Complaint to my hospital: I have just made a... - AF Association

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Complaint to my hospital

I have just made a complaint to my hosptal that they have put me on the AFib pathway and are trying to push me into a cardioversion as quickly as possible (to hit their performance targets) and giving me virtually no information about where the pathway leads. I'm not blaming any staff with whom I've had dealings, it's the system at fault, there needs to be more information available. Staff clearly don't have time to answer general questions about AFib so they should be able to refer patients to where they can get it. Hopefully lodging the complaint will help me to get the information I require and help improve the system for others. I mention it here because if others are furstrated and feel incline to make a complaint, other complaints along these lines may help bring about changes more quickly.

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I hope you have more success than I had.Not only did the consultant /surgeon deny he did anything wrong but so did his two nurses who were present at the time in the same room!.

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I'm sorry to hear that, though you can hardly blame the nurses for not going against the consultant, it would have been the end of their careers.

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This was after I had written to the Chief Executive and all 3 had been interviewed.

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What was the complaint about?

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Or you could go to AF Association and read all about it and check out NICE guidelines. Then you will be able to discuss with your medical team rather than be a customer.

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I'll explore the site some more. Whatever the NHS does nees to be linked closely with the AFib Alliance. There's a whole load of info the NHS might have given me when I was first diagnosed. The 'team' have no time for any discussion. I'm being pushed into a cardioversion with no discussion of management. Sometimes threatening the hospital in their complaints stats is the only way to get improvement.

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We have over the years produced a great many booklets and fact sheets such as those on ablation. drug therapies, anticoagulation etc plus our "Preparing for Ablation " and "Recovering from Ablation" all of which have to be approved by our medical board but nobody can force a hospital to use them or even refer patients to our website. Many EPs do thankfully.

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I had the opposite experience. I was in Afib and went to the clinic hoping to have cardioversion and was given the run around and left me in Afib for 12 days. I finally went to ER and had it done within an hour. I have had an episode of Afib twice, two years apart and had cardioversion each time.

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I have persistent AFib. I'm fairly new here and most peole seem to have intermittent AFib and it can get confusing at times.

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Why do you not want a cardioversion

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It's question of do I want one at present. I am not that bad. It has been presented to me partly as treatment, partly as diagnostic tool, which is confusing. I am now thinking it is better to lose 2 stone before I have one.

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You are then fortunate to live in an area where it can be done quickly and they want to perform well. I live in an area with a 14 week wait for a cardioversion and they put you on amiodarone until it is done.

The sooner a cardioversion is done the more likelihood of a good outcome.

A good starting point if you have grounds for a complaint is to contact Patient Liaison at your local hospital (I assume that you are in the UK.) The hospital web site will have their E-Mail and phone number.

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I have asked to withdraw the complaint and asked them to consider what I wrote as feedback. The staff here seemed to be under great pressure to 'process' patients quickly which is to most patients advantage. It's just odd ones like me who gum up the works.

I understood that in my case the cardioversion would not stick, it was just to see if NSR could be restored. Hence I wasn't in quite such a hurry as some. But if I can lose 1kg per week I think the advantages of being 15 kg lighter outweigh the disadvantages of a fifteeen week delay, maybe if I am lighter the cardioversion will stick for some time.

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When I had my first cardioversion the Guy in the next bed must have been way over 20 stone and was having his 17th cardioversion. He also had sleep apnoea.

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This may sound like I’m being the Devils advocate but bear with me. Whilst it’s absolutely right that there should be a two way dialogue between Consultant and patient, sadly this isn’t always the case. There are probably a number of reasons for this but in truth, they are generally excuses due to the pressure medics are under to do the the best they can for an increasing population of patients. Picking up on BobD’s point, if you check out the treatment options information contained within the AF Association webpages, you will see that a cardioversion is often recommended for patients with persistent or permanent AF as it is the quickest and safest method of finding out if the patient can be reverted back into sinus rhythm. If it is successful and the patient feels significantly better, then it may mean the ablation route for treatment could be worth considering so it is good that you are being put forward for a cardioversion.

