AF and breathlessness

Hi I am Sylvia and have been diagnosed with persistent AF, I am 71 years old. This leaves me breathless on exertion . I recently saw a EP from Birmingham who wants to have a cardioversion done before considering an ablation. He ask for me to be put on Amiodarone with a view to having this done. I was unable to tolerate this drug due to the breathlessness it left me with after two days and I stopped it. Does this mean that they can`t treat me, as he did say that I had aa condition what is very difficult to treat and that ablation was such a serious procedure he did not recommend it. I am bewildered by this. I was put on digoxin and blood thinners, but I do not know where to go now. I get severely breathless when I walk or work in the house and so I have almost given up on walking and holidays as the joy has gone out of my life. Has anyone any advice please?

13 Replies

  • Sylvia, the amiodarone gives cardioversion a better chance of working which is why your doctor wanted you on it. Cardioversion is often a precursor to ablation as it shows if you can be put into normal rhythm (NSR). It doesn't men that you could not have ablation but is a useful guide as to how successful ablation might be.

    Read all you can from the fact sheets on AF Association main website so that you can discuss with your EP from a position of knowledge.

  • Hi, I cannot give advice but I can share my experience. I am 71 with pulmonary problems and a fused spine with a load of metal in it, also slightly leaky mitral valve. I was taking medication for PAF until I began to have pauses in my HB so I was referred to an EP who said I should have an ablation because it was unsafe to take the meds unless I had a pacemaker. He said the PAF might soon change to persistent and I would have to take Amiodarone to have a hope of success.

    I had the ablation in December, I found it very stressful and hard to recover from with lots of temporary after effects and finally I had a bad bout of diverticulitis!

    I have not had my follow up to the ablation yet but it seems to have been successful. I still get very breathless though.

    I am sorry if this sounds negative, I'm sure many other people will write posts of encouragement but I thought my honest account would help you decide how you want to proceed. As you can see I was encouraged to have the ablation despite my other health problems so it is possible another EP might disagree with yours, who I have to say sounds very negative but without knowing your full medical history nobody could really argue with him!

  • Hi! Sylvia,

    Yes, Amiodarone is a dirty drug and too strong for some of us. It certainly knocked me about and it was replaced with Diltiazem within days which suited me better.

    The six cardioversions over a long period (7 years) and all the drugs failed to help me and I finally dropped into permanent AF. As Bob say Cardioversion might indicate future success with Catheter Ablation which did not work for me first time but have had a regular sinus rhythm since last mid September. Feel great. Still tired and fatigue easily but a lot more energy in the nearly old bones: nearly 71.

    Your EP sounds a bit negative. There is no reason why you cannot get a second opinion. Knowledge is strength but is no help when you have to consult with someone who has made up their mind. We are all different mind you and that goes for EP's.

    The AF Association might help you there (give them a ring why don't you and have a chat?) with their list of EP's which will also show their success rates with AF. Do not lose heart. There are many ways of skinning a rabbit. You just have to find your way through to get to the right person who suits you.

    I am slowly coming to the conclusion that "we" (royal) are starting at the wrong end of the process and a lot of time and effort could have been saved with an Ablation for me 5 years ago.

    Be positive. Get walking for a start. Do as much as your body allows, then a few paces more each time. Fitness is really important and improves your mental state. Have you a local sports centre close which may run Heart Rehabilitation classes where you will get controlled exercise under supervised care and build confidence. Give them a ring. Get the local Doctor to sign your application form if need be. AF is just as much about physical as a mental state.

    Hoping joy returns, Dave.

  • I have improved my fitness and do walk about 30-40minutes most days. I have a stationary bike but can`t tolerate more than 1-2 minutes. As I have limited mobility it was suggested by the doctors to keep my cardio going when I am unable to do aerobics. I exercise in my kitchen when waiting for cooking and any other time I feel I am wasting time. I also use, with good success, pursed lips breathing it seems to expand my lungs. There is also a website called elder gym which is run by a personal trainer who specialises in exercises for the older persons to keep them healthy. I purchased the set of DVD as I was so impressed but you can down load them free. This website really helped me, so worth a try.

  •  The Pursed lips breathing sounds like a Pranayama practice, it is either Seetkali or Sitkari, I am not sure which.  We are taught to breath only through the nose  until we start the practice of Pranayama. It can be calming, but please remember not to hold your breath.

  • Thank you all for your comments. I found them very helpful. It was unfortunate that when I saw my EP in January the hospital had mislaid my medical history after 1999 so he was only left with the letter from the cardiologist and an ECG done on the day. I was very upset by the time I got home and made a strong complaint to the hospital as it not only wasted my time it was very difficult for the EP to give an accurate diagnosis. I wrote to him in Birmingham too as I had lost confidence after a build up to the appointment. He replied to my letter laying out his thoughts and also that persistent AF was very difficult to treat successfully. Although as far as I am aware the surgery has written to the cardiologist and also the EP re my failure with Amiodarone but nothing has returned to me. At present the chaos in the NHS means that you have to wait 2-3 months for information to go back and forth between consultants. This is so frustrating as I am awaiting surgery which they won`t do until this is sorted and I can see it stretching out for years. Maybe I should just give up and enjoy what I can, this is more like the Chinese water torture.!

  • Give up? Why not try putting your foot instead on just one rung of the ladder to start with. Perhaps discuss the cardioversion further and how you can move towards it. If you can afford a private appointment (probably not more than £250) this would cut out the waiting.

    Barry's advice is well worth noting too.

  • Just an update. The reason I have not heard anything is because the surgery sent the letter to the wrong department. As far I can tell they have now sent it to Birmingham, and my GP is putting me forward for surgery as my af and BP is well under control, so fingers crossed

  • Hi Sylva,

    Sorry to hear about your problems with the NHS. Try not to get too down (I know it must be hard for you). Keep chasing this matter up with your surgery and make a call

    to the AFA, I have always received good advice and kindness from their staff.

    Best Wishes


  • I would ask for a second opinion and as rellim said if you can scrape together the £200 ish go for this privately and you will be seen immediately.

    My EP gave me the choice - drugs or ablation. I opted for ablation, was on bisoprolol for the 3 months whilst I waited and then had the ablation. I now walk most days for at least 45 minutes and do 20 or 30 minutes dancing some days. Breathlessness for this type of moderate exercise is gone and feel much better. I am sure you should noit give up but just tackle from another angle.

    Good luck 🍀

  • Hi , I am 75 - started with AF in late 60s - Had cardioversion - then was recommended ablation - they put me on Amiodarone - after about 6 week , finished up in hospital Critical intensive care for over 2 month - Side effect I P F - Like you the ablation was cancelled due to the risk - This condition needs ( hope you don't have it ) attention immediately - the you get treatment the better , Good Luck , John

  • I have been checked out and my lugs are clear but I don`t think that would have been the case if I had continued on Amiodarone. I am not surprised at my reaction as I am sensitive to most drugs, but do they listen to you? Not very often.

  • This is a PS to my earlier post. I wanted you to know that since I posted that I have had a checkup and I am very pleased with the result of my ablation. When I had the diverticulitis my lungs were scanned and found to be quite scarred, I also had a small pneumothorax so not surprising recovery took a while but I am feeling great now, out taming the garden!

    Best wishes for the future and some positive news!

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