Hospital appointment how long do you have to wait!

[Suzieblue]

I have just been sent appointment to go to Heart hospital on 10th November, it is a ridiculous amount of time to wait prior to having surgery that might correct my heart condition. I have been off work since May and they are trying to get rid of me.Had to attend medical in Preston were I found out that the boss at work thinks it is my weight that is causing all my problems. It isn't and I have worked at job since 2010 and not been off apart from following surgery on left wrist and shoulder, until went into AF. None of these I have control over and I am very angry.

[BobD Volunteer]

Blaze off as much as you want Suzieblue. Slight correction--. ablation isn't surgery but a procedure. Have you actually seen a consultant yet and has medication not helped at all? Many people with permanent AF do live sort of normal lives. NHS waiting lists are long for sure and the junior doctors aren't going to help.

[Suzieblue in reply to BobD]

This is to see EP consultant eventually, it may be a procedure but any are very distressing to me . I have had some horrific procedures and operations under non working or failing epidurals including three c/sections. My heart feels very scary to have anything electrical done to it. I had a scare on Friday as I had terrible pain in my chest but was not sure it what it was, my husband was stressed as my disabled son had problem and he was trying to get him home so I didn't tell him.

[gemsmum in reply to Suzieblue]

I notice you mention Preston, I don't live too far from there and I attend Wythenshaw hospital in Manchester. I paid to see an an EP from that hospital who then transferred me to the NHS and I still see him there. Maybe you could look into paying to see an EP privately, it would help with the stress and you could probably see him within a couple of weeks and he would then give you his recommendations to help with your AF. Hope you get sorted soon, kind regards.

[seasider18 in reply to BobD]

I had to phone to rearrange my appointment at the hypertension centre on Thursday. I bypassed appointments and spoke to the girl at the department check in who gives out the dates anyway. She started to give me one and hesitated saying that due to rearrangements because of the junior doctors strikes she would need to get back to me.

I said that the office and administrative staff must have an easy time during the strikes. She giggled and said 'We love it and have a good time'

[PeterWh in reply to seasider18]

They don't enjoy all the phone calls.

I had a text last Thursday reminding me of my appointment at Barts next Friday and this morning a telephone call doing the same. I suspect that they are wanting to make sure all slots are filled this week and that people aren't confused. As to which date the strike starts.

[seasider18 in reply to PeterWh]

Is it an automate phone call? I used to get them but chose the option to stop them. I slipped up a long time ago when I was offered a chance to go to Bart's to see Dr Lobo. The 2 hour plus journey put me off.

[PeterWh in reply to seasider18]

No a real person called!!

[Basia12]

Hi susieblue , I completely sympathise with you. I have just gone back to work 1st August after being off sick since Nov 2014! I had paroxysmal AF , very symptomatic , diagnosed Jan 2015, EP appt March 2015 and Ablation end Oct 2015 . So I know what you are going through with work . In the end I had to give into it all completely and tried to stop being angry and upset at the things I couldn't control eg waiting times etc . There is light at the end of the tunnel and I realised that my health was more important then my job I felt so much better when i stopped worrying ( I know that's easier said then done). I was lucky as I got paid for a year and then got employment support allowance based on my NI contributions this helped take the pressure off a bit . Hope this is useful x your boss is wrong to voice a subjective opinion about your weight and your condition! Is he a doctor ??!! Don't worry they can't use that against you ,you would have a grievance x

[Suzieblue in reply to Basia12]

No such luxury with pay I was put straight on Ssp. So financially not good.The boss is not a Dr and doesn't seem to understand if you are waiting for surgery when you get an appointment, you need to go and get treatment. You are trying to improve health by having treatment, but you still need to come back to work when recovered.I can't get life insurance due to AF so finding everything very depressing, I am no good alive or dead apparently, feeling on trash heap at 53.Wishing had kept on working as nurse and midwife,but family got in way of that and it's too late now.Sorry bit sad.

[Basia12 in reply to Suzieblue]

You are not washed up ! You may have lots of days feeling sad and vulnerable and scared that's ok ,when I was in the same place you are now , things looked really dark and I never thought things would get better , and believe me they got much worse before they did! Lol. finding time for meditation , yoga aromatherapy( self taught can't believe how this helped!) baby steps , doing things you have control over-weight loss helped me -research points towards a 10lb weight loss can significantly lessen the AF burden if you are overweight . Once I gained some control in aspects of my life I felt more confident. Now I've come out the other side ,I cant stress it enough :don't lose hope , you can get better.I'm sending you a big hug xx

[Suzieblue in reply to Basia12]

Thanks some people seem to get stuff done and carry on with out any problems, I do think more care and support in hospital would help.Thanks for the hug xx suzieblue

[seasider18 in reply to Suzieblue]

What has actually kept you off work for so long?

[rosyG in reply to Suzieblue]

think everyone has given excellent advice- just hope you start to feel better soon take care

[Hidden]

Go private for consultation is the answer, but if financially not possible (£250'ish?) then you've got to wait till Nov. In NHS terms, that's quite soon 🙄.

But it's really good you are seeing an EP, they are THE specialists. I was in a terrible state a few years back. In reality it was the end for me. I could hardly walk or do anything; my job; everything I do up the swanny without a paddle.

When I saw my EP he put me on some pills, didn't work, then tried another 3 and finally one worked a treat and got my life 99% back to normal. I cycle, walk, work, whatever.

I also had an ablation by my EP and it worked a treat for many years, no AF at all. The procedure was no problem at all and I'm not just saying that. I had a second without thought, and would welcome a third if I was given the chance, which I'm not because the drugs are working great.