I know this isn’t the cause for your concern, but it does sound as though your treatment is normal and proper so you may want to consider how best to proceed in dealing with your concerns......

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What's the point of finding out if I can go down that route unless I think I might want to go down it? The alternative is rate management and I might prefer that, but it hasn't even been mentioned. Seems like the very first thing I should be doing is shedding a couple of stone and I've made a determined start on that.

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I think you might be missing the point. A CV is part of the normal treatment process to help you and your medics determine which longer term treatment options might be best for you. No more, no less. Although if the CV is successful it can enable folk to stay in rhythm for days, weeks, months even years but it is not a cure and it’s normal for AF to return. Clearly you are unhappy about something, but complaining about what is normal practice is likely to be counterproductive but entirely your choice....good luck.i

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The consultant said it was to help me decide whether to go for ablation. The point is that given more information I might decide I don't want to ablation and would like to try management first. I don't want any procedure for the fun of it.

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Further, as you only get one cardioversion without drugs on the NHS and I've had this persistent AFib for at least 16 months might it not be better to lose 2 stone and then have it? Surely there's a better chance the AFib stay away for longer if I am at optimum weight.

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If you feel raising these issues is for the greater good I applaud your efforts. As FlapJack says cardioversion will give valuable diagnostic clues to the way forward. I hope your complaint is not going to delay your suggested treatment on your side ( I'm sure it won't delay on the hospitals ). A good friends husband had been in permanent AF for months and has remained in sinus rhythm for many months since cardioversion so it can be a great relief not just diagnostic.

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I've had the AFib for more than a year. If I'd gone for a cardioversion when I ws first told there was something abnormal about my rhythm, by a doctor in a Russian sanatorium whom I asked for a swimming pool pass, maybe a cardioversion would have restored rhythm for some time, but, perhaps foolishly, I ignored what he said. Now it seems there's no hope for long-term restoration of rhythm through cardioversion alone, one of the atria is slightly enlarged.

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It's enlarged because of the AF, mine was the same. Being in NSR has shrunk it back to normal size.

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Neither consulant nor nurse thought that the cardioversion would last for long. I assumed that is because of interval between onset of Afib and cardioversion and that the enlargement was a consequence of the delay and hence a sign that the effect of the cardioversion wouldn't last long. But I am having to make assumptions because little is explained. I am extremely grateful for all replies. I have a cardioversion scheduled for the 20th but must decide very soon if I will take it up.

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Personally I would take it.

My first cardioversion lasted 6 months (with the help of amiodarone) subsequent cardiovesions ether by zapping or chemicals lasted between 2 weeks and 3 months. But, it proved that my heart could sustain NSR and that I was suitable for ablation.

I had an ablation in April 2017 and I'm still in NSR and medication free.

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Thanks. The subsequent cardioversions with drugs alarm me. The nurse said these have side effects. I'm not sure what is the point of these, are they just further tests to see if I am suitable for ablation? Mechanical procedures alarm me much less than drugs.

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as I was told, the ones by amidorone or flecanide are easier on the body, but I think that each doctor had their preferred method.

I feel so ill in AF that I was just happy that they got me in to NSR

There were 2 occasions when I went in to NSR just as they wheeled the cardioversion kit to my bedside.

But like you I don't like taking drugs,and do not tolerate many of the rate/rhythm drugs , so for me the ablation was the way to go

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It looks like neither route is drug free. I don't feel so bad at present, if I hadn't felt some palpitations after drinking Red Bull a few months back (why aren't there health warnings on the can?) I probably wouldn't be properly diagnosed by now. My energy levels are dropping, but I'm now underway on a diet to lose two stone, and the aversion to drug-therapy is excellent motivation to stick to it. The other question I'd like an answer to is what happens if I do nothing, what's the prognosis? Not that I expect to do nothing but knowing the answer to that seems to me the logical starting point for whatever I do..

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I've had two successful cardioversions but now I'm told that because of the size of my atrium another will not work. The answer to that I was told was to have an ablation as that would probably reduce the atrium size.

