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

(58 Posts)
Luckygirl3 Fri 29-May-26 09:28:01

...... I had a heart procedure at the end of February which has left me dependent on my pacemaker. Things are not going well - I am weak and out of breath and unable to lead a normal life.

I have just checked with the hospital about my follow-up appointment and the wait time is 10 months - I honestly feel like giving up. The only cardiologist in this area who sees patients privately is renowned for being (as one nurse described him) "a nasty shouty little man" and I have been on the receiving end of this before otherwise I would seek an earlier private appointment.

The cardiologist I am waiting to see is excellent and that is why his list is so long I guess.

I honestly feel like giving up. My quality of life is zilch and being 77 I do not have time to waste feeling so ill.

The only option I can see is to look in another area for a private appointment or to present in A&E when things are especially bad ... but then I run the risk of seeing the shouty man.

What a mess it all is ......

MT62 Sat 30-May-26 00:22:24

No I didn’t say she had poor care valdali, just that it just took a long time to wait for test results.
If I was lucky girl I would be going down the route of ringing her specialists secretary.

Luckygirl3 Fri 29-May-26 22:42:53

The wait in this scenario is always long because two blood tests are needed with at least two hours in between and each test in itself takes time. The aim is to see if troponin levels are rising and you can't do that with just one test.

I have been in this situation more than once and knew the score. The problem is that staff often do not have time to explain what is going on so bloods are taken and the patient is abandoned not knowing what the heck is going on.

valdali Fri 29-May-26 22:18:41

MT62

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 🫂

The blood work is the main way they diagnose "heart attack" though.
Sounds as though the immediate results were not positive for heart attack, & but clinically drs couldn't rule early one out so they needed a serial result a few hours later to rule out MI. Having done that, they'd look for alternative cause.

Might not be that, but doesn't leap out as poor care to me.

Luckygirl3 Fri 29-May-26 19:44:43

It's a thought. I do know this guy having made music together!

Witzend Fri 29-May-26 18:24:38

Have you tried contacting your MP?

Luckygirl3 Fri 29-May-26 18:17:42

Cossy

Just want to wish you luck xx

Thank you.

Luckygirl3 Fri 29-May-26 18:17:13

Out in the middle of nowhere here - home monitoring does not exist!

Visgir1 Fri 29-May-26 18:14:34

Luckygirl3.. HM... Home Monitoring.

Cossy Fri 29-May-26 17:43:38

Just want to wish you luck xx

Luckygirl3 Fri 29-May-26 17:18:27

Thanks Visgir1 - I basically need to establish whether there need to be some further tweaks to the pm or whether I need to bark up some other tree to account for the problems. I am hoping EP phone call will help me to establish this.

HM?

Out in the middle of nowhere here - arrhythmia nurses do not exist!

Visgir1 Fri 29-May-26 15:44:35

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.

MT62 Fri 29-May-26 15:37:48

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 🫂

JaneJudge Fri 29-May-26 15:24:43

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

Jaxjacky Fri 29-May-26 15:19:25

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

Luckygirl3 Fri 29-May-26 14:21:53

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!

crazyH Fri 29-May-26 14:18:50

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 🍀

Visgir1 Fri 29-May-26 14:03:08

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

Luckygirl3 Fri 29-May-26 13:48:35

You read my first post very accurately FGT!

FriedGreenTomatoes2 Fri 29-May-26 13:46:46

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.

Grannybags Fri 29-May-26 13:34:14

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

I hope you manage to move things along a bit

Luckygirl3 Fri 29-May-26 13:29:39

Thank you.

Charleygirl5 Fri 29-May-26 12:22:41

We are behind you whatever you decide. Good luck.

Wyllow3 Fri 29-May-26 12:17:39

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.

Luckygirl3 Fri 29-May-26 12:15:39

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.

cornergran Fri 29-May-26 12:12:35

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.