How long can Mum expect to wait? And tips for living while waiting

Posted , 10 users are following.

Hi

I've looked on these boards and can see you are all very knowledgable and helpful.  I'm hoping someone can advise me about my mum.

She is 68 and not in the best of health.  She has had 2 strokes, which we have since found out were due to undiagnosed AF.  She also has Type II Diabetes, high BP etc.

She has had one failed cardioversion and is now on amiodorone, apixaban plus all the usual, while waiting for her second cardioversion.  The first was performed in February, but she went back into AF within a month.  How long do people normally wait for cardioversions in the UK?

In the last 3 weeks she has gone downhill rapidly and now cannot walk more than a few steps without becoming breathless and having to have a rest.  She went to A&E this week and they discharged her, saying they would write to the cardiologist to hurry things along.

I am writing here because I'm worried about her mental health.  She doesn't want to live like this any more.  She can't leave the house and is struggling with everyday tasks like preparing a meal.  The GP isn't being much help.  We just want to know how long this is likely to go on and what we can do in the meantime.  Mum has got it into her head that she wants a pace maker fitted, which may or may not be suitable, but she hasn't actually spoken to a cardiologist in 2 years as she's just been in endless waiting lists for cardioversions.

Is there light at the end of the tunnel?  How can we find out where in the system she is? And is all this waiting around dangerous?

Many thanks for any help of advice you can offer

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11 Replies

  • Posted

    The waiting times vary depending on the area you are in. I waited 15 weeks the first time and 16 week the next time.

    The second time I went to A&E the day I went to AF and saw the cardiologist  two days later while still eligible to have it done without being medicated first.    

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  • Posted

    Geez I wish I could help you but I live here in Canada. Our protocol is much different here for cardioversions then in the U. K. Maybe your mom breathlessness is from her medication. Some of these anti arrhythmia pills can cause this as a side effect. You're right about the pacemaker. She might not be a good candidate for one yet. If you go back to the local emergency room can you request to be referred to a cardiologist? Maybe insist on it. And is it dangerous? Well you would like to think that if it was your mom would have been cardioverted much sooner and also seen a cardiologist by now. But honestly I know some people live for many years in A Fib as long as you are on blood thinners your risk of stoke is less however not being a doctor I can't truly answer that only a professional can.

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  • Posted

    I am not a doctor, so my advice is unreliable. I have lived with afib for over twenty years and get along pretty well. Amiodarone is much relied upon but it occasionally has beastly side effects which include pulmonary toxicity, a terribly serious condition which includes as a symptom progressive shortness of breath. She may be in an emergency type condition. I feel like a real scuz for telling you this because I know you are deeply concerned. I may well be totally nuts, but see a doc.
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  • Posted

    In my opinion she needs to see a cardiologist urgently. I had the symptoms of breathlessness, couldn't walk more than a few yards, everything was difficult, feet and legs swelling etc. I was treated with urgency by my cardiologist and had my first ablation in 2014 which unfortunately failed immediately, but as least I was on their radar. I've had 3 cardio versions and my second ablation in March of this year, which, so far, is going well.

    Since your mother has already had two strokes, I would insist that she is seen by a cardiologist as soon as possible.

    Your mum and I are the same age, so I can empathise completely.

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  • Posted

    Hi Sophia I'm so sorry to hear about your Mum,I know how much they mean to us,I think that you should phone  the Hosptial and tell them the anxiety she is having together with speaking to her GP,our NHS services are under such strain that unless we shout,some times we are not heard.Like your Mum I'm still waiting for an appointment  to see what they are going to do next,yes a pacemaker could be the answer. 

    Kind regards

    Pauline

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  • Posted

    Hi Sophia,

    Like the others I agree you need to make a fuss its people like you and your mum that need to be seen urgently that sit back and wait their turn as they don't want to rock the boat, well its time you did, If you know the name of the cardiologist she last saw ring the hospital and ask to speak to his secretary and tell her what's happening and you don't think it can wait, surely its better fixed now than waiting until its an emergency.

    Let us know how you get on.

    L.

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  • Posted

    Hi Sophia, and I do wish you and your Mum all the best. I can imagine how worried you must be. I am about your Mum's age and have had AF for a year or so, treated so far with drugs, and perfectly manageable really. I do sometimes get out of breath walking uphill, which I put down to the beta blockers (Sotalol).

    But like others, I do feel your Mum needs to see a Cardiologist ASAP. I live in Scotland, and get to see a Cardiologist (or a qualified cardio Sister) every six months, regardless of other treatments. If the hospital is being obstructive, then your GP really ought to assist. Or perhaps your MP!

    One other possibility - see a Cardiologist privately. I did so when my AF first started, in an attempt to speed up things. As it happens it didn't, but your Mum's case sounds different. It cost me around £100, which I felt was well worth it for the advice and reassurance given.

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  • Posted

    Hi Sophia,

    ?I am sure you know what AF is .............. but in case you don't go to the Atrial Fibrillation Association Website - AFA. Spend a bit of time searching it then look and see if you can find an EP (Electrophysiologist) near you, an EP is a Cardiac Consultant who specialises in the electrical circuitry of the heart. Then ask your GP for a referral to the EP of your choice. AF is (to put it simply) an electrical malfunction of the hearts circuitry but it can and does cause other cardiac issues.

    Good luck.

    John

     

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  • Posted

    Thank you all. Mum was referred for another cardioversion by A&E and was supposed to have an pre assessment today. However, she wasn't able to make it into the patient transport car due to breathlessness so couldn't make the appointment. I honestly don't know what to do. She was too exhausted for me to phone an ambulance this evening, so I suppose I will try to take her back to A&E tomorrow. She phoned the clinic to explain the problem and why she couldn't get there and they said they'd phone back, but they didn't

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    • Posted

      Hi there I don't mean to be rude what what does her being too tired have to do with you calling an ambulance? Sounds like she needs one and should go to the closest hospital asap. Hope you get this all sorted out soon. Take care

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    • Posted

      I can't manage her when she's tired and neither will paramedics. She will refuse to go and won't talk to me for several days. It's a delicate balancing act. Since the strokes, she's not as reasonable as she used to be...

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