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Successful. How long did they last? The NHS gives you one no-drug cardioversion free, I can get a cardioversion in Moscow for 700 GBP, so wouldn't mind having one every couple of years if that's possible. I'm told my atrium is slightly enlarged, quite possibly because of my dithering.

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They each lasted about 15 months until my vagus nerve was stimulated first by a colonoscopy and then by a DRE (digital rectal exam ) of my prostate. I've been in permanent AF since then (January 2015 )

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That's helpful. Thanks.

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I wish the hospital had rushed me in for a cardioversion. I had to wait my turn & was amazed how well I felt after I’d had it.

People usually complain about the waiting lists.

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The hospital complain to me that I am not doing it quickly enough! Perhaps they are so busy doing cardioversions that they have no time to anser questions.

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I’m afraid this is indicative of the constraints on the NHS now. I’m afraid that doctors unfortunately just haven’t got time to fully explain everything to patients nowadays. That’s why forums like this and the AF Association are so valuable. This now applies to all conditions, six Year’s ago my husband was told he was going blind after a routine opticians check sent him to the hospital where there was no advice given. We learnt then about self help and now educate others in support groups.

Good luck on your journey and I hope the cardioversion works for you.

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To be fair the nurse did inform me about the Arrhythmia alliance, but it would have been helpful to have been directed to written info on Afib abd the treatment pathway when I was first diagnosed in the UK. Instead the GP got very ratty with me and my questions 20 minutes into her first 10 minute appointment after Christmas and suggested I take treatment privately in Russia.

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I understand you feel you have been shunted into treatment without sufficient explanation but your use of the word 'pathway' is a reminder of the notorious 'Liverpool Care Pathway' which of course was supposed to be end of life care but in effect meant as little care as possible for people expected to die soon.

Fortunately the AF pathway is simply a medical plan for treatment and I wish, and so do many others I am sure, that I had been put on a 'pathway' instead of being left to the 'mercy' of my ignorant GP! As I said in my reply to the post about advice to newbies, it is up to you to 'own' your chronic condition but you seem fortunate to have a care plan and hopefully it will lead to better health 😊

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Thank you. But they seem to think I'm like a person singing words in the hymn 'Lead kindly light'. 'I do not ask to see, the distant scene one step enough for me'. I'd uite like to see the distant scene so I can choose my own direction. Yes I too thought of Liverpool when I was told about my plan. But right now I think conveyor belt is a better word than pathway.

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Which hospital was this?

Was it in the UK?

My only time with a consultant was nearly four years ago,he TOLD my arrythmia nurse to prescribe PIP.

She refused,so I still have to go through sometimes lots of hours in a fib.

So you see nurse CAN go against consultant.

Hope you get some help in this.

If it's an NHS hospital and you are dissatisfied go to the family GP and ask for their help.

It's duty of care.

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It's an NHS hospital so in the UK but I doubt I'm allowed to dientify it further here, and I'd think rightly so. PIP I don't understand. My regular GP would be very sympathetic, there is usually a two week wait to see him, probably because he is understanding in such situations.

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PIP means 'pill in pocket' - people who have infrequent episodes of AF take medication only to treat an episode. As you have persistent AF nothing but possibly rate control meds would be any use.

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I had a cardiology appointment last week as usual with a Locum. I said to the nurse that I had not seen my appointed consultant for six years who after complaints about his department that he fully admitted to had said that I would always see him in future. I've not seen him either she said now that he is a professor he seldom sees clinic patients.

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this may be of interest

getinrhythm.com/webinar-eri...

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I'll take a look. It's good that they are upfront about their sponsors: I'll switch on my 'vested financial interests' sensers.

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Sorry that you feel like you've not gotten adequate information. But getting a cardio version as soon as possible is a good thing! The longer your heart stays in Afib, it is like learning a bad habit. At the times that I did not convert on my own in 24 hours my EP always wanted to get that cardioversion done immediately, for my sake, not the sake of any numbers or hospital goals. Push back for more information about what to expect. Knowledge is power and I hope you soon feel like you are learning all you need to best manage your Afib.

