieved he is listening to my point of view and keeps saying he wants to get my life back on track. Hope they get you sorted soon, keep in touch!

[AIW58 in reply to Luludean]

Worth ringing to see if they run a cancellation list assuming you could attend at short notice if they do and anyone cancels.

Good luck

[Hidden in reply to AIW58]

Is there a risk that Jude07 might not get the EP he saw if he accepts a cancellation. That happened to me when a new EP started, though in my case it was for an OP apointment.

[AIW58 in reply to Hidden]

I may have replied to wrong post. I thought you had to wait 5 weeks for a loop recorder.

agree you don't want to change docs part way through a plan of care.

[irene75359]

I can’t remember the detail, but my cousin had a pacemaker years ago in her twenties. She went on to have a baby, a full and active life and is now in her sixties and getting up to all sort of active sports. So best of luck - and do keep in touch.

[Jude07 in reply to irene75359]

Thanks for replying, Oh that is very good to hear! Its encouraging to hear the positive stories, especially when you hear so many risks and complications in young people. Thank you again! Giving myself pep talks now that I will soon be back out there living my life!

[Jude07]

I actually just joined one today that appears to have many young people with pacemakers. Very good insight! Thank you!

[Tapanac]

Who is your EP please? My heart seems to be going slow, sometimes in the night as low as 32, but have been told another ablation would be too invasive and a pacemaker would be difficult to fit because of the scarring in my heart. Thank you.

One of my neighbours had a pacemaker when he was in his 20’s and he is about 78/79 now and healthy as anything.

All the best to you

[JudyMarieC]

Hi - I just came across your post about the FB pacemaker group. I just got my pacemaker last March 15 and would love to join the group. How do I go about finding it on FB? Judy

[JudyMarieC]

Thank you! I'm new to the world of pacemakers so I need all the information and support that I can get. Judy