Hi All,
I am having a Pacemaker fitted next week. Happily the ablation I had tackled AF successfully but bradycardia has crept back.
Looking forward to this hopefully sorting the problem out and again to being on the road to recovery :)) counting the days....
Will update when I know more
Love to all.
Mickey16
Good luck, I shall be interested to hear how you get on.
Hi Buffafly, Thought I would reply to you and update where I have got to. I have to remember its early days yet. I am learning more about my condition, as I guess we all do, and the fact that we all have different experiences, conditions and reactions.....
The operation went very well and the wound recovery went well. Cannot say it has been a rapid recovery but I think my friends and family all seemed to know someone who "had a new lease of life" didn't help....
I have had excellent care from the Hospital I am receiving treatment from. I have had the Pacemaker "tweaked" twice as I am still not feeling too great. Turns out I have Bradycardia and Junctional Rythm and the Clinic is trying different settings to see if matters can be smoothed out. Time will tell. I have another appt in August and will know more hopefully then.
Best wishes,
Mickey16
Hi Mickey, thank you for the feedback. I have realised since my ablation that it can take a while to feel the full benefit of procedures. I was warned about this when I had a spinal op but not when I had an ablation! I do hope the 'new lease of life' arrives for you in time.
Best wishes, Julia
All the best. Please let us know how you get on.
I have my second 7 day monitor on at the moment and if it shows longer pauses then I am to have a pacemaker. I am in permanent AF.
Take care
Marion
Hi Marion, when you say you are in permanent Afib, what is your heart beat per minute, if you are continuously in rapid ventricular response how do you deal with it? appreciate your feedback.
Hi captainKFF.
A 24 hour monitor showed between 50 and 105 beats per minute but I am on medication to keep it under control.
Before I was diagnosed I had no symptoms and have no real symptoms now - they just told me that my heart was racing - but the monitor revealed that my heart also pauses , which I was totally unaware of .
Unfortunately it will be a while before I get the results of the 7 day monitor.
Hi Marion,
It's ridiculous that they take so long in the UK. My son now lives in Toronto. He had a 48hour monitor last week. His EP phoned him Friday to come in Saturday morning to discuss the results of the monitor. It shows paroxysmal AF. He has to get an MRI scan and ablation carried out within one month. When they can do that in Toronto, why not in the UK. He has other health issues and his consultants could'nt understand why he didn't receive the treatment in the UK that is standard in Canada.
opps! there I go on a rant, sorry.
Walter.
Hi Walter,
You've just said what I have been thinking. Just over 14 weeks to wait!!
I would hope if it showed up anything serious then they they would contact me.
Best wishes. Will be keen to hear how you get on.
Hi jeanjeanie, Thought I would reply to you and update where I have got to. I have to remember its early days yet. I am learning more about my condition, as I guess we all do, and the fact that we all have different experiences, conditions and reactions.....
The operation went very well and the wound recovery went well. Cannot say it has been a rapid recovery but I think my friends and family all seemed to know someone who "had a new lease of life" didn't help....
I have had excellent care from the Hospital I am receiving treatment from. I have had the Pacemaker "tweaked" twice as I am still not feeling too great. Turns out I have Bradycardia and Junctional Rythm and the Clinic is trying different settings to see if matters can be smoothed out. Time will tell. I have another appt in August and will know more hopefully then.
Best wishes,
Mickey16
Oh no, that doesn't sound too good for you at the moment, but then as you said it's early days. I hope things soon start to improve.
Best wishes
Jean
Thank you Jean.
Hi had mine over 12 months now it took a while for all to settle but no looking back now. It keeps me at 60 beats a minute and responds if my bresthing increases up to 125 which is great i am now back in the gym after five or 6 years off new lease of life. Still get tired but pacemaker, flecainide and bisporolol keep me going along with Pradaxa. Good luck
Thank you for your post frills. I appreciate hearing your positive experience. I hope it will be an improvement to where I am now too.
At the moment the bradycardia is more of a problem to me than AF but I know the bradycardia left untreated will lead me back to AF as well.
Kind regards.
Mickey
Hi Mickey, I have bradycardia with PAF as well, how low does your HB goes and do you have symptoms, I had mine all my life, I wander if you did too? appreciate the feedback.
Hi, No I have not had bradycardia all my life. It got diagnosed about 9 years ago. Heart has been slowing down during the intervening time and goes down to about 37, mainly at night, but heart rate is not consistent during day or night and heart is struggling. I feel extremely tired, breathless at times and all the other things that go with bradycardia....
Hi Mickey, I have bradycardia too with PAF. I have been told my condition is due to infrahisian disease so ventricles don't beat quickly like my atria. If you wouldn't mind getting back to me would be much appreciated.
Hi Bryonny, Thought I would reply to you and update where I have got to. I have to remember its early days yet. I am learning more about my condition, as I guess we all do, and the fact that we all have different experiences, conditions and reactions.....
The operation went very well and the wound recovery went well. Cannot say it has been a rapid recovery but I think my friends and family all seemed to know someone who "had a new lease of life" didn't help....
I have had excellent care from the Hospital I am receiving treatment from. I have had the Pacemaker "tweaked" twice as I am still not feeling too great. Turns out I have Bradycardia and Junctional Rythm and the Clinic is trying different settings to see if matters can be smoothed out. Time will tell. I have another appt in August and will know more hopefully then.