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What's EP? As far as I know it is persistent AFib and think it has been persistent for at least 16 months, possibly for as much three years. I'm not aware of anything coming and going, except for once when I drank some Red Bull. The bad habit has been well and truly learnt.

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Oh, energy drinks are disasters for the heart for sure! An EP is an electrophysiologist; a cardiologist with an additional 2-3 years training in the electrical workings of the heart. They are the Afib specialists. Cardiologist tend to just be. content. to manage Afib as a secondary problem, while EP's see it as the primary problem and work to fix it.

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You know it’s bad when you’ve to go for lung function test & blood work every 3 months!!!!

& 4 sheets of side effects

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I think that your comments about not knowing the anacromyns PiP and EP mean that it is fortunate you have found this site, as you gave much knowledge to gain. Read as much as you can and listen to the voices of experience. I realise that you want to arrive at your own conclusions ie about having a cardioversion but I am worried that your deliberations may mean that in the meantime you may develop other heart conditions from the untreated AF. I had undiagnosed paroxysmal then persistent AF for a decade or more. That led to Dilated Cardiomyopathy. The initial cardioversion although lasting only days showed the consultant that my heart could revert to SR. That was vital in deciding what to do next. 4 ablations later I do not have DCM and have been in SR for over 3 years. Please take the shortcut of the Forum members experience. Good luck.

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I just heard that the hospital has cancelled my cardioversion because of my complaint so the decision is taken out of my hands for now. I'll have plenty of time for reading.

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How is your complaint going to be handled ? You need a meeting with them to discuss it.

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I withdrew it and asked them to treat it as feedback.

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Put it on the hospital web site as a comment !

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Thank you

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You seem to like complaining.

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Often it's the best way to get results with public services. A friend did once advise me not to complain about doctors because they are in a position to stop you complaining, permanently :-)

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If you have had an episode of Atrial Fibrillation the sooner you have a Cardioversion the better chance it has of working!

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It's persistent.

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Sorry but the more I read you comments the clearer it becomes that need to think more carefully before making rash decisions which can seriously impact your future health. The most common route to determining whether or not there is a chance that you can be reverted back to sinus rhythm is to have a CV. This is what you were advised by your doctor and you subsequently decided to formally complain about the manner in which you were treated and now you have to pay the price for your actions. The rights and wrongs can be debated for an eternity but you caused this to happen and you have to accept responsibility.

The only route forward for you now is to get your GP on side and apologise to your consultant for your outburst perhaps putting it down to fear of the unknown and hope for a result. Losing weight will help but lifestyle changes tend to be more helpful to recently diagnosed folk with paroxysmal AF because it is more likely to reduce episodes of AF.

Please don’t bother to reply but good luck......

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This is what you were advised by your doctor

That is not what I understood from my doctor. I understood that it was to help me to decide what course of treatment I wished to follow, which is slightly different.

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It depends how badly AF affects your day to day life. For me I would try anything to have NSR after often 3 days in AF housebound just waiting for it to stop. I take flecainide & its give me a chance to make plans for hols etc. Before I was always on edge, would it begin or not. Of course there's side effects

but for me the 'up' outweigh the ' downs' All the best

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Life isn't too bad, Afib is persistent so I don't have acute episodes. I lack energy for sure but that is the only symptom, it's a question of whether a stitch in time will save nine, or turn our painful and septic.

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Ivan wrote

......I just heard that the hospital has cancelled my cardioversion because of my complaint.....

I don`t disbelieve what you say Ivan - however it seems unlikely a hospital would deny you treatment because you have made a complaint ? I hope not anyway.

I think at the end of the day only you can decide what is best for you. For what it`s worth I would certainly have the cardioversion. Even if it only works for a few hours it shows your heart can go in to normal rhythm. Treat it as a test run to find out if other treatments are likely to work for you. Who knows how long it will last - it could be two days or two years.

As for getting information about 'pathways' and where to go next. I also think patients are not given enough information. However it`s not a perfect world (no sign of the meek inheriting the earth just yet) and there is an element of 'self help' with any illness. Ask questions (on here for example) and learn as much as you can.

