Hello everyone, just want to let you all know how my recent follow ups have gone after my ablation by Doctor Sabine Ernst at the Royal Brompton Hospital London.
I had on the 20 April three appointments at the RBH. Endurance test, Echo and Holter monitor for 48 hrs. The Endurance test was a bit daunting as i thought i would not be up to it because i have been suffering with sciatica pain down my left leg so, instead of running on the treadmill i was put on the cycle with a breathing mask that measures your lungs and heart rate strapped onto your face and with a strap that goes around your head so it is held on very tightly, also a thick belt was strapped around my waist with wires attached to measure my heart function I did not know whether to lough or cry as i felt and looked like a poor Darth Vader from star wars. I was helped onto the cycle, gulped with fear and off i went but, then i suddenly started to enjoy the exercise and it was the three nurses who were monitoring me who had to ask me to stop in the end as i felt so good i could have gone on and on. I had however done ten minuets of hard slog and had not even broken out into a sweat my heart rate and blood pressure were good and no chest pain or palpitations but the most amazing thing that happened was that the trapped nerve in my lower back that had been causing the sciatica must have been released by the cycling exercise so double whammy and i have not had any pain since. My echo also was good and i am still tick tocking away in sinus rhythm with a pulse of between 70-78. What more could i ask for.
Take care everyone and remember positive thoughts can dominate the AF never let AF dominate you. We can win this war.
I consider myself very fortunate and have many plans to travel and have fun and make up for lost time even more so now that the grumpy sciatica has disappeared also, out looking for an exercise bike to make sure that i keep that at bay.
Take care
Barbara
That's really good news Barbara....hope everything continues well for you.
Sandra
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Than you Sandra. I am over the moon with joy but, will never forget what that monster did to me and if ever i am unfortunate enough that it returns i will hunt it down with the same ferocity as i did this time and will never let it control me again.
There is a lot of hope out there for AF and more, Atrial Fibrillation is now being taken very seriously because now more is known about the affects of AF and so the research is beginning to happen in abundance.
I am sure it will not be too long before they have a reason why AF occurs and once that happens a possible cure will follow or at least a better surgical treatment that does not see ablations fail where people have to return again and again for more ablations. The ablation i had called the ganglion plexus ablation coupled with the normal ablation of the pulmonary veins is being trialled to see if this type of ablation can work better at preventing symptoms returning. So far there have only been three on the trial who had to return for a second ablation those are good stats with the trial continuing for another year.
I think they will find the reason for it my husband is convinced it has something to do with the electrolyty in the cells of the heart. I am due to join a research programme with a hospital in Boston who are looking into the hereditary side of AF as my mum and grandmother had it. I have heard of Sabine Ernst and the excellent work she is doing.
Hello souljacs4. How right you are there is I believe an hereditary cause of AF . The Heart Foundation are funding research into a faulty gene called PITX2 which is found in abundance in the left atrium and develops in the embryonic stage, it is thought that this gene can predispose you to AF if and so the research is hotting up into the cause of AF and about time.
As for Dr Sabine Ernst she is my hero and i consider myself very lucky to be looked after by her and in one of the most amazing cardiology Hospitals the Royal Brompton
I have pasted onto this post about the PITX2 gene for you to read from the British Heart foundation. It makes very interesting reading.
Good luck with the research programme. I will be thinking of you
Barbara,
Consultant cardiologist Professor Paulus Kirchhof from the University of Birmingham has been awarded a Senior Clinical Research Fellowship to establish a world-leading research programme in Birmingham into atrial fibrillation (AF), the most common heart rhythm disturbance.
In people with AF the regular electrical impulses in the top chambers of their heart are disrupted. This greatly increases their risk of having a stroke, and developing heart failure. We know that alterations to DNA near a gene called PITX2, which is required for development of many structures in the embryo, are linked with early development of AF.
Professor Kirchhof has found that usually the left atrium (but not other parts of the heart) has high levels of PITX2. He will now study why this is important, and whether alterations in the PITX2 gene can lead to AF.
