Ramblings after a bad day!

[Smokie2D]

I read the posts now and again and I am struck by the difference in ways things are handled. I see a cardiologist once a year and my GP as little as I can. I have been "medically retired" since 2002 and various stents for blocked arteries etc did not work as well as they should have. a couple of years back AF was added to the mix. (Does this sound like a tale of woe? It is not I am happy enough) You just need to understand my story a little.

I have been reversed once and it took for a while. Not for long though. Anyway after checks, stays in hospital for a week so they could monitor me I was released from it with the words "In 5 years time no matter what we do the outcome will be the same".

So its left that I take my meds and if I feel bad see doc and if really bad go to A&E. My pulse can be from 55 to 198 (rarely). There are no clinics for AF I am aware of, just my yearly MOT from cardio and the GP practice do a yearly check to see if meds affect blood. I blunder on fine as we can adjust to anything if we want to. Yes I am tired a lot, better sitting than standing all that you are used to. Many are worse off than I am, and again I have no complaint. It is the difference in the way that its done by the different NHS bodies etc. (By the way I am in Scotland).

[doodle68]

Hello Smokie I am surprised since posting here how differently we AFers are treated by the medics. You sound as if you are coping very well with your condition.

I have been attending an yearly arrhythmia clinic for 18 months after waiting for 6 months for the first visit and a diagnosis . I was told on my recent visit that the next clinic appointment (if they decided I needed one) was to be my last.

I was offered an ablation by a nurse (I have never seen a cardiologist,) and declined for a number of reasons so it looks like I am to be on my own unless I have cause for concern and contact the arrhythmia nurse .

I avoid the GP if I can. My named GP never seems to be available and the one I saw after being diagnosed by letter with P-AF following an ECG looked about 12 asked if I had a computer and when I said yes told me to go and look it up.

I am not complaining though , I am one of the lucky ones and managing just fine

[Smokie2D in reply to doodle68]

In the end they can only give you the meds they think will help, (My cardio reckons I am on the best he can do), so really unless something chanes no point in pointless chat. Do your docs say "You know your own body best" and the other fav is "keep active as possible but take it easy". Fun!

[doodle68 in reply to Smokie2D]

[Quote Smokie ''In the end they can only give you the meds they think will help'']

You are right Smokie I think sometimes we are led to expect more when it can be about making the best of that which we are given.

I never see a GP long enough to exchange platitudes, we are only allowed 10 mins maximum.

[Smokie2D in reply to doodle68]

Sometimes its a race in and out but I've been the cause of the doc running late as they arrange ecg etc by the nurse. I wait in the waiting room and they call me back in. So no complaints from me!

[Finvola]

Goodness Smokie, your hospital people were blunt and not exactly reassuring. It’s good that you are managing so well and the differences in care and approach are startling for me too, having read of some bad experiences on this forum.

I’m in N Ireland and we have no arrhythmia nurses that I’ve heard of but I get my MOT from a cardiologist every six months with instructions to ring his secretary or see GP betweentimes if I’m in bother. Like you, I’m grateful to be so well considering the burdens that others have to carry.

[Smokie2D in reply to Finvola]

Ach the guy was a newly promoted Cardio registrar and it wasnt the first time I had heard similar. The releif on his face when I told him I had already been told was funny. You have got to laugh and get on with things.

[BobD Volunteer]

You are right about the disparity in treatment across UK which is unlikely to improve any time soon. Scotland is known to be a little different to England.

Although I live in North Devon most of my treatment has been in London since until relatively recently there was no EP centre in Devon. North or South!.

I do think that being told about negtive five year outcome was both silly and out of date although of course really long term data is hard to find as treatment of AF is such a new science. They have been trying to cure cancer for much longer! I am now at ten years since my last ablation with no AF but it is fair to say that from time to time I do get other arrhythmias albeit less troublesome ones on the whole.

On the other hand it must be accepted that any and all treatment for AF is only ever about improving quality of life so whatever works for you is OK.

[Smokie2D in reply to BobD]

Ah dont worry about five years, I have been told similar before. Its like tomorrow it never comes! Your right things have changed almost every time I am in techniques improve etc. But it boils down to the expert you are seeing and their theories! Have you heard the one about if your chest hair is not curly you lack vitamin C? Well a nice cardio said that was why I kept having angina, turns out vitamin C has something to do with linings of blood vessels but it is still weird!

[doodle68 in reply to Smokie2D]

Quote Smokie ''Ah dont worry about five years, I have been told similar before.''

When my Dad was 21 and one of the first diabetics to receive insulin, he was introduced to a group of trainee doctors with the words 'This is **, he has just had his 21st birthday but sadly won't see his 22nd''. Dad lived to be 89 just to prove them wrong.

[Smokie2D]

Yep who knows I have outlived 2 cardiologists, two nurses and one GP! Think I am a jinx?

[doodle68 in reply to Smokie2D]

.....older and wiser maybe

[Smokie2D in reply to doodle68]

I am gratefull to all the medical staff who have helped me on my journey and have been saddend by the untimely loss of some fantastic people who were taken early and cruelly . No one can tell the fate of another they can make an educated guess only.

Some were certainly older and most were wiser than me!

I have seen a student doc rise to the head of a cardio team and guess what he is the one who currently looks after me!

[Hidden]

I don't even get the annual MOT - I'm in Wales. Just instructions that if I keel over to go to A&E.

[Smokie2D in reply to Hidden]

Thats about it really, mind you I was told if my pulse goes over 200 I have to go to A&E.

[CDreamer]

Hi Smokie - very different treatments and options available - locally - totally dependant upon where you live but you can ask to be treated at an Arrythmia Clinic anywhere - but you do need to be prepared to travel.

[Smokie2D]

I trust the bods I am with and have decided to relax and go with the flow. I have a number of health issues and after discussions with a few cardiologists over the years have left things as they are.

[skybluepink]

Worse here in England can't even get monitoring or testing on equipment that shows up Microvascular .They have consistently closed A&Es when Issues raised giving no Urgent or Monitoring help. Why then are they wanting to charge more for something not getting in first place .I thought there was NICE & NHS constitution with Equalities?

To further discriminate against the Vulnerable is downright bullying & victimisation especially with remote monitoring could not wake up rotting in my bed as single solo .Do they care?

Two weeks ago couldn't get appt with new p/t GP for 4weeks allowing admin to maladministrate as feel & Duty Drs to pass the buck to least experienced then direct to change what has been arranged .

This was as felt needed to report worsening angina symptoms in morning effecting spine & kidneys that knew about but not escalating .Who communicates re Reveal device only revealing PAH .I am already on mobility scooters , stools collators sent warning letters requesting possibility of Oxygen?

Have had to change Surgeries over 10x as procedures putting my health & safety at risk & what do Inspectorate do ?!!! .... Reporting into Oblivion is downright dangerous.

[Smokie2D]

I am sorry to hear about your difficulties.

Our main hospital in region is a teaching hospital with links to a major university. Our GP practice is a teaching practice who offer a drop in clinic am and appointments only pm. So you can be seen same day, but often by a student GP overseen by a qualified GP. Strangely the students are often more thorough than the regular mob!

So all in all I am a handy teaching tool!