When might a pace-maker help? - British Heart Fou...

British Heart Foundation

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When might a pace-maker help?

bluerose76 profile image

It's getting on for 2 months since my GP put in a request for a 24 hour heart monitor to check on my slow heart rate ( about 40-48 bpm.) I asked him if a pace maker might help give me back my lost energy and help remove the swelling in my legs. He says they need evidence from the 24-hour heart monitor before they consider the possibility of giving me a pace maker.He says everyone is too busy to respond. I am sure that everyone is very busy, but this seems to be essentially a matter of sending a piece of equipment to my local practice.

Anyone in a similar situation?

Any suggestions of how to proceed from here?

blue rose 76

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35 Replies

You need to be referred to a cardiologist, your GP can't decide on a pacemaker or not.If you are getting symptoms with the bradycardia you do need hospital tests and possibly a pacemaker. I think the excuse that "everyone is to busy to respond" is a bit feeble, if you have a medical problem like this it needs attention and a bit of queue jumping !

GP needs to get on with sorting it, I would ask to have the monitor for longer than 24 hours unless you are sure your episodes will be caught in that time, it frequently takes longer to capture the evidence.

I had one fitted last year for pauses and drops in rate and it made a big difference however it also comes with other potential problems, seems nothing is straight forward !

I agree Bantam12, they do help but there is nothing at all straightforward with them either. At the moment, mine protrudes so much, I feel as though it's going to come out of my Skin. Can become quite painful at times too. Trouble is, like everything these days, you can't even get through to the Doctor yet alone the Hospital!!

Mine also sticks out a lot but it doesn't particularly bother me. I can't complain about my cardiac team, my pacing techs have been so helpful and they've even managed to get me a face to face appt with my preferred Consultant 👍

Oh I'm glad to have it, don't get me wrong. When I showed the Nurse at the INR Clinic, she told me I was just too thin lol!! 😀 Can't have it all ways afterall I don't suppose...!

Yep that's my problem, no extra padding for it to hide in 🤣

Lol 😆!!

Definitely need to be referred to a cardiologist for the proper tests ,I've been waiting 20 months for a heart monitor! And yes they are always too busy 🙄

Nettekin profile image
Nettekin in reply to Helly75

20 months? Unbelievable! Don't know how much longer they can keep playing the covid card. 🙄

Helly75 profile image
Helly75 in reply to Nettekin

I know ,this was through the rapid access chest pain clinic too which makes it worse! I've phoned loads of times was promised cardiac nurse would phone back ,never happened 😡 depends where you live too

Nettekin profile image
Nettekin in reply to Helly75

So sorry to hear that. It is so frustrating, exhausting and upsetting when we have to fight so hard at a time we least feel like it.x 💐

Helly75 profile image
Helly75 in reply to Nettekin

You're so right ,I'm worn down to nothing with it all ,cant even stand to try & get help anymore x

You are certainly NOT on your own Helly that's all I can say!!

I cant even face ringing anyone now ,its pointless !!!lots of people falling through the cracks

That's the way I am feeling at the moment. Giving up slowly!! My Surgery has even stopped giving Telephone Appointments. They're short staffed, that's the latest excuse!!! What are you supposed to do??

I've just sat & wrote a letter to my gp 😂 that's what its come down to

Thanks Helly. I'm going to E-Mail them or something tonight. I've got quite a few things I want to see the Doctor for so it's worth a try isn't it? I'm certainly not going to A & E and waiting for hours on end with no joy 😢 Take the very best care of yourself anyway and, just remember, you are not on your own feeling like you do!!

I'm the same by the time I get to speak to her the list of symptoms is the length of my leg ! Thanks so much ,take care of yourself x

Lol 😆. I'm thinking exactly the same thing myself at the moment. This is going to be one long E-Mail...!! 😃

And then when I get her on the phone I forget the half of it ,old age 🤗

Know exactly what you mean Helly lol. Going to have a Bath now and then planning this E Mail in my Head. It will start, Dear Doctor ha ha. Butter him up a bit and all that 😆. Haven't worked out the rest yet though....Let me know what happens with you too 👍

Will do thanks ,take care of yourself x

You will be lucky if Doctors reply. I found it best to Email the practice manager. Got things moving the same day 😊😊

Thanks Mike. I'll remember that!! To be honest, I was so tired last night before doing it, I just sent it to the General E-Mail Address and marked it for the attention of the Doctor. Haven't heard anything yet but that doesn't surprise me one little bit. We shall wait and see....!! 👍

Kristin1812 profile image
Kristin1812Heart Star in reply to Nettekin

It’s not a card, is it? These Hospital Specialists are still busy with Covid as well as their routine work. Some ICUs are still full of Covid cases. Of course I would hope we all got quicker attention (I’ve been waiting since Feb for ‘Urgent’ diagnostics, myself) but in my book Covid cases in Hospital take precedence over me.