This research will further our knowledge of how AF develops and may reveal new ways to prevent, diagnose or treat it.
I can see now why you are so positive. you are looking to the future and the research into AF. thank you so much for the information on Professor Kirchhof very interesting. I didn't know anything about this gene. It is so good to know that all theses amazing people are trying to find an answer to this dam thing. and I believe that once they have found the cause they will they find the cure
HI Barbara have just checked my reply to you was sent about 5.15 this morning I typed a completely wrong word meant ablation op!!!!! Think I will go back to bed? !!
Thank you jeanjeannie50. So far so good, the monster is back in the bottle for now and i hope it will stay there for the rest of my days.
I read your post recently and i am sorry that you were told that there was nothing that could be done for you anymore. I was told that once when i went for an ablation that did not happen because they could not control the AF and had to shock my heart four times, because of that the head of Cardiology EP at Kings collage Hospital refused to try again for me, telling me he would never offer me an ablation because he did not think that it would work for me advising me to stay on meds for the rest of my life. My mantra has always been throughout my life is never say never. I am sure there is something and someone out there who may just have an answer to your case it is just a question of going on the hunt for it, do not give up things are getting better and better in the research being carried out for AF. I always felt that a specialist hospital is needed for a specialist condition which i believe AF is and that is how i found the Royal Brompton Hospital and Dr Sabine Ernst and i badgered and badgered my GP until i got a referral and here i am with my life back again.
Please forgive me if I sound as if i am lecturing but i have been where you are and everyone else who suffers from this monster of a condition and it aint no walk in the park when it starts to play up.
I've just noticed your reply Barbara. Don't worry about lecturing me as right now I need any advice that gives me hope and yours does. If you sail off into the sunset with your good health now, please don't forget to drop me an occasional message to let me know how you are and if you stay well I will be badgering my GP to see Sabine Ernst.
At the moment someone had given me some natural advice and within two days my heart has returned to sinus rhythm. It may be just a coincidence, but I'm hopeful!
Enjoy your new found normal heart rate and long may it continue.
WOW that is good news to my ears that you are back in sinus rhythm what a relieve that must be as i know what that can be like and the panic it can cause when your heart is all over the place for long periods.
As i said Jean in my post to you a specialist hospital for a specialist condition I really do believe that because, I am sure there is more help out there for you. Dr Sabine Ernst is one of those rare healers she is positive, clever and dedicated she hates to fail and so rarely does. She is certainly one Cardiologist EP who is worth her salt an old fashion saying that my Granny often used about someone who she felt was special and Dr Ernst is in my eyes and many others very special. Go for it.
Keep smiling and i will keep in touch
Barbara
After reading that Barbara, even more Well Done to you! All goes to show what a second opinion can do as well.
Hello BobD I have read so many of your replies to those living in fear of this mongrel condition since i first joined this forum and it is down to you and this forum of wonderful brave people who suffer day in day out with AF that gave me the incentive to fight for my life. At the time i so needed help and advice and here is where i came and received it from all those who had and were going through what i was experiencing at the time. I will never forget this forum for its generosity to its fellow man with people like you and all on this forum this is a world worth living in and i can never say enough thank yous to you all..
Hello meadfoot, thank you for your reply but how right you are what a long slog and yes it has been worth it. One never knows what one can do until you are as desperate as i was and so I was in the end able to pull the bunny out of the hat so to speak, and i am a better person for it more in tune with reality than i ever was and grateful for every day that i wake up in glorious sinus rhythm.
Hello CDreamer, I am looking for a good exercise bike at this very moment, my aim is ten minuets a day to start with and then on wards, obviously exercise was what i needed to loosen me up so to speak. When i had the AF it was all i could do to move out of the chair sometimes , although i did in the beginning used to commute from Eastbourne where i live up to London to work, catching the train at 6.20am every morning and often in AF but always somehow or maybe the motion of the train i would be back in sinus rhythm by the time i got to work.
