Still in Af: Hi folks thank you for help and... - AF Association

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Still in Af

Hi folks thank you for help and support last week. Unfortunately I spent last week in and out of A & E and then the emergency day care unit.

Unfortunately I am still in afib, all they would concentrate on was my heart rate. They said if they gave me any other drugs I would have to be kept in and they wouldn’t do that, so I was sent home with more bisopolol now on 7.5 and rivoroxiban.

Had a bit of a rough time last week as no one really wanted to take responsibility for me. Hospital discharged me with pulse of 130, gp sent me back to a&e then left a&e again at 118.

Fortunately it is now between 47 and 95.

I am now in a situation of waiting for cardiology department which has been put as routine appointment so will be 8 weeks minimum.

I feel quite depressed and lost really, as hospital have left me to be monitored by gp but It will be almost an impossible task to get an appointment let alone a regular one.

Sorry for the rant but I know you all will understand. Many thanks Deb

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Sorry to here you are having a rough time,

What i would do if you can afford it is see a EP private at Spire you may be get to see one in a week, it will cost you about £200, But it would be worth it,

Good luck

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Thank you higgy, I did have a quick look today.

I can afford that but I wouldn’t be able to afford to go private after initial consultation.

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You could revert to NHS, quite often the consultants are NHS as well. Your GP will have to do as the consultant says. I went private and paid because I knew I’d not see a consultant for long time also.

By the way, I was taken to a&e and in ICU for a day, my heart beat was 150! They couldn’t seem to find out why or get it down. They had also given me Bisoprolol at 7.5 mg and Rivoroxiban, took my BP too low and instructions in the box said STOP taking it, I had to go back to Dr at the hospital😳 The cardio couldn’t believe the dose and the Rivoroxiban and changed me to 2.5mg Bisoprolol and Flecainaide.

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So sorry Lacey that you have had such a hard time, I am as hoping they would put me on flecainaide but no one wanted to take responsibility for it.

I really hope they sort you soon.

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Your firstappointnent is private.,.but after that NHs...i did this..best 200 i spent,,,go for it!

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You wouldn’t have to. It’s worth the money purely for the conversation - go prepared with questions & your concerns - there is a leaflet on the AFA site of questions to ask which helps.

It’s peace of mind rather than being Treatmented but that is worth so much! Best wishes.

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I totally agree with you after talking to this new go this morning, his reassurance was great

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Hope you are feeling a bit better . I had a private consultation this week it was very helpful and he did do a prescription change and plans to see me on the NHS soon so it is worth it for peace of mind as I was able to cover a lot with him and felt very reassured.

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Thank you for your replies. My main concern is that I can’t see any cardiologists that are at the private hospital at my local hospitals. I need to do a bit more investigation into who works where.

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Look for an EP rather than cardiologist and be prepared to travel out of your area - it’s really worth it.

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Will do, found one in next county to us

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So sorry to hear what a difficult time you are having - no wonder you are feeling like you do. Although my af is not as bad as yours I felt the same & in order for me to get peace of mind after more than 2 years I found a cardiologist who did private consultations as well as nhs in a hosp near me. Appointments were available within days & it was worth the cost & the appointment was quite long, I went with a4 sheet of questions!! & was open about how life changing (at the time) it felt. I don't know whether this is an option? But, maybe worth thinking about & looking into? I googled the private hosp in my area & also asked gp who he would go to. Do check with the hospital/EP secretary about costs & be aware things like ecg/echo etc are usually extra. He put me on his nhs list and, although there was about 6 week wait in the meanwhile he advised my gp re med's etc.

Last year he arranged me to have a heart reveal device fitted (you can google it) as my symptoms were not getting picked up on the holter devices so now 24x7 the EP can see how my heart is performing. Take care & do let us know how you are doing. No doubt the meds are already helping - I'm also on Rivaroxaban

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Hi sorry to hear that things have not been good hope you get it sorted quickly

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Ok I am going to queue this morning to try and get an appointment at gp. Will discuss my options, if they are approachable, I found the last one I saw very stand offish.

Looks like I am going to have to drive this.

So far I have been surrounded by a lot of negativity, the dr I saw at hospital said cardioversion doesn’t always work neither does ablation. I know this but at the moment I need something positive to focus on.

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You do need to drive it, well done!

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From what I was told by my ep ablation works 65 to 70% of the time for afib.

That's very good odds. I suspect if you have no other Co morbitities it will be higher but I am not medically qualified to day that. For Flutter it 90 to 95% .

Don't let anyone talk you out of treatment and Into puttiing up with What is easier for them.

I was going on 58 when I had an afib cryo ablation and a month after an rf flutter ablation. I have not had either since , 19 months and have not been on any meds for 15 months.

Good luck

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Thank you for your response, I feel I have a bit more focus on getting this sorted now rather than focusing on my heart rate.

