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On for a rant

Hi all, I’ve not posted before, although this forum has given me so much. I read it avidly every day. Today I’m incensed and have to rant to people who understand. Sorry for that, and sorry for long post.

So, Wednesday stomach issues, probably viral, endless diarrhoea. Saturday afternoon felt really ill, hubby wants to go to ED. I can barely walk, so he gets paramedics. ED really busy, finally seen, potassium very low due to fluid loss. On IV, ask if I should just take my Flecainide (prescribed by a brilliant EP, take twice daily, can go up to 250g if in PAF etc.) Oh we are transferring you to the halfway house, they’ll sort it out. Gets there, now in Afib 5 hours. I finally buzz to ask when the doctor is going to give the go ahead to take my Flec and Apixaban (usual dose was due at 9pm), let alone using it to try to put me back in NSR. Very busy. Finally take it at 12.30, my own stash is just out of reach. Stressed completely as I’ve had a TIA when uncoagulated. Had to go to the loo, moving around makes my HR jump enormously. Worst recorded was 173. Confined to bed. Back in NSR 40 minutes after taking my Flec. 🙄

This morning consultant comes in (Medicine). Says as no more diarrhoea, I can go home. Then says I’m going to change you to Sotalol instead of Bisoprolol, and you can just take Flec if you need it, I’ll organise that. Hold on, says I, I have had great success in controlling my AFib since taking Flec, I’ve had zero side effects, and I believe Sotalol has some pretty serious potential side effects. Why? Well you’ve had an arrhythmia where your hr has jumped around from 105, 110 to 173 to 58 ( no actually, that was in NSR, and is my norm), but hey ho. Hello? Has he no idea that that’s exactly what being in AFib looks like? Has he not read that I’ve had PAF for 10 years? But if so, why does he think I take Flec? No thanks, I say, he looks astonished. Anyway, I say that any change to my AFib meds will be discussed with my EP. At this point I’m wondering if he actually knows what that is? Who is he?, he asks with a sneer. I tell him, and say I’ll email the EP to let him know. I also say that I know that low potassium is a well-known cause of heart arrhythmias in ‘normal’ people, let alone us AFibbers, he looks like he wants to slap me for being the jumped up know-nothing he clearly cannot abide questioning his decisions.

How frightening is that? 99% of people would have accepted it meekly. Boy, outwith the experts in AFib, the rest of the medical profession have significant gaps in their knowledge, but worse, some have the arrogance to not even try to listen/learn. What really frightened me was overhearing a nurse saying to the lady in the next room that she had been taken off Apixaban permanently by this same Medicine consultant. No referral to the dept who had originally prescribed it, who must have had a valid reason for so doing. All this being trained to the junior doctors on the ward. 😰

Rant over. Hope any future post I make is more positive!

Diane

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Hi Dexter :-) commiserations, I spent a night on the bathroom floor last spring with Norovirus terrified because I couldn't take my Apixaban for 2 days and I thinking I might have a stroke after being so ill. I keep away from my local hospital, I want to live a bit longer if possible.

I am afraid many doctors don't seem to have much idea about AF unlike many of the experienced people on this site who seem to know most of what there is to know based on experience.

I hope you are feeling better now :-)

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Thanks, I try to keep away too, and will even more fervently from now on!

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Yes, much better, thanks. Think its partially due to feeling like I’ve dodged a bullet!

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If anyone ever gets up themselves, just politely point out to them that Afib has been [recognised] as being around for 100s of years, during this time nobody has yet been able to find a cure. Unfortunately Afibbers feel that they are very much on their own, as such they have to listen to their own body, ie I know that Bisoprolol works for me, so if you don't mind....I will stick to that.

P.S. *[Recognised]*. That tells me it has been around since time began - it is not the new kid on the block, and some still know sod all about it.

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So true. Thankfully I’m big enough and able enough to stand up for myself, so far anyway. I almost wanted to say why don’t I just go from low dosage Flec with no side effects and no episodes since being on it, other than this, understandable one, straight to Amiodarone? Let’s just go for it. 😱The really frightening bit was the lady next door. I have a mental picture of this guy sweeping through the department making his lofty decisions all on his lonesome, with no recourse to the other specialist departments. Is this progress?