Best wishes,
Paula
Dear Paula, thank you so much for letting me know how you are getting on. Great to hear you had a positive experience in hospital and you are now in the recovery phase. Hope that you start to feel better soon and the pacemaker settings are sorted very quickly. Take care and wishing you all the best.
Thought I would reply to you and update where I have got to. I have to remember its early days yet. I am learning more about my condition, as I guess we all do, and the fact that we all have different experiences, conditions and reactions.....
The operation went very well and the wound recovery went well. Cannot say it has been a rapid recovery but I think my friends and family all seemed to know someone who "had a new lease of life" didn't help....
I have had excellent care from the Hospital I am receiving treatment from. I have had the Pacemaker "tweaked" twice as I am still not feeling too great. Turns out I have Bradycardia and Junctional Rythm and the Clinic is trying different settings to see if matters can be smoothed out. Time will tell. I have another appt in August and will know more hopefully then.
Regards,
Mickey16
Hi Frills, Thought I would reply to you and update where I have got to. I have to remember its early days yet. I am learning more about my condition, as I guess we all do, and the fact that we all have different experiences, conditions and reactions.....
The operation went very well and the wound recovery went well. Cannot say it has been a rapid recovery but I think my friends and family all seemed to know someone who "had a new lease of life" didn't help....
I have had excellent care from the Hospital I am receiving treatment from. I have had the Pacemaker "tweaked" twice as I am still not feeling too great. Turns out I have Bradycardia and Junctional Rythm and the Clinic is trying different settings to see if matters can be smoothed out. Time will tell. I have another appt in August and will know more hopefully then.
Kind regards,
Mickey16
Hi Mickey. Let me know how you get on. They want to ablate and pace me which involves killing off my AV node. Not so sure 😕 hope all goes well with you. Regards Barry
Hi Barry, Thought I would reply to you and update where I have got to. I have to remember its early days yet. I am learning more about my condition, as I guess we all do, and the fact that we all have different experiences, conditions and reactions.....
The operation went very well and the wound recovery went well. Cannot say it has been a rapid recovery but I think my friends and family all seemed to know someone who "had a new lease of life" didn't help....
I have had excellent care from the Hospital I am receiving treatment from. I have had the Pacemaker "tweaked" twice as I am still not feeling too great. Turns out I have Bradycardia and Junctional Rythm and the Clinic is trying different settings to see if matters can be smoothed out. Time will tell. I have another appt in August and will know more hopefully then.
Kind regards,
Mickey16
Hi Mickey. So nice to hear from you. I was wondering how you were getting on. Sound's like you've been having a few problems? I can'tremember how much I've told you about my experiences, so bare with me if I'm repeating myself. I have now had 2 failed ablation's 1st one was in Barts in London, and the 2nd in Papworth last December. Papworth has messed me up quite badly. I now have a resting heart rate of 150bpm. So then I was put on the waiting list for Av node ablation and Pace. Ive been suffering these symptoms for 6 month's now, but magically a month ago I had an 8 day blip when I returned to normal rythem. Although I was still out of breath, I began to feel a lot better in myself, so I phoned the Arithmia nurse and told them what had happened. They were very happy with what had occurred, but told me not to get carried away as it could possibly come back. 3 days later I received a letter from Papworth to say that because of the phone call to the nurse, ive now been removed from the waiting list, and if I still need the procedure I will have to go back to my GP for referal again....Guess what! Yep Im back in AF. I now have to wait 18 weeks to get sorted out. Im not a happy Bunny. Anyway hope you feel better soon Mickey, please stay in touch, kind regards Barry.
Hi Barry - I am very upset to hear of your experience, particularly with Papworth. Can you phone back and say that you had not asked to be taken off the waiting list. It sounds like someone has misunderstood your phone call to them. If not contact PALS or your GP and get them to highlight the situation. I would not be happy to let them do that...
Thank you for your best wishes. I will keep in touch. Hope you get this sorted Barry.
Mickey
Hi Mickey. My Doctor is going to write them a Letter explaining things. My Cardiologist has, as I see it, lost interest in my case. He won't even see me on a regular basis to even see how I am. I think they just don't like failed statistics. These Cardiologists all have private practices as well as there NHS practice. They don't like too many failures on their books, it ruins their credibility. Take care of yourself Mickey. Kind regards Barry.
Hi Barry, You are probably right. Make sure you get copies of anything your GP sends. Remember PALS is still available to you after that. However, my personal experience of PALS is limited. In dealing with Papworth myself I have found them to be evasive, un-co-operative and although one cannot use the word liars, one can use the terms discriminators of the truth and near truths, such that, in normal people's perception it is 100% not the truth. The services I received were to block my medical needs because I had been inappropriately treated in the local General Hospital. They did not want to inherit the possibility of a problem. That could be possibly due to one of two reasons.
A. in agreement with you they, don't want to touch anything that gives them a tick in the wrong box.
B. they don't actually know what they are doing when compared to the world class best, even though they have a global status at the highest level. It does not translate to ordinary patients coming from ordinary UK scenarios for treatment. It only seems to apply to one offs specialised treatment that can grab medical headlines.
I wish you all the best Barry and hope your GP's letter resolves the problem.
Mickey
Great reply Mickey. You've hit the nail on the head my friend . Its nice to know,its just not me that thinks this. I'll let you know what happens. Kind regards Barry.
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