How serious is serious

Hi posted a couple of times on this site and had brilliant advice. I am now on the list for a cryoablation at Leicester with a four month wait so potentially November

None of the drugs supplied bisoporol sotalol and flecanide appear to have any impact and attacks are every 2/3 days lasting 8 to 12 hours During bad attacks I come close to passing out Within the next week or so I will be living on my own and the fact of passing out worries me

Two questions, how poorly do you have to be before you are considered urgent on the NHS and has anyone paid privately for the operation. My last two attacks were Friday at 5.30 am and today at 2.30 am Most attacks feel vagally induced and due to my restrictive diet I have been loosing 2lbs every month for the last 30 months so over 4 stones lost in this period If someone has a magic wand please advise

Kelvyn

23 Replies

oldestnewest
  • Just want to say well done with weight loss. The way you are doing it...slowly...is perfect and shouldn't affect your health in any way except for the better. But why do you call it a restrictive diet? Over 30 months sounds like a lifestyle change and new way of eating.

  • Thanks for reply My problem is finding food to eat that doesn't trigger AF and maintains my weight as I am loosing weight and cannot put any weight on

  • Sorry. I misunderstood and thought that you were trying to lose weight. I don't have triggers so can't help you there. I think you need to make a fuss about how poorly you are. Your GP sounds too complacent

  • Hi Kelvyn, I'd have thought (or at least hoped!) that if you tell them you are passing out or nearly passing out, then they'll do what they can to bring your ablation forward. Clearly passing out can be very dangerous for other people not just yourself.

    My first ablation was done privately in 2005 at the QE in Birmingham UK, under insurance. I understand that back then, had I paid it myself, it would have cost me £10,000. Some have quoted figures around £15,000 now, assuming you're in the UK.I did consider paying myself for my 2nd ablation, but it was only a touch up for minor AF so I just waited for the NHS.....and it was a looong time, twice as long as they quoted.

    My main ablation was extremely successful by the way, so hope you have a good result.

    Koll

  • Thanks for replying I have found your experiences useful in deciding my next course of action

  • Unfortunately you cannot generalise regarding care under the NHS sadly it is very much a postcode lottery.

    If your symptoms are so bad for you it might be worth asking if you could be referred somewhere that might be able to treat you sooner.

    Bit of a concern that you have been given Sotalol as I am pretty certain most EPS no longer use this Beta blocker to treat AF any more. I was given it 26 years ago when I first had AF and it made me feel very bad.

    I have mostly been controlled by Flecainide and Bisoprolol. If you still take these talk to your EP about the dose.

    Unless you are very wealthy I am afraid, as I understand it, the cost of ablation privately is circa £10k to £15k.

    Pete

  • Thanks for replying.Although not wealthy I have some savings and if the benefit exceeds the cost may have to consider going privately

  • It shouldn't have to be like that.

    If you keep nearly passing out you must try and talk to your EP soon your story sounds like you need some help sooner rather than later.

    Pete

  • Kelvynvernon , unless I misunderstood your post, you aren't purposely losing weight but are doing so as a result of your condition? If that's the case I would draw your doctor's attention to this, as you want to be as strong and healthy as possible before your cryoablation. Very good reason, I would have thought, to suggest bringing it forward.

  • Thanks I am trying to do this Three phone calls since Thursday trying to get a second gastro opinion and still waiting

  • make sure you have lots of potassium rich food and possibly a magnesium supplement from GP- I have found this has helped enormously with my vagal AF

  • Thanks I will definitely follow your advice

  • There is no magic wand but I can mostly manage my vagally induced AF by doing the following:-

    I noticed my main Vagal trigger was when I got up immediately after a meal and moved around - always stay still in rest & digest mode for at least 30 mins after eating a meal. Keep meals small and with absolutely NO carbs especially bread which is my worst trigger.

    If for some reason AF takes hold - do valsalva maneuvres - blow through syringe or other device and bear down. Lie on floor and (if on your own) put a scarf under your soles of your feet, prepare by tensing core muscles & then lift feet so your legs are at 90 degrees to body. Stay in that position for about 5 mins. I don't always covert to NSR within in that time but lower my legs and stay in that still and usually it works after 10 mins or so but I still have Atrial Tachycardia so I have to be very careful until HR decreases to under 70.

    Prevention is always better so staying very well hydrated and improving Vagal tone & gut health really helps. There is a little book, downloadable, called Heal my Vagal Nerve which has excellent suggestions for improving Vagal tone.

    Very well done on the weight loss - unfortunately I cannot lose weight at present and am really struggling to lose anything, but I am feeling fitter as I can do more and more.

    Best wishes.

  • Thanks some excellent ideas to consider

  • thanks for this really useful reply

  • PS - I had 2 ablations done privately in London 2013 & 2014. It's not a problem but not cheap and unless you have private medical insurance it is chancy as if anything did go wrong the expenses could escalate at an alarming rate.

    I don't know the cost now but I think when I had mine it was circa £15k for everything. That would be on the top side and I have seen lower costs quoted.

  • Hello Kelvyn, I can relate to many of the concerns you mentioned. My PAF was slowly becoming persistent and living on my own, being self employed, having to pay a mortgage and only being able to work 3 to 5 days out of 7 was a major worry. Not a good base to remaining calm with AF.

    It all boils down in the end to a number of factors. I waited 6 months for my first ablation but that was purely due to a clerical error, it should have been a year and 6 months.

    Your age (less than 65), the increasing severity of the episodes, the response to drugs (lack of), the number of doctors / hospital visits and in the end, just how much you are starting to cost the NHS becomes a factor. That said, from a responsible point of view, you have to consider the number of patients on the waiting lists, the number of 'redo's' and the lack of facilities across the country. I certainly appreciate the treatment I received but you have to also consider that the best results come from early ablation. Tony Blair did not wait a year for his operation, he got his within days of bringing the country down and making a swift exit.

    I think I lost 1.5 stone prior to my ablation and yes, some of that was from my wallet. I would also consider publishing a book 'The Vernon Diet'. Good luck and don't be afraid to ring an Ambulance if it gets bad.

  • Thanks Some very useful points and advice for me to consider

  • I have gradually and unintentionally lost 6lb over the last year due to feeling full for hours after a meal - which triggers my AF. I have had a change of beta blocker which has helped but I now take Bio-Enzyme and HCI & Pepsin which a nutritionist recommended along with a changed diet. Once I'm full, I try to stop eating but at least I no longer have the ongoing feeling of being bloated and I actually feel hungry after a while. I'm trying not to lose more weight by eating snacks of nuts and 'sweet things'😀

  • Thanks for replying Have been eating nuts for a few weeks now When I asked to see a nutritionist I was advised that I was an educated fellow and could sort it out for myself by my gp

  • Unfortunately there are very few nutrionists about, period and nothing I could find on the NHS.

  • I bumped forward two of my ablations by simply ringing the bookings clerk in Cardiology Outpatients and asking to be considered for a cancellation. I felt very ill and felt justified in doing this. The thought of waiting 5-6 months was just unbearable. After all, the last thing tha NHS wants are gaps in their very expensive cath labs..

    it is very close to the summer holidays and, as an ex NHS employee, I can assure you that even quite ill people will cancel because of upcoming holidays. Sounds crazy but it is very true.

  • I didn't want to wait 6 months or so for my ablation so had it done privately three months ago. It cost close to £15k.

You may also like...