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I attended a heart rhythm meeting years ago where an EP said don't ever let an ER doctor change your medication always refer back to your EP specialist. I have heeded his words ever since. It's frightening how little general practitioners or medical professionals in hospitals understand arrhythmias. Best wishes and hope you feel better now.

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I love this forum. Everyone just ‘gets it’. Thank you meadfoot, think I’m going to get your wise advice from that EP printed and laminated, carried with me at all times, alongside my ‘ I take Apixaban’ card. 😂

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My first trip to ER, the dr told me I had AFib. After consultation with my Cardiologist I found out I have A flutters! I agree with you 100%

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I agree with meadfoot - we seek out specialists for the reason that they are specialists! Well done for sticking up for yourself. As you say, it is scary to consider how many people would have assumed he knew best.

How dangerously arrogant some people can be.

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Got it in one! Thanks. Love the support here.

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The lack of knowledge does worry me. After a serious nose bleed a year ago the ENT consultant wanted to do a blood test check my INR ‘clotting factor’ (I’m on Rivaroxaban). I had to explain it doesn’t work in the same way as warfarin and therefore an INR test wouldn’t tell him anything! Luckily he listened to me, and hopefully he will remember for the benefit of future patients.

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Hope you feel better for that rant. I enjoyed it greatly! Been there worn out the T shirt. Not sure there is ever a simple answer but agree we are lucky to understand our condition and defend our choices.

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Thought you would, Bob! I was thinking “what would Bob do?” as I politely declined his bright idea......😉

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Two years ago when I had my brush with the grim reaper they put me on clopidogrel and heparin injections as well as my regular warfarin. I protested but they told me it was important so I decided to let nature take it's course as I knew it would. Two nights later when I swam out of my red bed soaked by a massive nose bleed they saw my point. I said "I told you so!" They never mentioned it again. lol 😂

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Dear me! What !!!!! Its almost laughable,but not. Have had similar experience with mum,dad,dad and mum in law,and myself since 2013.

Words fail sometimes..but feel your righteous anger,sorry and frustration..

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Last time I was in hospital at xmas with breathing problems and AF the ER doctor after blood tests had come back saying no chest infection decided that he wanted to give me a dose of flurosimde (I have HF as well and only take flurosimide if needed I do not normally retain fluid) in case there was fluid on my lungs. I explained that I had already taken a Flurosimide table that afternoon and that I I had only been to the loo a few times so I did not think that fluid was the cause. He persisted about giving me a intravenous dose, I was so tired, hardly able to breath and feeling awful so I gave in. He then lectured me that I should take it daily, I explained that after the initial HF problems I was on it for 6 months but then came off it as I was not retaining fluid and only took if required and had managed this for 4 years. He still insisted that I should take it daily, I said why, he said because you have HF. I will not repeat my muttered comments to him.

Low and behold two hours after the large dose was administered and me only going to the loo twice and not passing much fluid I became dehydrated, I have never had such pain and cramps in my chest and muscles, so I was then put on a drip to correct fluid balance. He never came back to see me!!!! I have had quite a few skirmishes with medics over my 5 year AF journey, all I can say is that at times you do have to look after yourself, and I do think that any medic changing someones medication is very wrong if the person already has a cardiologist or an EP without consulting them. By the way it was a nasty viral infection that caused all my problems, which eventually got sorted.

Cassie

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In a similar way I find that when in hospital my usual medication timing is significantly changed, I have even been told “we give Warfarin in the morning not the evening.

The other thing they seem to never recognise is the need to use the toilet. They assume that all men can just Pee into a bottle easily whilst wired up to a monitor and being instructed to lay still after an ablation.

This has led to a crisis within a couple of hours for me.

Pete

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Gosh I can hear your frustration in the writing, how horrid and well done standing up for yourself...

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Crikey, that's a frightening story. I guess patients have to be their own advocates!

