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Atrial Fibrillation Support

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Are there any sites that show you how to read an Alivecor ?

Whatamug1 profile image
18 Replies

Hi - still feel like I'm invisible, so following advice from you kind people I rang and made an appt - which turned out to be a telephone one ... this was fine! My 'new' Dr called - (shuffling of papers in the background) & the first thing he said was "You suffer from Anxiety" & I replied "Do I". He then asked "why have you called then?", to which I replied I didn't you called me instead of a face to face & it's about my echo & ECG results - to which he asked "What results?" & there was more shuffling and he asked if I had the results. I said I had a copy of the Echo and patient summary etc & gave him the dates but that I'd not received a copy of the ECG. He then said "Id better read your notes and call you later" Which he did - (This was Monday) ...He said that he was chasing up the ECG & would call me Friday a.m. - On Friday he said that apparently my Consultant was on holiday so he's asked for someone else to read them & he'd ring me next week (this week just gone). The echo & ECG were done nearly 6 weeks ago. The consultants report said reduced left ventricular systolic function but due to constant Bigeminies couplets & triplets it was difficult to read etc & that he'd send ecg results on when read ( this dated 03.10.14). Perhaps things do take this long ? & Im being unreasonable - pls tell me if I am. I did enquire about meds when I talked to my 'new' gp but he said not until he knows what he's dealing with. In the meantime I feel like I'm going to faint on a regular basis - suffer nausea - and chest discomfort of different kinds. I can't say I feel anxious/depressed etc ...just 'forgotten'. Also more or less bedridden as I feel so exhausted and in pain (flu like symptoms from my FM ). Sorry this is yet another diatribe ....but if you'd read my other posts you'd understand why I feel like I'm going it alone. Just wish I could self refer but know I'd need a Dr to help me do this. I just feel so very tired. Ann

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BobD profile image
BobDVolunteer

This really is appalling treatment and you should right and complain to your local CCG if you do not get some results soon. In the meantime you are left in limbo and suffering. I know it may go against the grain but why not make a private appointment with your nearest EP. You can always go back on NHS afterwards.

Bob

Whatamug1 profile image
Whatamug1 in reply toBobD

Thx Bob - so pleased to hear from you. I'm pretty sure there may be an EP down here (Devon) having read a post from C Dreamer ? (could be wrong). Won't I need a Drs referral letter tho'. ? If not I'll go with the notes I do have ASAP. Including the patients discharge summary saying my pains etc aren't caused by a cardiac prob. If I survive this and when I'm stronger (on top of this I've discovered that all that confusion & other distressing symptoms were caused by glomerulonephritis - something an antibiotic could have dealt with). Strangely I received a letter from the Care Quality Commission - Survey, about my 'stay on the ward' - but have requested another to fill in (tic boxes) about my treatment (abuse) on A&E. We'll see. I'm not sure what the CCG ? Is. I have a feeling that when I was turfed out of A&E with my time wasting label & told that there was nothing wrong with me as my Cardiac notes told them there wasn't - (strange really as mine hadn't and one still hasn't been produced yet). That they were reading my sons results. Only found out from him recently that because Boots gave him 100 mgs of Atenolol in a box marked allopurinol 100 mgs & he ended up in A&E on the cusp of an MI - that they did a follow up holter as he has one remaining kidney & bladder probs (congenital). He says he's also now very anxious about taking prescribed meds & he's been referred to psychs on 21.10.14. So yes I can see where they made their mistake from this angle but it doesn't excuse how I was treated. IT WILL OUT - when I can find some energy. What I would appreciate are links to the most appropriate sources - I'm happy to copy in all other sources - !!! Bob my son is high functioning autistic and unfortunately had a TBI at 13 and now has some very severe mental health issues. He works, lives with his partner & won't touch the benefits system. Anyway I've gone way off track again (as usual). Read about a get together down this way - Taunton was it - would love to put a face to all the help I've been given so will keep checking for any updates. Thx Ann

CDreamer profile image
CDreamer in reply toWhatamug1

Hi Ann, so sorry you are being so messed around, it is disgusting treatment. Dr Matthew Lovell is the new EP at the RD&E, you can look him up at exeterheart.com. He trained in arrythmias with Prof Schilling at Bart's, London. He is right on top of the latest thinking. I saw him for the first time yesterday and was impressed. Am going to post about it as some interesting general stuff. He is desperately trying to start PVI ablations going at the RD&E, for AFib as well as AF, but that is another story. He told me that 95% of AF patients get treated outside of Devon, bit damming isn't it! He is hoping to change things and educate local Doctors into the latest thinking. I can highly recommend him and he does see private patients at the Nuffield, Exeter. I do hope you get somewhere very soon and get the treatment you deserve. Very best wishes.

Whatamug1 profile image
Whatamug1 in reply toCDreamer

Thanks so much for that & I'm sure there are a few Drs down here who will be very pleased. I'm not sure at the moment as to what is going on but it's great to know he's just down the road. I will take actions into my own hands shortly as I'm a bit fed up feeling so exhausted - Just hoping the 'new' Dr who said he'd contact me last week actually does.