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On 7th of Aug I went to see the nurse for a review on my type 2 diabetes,must add diet controlled... she picked up on my HR and I had to see a Dr who sent me straight to hospital.I was on Nebivolol 5 mg. they gave me 2.5 of bisoprolol. Later HR lowered to low 100 so sent home.My HR as soon as I got. Home was 130 .Like that for a week saw GP who put me back onto bisoprolol 5mgs.HR still stayed120s. Go again on Monday Bisoprolol upped to 7.5 mgs plus referall back to EP Mr Osman who I see on De 6th.Hr still all over the place despite 3 days on 7.5 mgs of bisoprolol which I fought to get off for my Nebivolol. I have gone full circle back to where I started. My anxiety levels are through the roof.. I so commiserate with you Deb,at least your HR has lowered.Best wishes.

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Oh Bertie your tale sounds like my sorry story.

The irony is that I was going to ask to cut my bisopolol as up until last week my pulse kept going into mid 40s.

I have just found an EP at the next major town to me. So I am going to ask to be referred to him as I have just checked him out and his specialty is afib and he does ablation at St Thomas.

I hope you get this sorted as I feel so emotional at the moment and so alone.

Fingers crossed they sort you out as soon as possible.

Deb

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Proff Osman is really good and very approachable.I initially saw him as a private patient for speed,as i was facing a long wait .He then put me on his nhs list at UHCW. Best wishes xx

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Thank you Wilson I am going to do some investigations into my area

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Oh Deb I do feel for you. Sometimes you have to use the system to your advantage. Be a "nuisance"! Research a private GP if you can afford it for the initial consultation which so many of us have done on this forum. Follow up tests and consultations/treatments can then be done on the NHS. Sometimes we need peace of mind and whilst our NHS is amazing, sometimes it's too slow. Good luck to you.

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Thank you Becks, I hear what you are saying and I understand that I need to drive this and take some control.

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Deb I feel the same so alone.. Saw my GP on Monday ,had referall letter for EP on Wednesday,so booke d straight away . It's a long wait until December...I suppose that I could book a private appointment . I have spent so much money on various procedures that not enough money left for the most important part of my body.Feeling like I have lost control of my life. Woe is me...lol.

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Bertie I could have written your post. Currently queuing to get an appointment trying to juggle this and work is really difficult.

I feel as if my life is on hold, don’t feel as if I can organise a holiday because I can’t even walk any distance because I get out of breath so easily and I am scared of pushing heart rate up.

Perhaps we could support each other through this and maybe we won’t feel so alone and might learn from one another.

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So sorry to read this. Will you give us updates?

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Yes of course.

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Dont feel alone! We are all here for each other. If you can ,see Prof Osman privately,it was £175 last year,well worth it for me.Had half an hour with him,and got on his nhs list straight away. Still seeing him,hes excellent.xxxx

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Thank you Wilson will look into it

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Thankyou for your response Wilson...I will look into seeing Mr Osman after the bank holiday..feel really guilty because I had a date for an Ablation with Mr Osman and decided not to go ahead. Now I am out of control heart everywhere.😩

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Don’t feel guilty Bertie

Our circumstances change. I am sure he will understand.

It is all about making the right choice available at the time. If you were stable at the time why would you go for an ablation. Quite frankly everything scares the life out of me.

Get back in touch, you won’t be the first or last x

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Hi Deb - I totally empathise with you and all the upheaval that AF brings. Don't ever wait to see your GP - if you are in fast AF, then call the ambulance. I had to do it on dozens of occasions. In fact, the more number of 999 calls and A&E admissions you have, the faster you climb the list, so I'm told! Also, try to get a private appointment. I did this and went to the Spire in Bristol. The lovely cardiologist I saw explained a lot to me and then wrote a letter to my usual Cardio at the NHS BRI in Bristol, and put me on his list again.

It is well worth the cost for the initial appointment and treatment can then be carried out on NHS. Just a hint - take with you all the paperwork you have, test results, letters etc. because the private cardio will not have your NHS notes to hand. Another thing I did was always ask for a copy of any ECG's , this is very helpful when you have consultant appointments. Sending you best wishes.

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Oh thank you for tips, hadn’t thought of that. I do keep my own records, so will ask a copy of any ecg I have.

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Best wishes Deb,let us know how you get on xx

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Just read your whole post Debs, and sympathise massively 😢

Sounds like you’ve got a really good plan of action in mind - please do let us know how you get on. Love and hugs xx

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Thank you Jane I hope things work out well. I feel a lot more positive tonight than I did this morning.

Will update when I have some newsj

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Deb, I am really sorry you’re having such a horrid time. I can only reiterate the comments of others and suggest you to a private consultation with a cardiologist. They could certainly change your medication and write to your GP, if necessary you could then revert to NHS. I went through this process because I was given a nhs appointment six months hence. Almost all consultants who work privately also have NHS roles so they know the system. Very best wishes and hope you get some respite soon.