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Yes, we all get it. Yes most of us have been there and got several T-Shirts.

My very polite & haughty response to those remarks are ‘Thank you for you suggestion. Please explain your reasoning for believing you have a better solution to my trusted medicine? Why would it be better and what are the risks? Where is your evidence for advising me so? Would you please put that past my regular EP who specialises in this area as I am not inclined to experiment without specialist advise.’

Trouble is I, like you am usually so incensed when that happens is that I don’t remember to be logical. Once whilst in Acute Cardiac Unit the Cardiologist doing the rounds ordered I take Bisoprolol which is contraindicated for me so the only energy I had was to say NO - very loudly. He was then the one who was incensed.

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I’ve told my husband that if I’m ever ‘out of it’ in hospital, he is to instruct them that medication changes/timings are specifically notified to him, at least he can google them...he has zero medical expertise, but I reckon that still gives me a better chance! Or I’m thinking I should set up Power of Attorney (medication) in favour of my dogs.......😉😂

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This comes down to Pride. The arrogance of this so called professional is disgraceful but not untypical. Its easy to dish out pills without being concerned about the effect on the patient. Its a shame that he failed to see you as a human being instead of just an inconvenience. Perhaps if he was better at his job then his department wouldn't be so busy. Well done for standing up to this bully who obviously needs to be taken down a few pegs. Pride comes before a fall as the good book says. Anyway I hope you are feeling better now.

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I’ve never had such a blatant difference of opinion with a doctor in my AF, HF, DCM journey, but I have been, literally, piggy in the middle as two doctors argued fiercely about my medication across my hospital bed. One raised my Bisoprolol from 10 mg to 12.5, whereas the other maintained that 10 mg was the maximum dose for HF patients. It was a very nasty spat which continued for up to 5 minutes. Quite embarrassing, and I was very grateful that neither was my consultant. The phrase kept running in a loop through my head, “When doctors differ, patients die”. 🙈

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Yes, exactly. What frustrates me is their apparent inability to change their tone/vocabulary/approach when they are dealing with a sentient, articulate and knowledgeable (through experience and research) person, who is invested in looking after their own condition. This seems to make them angry! Think I can now spot them on approach.....😁 I remember describing a symptom to a locum GP as ‘organic’. He smiled broadly and said I must be a fellow medic, then? 🙄😱

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Seems I was very lucky at my last hospital admission, docs listened to me when I explained why I didn't want to take Bisoprolol instead of Diltiazem (though it helped that I was coughing all over them at the time 😁 ). I have learned not to refuse to take things but have a naturally worried looking face which helps when I express doubts. Also there is obviously something in my notes which suggests I'm well informed about my condition - and there will be something in yours too now I'm sure 😂

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Fingers crossed! Suspect they’d love to put it a bit more strongly! 😂😂

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I believe there's a code........

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Had a long discussion with a ward sister about this. They are starting to recognise that the “informed patient” exists and give training on how to deal with us. I know some people get all their information from Dr Google but healthcare professionals should be able differentiate between them and those who know their body and condition.

I sometimes think you could write a book about some of the situations which expose the gaps in knowledge among people who should know what they are talking about. We had a discussion about this on my ICD forum. My favourite was a nurse ringing a patient to confirm an appointment. Patient mentioning she had an ICD and being told, that’s fine dear, just bring it with you.

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😂

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Very well put, may I say. These are highly intelligent people, so yes, doctors being able to differentiate between informed, invested patients, and the Dr Googlers should be pretty straightforward. Intransigent arrogance is perhaps the enemy of a good initiative, we’ll see if things change (unfortunately!) Love your nurse story!

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😂😂

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😂

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Thank goodness you were able to stick up for yourself. Many people would not be able to.

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Exactly!

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I hope if I ever find myself in your position that I have the confidence or ability to defend my meds. Unfortunately my mother who was taking Epilim as a consequence of a serious brain injury to control epilepsy was denied her meds and consequently died during a fit two days later. I have no doubt that A&E departments do an incredible job but there are many among those professionals who think they know better than the experts.

