Well can’t thank you guys enough for all your kindness and advice but I am here again and will no doubt drive you crazy before long – I am at a loss what to do and who to take notice of, doctor, nurse, cardiologist, friends….. I know I need to see an EP but waiting list is months on NHS in UK so will have to save up and go private – so what shall I do for now – I will briefly outline my journey so far.
42yrs old, female, had hole in heart surgery at 8-discharged no problems. Had gastric bypass, lost 13st now healthy (ish) weight.
Diagnosed with Parox AF two weeks at A&E, heart rate 178bpm for hours – just about to shock me and went back to normal, sent home.
Scared to death, doc gave me 1.25mg Bisopropal, nothing else said I was 0 stroke risk said I should be fine and sent home – ended up on A&E again with HR 160bpm for hours and went back on its own. Cardiologist through NHS would be 8 weeks wait so got a loan for a private consultation and echocardiogram (thatnearly gave me a heart attack £450.00 arghh!)
Echo showed small enlargement where I had heart op as a child but structurally okay- Thank God. He said he was certain the heart op had caused the AF. Said I will have to learn to live with it and probably continue to persistent AF and when it happens again I have to ride it out – Don’t bother with A&E – I still can’t get over that!!
This was last week; my heart rate is now 40bpm resting and not much more moving. I am so tired and depressed and scared. I still had a bad AF episode on the tablets (Yes and you all helped me through it!!)
What I can’t seem to find out is what is the future for me – is there medication that will make me feel ‘alive’ again – is there lots of options? I am not 100% if I can have an ablation due to heart op. I have this awful vision of me dropping dead, having a stroke or eventually been bed ridden with heart failure? Does this happen? Everyone keeps saying you can live with it, it won’t kill you but what is the quality of life like? My heart rate id 40bpm and steady now but I feel rubbish, my chest feels jittery – is this AF – I think I should also buy an AliveCor when I can afford it – are they worth it?
Finally ( I PROMISE) I am gonna ring the doc tomorrow what should I ask?
Sorry I did promise this would be short and brief - !!!
Sara
Oh I am in Bradford, UK is there anyone close by? x
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booboo73
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Hi Sara, I can see from your post how anxious and scared you are and I do feel for you. I am not in a position to give much advice, all I can suggest is you could speak to someone on the AFA helpline, it does help to talk to someone who understands how you are feeling and may have some advice for you. Sometimes we just have to be polite but pushy patients. Some of us seem to get follow up appointments etc some of us keep getting discharged and I know this can make you flounder a bit. Please look after yourself, you deserve to have your health kept at an optimum level so seek help when you feel you need to. Everyone on this site is so supportive. I don't post often as others have a lot more knowledge about this but I understand your fears and worries. I think most of us have or have had them. My best wishes to you. Kath
Thank you Kath and yes this site is a lifeline for me at the moment. My Doctor is fab and very supportive and is so disappointed with the NHS and waiting times and I know he will help me all he can is I can get a bloody appointment!! I think I will have to get a further loan to pay for an EP, it will be worth it for peace of mind and this is making me so low and scared. Since my diagnosis I have not left my bed, too tired and scared but over the weekend I made myself go out shopping with people I trust and its improved my mood and outlook. I just want to know 100% what I am dealing with and then I can move on. x - x
We have mostly been where you are, booboo, feeling very shaken, with the feeling a stroke is just ahead and life as we knew it seemingly at an end, but most of us improve with the right medication. AF tends to make us toe the line and be health conscious, which is no bad thing.
Thank you Rellim. Yes it's made me toe the line indeed. Tried for years to stop smoking - was on at least 30 a day - Gave up the moment I found out about my AF - Fear not willpower!! Plus the alcohol went months ago as it was making me feel 'jittery' - now I know that was probably AF !!
Hi Sara. Bless you it is very scary and you do feel that you are going to die when in AF.