CDreamer profile image
CDreamer in reply toWhatamug1

Hi Ann, so sorry you are being so messed around, it is disgusting treatment. Dr Matthew Lovell is the new EP at the RD&E, you can look him up at exeterheart.com. He trained in arrythmias with Prof Schilling at Bart's, London. He is right on top of the latest thinking. I saw him for the first time yesterday and was impressed. Am going to post about it as some interesting general stuff. He is desperately trying to start PVI ablations going at the RD&E, for AFib as well as AF, but that is another story. He told me that 95% of AF patients get treated outside of Devon, bit damming isn't it! He is hoping to change things and educate local Doctors into the latest thinking. I can highly recommend him and he does see private patients at the Nuffield, Exeter. I do hope you get somewhere very soon and get the treatment you deserve. Very best wishes.

Finvola profile image
Finvola

Hello Ann

This is appalling treatment of any patient - you are not in the slightest being unreasonable and deserve better than this brush-off from a GP. I could rant on and on about the massive gaps in your care, but, the important thing is to get the treatment you need. You are certainly not alone in being dismissed as an anxious woman - with palpitations!!!

I don't know how the system works where you live, but here any GP can refer you privately to a specialist at your request. Can you get copies of any documents relating to your case or ask the GP to include copies with the referral? If so, take those along, including any Alivecor tracings you have as all of this will save you having the tests done again privately. I would also take a supportive relative or friend along to the consultations as it's easier to think and respond with backup. Happyjo is right - you need to be calmly assertive at a time when you must need sympathy and a good hug.

Keep well and very best wishes xx

Whatamug1 profile image
Whatamug1 in reply toFinvola

Bless you - No as usual I've been the one giving the hugs & support out there & although I know it's needed it leaves me emotionally drained. People think I'm strong & Im not & haven't been for ages. Was just texting Jo when this came lol

Thank goodness I found this site. It's still almost impossible to believe that in this day and age that so many professionals still follow Freud's histrionic's theory. I still have a trump card up my sleeve. The locum GP who arranged the referrals in the first place. She's just normal & when I realised how this was going pear shaped ...I made an appt with her when she was next due in - So roll on Nov 14th ...! it's been a long time coming. X

Finvola profile image
Finvola in reply toWhatamug1

Good move, Ann. Just looked up Freud's histrionic theory - it's as good an excuse for not doing one's job as I've heard applied to some doctors!! :)

Forgot to reply to your headline question. You can send a tracing to Alivecor and receive a generic sort of analysis (costs £5), or your normal (lovely description) GP might help?

Whatamug1 profile image
Whatamug1 in reply toFinvola

Lol - loved studying Freud ......because he brought so many others out of their closests ! I don't have an Alivecor yet - but it's winging it's way to me so thx for the info as the good doctor only turns up as a locum every 3-4 months.

Whatamug1 profile image
Whatamug1

Lol - nothing shocks me Jo. I don't judge usually either. But I'm more than a little disheartened at the amount of my time that's being wasted - in pain & being unable to do relatively normal things ie housework without ending up breathless & exhausted. The last time I was in a similar quandary ATOS diagnosed me - She said - IVE READ YOUR NOTES and you've been treated appallingly etc ......So being a resourceful person I've recently applied for PIPS cos I realise that this may be my only way to a diagnosis !!!

Hi Ann

I got nowhere with my GP's and I was gradually becoming more and more ill, and this went on for a year, I could hardly walk, even slowly. Eventually TOLD my GP I wanted a private referral to an EP in Birmingham, and I named the one I wanted. A consultation cost me £150 and he ordered a monitor to be fitted (NHS), and he got to the bottom of the problem and dealt with it. I had an aborted ablation, followed by different drugs till he got the one that worked. It was the best £150 I ever spent in my life (I may have had 2, so that's £300? can't remember). Everything else was NHS. Shouldn't be necessary but sometimes it is.

Good luck, and I hope you get sorted soon.

Koll

Whatamug1 profile image
Whatamug1 in reply to

Oh I believe in 'going private' - worked as a exec sec & sec to the chairman of the med man committee in the 80's (advent of private hospitals). I had to use my private medical insurance on many occasions when my son was born because of the NHS... He's only alive because of it bless him. So I know I can arrange the pennies, next I need to know if there's an EP closer than Bristol as I'm useless at moving far at the mo'. Thanks for your reply Ann

jeanjeannie50 profile image
jeanjeannie50 in reply toWhatamug1

There's an EP at Derriford Hospital near Plymouth - Dr. Guy Haywood. I had to be referred to him by my cardiologist, when Af drugs had failed to work.

Best wishes

Jean

Whatamug1 profile image
Whatamug1 in reply tojeanjeannie50

Oh yes ! Thx Jean - great news. X

Whatamug1 profile image
Whatamug1 in reply toWhatamug1

Now - have you ever written on this site about your experiences of ablation ?

jeanjeannie50 profile image
jeanjeannie50 in reply toWhatamug1

Yes. You can click on my icon to see my posts. I've sent you a private message. Jean

Whatamug1 profile image
Whatamug1

Lol - I know what you mean. Just finding it hard to adapt as I would always just push that bit more. Pips is short for Personal Independence a Payment (a government thingy so that you can 'buy in help'). It's all to do with the benefits system here. Lists are good - I always use my calendar because I lose lists. ann

Whatamug1 profile image
Whatamug1

Hi Jo - all women and men from all stations in life should read this .....it should be compulsory for everyone x

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