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Thank you gain. I intend to take control now and find someone who I feel I can work with

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Deb I know exactly how you feel. I had an ablation 6 weeks ago and 3 days post procedure my AF returned with a vengeance. I visited my local A&E and after hours of waiting I was given Bisoprolol 2.5mgs and admitted to the Medical Assessment Unit for monitoring. Once I was in sinus rhythm I was discharged home. After another 2 days of persistent AF I returned to A&E and same routine followed. Home again I rang my consultants secretary to speak with him but no success. The AF Nurse was off sick. Eventually went to see GP who didn’t know why I had gone to see him as nothing he could do. I was continuing to take Bisoprolol 2.5mgs twice a day and GP also said to increase it on an as and when basis but not to exceed 10mgs per day. Unfortunately pulse dropped to mid 30’s and I stopped taking the beta blocker twice a day & resumed daily dose. Rang consultants secretary again but on holiday. The AF continued and eventually I made a decision to pay for a private consultation with my consultant on his return from leave. On the 6th week, post procedure, I saw the consultant who admitted me to CCU for investigations and I have now been in hospital 9 days. After a number of investigations I was commenced on intravenous antibiotics as I had a chest infection and high temperature. My consultant and team were very good but I had to take control of the situation to prevent being bounced around the system. My suggestion would be to keep a chronology of your AF events, maintain a regular daily check on your blood pressure and pulse so that you have written evidence of your episodes. Time when your AF commences and finishes. I also have an Apple Watch that records my pulse and undertakes ECG readings and these I print out and cross reference in my chronology. I am hopefully being discharged this weekend with appropriate management of my AF episodes. The plan is Flecainide either twice daily or a pill in the pocket together with Bisoprolol and Dabigatran. So sorry this is a lengthy reply but the bottom line is that you have to take control in whatever way suits you but if you are not happy with a routine appointment then badger your GP to take positive action on your behalf or seek a private consultation to at least get a cardiologists opinion. Don’t despair I know how you feel but there is light at the end of the tunnel.

Best wishes

Milliecat

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Goodness me you too have had a torrid time! Very worrying that we have to literally bulldoze our way through issues like those you describe. Glad you are on the mend.,xx

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Oh Millie bless you, thank you for taking the time to answer especially when you are going through what you are.

I have realised that I need to drive and take control of this situation. I was told to take 7.5 a day of Bisoprolol but as I noticed it was dropping lower yesterday, I decided only to take 5. Dr agreed that I had done the right thing

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Oh milliecat, what a rotten time you’ve been having :( Sounds like you’ve dealt with it all brilliantly but what a stress and worry :( Really hope you’re home and feeling well soon x

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Hi Deb,

Sounds like you are not having the best of times right now!!

Like most people who have been through this journey, having Afib, especially earlier on is most certainly a very traumatic experience.

I guess it is easy for "others" to offer advise etc, but that's what this site is good at, like v like, but we are all different in our attempts to settle things down, but while this beast continues to haunt us, at some stage we need to sit down and just say..." its time for me to start helping myself ".

Now that's not to say your shouldn't get (and listen) to medical advise if you feel its necessary, or if it makes you feel better, and if you need to get medical tests done, then of course you should do so.

But also try to understand that not many people die from having Afib itself, despite every bone in your body telling you this might happen any minute!!

I cant begin to tell you how many times I thought I wouldn't make it through the night...LOL!!

It is VERY frightening having your heart beat wildly, with (seemingly) nothing you can do about it!! Sure there are drugs that can help, especially with rate control, but sometimes they have nasty side effects, and of course further down the track there are medical procedure that may help.

But, until you learn to accept that possibly you are going to have to live with this, quite possibly for the rest of your life, sooner or later you just need to learn how to take back control, and just learn to try and relax, which is much easier said than done!!

The best advise I can give you, based on my experiences, is get some expert advise on how to master deep breathing and relaxation techniques. I know it may sound odd, and perhaps not what you want to hear,but having the anxiety (and depression) associated with Afib only make the symptoms seem worse, however training your body to accept what is happening, and giving it a chance to understand will, in itself help calm you down, along with your heart rate.

Will take time, but please try..... believe me, as someone who has had this beast for more years than I like to count and who now lives with permanent Afib, it works, takes time,but at least try,it really makes your QOL so much better

Acceptance is half the battle!!

Happy to talk to you at any time if it helps.

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Thank you concur, I have just returned from seeing a lovely gp, who echoed a lot of your points. I actually came out of there feeling as if a weight had been lifted as he spent 40 mins checking me over and confirming that at the moment my anxiety is feeding the afib.

He did say he could give me something for the anxiety but he didn’t want me to get hooked and I would be better off not feeding my anxiety by checking my heart rate too often.

He has just rung me to check I am ok with what we discussed.

Feel a bit more at peace

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What good news. Sometimes a GP that listens is all you need to put your mind at rest and lessen your anxiety. Keep well. X

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You need a cardioversion ASAP!!! Ask your GP to help organize it

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Hi Chico unfortunately I have not been on anticoagulants for a year so I cannot be cardioverted till I have been on them for a set time

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