I was like you for 7 years feeling scared all the time, but since joining this forum and hearing other people's experiences it has helped me to realise that they are all still here, they haven't ' popped their clogs ', so it does help to get things into more perspective.
The meds do make you feel tired, lethargic and depressed. I saw my GP about this and she actually recommended that I went on antidepressants which I have done and the depression has lifted and I do feel they have helped calm me down so I'm coping better.
I'm originally from Bradford but live in Lincoln now.
My sister lives at Cleckheaton, so I asked to be treated at Leeds General so I could combine my treatment with staying at my sisters.
Overall it has been ok at LGI, just a bit slow but that's the NHS nowadays , but it has shown that though AF is taken seriously ultimately it's not going to kill us as long as we are on anticoagulants to help prevent strokes.
Definitely you need to be seen at the BRI or LGI ASAP just so that you can start the ball rolling.
Good luck and let me know how your AF journey goes.
Hi Denise, just butting in if you don't mind, I noticed that you live in Lincoln, I too was born there, but at the moment I live in Skegg Es, but I often come over to Lincoln ( my son lives there) would be nice to meet you for matter, I don't know anybody here who has AF, and it's always nice to meet someone I the same situation . Take care Sann
Hi Jo and thank you. I have been trying to ring my doctors surgery for an hour now and can't get through Grrr. But I remember him telling me he was referring me to Westcliffe and upon research it seams a Dr Mathew Fay works there who is amazing dealing with AF so I am gonna hold my horses until I speak to my doctor and find out timescales ect as to be honest it would mean a payday loan to see him sooner. x - x
Hi Denise - Oh I wish you still lived in Sunny Bradford!! I am 5 mins away from Cleckheaton, in Low Moor. Anyway from the A&E diagnosis I was sent home and told to ring Doctor - the waiting list to even see a Cardiologist would be at least 6 weeks - only sooner if I had a heart attack or severe chest pains and God only knows how long for an echo cardiogram So had to pay private (£450.00) and to be honest its not something I can keep doing financially. I am doing all I can to help myself and I think this will help me mentally. I am so fed up as since my Mum passed away I was on max antidepressants and therapy - was just seeing light at the end of the tunnel and weaned off all medication with my doctor and now have a diagnosis of AF 3 weeks after coming off all meds !!! I really don't want to go down the anti depressant route again but I will if needs be x
My Doc won't put me on thinners as I am zero risk - I would like a mini dose of something to make me more confident of this but will just have to wait and see x
On a brighter note Denise, Lincoln is beautiful, we passed through it last month on our way to Norfolk- never been before- really is a beautiful place xxx
I'm no expert but I'm just going on what was said at the AF patients day which was something on the lines of you don't need to be on anticoagulants if you are under 50 and score a 0 on the Chad score.
Maybe your medical history is relevant for you being on Warfarin?
Like I said, I'm just a lay person but I'm sure that was said at AF patients day.
If anyone else was there who reads this please let me know if I've got it wrong.
Yes I do take an asprin even though the Doc says it's no use, just makes me feel a bit of control! I have a doc ringing me in morning - my usual one isn't available so just want a quick work about this tiredness and my pulse is so slow it really worries me. I think the more info I have the better I will be although I do tend to become obsessed but this is my heart and I want the best I can for it - I spent 20 years hiding away from everyone and never left the house when I was 30stone - even when family came I hid upstairs so I need to fight this AF as I want to live me life now and enjoy it!! x 0 x
For me it's the Bisprolol that makes me feel drained and lethargic and probably the flecainide.
My average pulse rate is 45 when resting and that is due to the meds but no one seems to be concerned about it being so low.
One of your replies was about Dr. Matt Fey, he is lovely and spoke at the AF patients day. He is passionate about AF and if you can get to see him he would really help with how you're feeling and put your mind at rest a little bit.
Look after yourself and who knows, I might just bump into you at LGI.