Nettekin profile image
Nettekin in reply to Kristin1812

Wasn't really referring to hospital specialists and hospitals themselves, more the GP and administration systems.

Kristin1812 profile image
Kristin1812Heart Star in reply to Nettekin

Sorry, I assumed you were waiting for the Hospital Consultant to OK the request and send the equipment to the GP.

Jessiebrown profile image
Jessiebrown in reply to Nettekin

I have posted before but I to am frustrated with my hospital,I didn’t think I was going to make it during the winter,two of my doctors wrote to my cardiologist saying how unwell I was but she didn’t have the decency to answer either,I was expecting a phone call from her in may this year but instead I had her registrar ,any way he asked how I was and I said terrible ,I can’t breath my heart thumps I’m sweating and no energy my legs are swelling even on 4 water tablets, I am putting on weight over night and it’s not through over eating, he said he would organise a blood test ,which I said I have had so many and nothing shows up,he said I have not had this one,he also said he would organise a 24 monitor ,I said could I have a longer one he said no, also I was to have another echocardiogram, the only thing I have had so far is the blood test, that was a month ago,but hadn’t had the results!! I spoke to my husbands gp when I went with him ,I asked did he know the results of my blood test ,the only thing was my heart failure has got worse, why haven’t I been notified from the hospital? I feel they don’t even look at results until all tests have been done ,I feel I could be dead by the time they get round to looking at results, I had ohs in Dec 2018 and haven’t been well since but no one seems to know what’s going on ,there must be something making my h f worse,sorry for the long rant but I am so frustrated and worried,even my gp said the only thing to do was to ring 999 I would then get sorted, it shouldn’t be like this, I know the hospitals have been so busy with COVID and they have done a brilliant job but I do think they are and have been neglecting a lot of people that really need them.love to you all xxx

bantam12 profile image
bantam12 in reply to Helly75

Can you change hospital ? 20 months for a monitor is ridiculous!

Helly75 profile image
Helly75 in reply to bantam12

I dont think so it's all within the same trust ,its a case of continuing to wait or find £500 for the monitor privately, I'm in N Ireland so it seems everything here is worse

bantam12 profile image
bantam12 in reply to Helly75

Sounds awful and very stressful for you, hopefully it will be your turn soon.

2o months wait or being told too busy is ridiculous, my advice would be to ring them every day, make it part of your morning habits and also make official complaint. My bpm is currently sitting at to 37 gp sent me straight to hospital they repeated the ecg and bloods and was fitted with monitor 2 weeks later, referred to a cardiologist and had a telephone consultation with him last Tuesday, waiting on a echocardiogram appointment which he will chase up but discussed having pacemaker fitted. All this within 6 weeks. I think it must be on my records that I will not stand for any nonsense after going through a terrible time with the services prior to my brain surgery nearly 4 years ago.

Wouldn’t like to worry you I attend the royal Brompton cardiac inheritance clinic as I have Hypertrophic cardiomyopathy I asked to be referred there

On a phone call they asked me to ask my Gp to arrange a heart monitor at some point to check my medication change as they put me on beta blockers

After three months waiting

and nothing from my Gp or hospital and no monitor

And a follow up telephone appointment due

I called the royal Brompton and explained

A monitor came the next day

I wore it for 48 hrs sent it back

4 days later I got a call from a doctor at the royal Brompton saying they had a look at my tape and had found a rhythm that contributed towards sudden death which can occur with hypertrophic cardiomyopathy

I had a icd fitted within 4 weeks that was in April

I got a appointment to have a monitor fitted the other day

I was confused

The lady said the appointment was requested ten months ago

I’ve had my defibrillator 3 months now

Go back to your doctor and ask who to speak to to get something organised

I had a little grandson

Who died 15 years ago he was 7 months old

And the inquest the corner said he did not need to die but by the time they found his problem his heart had wore up we took him to hospital 3 times , to the doctors many times

The doctor told me there was two reasons why he died one because he was a little smiler they did not know he was sick and one there was no doctors at the weekend as he went to hospital on the weekend

I guess I now don’t trust and tend to go the extra mile myself

Ask some questions as to where you go next as you feel your health is suffering

Good luck 👍🏻

Gladwyn profile image
Gladwyn in reply to Enonykasper

I’m so very sorry for the loss of your beautiful little grandson. Such a terrible loss that seems could have been avoided. My head is whirling with the mess up over the monitor!! Crazy! I wish you all the best. 🍀🍀🍀

Good morning bluerose76. I went to my doctors and had a heart rate of 45. And he sent me straight to hospital for an ECG. That was the same and luckily a Cardiologist was there doing clinic. I seen him straight away and he said i needed a pacemaker. If you have a blood pressure machine. Keep an eye on your b.p yourself. And I should go back and see another doctor. Brian

I was given a pacemaker in hospital without me noting much about it. I had a fall and knocked myself out. The piece of metal in upper left chest is a little annoying but serves its purpose I suppose. Good luck with your slow heart rate. I think it’s more for AF. Changing heart beats.

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