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So sorry to hear that about your mum. My two previous experiences with A&E for my AFib were great - saw the same, very switched on consultant. He instantly treated me as ‘informed’, looked at my Kardia, spent ages discussing my EKG, was very knowledgeable on AFib, and I was kept in the cardiac area. This time, it was early Saturday evening, seen by junior doctor, shift finishing in less than an hour...also my presentation was with the diarrhoea/dehydration issue and very low potassium which needed intensive IV treatment - other times I’ve been there solely for AFib. So I was taken to the ‘halfway house’ ward and kept overnight. Because I was deemed a medical patient, the consultant was of course from that discipline. Astonishing ignorance combined with dangerous arrogance! Another salutary learning experience, but every experience teaches me something in this unenviable AFib journey.....

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Hi Dexter,

Wow that's the way to do it!

Sorry to read that you had such a hard time but boy it makes good reading. I only hope I would be able to deal with such arrogance so eloquently, and keep my head in the face of probably feeling pretty unwell.

I seldom write in this forum though read it most days and get great support from it.

I have permanent AF and a few other things being investigated, take Apixaban, Losarten and Nebivolol, all of which seem to suit me well, so I would resist any change without good reason.

We know our own bodies, it's where we spend all our time after all.

Stay well,

Mariah

Ps. Could you arrange to come to my next appointment with me :)

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Aw thanks, Mariah. I think it’s a function of age...I was raised to believe that doctors were one step down from a deity, but also to be avoided at all costs...I would have never have dreamed of sticking up for myself to a doctor when I was young. Perhaps the greatest (one of the few!) blessings of advancing age is that you don’t give a s*** any more 😉😂 Like you, I get great support from this forum, it’s a blessing.

I am very good at championing other people’s issues, so if you’re anywhere near south west Scotland, I’d be delighted to ‘chum’ you, as we say. Thanks for the lovely comments, I hope you keep well too.

Diane

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Well done you, maybe when the doctors see us afibbers understand our own bodies then maybe they should listen to us.

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Thanks for your "rant". I admire your style, these "superior beings" are a pest!! I haven't had such an experience but I have spoken up which did not go down to well. I have met "twats" who annoy the hell out of me and I find it hard to remain polite😉😉One such twat, when I expressed my concern re side effects of Sotalol for which I was admitted for the 3day loading, just said "you are well monitored" I knew from his response he didn't know what torsade de pointes meant returned 30mins ltr to say "I was upstairs and I felt I didn't explain enough, but that's not a term we use" I lost it and said funnny that,as it is used by by most cardiologists. I told my cardiologist and he just said sure that's why you were in. Honestly, it is not just annoying but blinking scary. Thank God for this forum I have learned so much. Best of luck to everyone and thanks for the laughs too.☺☺

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Good grief, what a horrible experience for you. I knew from this forum that Sotalol could be problematic, I’m so thankful for all the people who share on here too.

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I recently had to attend the emergency gp unit at our local hospital because I had tonsillitis and needed antibiotics. The doctor I saw who was just a gp went through all my meds criticising them and said I shouldnt be on bisoprolol and flecainide together and I explained that it was dangerous not to be on both meds but he wouldnt have it but did say that of course it was up to my EP not him, thankfully but I was pretty annoyed because I had a temperature, felt ill and hadnt gone there for a drug review. Well done for standing up for yourself but it is very worrying. The only Apixaban I have missed was the day I had my ablation and the staff wouldnt give it to me. I did make a formal complaint afterwards about my care generally including not being given access to the medication I had brought in with me. Hope you feel better soon.

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Thanks, much better now. I once had a GP who was really nice, really listened, was really helpful, I trusted him a lot. Once whilst discussing my AFib, I mentioned that during episodes, I had to go pee a lot, and copious volumes. He shook his head and said, nah, there’s no possible connection, so I was left feeling rather silly. Not so long after, I saw it mentioned on this very forum, turns out it’s not only a common anecdotal symptom, but an actual physiological response by a heart in distress to rid the body of sodium, if I remember correctly. I’m not criticising GPs, they have a terrible job, and couldn’t possibly know everything about everything - but such experiences have made me realise that we have to be our own advocates and not accept that they’re bound to know what they’re talking about. In some cases, they simply don’t.

