This wait time is beyond the pale .....

Luckygirl3... I see yes that's not a Pacing issue. The Pacemaker is fine.

Do you have an Arrthymia Nurse? My Trust had 2 they acted on behalf of the EP consultants, they field any issues from Patients post Ablation etc

A base rate of 70 understandable, I think it's sounds like your meds need looking at? A night rate of 60-70 that's OK.
Your year follow up, is normal, don't worry any issues ping to them via HM.
I have a Pacemaker plus I had a Cardiac Ablation (as they say you work with them... You end up like them 😂) Dec 24.... To date I haven't see the EP Doc but seen 3-4 times by the Arrthymia Nurse.
I think speaking to your EP man will help, it's such a shame you have to wait so long for a follow up appointment.
Good luck and hope you feel better soon.

My neighbour, suspected heart attack waited nine hrs whilst they did blood work, waiting for results.
Turned out it was a collapsed lung.
I wouldn’t go A & E if you can help it, as they seems to be a lot of people have this sickness bug that’s going round.I would do as the other grans say.
Or ring your heart specialists secretary. Wishing you a speedy recovery 🫂

can they explain why you are out of breath? are you carrying fluid?

How bloody awful for you Luckygirl I really hope you get some advice soon, I can’t imagine how frustrating and depressing this is x

Visgir1

See if the Paging team can help? Tell them your not feeling good, and wondering if it's Pacing Related? They have direct access to a Cardiologist. Probably isn't but it gives you an idea.

If you have Home Monitoring, that keeps you safe.. Also, If you are checked at least once a year, that monitors the Pacemaker life.

I'm speaking as a recently retired Cardiac Physiologist specialist in Pacing.

Worth a phone call. Best wishes

Thanks for your input. I appreciate that.
Just to explain... I had av node ablation at end Feb. Already had pm. At follow up, base rate lowered from 80 to 60.

A few weeks later I then saw the pacemaker guy locally with problems of weakness, giddiness and breathlessness after eating plus general fatigue (e.g. after a shower or walking short distance).
He upped the base rate from 60 to 70. He also says he set a night base rate of 60, but, if my smartwatch is to be believed, it never goes below 70 day or night. Watch might be wrong of course.

I asked how my response to this change might be monitored and he said to come back in a year ..... this did not feel reassuring, especially as the problem is persisting.

I have made a private phone appointment with the EP who did the av node ablation to try and get some speedier advice as to posdible cause of problems and hopefully solutions. Fingers very much crossed!

Sorry to hear of your health issues Luckygirl
I know someone who was fed up of waiting.
She took herself to the A & E Dept of the local Hospital and was promptly seen.
Good luck 🍀

See if the Paging team can help? Tell them your not feeling good, and wondering if it's Pacing Related? They have direct access to a Cardiologist. Probably isn't but it gives you an idea.

If you have Home Monitoring, that keeps you safe.. Also, If you are checked at least once a year, that monitors the Pacemaker life.

I'm speaking as a recently retired Cardiac Physiologist specialist in Pacing.

Worth a phone call. Best wishes

You read my first post very accurately FGT!

Your first post sounded so despairing Luckygirl but as I read on I see you’ve sourced a way forward, so well done you! I hope we all hear of a reassuring outcome soon. As you say, life’s too short at our age to put up with this stress. I feel sorry for those who cannot throw money at such a situation. To be so stuck must be miserable and depressing.

How has the NHS come to this overworked/oversubscribed service in certain areas?

I am sure we are no longer The Envy of the World regarding our health service provision.

Sorry to hear of your troubles Luckygirl
You’ve been through so much

I hope you manage to move things along a bit

Thank you.

We are behind you whatever you decide. Good luck.

Luckygirl3

I have asked to go on cancellation list.

Unfortunately the good consultant does not work privately at all. I checked that this morning.

Whenever I talk to one of the GPs they say that the situation is too specialised for them and it is cardiology I need to see.

I will look into a private appointment in the nearest big city after doing some research on who might be best. I cannot see any other way. This will entail travelling which is in itself a problem at the moment.

Good move at the end of the post.

It's what I'd do. Bit of research on the nearest big place that has several cardiologists and cross check the ones that work both in NHS and private.

Thank you for all the helpful ideas.

What I have managed to do is to book a private phone appointment with the person who did the ablation in February at the main hospital in Birmingham which is quite a distance from here - don't want to travel again unless absolutely unavoidable. He should be able to give some advice and I will collate all the test results since then and email them to his secretary.

At least I don't feel quite so adrift now.

I’m appalled on your behalf lucky, I would at least hope the GP would escalate for you. I hope you can get the support you deserve very soon.

It is a catch 22 situation. It sounds to me as though you need a new pacemaker. That would be fitted privately, but I am unsure of the cost. You could google and see what pops up. In a nutshell you need to be seen to morrow. Good luck.

I have asked to go on cancellation list.

Unfortunately the good consultant does not work privately at all. I checked that this morning.

Whenever I talk to one of the GPs they say that the situation is too specialised for them and it is cardiology I need to see.

I will look into a private appointment in the nearest big city after doing some research on who might be best. I cannot see any other way. This will entail travelling which is in itself a problem at the moment.

I think I'd talk to my GP and describe your worst day. He/She can escalate to the hospital. I understand what you are saying about the shouty person...horrible. You can also ask GP to recommend a private referral as you say you could. He can also advise on being referred privately to the consultant you like as they all work privately as well. Really sorry to hear how much you are suffering.

Sorry I meant Primrose’s tip

I second Luckygirl. I was advised to do this after a long wait and the Consultant’s secretary popped me in for a double hernia op when a cancellation came up.
An excellent tip.

Must be awful for you Luckygirl3

If it was me I would ring your Consultants secretary and ask him/her if you can be put on the cancellation list. Tell them how you feel and say you need to be seen more urgently.