Hello Angela, thank you for your post, I must say those mornings on that train that roared and bumped along all the way to London I often was so tired to even care about the afib going crazy in my chest and would sleep most of the way out of sheer exhaustion of being kept awake most of the night before with the afib. looking back now I often wonder how i managed to make that journey day in day out.
I will be honest on my last day at work and my retirement i remember the train pulling in at Eastbound Station and as i alighted from the carriage I could have kissed the floor as i walked out of the station knowing i would not have to do that journey anymore with the unwanted company of afib.
Thank you Brenda, Lets hope that some of this research that is on the go sheds some light on the real reason this monster is able to wreck such havoc upon us, it is a war but, i am sure one that will be won in the near future.
Keep Smiling there is a lot to look forward to.
Barbara
Great news Barbara....
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Thanks juggsy75
As I said in an earlier post on here the monster is back in the bottle and i hope that it stays there for the rest of my days but, for now its party time.
Hello checkmypulse, Thank for your post which i have just seen. I don't know about you but i believe strongly in mind over matter and i am so driven that if i am going to live then i am going to have a life worth living and i would have gone anywhere and done anything to try and give myself that chance but then i found Dr Sabine Ernst who gave me that chance and i grabbed it with both hands although it was a trial i did not care what risk i had to take i wanted to see if this monster could be silenced and Dr Ernst has slayed my dragon for me.
I wish the same good fortune for everyone suffering this diabolical affliction but i know for some it is not that easy but hopefully with all the research beginning to happen life will become easier for all afib sufferers and the sooner the better.
There are others on this forum who have been treated by Dr E and it seems she is held in high regard. I admire your fortitude in seeking out the best and seeing it through. I also did similar (but locally) after my 'home' PTC just said go away and take beta blockers and with a supportive GP and after finding this forum saw an EP of my choice. So far it's been worth it. I wish you good health.
I admire your positive thinking. I will be going to see professor Shilling at Barthes hospital to discuss the Abilation procedure. What type of question should I ask since you have been through the Abilation . TA
Hello Parisa1, well i think just letting professor shilling see that you to are positive person yourself and that you have trust in him . I did a lot of research on Dr Sabine Ernst who did my ablation. I read all of her papers that i could find on the internet about her work and what it entailed. The trial that she was heading that i went on i knew about before meeting her after reading all her research work about it.
in fact i was well acquainted with her and her work by the time that i got to see her. I then had so much confidence in her that i did not need to ask her anything although i could have done at any time but she was quiet impressed that i knew of her work and had read most of her published papers especially on the type of ablation that she was trialling at the time and she did spend time going through the procedure with me it was not for the faint hearted but if you want something that badly you just go for it and i was more then happy to put myself in her hands.
What you could asked professor shilling is how successful the ablation is likely to be and what to expect afterwards, what type of medication are you likely to be given to support your heart whilst it heals but, then Professor Shilling is known as second to none he is a very highly respected cardiologist EP and I believe very cordial so i do not envisage you having any problems in putting questions to him that you feel are relevant to your case .
Good Luck with your ablation, remember you are having this done by one of the best in the business.
Hi flipflop 666 what a wonderful read your comments have been, have just come out from hospital having been admitted 3 times this month with persistant af, we all know how that feels. Months ago my GP wrote to a cardiac Dr in my local hosp - Northampton General referring me for ablation procedure!!!! Waiting list is 6 months to see Dr and another 6 months before an op!!!!! As the Dr on duty last week looked up my long and varied list of visits ! (and stays) for af he seemed to really want t help!!!! I taught this was a good time to stand up and be counted so jumped in with both feet and told him of my af history. As a result Monday of this week the AF Dr was visiting NgH she came to see my and in only 7 min's I was on her list of ops she is bringing op forward and will be carrying out an AF ablation op in June!!!!!!!!I I have to go to a hospital in Oxford but I would try and get to Scotland if I had to. As you can imagine I am delighted and after 20 years of ongoing af I'm sure this op will help. Any helpful and successful op experiences by fellow af patients out there would be gratefully received by me. Best wishes to you and all of of you who have contributed on this helpline.