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Frightening! I actually went to the emergency room one night with arrhythmias and the dr told me not to worry, they aren’t dangerous and everybody gets them! I’ve had them for years and take meds for them. I think he needs to go back to med school.

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I had exactly that same response from my gp after my first afib diagnosis in emergency.

He never referred me to a cardiologist.

He prescibed Atenolol because that's what he took plus Xarelto.No testing done on my heart at all. I took that prescription to a pharmacist. I just said something about how I couldnt believe that I suddenly had to take this medicine. She said I dont think you should take it. She said she'd put the script in my file but I probably shouldnt take such "strong meds". The 1st emerg doc had said he didnt think I needed blood thinner and said to go to see my gp.

I didnt know what the heck to do after all the conflicting advice.

Two weeks later had a really bad episode and had ambulance flying down the streets with lights flashing with the paramedic saying it's in afib, now it's vtach, oops afib, vtach on and on until hospital. That finally got me a cardiologist really fast!

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It’s maddening. I’m glad you are seeing a cardiologist now. I just saw an EP Dr at the Cleveland Clinic in March to get a second opinion, and to find out if there was anything else that could be done as the meds don’t seem to be working like they had the first few years. He thought perhaps the very bad episode I had five years ago could possibly have been AFib the way I described it. I’ve never had another like that and pray I never will. That was how I was tested and found out I had mild coronary artery disease. Anyway, this dr in March ordered an echocardiogram and a 30-day heart monitor. I was glad and thought that now they’ll see what I’ve been talking about for months. The echo was normal, and evidently they think the monitor results were considered normal, even though I had so many irregular beats the whole time. They feel all my pvcs and pats are normal!? I had a bad weekend a few weeks ago and went to the ER. They said my tests were normal even though I was getting irregular beats. I know what they feel like as I’ve had them since I was a child and have had numerous episodes of them last for as long as three months at a time. I’m 73 now and have never had any other symptoms, for which I’m very grateful. At the same time I feel like I must be going crazy if the professionals aren’t seeing what I’m feeling. I told my cardio’s nurse that I felt he had done all he could for me, so they encouraged me to make an appt with one of their EP docs. It’s in June. I feel as if they think well, she’s lived this long feeling this way, she shouldn’t complain. Maybe they’re right. After all, I have no restrictions, no pain, nothing but the blasted beats that make you feel like you’re going to croak every day. All six of my grown children get them and my mother had them. I really was hoping to find out something that would help my family as this is obviously being passed down in my family. Sorry, I seem to have written a book. Thanks for listening.

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I’m jealous! I would give anything to get to the Cleveland Clinic. 😊

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I was surprised that I got an appt in a week! It’s an amazing place.

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I benefit from your 'rants' It's teaching me that I'm going to have to be a bit more persistent and outspoken. All the 30 years of heart problems my husband has had we have had so much praise for our ability to work along with heart staff but he had a heart attack!!!! I feel like a lesser being because I I have heart failure and I'm old and it's a 'family thing'. So no cardiologist, discharged, no review of medication. The future looks bleak!

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I sympathize greatly Cats, now that I’m old I can remember my Mom saying that doctors just don’t care once you are up there in age ;(.

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I watched my mother go through it with her doctors. Ageism is alive and well!

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Wishing you well. Maybe you can take some inspiration from the people on this forum who have learned that we have to speak up for ourselves, and you can talk the nicest doctor in your practice, explain that you are extremely worried, and would not rest unless you get to see a cardiologist. I paid £200 for a private appointment with an electrophysiologist, it was without doubt, the best money I have ever paid for anything in my whole life. If you can find that kind of money, why don’t you consider it, also, it gives you the ‘excuse’ to see your GP for the referral. It might give you peace of mind that there are no options available, or you could walk out with a prescription/complete review of your medication. We must stop thinking that we are ‘bothering’ the doctor, even if that’s what we were brought up to believe. Good luck.

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