Hospital has lost evidence of my PAF, so no... - AF Association

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Hospital has lost evidence of my PAF, so now they are saying I don't have it...

morgan69
morgan69

In 2014 I had an Afib episode (over 280 bpm) that didn't respond to medication, so I had a cardioversion in A&E. They started me on 5mg Bisoprolol and I have Flecainide as my Pip.

About two years ago my blood pressure started getting high when I episodes so the Biso was raised to 10mg. Structurally my heart is healthy, hence no other meds.

That's the backstory. So last year a posdible ablation was mentioned and they wanted a holter to confirm the Afib that was diagnosed in 2014. Because they lost all written evidence of the big episode prior to the cardioversion. No episode was captured on the 5 day Holter last year, keeping in mind that the Biso is controlling the rate and they can be tricky to catch.

So now Cardiology has decided that as there is no evidence (the evidence they lost) it must be something else or nothing at all. I am a bit like 'are you having a laugh'? I can feel the episodes ffs. I get them at night quite often, and am awakened by them.

I must admit I am quite angered by this laissez faire attitude just because it is a mere wonky heartbeat. I am so unimportant that my last visit was with a nurse practitioner who more or less said well just come off the Biso slowly ect. As soon as I stop using my Biso the episodes return and my blood pressure starts getting high again.

I am seeing the actual living breathing cardiologist in a few weeks and expect to be weened off my drugs, because hey it was only a random episode of tachy right.

Does anyone have any advice in this situation or has experienced something similar?

22 Replies
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Hidden
Hidden

Hello Morgan....very frustrating for you to say the least.

As the AF episodes were not captured on the Holter , are you able to get o Kardia device? You are no doubt familiar with this device which is often mentioned on this forum. It works with most smart phones and tablets. This way you will be able to capture your episodes and present them to your medics.

Incidentally I always keep my discharge papers from hospital as evidence of treatment should there be any dispute.

morgan69
morgan69 in reply to Hidden

Hi Yatsura,

I actually went as far as getting my records sent to me and to the hospital ( there are two that work hand in hand across two sites Hull/Castle Hill), so I could see for myself what was missing. The EKG from the event prior to the cardio and all documents from the ambulance are non existent, only the EKG AFTER the cardio is there and the meds/discharge/diagnosis.

I have been considering buying a Kardia do you buy them straight from their site or a third party retailer like Amazon? And are they better with an Iphone or Android phone (Samsung)?

Hidden
Hidden in reply to morgan69

I have a Samsung phone and tablet . Both work . If you go to Kardia website they will let you know which phones are compatible. I bought mine from a company called PMS instruments Ltd online....very good to deal with and best price at that time. I wouldn't be without mine. I find it very reassuring. I'm always surprised at the number of medics who are not aware of it and are quite fascinated.

Sandra

Hello Morgan :-) you GP would normally be informed by letter of the treatment you received at the hospital and your condition at the time have you checked with them.

morgan69
morgan69 in reply to doodle68

That is a good point. I will check with them tomorrow. I was told it is quite common for bits of paper (ECGs) to get lost in a busy A&E.

One hospital is basically saying the other misdiagnosed but are just guessing because they never saw the ECG. The mind boggles.

Morgan re Kardia , I use mine with an Ipad I don't have a smartphone,

I purchased mine from the Kardia website ...

Compatibility...

alivecor-uk.myshopify.com/p...

morgan69
morgan69 in reply to doodle68

Yes. I have just been looking at them. I think it is time to invest in one, even if just to prove I am not imagining my episodes. Thank you for the link.

I can totally understand how upset you are. You have been given some good advice and I don't feel I have anything else useful to add. I really hope your cardiologist listens to you and your concerns and that the appointment goes better than you anticipate. Be really open and tell them just how upset and worried you are. Let us know what happens.

morgan69
morgan69 in reply to grandmadogs

I just feel like the treatment for Afib is contradictory. On one hand you are told to control the rate to ensure you don't have a stroke for instance and then on the other hand the medical world acts like it is just a sniffle.

Hidden
Hidden

If you have an episode I would call 999 when they do a heart trace ask them for a copy. That's what I did because my cardiologist was the same attitude as yours. I have other heart problems and resus doc said always call an Ambo and come in.

