Is there a Pacemaker support Group in England?

[ibnseena5]

I had to have an emergency pacemaker inserted last week as my heart had missed two beats. Is there a pacemaker support group in England?

[Kristin1812 Heart Star]

I’m afraid I don’t know of a support group, but you might be interested in this post (below), and/or make contact with Tracy to ask her.

Do you have a Pacemaker?TracyAdmin profile image

TracyAdminPartner•

7 days ago•2 Replies

Introducing our 'Living with a Pacemaker' virtual patient educational event launching on Thursday February 3rd, 2022

YOU CAN REGISTER TODAY! heartrhythmalliance.org/afa...

Watch, Listen and Learn from Dr Leon M Ptaszek, Assistant Professor of Harvard Medical School Cardiac Arrhythmia Service, Massachusetts, who will discuss all you need to know about life with a Pacemaker and Remote Monitoring.

To view the full agenda click here: heartrhythmalliance.org/fil...

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TracyAdmin

Partner

United Kingdom

[ibnseena5 in reply to Kristin1812]

thank you very much, how do I contact Tracy

[Kristin1812 Heart Star in reply to ibnseena5]

Sorry I thought the link would get you there! Milkfairy suggested heartrhythmalliance.org/aa/u.

She’s good at links. I’d follow her suggestions!

I think you should get to the same place ….the educational event on 3rd Feb on ‘Living With a Pacemaker’

Hope you find something useful to you,,

[Eadaoin in reply to Kristin1812]

Txs for this info. I have had a pacemaker for 14 years and was put on remote monitoring 6 months ago. Amazing technology. Would like to learn more.

[Kristin1812 Heart Star in reply to Eadaoin]

Yes, that’s very understandable…..I like researching stuff that effects me, too. Inf. is so much more available now.

[Hidden]

Hello ibnseena5

Just got of the phone to a mate that has a pacemaker fitted and I knew that he belonged to an on-line group.

His is the general one pacemakerclub.com and say to his knowledge that there is not just a uk one.

He’s been on it a while and says that they seem to answer all his needs.

He also belongs on here and is equally impressed with the answers that he has got.

Take care

[ibnseena5 in reply to Hidden]

many thanks. This is all new territory to me and I'm a tad scared! The arrthymia alliance website link doesn't work.

[Milkfairy Heart Star]

I suggest you have a look at the Arrthymia Alliance website.

heartrhythmalliance.org/aa/uk

[ibnseena5]

Many thanks, very relieved to have this information

[Buddy00 in reply to ibnseena5]

I’m a member of the Facebook uk pacemaker group. There’s some very helpful people on there

[ibnseena5 in reply to Buddy00]

your recommendation to join Pacemaker UK on Facebook has been wonderful, so thank you.

[Buddy00 in reply to ibnseena5]

That’s brilliant.

[Stanley18]

I’m a member of the Pacemaker UK Facebook group. It’s wonderfully supportive. If you do decide to join, and I sincerely hope that you do, then please say a quick hello in the feed and you’ll receive the warmest of welcomes from our community.

[ibnseena5 in reply to Stanley18]

This is all new to me but I’m certainly going to try and join. Thanks for your support

[GreenMonday]

Hi there. My husband had an emergency pacemaker fitted last year. Because I couldn't be with him or discuss anything with the doctors I joined a UK pacemaker group on Facebook. It really has been so helpful and comforting. Good luck.

[ibnseena5]

My pacemaker was inserted last Wednesday as an emergency, so I’m very grateful to read your message and thank you. I’m new to all this but will certainly join. I do have several questions which I am sure people will be able to help with.

[Hidden]

I belong to a Facebook group for women with pacemakers and find it very helpful. Through it found another woman who had her pacemaker fitted about same time as me,, April 2020, and under same hospital. Was very helpful having video chat with her.

Although worldwide group many from U.K.

[ibnseena5 in reply to Hidden]

I can't get on to this FB page you mention. I've filled in the appropriate bits but to no avail. Can you advise please how to access the site?

[Hidden]

Have sent you a private message

[ibnseena5 in reply to Hidden]

have checked messenger and no message! My heart rate apparently went to 24 at the time I was coughing during the vomiting. The coughing got my heart restarted. I felt OK and then the next day, a dozy technician rang me from the hospital to report on my AF for November, not what happened on the 8 December! I asked her to talk to the cardiologist the next day, which she did thank goodness and he rang me to say I needed an urgent pacemaker. I still can't access any Facebook groups for pacemaker uk.

[Hidden in reply to ibnseena5]

If you look at the CHAT icon above this page you should see my message. It’s the only way we can contact each other as don’t know our real names.

[Bingo88]

Yes there's a Facebook group. Think it's pacemaker uk. Really supportive group. I too had to have a rush job because my heart rate dropped to 22 when I was asleep. Hope you're coming to terms with your pacemaker. I was diagnosed with severe copd at the same week. So that's more of a worry for me. Take care and I am here if you need any help. I think you will find people on the heart section of this group will have pacemakers as well. Take care Brian

[ibnseena5 in reply to Bingo88]

Please can you help me join the pacemaker group? I’m signed up to one on Facebook but it’s an American one where their restrictions and medical care is different to ours in England. Thank you and happy Christmas.

[Bingo88 in reply to ibnseena5]

Just go onto Facebook and put Pacemaker uk into the search box at the top. And you will see a box that says join. Click that and your membership should be done. Good luck

[EMBoy]

I too had an emergency pacemaker fitted after my heart missed several beats, and I collapsed. I don't know about the Facebook group, but I am a member of The Pacemaker Club. It helped me a lot when I was first learning how to live with a pacemaker. Once you get over the effects of the surgery, your pacemaker will give you a new lease of life. All the best!

[Fishywishy]

Welcome to the club! You are now special. Hope you make a good recovery from your procedure…………and keep your arm down!Pacemaker UK is a very good group on Facebook. - I’m in the UK, I’ve had my pacer for stage 3 heart block since June. I wouldn’t join anything that required too much personal information or money or required “registration”. Remember also that some charitable/ medical research organisations are not very much of either! If you’re in the uk between your NHS pacer team the British Heart Foundation and the aforementioned facebook page its pretty much all you need! Good luck. Let me know if you do the FB page and I’ll see you there . Jimx

[ibnseena5 in reply to Fishywishy]

Thank you for your message. I'm feeling scared every time I dress as I can feel a sort of stretching at the pacemaker site. I've joined the Facebook Pacemaker group UK and have found reading some of the messages helpful. So thank you for recommending it.