Hope it goes well, fingers crossed for you. Get a list f questions for your EP and be prepared, which I'm sure you already have in mind.

Koll

[Suzieblue]

Don't really know what to ask,I am just really scared I will die or have a stroke and end up worse.Do you have any suggestions for questions?

[Goldfish_ in reply to Suzieblue]

Well here's some good ones healthline.com/health/livin...

Checkout the resources on this site which may raise other queries.

I trust you're already on medications, blood thinner and rate controller

It's unusual to have to stop work solely due to af. Whilst it may cause a 10% reduction in energy levels this would probably be tolerable in most jobs. Presumably there are additional reasons that you have stopped working?

[Hidden in reply to Suzieblue]

The list from Goldfish is the same as I have, except I would add what happens if the pills, if he gives you any, don't work? What do you do, who do you contact and how, email/phone/appointment?

[Polski in reply to Suzieblue]

Read all the relevant information on the AF Association website. If you are anticoagulated then you are very unlikely to have a stroke or die - see your GP if you are not. Fear will make you feel far worse, so read up all you can so you understand the facts, that will decrease the fear and the questions will become clearer.

Try Dr John Day's website - On the home page click on reverse heart disease, and then on 'Cure A Fib'. He makes lots of very positive points, and suggestions re lifestyle changes which will help.

[John-Butler]

Hi Suzieblue from experience the best thing you can do is try to forget about your health problems the more you worry the worse you will feel, things will get sorted in the end .I was told I need heart valve surgery and the time from waiting to see the consultant to having all tests and the surgery was about 10 months and in this period I carried on working as best as I could to pass time, this seemed the longest 10 stressful months of my life .A year on Life is much better with still a few niggles ,there's days when I think why did I get so stressed about it all.Hope all go's well for you , we have some of the best heart hospitals in the world and you will be sorted eventually

[seasider18 in reply to John-Butler]

I waited five weeks for my first cardiology appointment after my GP referred me. It was 54 weeks later before I had my aortic valve replaced. Well within their time span as the professor in London who had diagnosed my 75% closed valve before referring me to my local Sussex GP as he thought that it would be more convenient for me had said that it would kill me in about two years

Tests and angiogram appointments were very drawn out then my surgery referral sat in the registrars out tray while he went for a month's holiday. At one A&E visit the doctor there advised me to have it done privately. It will only cost about £6k he said. Out of touch, both estimates I got were over £28K and if complications or a pacemaker required would have been more.

[CDreamer]

Hi Suzieblue your appointment obviously feels a long way away, in reality it isn't more than 10 weeks. Time to do some research and get a list together of what questions to ask the consultant and work on your fears.

There are some great suggestions above and you will find a lot of support for your sounding off - we have all been there - and therefore know - it can only get better.

What do you ENJOY?

The anger and the anxiety is probably doing you far more harm than the AF so - get some control. You are the master of your own mind, body and soul.

There are many, many ways of doing this but one of the best is to do something you enjoy doing as the hormones endorphins counter the stress hormones.

Activity, distraction, making a plan are all positive actions you CAN do and often changing our mindset is the one most important thing we do which will have the greatest effect - believe me I know.

I also was 'asked to resign' for 'health reasons' was advised to go to a tribunal and stayed angry for far too long for my own good. I ended up going freelance and really enjoyed my last few working years and was probably the best I have ever been - even with AF!

Get it out of your system somehow and then think about health - how can you help yourself? What can you do?

Taking control of even the smallest thing will help, tiny baby steps and you will soon be walking with confidence.

You cannot change other people or their attitude but you can change your reaction to them.

Very best wishes CD

[irene75359]

Suzie, there have been a few cases where claims against employers have been upheld when the employer has discriminated against an employee because of their weight (which sounds like your boss). Worth bearing in mind.

In any case you have some cracking advice here, everyone is rooting for you! so let off steam and then concentrate on getting into a peaceful place ready for your procedure. Wishing you well.

[PeterWh in reply to irene75359]

Suzie

AF is covered by the disability act (think 2010) which is the latest (previous the disability discrimination act).

My gut feeling is that the cause is not relevant because especially in the case of AF the cause can very rarely be identified. Plenty of people who have AF are not overweight or are marginally overweight.

Talk to citizens advice, AFA, union, etc though many (especially the latter) are not really clued up as much on AF as they should be.

There have been a number of responses on this forum in the last year on this aspect (some as posts and some as replies in other posts).

Sound off on here!!!

[PeterWh in reply to irene75359]

Suzie.

BTW there are circumstances where it is perfectly legal to "discriminate" against someone who say has had a heart attack, has AF, is over weight, has other conditions or restrictions.

One example is where the individual's or other people's health or safety could be endangered. For instance working or crawling in a confined space on a construction site, working at heights, climbing multiple high ladders.

An employer not only has to look at what is the normal situation but also an emergency one (eg if there is a fire).

However they can't employ a blanket ban so if someone is working in an office role near the main gate on a construction site it would effectively be like working in a normal office.

However a proper risk assessment must always be undertaken and written down.

[seasider18]

Now some hospitals want to make smokers and overweight people wait longer for treatment.

Some years ago they would not do my sister in laws triple bypass until she had lost weight. She had two more heart attacks in that time.

[PeterWh in reply to seasider18]

Some of that is due to medical assessments. For instance the mortality rates for those who are obese are many tines higher for major operations. Many procedures won't be carried out on people with AF, particularly persistent, due to the risks. Ablations are carried out whilst a patient remains on an anticoagulant but in other cases they have to stop. I actually disagree with some because the chances of a significant bleed are much higher if having an ablation than say removing lesions or skin tags.