I recall another thread were you said you split your time between Russia and the UK. The cost of seeing a consultant in Russia will be a fraction of the UK cost. It`s worth paying to get a second opinion. Expect a different answer to your questions in Russia though - treatment advice seems to vary depending on the consultant you see at the time.

Good luck anyway.

Best,

Paul

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Paul, Thank you for your supportive reply. I was specific in my complaint that I was not complaining about an individual, but the nurse with whom I have had most of my dealings was due to give the cardioversion and I guess they thought that was not appropriate. I don't think they could delay treatment for that long, but as part of the complaint was that I felt rushed they may feel entitled to delay it a bit.

I saw a consultant here, they offered me cardioversion but I had nobody to translate so had little info. Cost of cardioversion 6-700 GBP. They are very big on herbs here, you get lots of herbal remedies in pharmacies, at the same time they seem very big on drug treatment too, two extremes.

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Hi, Ivan_the_Terrible

I had gall bladder problems for years - and I think it disguised the AF and Bradycardia problems - but the doctors thought I was "just depressed", and could not work out that I was depressed because I was ill.

Why do you need "rate Management"? They gave me three cardioversions, two ablations and two pacemakers.

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That's why I am interested in rate management, all those procedures are off-putting.

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Anyone have any comments on sciencedaily.com/releases/2...

Atrial fibrillation: Weight loss reverses heart condition in obesity sufferers

I'm 30 per cent over my ideal weight. Wouldn't it be a good idea to try and get to my ideal weight asap?

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Fat people have Afib. Thin people have Afib. I've had it in both situations. I've had it fit and I've got it sedentary.

You are clutching at straws I feel. And there was nothing to stop you (and probably more energy to help you) continue to loose weight after a cardioversion. I've been stuck in persistent Afib now since early March and still no sign of my cardioversion appointment. My Afib isn't really bothering me much. I can't feel it very often. But my heart rate is still too high and I have zero energy (but that could be from other things too). But I'd still love to be back to normal. I think you have delayed your treatment by what you have done. Not a good thing.

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I must be fortunate to live in an area where you can get cardioversion quickly and maybe others who have sonded a bit critical of me are less fortunate. But everyone is entitled to have things explained clearly to them before any procedure, and I did not feel I had had such explanation. This site certainly helps.

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My experience of hospitals is that they dont often have the information themselves. I have learned to research everything myself and then present my findings to the doctor. Im 5 years in to treatment and still finding out information.

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Thanks for the tip. You must have some tact to be able to present your findings, I've never been good in such situations since my schooldays.

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Im whats known as a difficult patient. I ask questions and argue. Im anal about doing the right thing if they think it will benefit me, but if they throw out some half thought diagnosis I will will fight them. I have a hole in my heart and was told I could have it closed but it would not make a positive difference to my overall health. I decided not to bother with another operation but now I have learned that it will make a positive difference so im going back to demand the procedure. Im in ireland so I have expensive medical insurance. Im not sure my demands would be met in public health. Although most of my care is in the public sector. My MRIs etc is private. Sorry, enough about me. Ask your Drs lots of questions. Bring a notebook to your appointments and research the answers when you get home. I begin my research in US sites and then check facts on NHS sites.

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Jennifer, it sound like we're cast from the same mould. I warned my nurse when she first contacted me that I would be a 'difficult patient'. For the first conversation she kept trying to tell me I wasn't, which I took as an affront. I think we may have more to say to each other in due course.

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Lol. My friend is a nurse and she tells me difficult patients recover faster. Thats me. I had surgery to put coils in my brain anuerysm and next morning I was home for breakfast. Same when I had a tumor removed from my adrenal gland. I was home before breakfast next day. With all my illnesses I feel I dont have time for BS. My husband is the opposite he turns into a baby in hospital and he is there for weeks at a time.

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It's very reassuring what you say about difficult patients, though I have to say that one advantage AFib is that's it's a great excuse for getting out of certain jobs:-)

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