I would also ask the question of whoever has been prescribing the 10mg of Bisoprolol, which in my opinion is quite a high dose. On what grounds were they prescribing that. There must be a record somewhere as Trusts are obligated to retain your records for a statutory amount of time and they have no excuse for not making the effort to find them.

morgan69
morgan69 in reply to KentAF

My GP raised it from 5 to 10 when BP started going really high when I had an episode. I kept a log of BP and heartrate.

The Bisoprolol has completely changed my quality of life. I am okay with the fatigue and weight gain because it does control the rate and my BP.

The nurse practioner and one of the doctors insinuated that I should be glad it might be nothing. My answer to that was but I know something is happening..I can feel the episodes. What happens if you take me off everything and I have a stroke because my 'nothing' is actually what was diagnosed 4 years ago.

The cardiologist says the high tachycardia is more likely to have been a 'something ST' (can't remember) and not Afib because very high tachy is unusual in Afib.

KentAF
KentAF in reply to morgan69

May have been SupraVentricular Tachycardia which is what I have, but it escalates into AF, which is very hard to catch. I too suffered when put on 5mg of Bisoprolol combined with Flecainide and no one would listen to me either. My BP went low on activity and high on resting and they made me feel as though I was going mad.

When they try and trivialise your symptoms and conditions it is worth reminding them in as nice a way as possible 'who the risk lies with' - them, and not you, as you are doing everything you can to get a diagnosis which will ultimately save the NHS money and improve your quality of life.

Always worth having a dialogue with the PALS, The Patient's Association or the CQC to express your concerns as I feel sure if they are displaying this attitude towards you, you will not be the only patient not being treated properly. I know this is hard to do when you are not feeling well as, like many using this website, many of us have been there and done that.

Best wishes

morgan69
morgan69 in reply to KentAF

Thank you. The advice on here is always exceptional because people understand what posters are going through.

It does make me wonder how many others are treated in a similar fashion. If I had a pound for every time a medical professional has gone 'oh just AF..or waved it away' I would have a few tenners in my hand.

I am seeing the consultant on the 22nd and will be making those points about risk and quality of life. If I feel I am getting the brush off or as I suspect they plan to take me off all meds, get in touch with PAL.

Hidden
Hidden in reply to morgan69

I've gone into the 240s in AF ..very frequently.

morgan69
morgan69 in reply to Hidden

Exactly. Mine tend to be high too. I have the odd brachy, but in general it gets really fast during an episode.

Hidden
Hidden

I'd enlist the help of your GP, who as doodle68 says, may have records of what was lost. The surgery may be able to lend you a pocket event monitor. High blood pressure can be treated by a combination of drugs and not just by a high dose of Bisoprolol.

As Hidden says it is always worth, when you have an ECG taken, asking for a copy for yourself and the ones taken by First Responders or paramedics can be very useful as you can arrive at A & E in normal rhythm.

Absence of activity on a holter monitor doesn't prove that everything's fine all the time, although it can show that you don't have lots of little events.

The kardia is an excellent tool and particularly useful for someone in your situation. I would do this ASAP in your shoes. Then, change GP if not supportive and ask for referral to new cardiologist for 2nd opinion. Make sure it is an EP.

I was there too so persevere.

Good luck 🍀

morgan69
morgan69 in reply to lallym

Thank you!

lallym
lallym in reply to morgan69

PS. For me, the most difficult bit was early stages and diagnosis. This was feb 2013. I had ablation in November 2013 and after 5 months recovery with lots of arrhythmias bumps etc, all went quiet. So now nearly 5 years and life back to normal.

Are you on anticoagulants

morgan69
morgan69 in reply to lallym

No. I am considered low risk because my heart is healthy aside from the arrythmia and am 48 (44 when it was diagnosed). I score one point on the risk assessment for being a female and none for the hypertension, because the cardiologist didn't think that was important.

Hidden
Hidden

This is so typical of treatment for pAF. Now 6 years from diagnosis I have taken to treatment at home. This site has been invaluable and helped no end. I am armed with Coagucheck for INR readings blood pressure monitor for BP and a heart rate monitor for AF readings. As my Cardiologist informed me 'it would be much easier to treat you if you were in permanent AF' Maybe but I am the one on the suffering end! Now I only go to A&E if the pain is bad and I feel like passing out. Good luck and I hope you get sorted out😉

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