Been in hospital for six days with AF. They have just told me I can go home as HR under 110. But it keeps leaping up to 120-130 which they yesterday said wasn't tolerable, but today is suddenly okay!
I feel terrible, sick, lightheaded, befuddled, breathless.
I'm on digixon, amiadarone, bisoprolol.
Is this normal? They have not spoken to my electrocardiologist at all (he's at Papworth).
I also have a bleeding disorder but they have today said I have to have six weeks of anticoagulents (yesterday it was four) before cardioversion (which will be delayed anyway due to covid19). But to come back if I have bad bleed (which I will, of course. Hence "bleeding disorder").
I feel very lacking in faith as this is a repeat of what they did to me last year. I ended up losing masses of blood ( 1 litre in ,2.5 weeks). Then I collapsed (verapamil reaction) and came back in as emergency... Then they still tried to send me home....
Sorry for long whinge, just feel confused and scared that I'll be in this pickle for months
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Jajarunner
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So sorry to hear your issues and send a big hug. It is very concerning when we feel our treatment isn't correct especially when you still feel poorly too.
Please don't just accept what they say if you feel it is incorrect, challenge it, it's your body , you know how you feel and especially so with your blood disorder. Are you in a and e or cardiac ward. Could you make contact with your Papworth EP via his secretary to ask if you are ok with the proposed treatment, I know this isn't easy but better to do so than go home feeling unsafe. Do you have someone who can help you do this if you feel uncomfortable doing so.
Take care and if you are really concerned seek medical support again once home. best wishes. X
Thank you. Yes, I'm questioning it at every turn but they are deaf to anything but their own ideas.
They won't even talk to Papworth! I'll keep trying.
Thanks for your support
Just a thought, Amiodarone is infamous for affecting the thyroid causing it to become under active which may account for some of your symptoms. I agree with Meadfoot, try contacting your EP to make him aware of what’s going on. Perhaps there is also an Arrhythmia Nurse at Papworth you could contact as well.......
I feel so sorry for you, as many years ago I had exactly the same heart rate while in hospital and like you couldn't believe they were sending me home to be on my own. Trouble was I'd struggle to shower every day while there (sometimes with the help of my daughter, who works at the hospital), or a nurse. I'd also do my hair and put make up on, despite feeling absolutely dreadful.
Once home, I remember finding it difficult to walk from one room to the next. You've certainly got my sympathy, lets hope your cardioversion isn't too far away.
Have they placed you under the care of the AF nurses?
Digoxin made me feel exactly the way you have described. How long have you been taking it?
I do feel for you. I've been in similar situation in the past.
I've also been on same drugs . Digoxin made me feel terrible and I had to stop it . Have you been taking this for long ? Can you mention the possibility of this contributing to your present symptoms to your doctor ?
I was thinking about you earlier today and hoping you were feeling better, sending you big hugs. I was supposed to be seeing Prof Shovlin on 27th but had message to say outpatients will be closed but she will be ringing me instead. I won't get my liver scan but I will get to ask her some questions, including your ones. Wishing you all the best. x
Bless you CT for thinking of me at this time. I'm home now, but still in afib. At least six weeks on anticoagulants (despite bleeding disorder, they would not shift) , not that it matters coz everything will be cancelled....
At least they finally agreed to try to chase up ablation...
That sounds similar to my experiences with my local hospital. What is not good one day becomes fine the next day. It seems to be down to different doctors and their opinions. May I ask which is your local hospital. I too go to Papworth but my local hospital is QE in King’s Lynn.
They were going to do a toe/cardioversion straight away. Now no chance!
They could do it after 4 weeks now six!
They "definitely would not send me home feeling like a zombie", they now have!
I definitely did not need anticoagulents for of bleeding disorder (low Chad score) now it is okay for six weeks!
They wanted the advice of the ENT specialist who did the skin graft, but ignored it all. He said cardiovert immediately after toe while nose still packed to avoid bleeding.
Its shaken my faith in the WS Hospital and NHS to its core. Especially when three doctors saw me in tears and just said, "OK then" and walked out! They call it clinical detachment.....
And none of those comments above are affected at all by the Covid19 problem which is obviously has lead to cancellation of all "routine" cardioversion and ablation. The hospital are hoping Papworth would step in and ablate me but they will not escalate it from "routine" level to expedite that.
I know the hospital can only do so much, but they did this last year and I came back as an emergency, occupied a bed for another 12 days and needed emergency toe/cv which must have cost a whole lot more. Not to mention my loss of "productivity" as I couldn't work or pay tax for nearly three months. And there are loads of us like this.
Winge away. That one of the functions of this forum, somewhere to vent safely. Who do you see at Papworth. I was told just an appointment would be 12 weeks so I saw my EP Dr Grace privately. He said I needed a cardioversion which Kings Lynn hadn’t suggested, but I’ve heard nothing yet. I’ve been stuck in this arrhythmia for 3 months now. It might be worth ringing your doctor at Papworth yourself to get his opinion. I find the local hospital doctors don’t like consulting Papworth, I think it’s loss of face.
Absolutely agree. They dont like to lose face. They wouldn't even discuss me with Papworth. My EPs secretary just said "why didn't they transfer you to us?!"
She also said I should be upgraded from routine to more urgent. I just emailed local hospital to suggest that as delicately as possible.
They hate listening to patients even more than losing face with Papworth! When I tell them i lost a measured 2.2 litres of blood in two months you can tell they think I'm exaggerating. They are all in their little specialist bubble and, has been said on here before, they cannot deal with someone with contrary problems.
Good Luck. To be honest if Papworth have suggested that as you are a complex case you be transferred to them I can’t see how they can refuse. Let us know how you get on.
Emailed that today. Will pester until they give in for a quiet life. Or until I have to go private!! That may be what they want. Stealth Privatisation.
Dear Jajarunner, I’m so sorry to hear you’re receiving inconsistent advice - I know how that feels from past experiences and it certainly doesn’t help matters. I hope you self/convert soon.
I was just actually wondering whether I should be talking to the hospital myself as I’m in AF at the moment (diagnosed 8 years ago and on Bisoprolol, Flecainide and Apixaban). Usually I just wait to self-convert around Day 7, but it’s Day 9 for me now and I’m still flipping between AF and Tachycardia at around 112bpm. Luckily I’m working from home at the moment so managing okay.
I wish you well Jajarunner and send lots of luck, please stay safe everyone 😊
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Discharged
How do I know it's afib ?
How I feel post ablation
Still in Af
Now in NSR but still feel ruff,