Hello G ILLYFLOWER 13, Please accept my apologies for replying to your post so late, but have been to London today and have just returned.
I am sorry to hear of your several stays in hospital because of persistent AF. What an absolute monster this is. I know very well how debilitating this monster can be and for some of us it really does act up big time. I will never forget the attacks of AF that i had to deal with . but, it is fantastic that you were so proactive in pushing yourself forward and now not to long to go before you take that step in knocking that monster for six. I am sure you will not regret it one bit Just make sure after the ablation that you do not over do it give your heart time to heal give yourself time to heal because AF batters us and shakes us around like rag dolls until it almost knocks us senseless, as i have said before it is a war but one we can win one we must win and with the research going on out there now there is more hope than ever. I wish you the very best of luck with your ablation in June which is almost round the corner. I say go for it and make yourself believe that this is the one that is going to work and free you and give you your life back. I will be thinking of you and look forward to updates when you are ready.
Thank you so much for your helpful and lovely email Barbara. Feel so much better after reading it. Having personal problems with 2 wonderful lovely menopausal daughters feel nothing I say or do is right!!!! So for my part having a hopefully successful ablation will enable me to cope with all the tension and verbal upsets which seem to be ongoing!!!!
Can I advise you just a little without sounding like I am lecturing you. When you have your ablation you will need to become a little selfish in as much as you will need to do your part after the ablation to help along the healing process , you will need to meet your consultant EP half way he or she will do all the necessary work to stop the rogue pulses from causing AF but you need to really care for yourself after the ablation and that means cutting out as much stress as you possibly can, resting keeping hydrated and eating properly is a must . This is important to really take care of yourself and let the healing process take place without any interference and stress can be one of the main precursors for AF. If your ablation is to be successful after the EP does there part you will need to be as stress free as is possible. I am sure your family will understand how important this is to your well being.
Give yourself some me time and enjoy it remember there is lots to look forward to once you get your life back.
Hi flipflop sounds like very good and sound advice as it has been a very stressful time with my family just recently!!!!! What wuth my regular visits to A/E and my very recent stay (came out monday of this week) the stresses of being in fast af all the time he thought of (although daunting) actually having the op has made me feel less stressed!!!!! Hope it stays that way cos it is quite a gew miles from Northampton to Oxford and I will have to arrange lifts to/from hospital so will have to pay the Voluntary Car Service to help with journeys. Both daughters work full time so will be unable to assist, plus we have our 1st new baby arriving next week so I will be a Great/Great Nan!!!! Lots of lovely things about to happen so must not get too stressed over my small op when all this is going on!!!!!
Will keep in touch and let you know how things are going.Have a good Bank Holiday w/end let's hope we get some sun!!!!!
First and foremost congratulations on the baby to come next week how lovely for you, just think when your ablation is all over and the benefits of it begin to show just think how much more fun life is going to be for you and how much more interactive you will be with everything.
Congratulations,Gillyflower13. I cannot offer you any words of wisdom of having been through the procedure. I can only relate to you that I was given the same timeline: 6 months to see GP (Feb to July) and 6 months to wait for ablation if I'm offered it because I don't even know. I have been going absolutely mad at the injustice of the current system in terms of waiting time as "time is of the essence" whether in Canada or the UK as in your case.
I am perplexed why your GP waited 20 years before referring you for an ablation; I thought mine was bad since he took a full year and not until I went into persistent?
Ablation procedures started in 1998 -- 19 years ago!
My utmost best wishes and please do tell us how things go.
Hello pam296 i do apologise for replying to your post so late but have just returned from London.
Thank you for your kind words. I must say i have not felt so free or well for a long time, you never realise what you had until you lose it. AF takes away everything that you once was and now i have me back tick tock tick tock in rhythm and it is the most wonderful sound in the world to me.
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