Hi there , when you get an appointment for the ep through ring the appointment line or his secretatary and ask to be put on the cancelation list , I too was very desperate to see my ep and thought about going down the private route but it does end up very expensive so I just waited ended up at a&e 11 times in about 4 weeks with fast af , it took time to get the meds rite but was still breaking into af , that's when I had the ablation , not sure if its been successfull or not just yet but I'm sure there's something they can do for you there very clever talented people these ep guys , all the best Paul
Thank you Paul - Yes I am researched out now!! As soon as poss I am gonna pin my Doc down with questions and if the wait on the NHS is crazy I shall sell my soul to the devil and go private to see an EP - Think it will be another £250 but what I save on not smoking now will cover it plus I have some bits I can sell x Good luck with the success on your ablation I am really hoping I may get one from what I have read! xxx#
Hi again , I no how desperate you must be feeling it all took me by surprise after running for many years to keep fit and well ,not drinking and not smoking I'm no saint lol , then bam af hit me , I think if you go into af and its bothering you go to a&e , I think if you can just get the ball rolling with the nhs it will all work out ,what about stating you will go to another ep ,I had to travel from Nottingham to Leicestershire to see mine , going down the private route really does cost and I don't see why you should have to pay when there's a lot of non English people getting there care for free only a little rant lol
Oh Paul I could rant all day - I hate the idea of going private, I had to get a loan of £450.00 to pay for last week otherwise it would have been at least a six week wait to even see a cardiologist never mind a bloody echo - I bleated the best I could to get in earlier but the only way they would fast track me was if I had a heart attack or severe chest pains. Plus it will be £250. to see an EP xBloody Cameron - I just hope Corbyn gets the power he deserves to turn this around - mini rant over! x x x
Golly you girls go through it! (Sorry, and guys). When I had a scary SVT my heart rate was 170 for 5 hours plus awful nausea from the adrenalin and cortisol dump. What dropped it was the doc using a vagal manoeuvre - you can read about them on the 'treatments' bit of this site. It was an immediate plummet to 90, then a slowing to 70. I don't know if this would help you to have something up your sleeve to try.
I notice a few in here use them when in an episode and are managing their situations and the A Fs don't appear to be killers, although It's still scary when it hits, and at least there's something to try first before meds. I was told only to take a 750mg aspirin every day but if it all gets out of control again to go straight into a&e. Keeping calm, no heavy meals, alcohol and caffeine in moderation, seems to be key.
I think you're aiming for a heartbeat n the 60s, so yep, 40 isn't good as Happyjo says.
Do hope you get this all managed and feel well again soon.
Also to Paul, hope your ablation has been a success.
Thank you Jakisu - that made me think the Cardiologist was looking at my neck last week and touching it and I did mean to ask about the Vagal thing - bugger! I shall ask my doc when I see him x So much going on in my brain - that feels like it's in AF now!! x x x
Hi Sara, Mat Fay is a local GP who works at the Westcliffe Medical Centre. He also set up, and runs an arrhythmia support group that meets there periodically. Unfortunately there is not another one until January - details are here : - heartrhythmcharity.org.uk/w...
I've heard him speak at a number of conferences and he is one of the good guys. I'm sure he will be able to help if you can contact him. As others have said AF is in itself not a killer, so relax in the knowledge that there are far worse arrhythmias around - and a whole host of other nasties too. XXX
Oh Cyril thank you - I was looking at the link last night and was so upset I missed the last meeting but I shall be there with bells on in January!! I looked at him and he looks really kind - sounds daft but when I saw his pic I knew he would be someone I could talk to.
Yes I think I am finally accepting AF now I just want to get it by the neck and control it now the best I can and I know there are much worse bumpy hearts and I am so grateful my ticker is structurally ok apart from a bit enlarged where I had my op!
I don't have much to add to the good feedback you've already gotten. But maybe one or two things might be useful.
First off, a HR of 40 is way too low for anyone but an Olympic-level athlete. Your circulation is seriously impaired, which is why you can't do anything to speak of. Many major body functions depend on good circulation, such as perspiration, immune processes, digestion, blood cleaning (circulation through liver and kidneys), and muscle metabolism. You might want to consider getting the rate up to at least 60.
You said, "I would like a mini dose of something to make me more confident...". I would suggest that you watch your experience as though you were conducting a laboratory experiment. Note your symptoms - maybe rate them on a scale of 1 to 10 - as well as how you're experiencing those symptoms. Are you afraid? nervous? jittery? spaced-out? etc. Just watch and note what's happening. Part of that is how deeply you get involved in the emotional aspect of things. Don't try to change anything, just pay attention and note what's going on.
Do this consistently and you may find that you get mini-doses of confidence as you learn that you're bigger than whatever's happening. The awareness that comes from seeing clearly brings (some measure of) peace and confidence.
As I write this, I'm noting high levels of dizziness (level 7-8), paresthesia (5), and fatigue (4-5) due to the long-term after-effects of flecainide. Yes, it's disabling. No, it's not the end of the world. I am shoe leather, tough and resilient, and mindful awareness is the lanolin that keeps me that way - most of the time. It can be this way for you, too.
Yes Kodaska its far too low and I am certainly no athlete!! Its making me so tired and fed up. I LOVE your idea of doing the chart level of how I am feeling and shall start that asap - I think I need to do all this to empower myself and that will bring confidence to live with it. Just ordered a BP monitor and looking into an AliveCor!
Hi , I got a little book and wrote everything in there dates things happened , times it happened ,meds I took, trips to a& e / doctors , blood pressure,pulse rate ,questions I needed to ask doctor ,cardiologist ,ep etc , also kept every letter I received in there also I ended up putting my blood pressure monitor away and stopped continually checking because it was making me feel more anxious and scared ,this was good advice from this very forum just try to go on how you feel , cheers Paul 😊😊
Brill advice from so many. Just to say that there is an app for your phone that does a quick reading from the pulse in your finger via the flashlight, and logs it so you can do a print off any time, it was also recommended from this forum. I agree don't get too hung up or ocd with too many readings, but for a quick check it's really simple. It's called Cardiio.
There is a huge amount we can do to help ourselves, please have a look at SRMgrandma's posts, I think while you are waiting to see the relevant consultants, this may give you something to concentrate on and help make a start. Best wishes.
May I just add a note of caution about Resting Heart Rate?
A low RHR is infact quite desirable and doesn't always indicate an underlying problem. Although active and fit I am by no means an Olympic athlete. My normal RHR is around 45, at my fittest it has been as low as 38.
I assume however that your's might have been in the 60 to 70 region prior to taking Bisoprolol? I have been given Bisoprolol as a "pill in your pocket" but think it unlikely that I will use it. One of the main reasons for my thinking is that it states on the "Information for the user" that you should not take Bisoprolol if you have a slow heart rate (less than 60 beats per minute).
If you are taking Bisoprolol on a daily basis and it is lowering you RHR to around 40 then it does rather sound as if you should seek further advise as to whether or not this your best option. Do you really need to be taking it on a daily basis or would the "pill in the pocket" be a better option for you?
I am learning to live with AF. When I go to spinning classes or go cycling I wear a heart rate monitor. At one time my HR would rise during excercise but then head off towards escape velocity after a certain point and then stay at a high rate, with fibrillation, for several hours. I am now learning to back off before it hits the reheat button!
A few weeks ago I completed a 65 mile cyclesportive in France which included over 4000ft of climb. I found it a lot harder than I would have done a couple of years ago pre-AF, but that's life!
Don't dispare, it might take some time to get yourself sorted but you can live a long and healthy life with AF. By the way, I am 63 and a zero on the Chad but have been put on a fairly low dose of warfarin anyway.
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