Well folks saw EP at Papworth this Tuesday. As some of you will know I went privately as I could not get a referral through my Cardiologist said I had no need to see one.
AF was diagnosed 3 1/2 years ago ( I think I have had it for many years before) admmited to hospital with heart failure and AF found. Have been on medication all this time, had no cardiversions or ablations.
He went through my history and he is recommending a pace and ablate, both to be done at the same time. I donn't know what I expected to hear but it was not that, so was stunned somewhat.
He did say my HR is so irratic, having a test to confirm just how bad it is and that mediction is not doing its job and more than likely making me feel worse.
So I have a lot of thinking to do, still feel a bit numb at the moment and still have questions to ask him.
One thing that worries me is my Father died last August, just gave up on life, he was 94 in a care home, very little mobility ect ect. He had a pacemaker for low heartrate and it was this that kept him alive over the three gruelling weeks at the end. He kept asking for it to be turned of so he could go quickly, but that is not possible. He was not with us mentally most of the time, it was horible to watch. Also had an uncle 10 years ago who suffered badly because his pacemaker was keeping him alive. Perhaps in these circumstances they should be turned off) I would just not like to go through such a slow undignified death.
Would love to hear from anyone who has the pace and ablte recently. Of course I have been through some of the old post (first thing I did on Tuesday evening when I got home). I have sent my regards to Marney who is about to go through similar.
Cassie
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cassie46
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Your post raises another dimension on the subject of pacemakers.
The subject of end of life care has been in the news a number of times recently as has the sometime wish of some to not continue their life when for the individual concerned they have had enough of the pain and futility they feel.
I for one had never thought about how a pacemaker could add to the anguish.
However, having said all that, I think we should all count our blessings that we have been given life in the first place and your situation is that your EP's aim is to improve your quality of life right now. Your quality of life right now is what is important. 3 ½ years is a long time to endure without being offered help other than meds.
The only other point I would like to raise is that when my EP discussed pace and ablate he said he would implant the pacemaker first and ablate the AV node 6 weeks later to ensure that the pacemaker had been accepted and was compatible and working properly.
Sorry to hear what you are going through at this particular moment in time, very distressing for you. I don't have any answers for you, except to maybe to get a second opinion with another EP.
At one stage during my atrial flutter/atrial fibrillation journey, at the very beginning, they were going to give me a pacemaker, as my heart was pausing for three to 4 seconds without a heartbeat, l think if l remember it was called a 3rd degree block? I declined the procedure.
Yes, what a shock it must have been for you to be told that Cassie! How bad has your heart been making you feel?
I can understand your concern about end of life with pacemakers or ICD's too. It's something that I have given some thought to, not that I have either.
I expect the tests your EP wants you to have now are to confirm just how your heart is functioning.
Please let us know how you get on.
Big healing hug and know that I'm thinking of you.
I am not too bad, still go out and about but I have slowed down a lot in the last 12 months. Medication has been adjusted (higher dosages which make me feel worse) so back to the lower amounts, but they are not controlling it. So plodding on at the moment.
Oh Cassie. I am so sorry to hear your news. I understood that the Pace and Ablate procedure was done in two stages as has already been mentioned. Papworth is an excellent hospital but it might be helpful to seek a second opinion at another hospital carrying out EP procedures. I do hope you are helped soon. Love and hugs, Anne
My next step is Pace and ablate if things progress so I am interested in your post and I do hope that someone who has had the procedure will respond.
You raise some interesting points. My daughter-in-laws grandfather was given a pacemaker aged 101 2 years ago whilst in hospital. He was deaf, senile and fast declining but unfortunately the cardiologist called to an erratic heartbeat caught him on one of the few occasions he was not confused and he said he wanted one so nothing his family could do to stop it. It enabled him to be discharged from hospital so the family had to care for him. He lived for another few months.
You don't say how old you are but I am imagining a few years younger so I think a more important question you need to consider is not length of life but quality of life. I am 66 and there is still a lot I want to do but a few months ago my QOL was pretty miserable and I was ready to do anything to get out and about, travel and have a social life so was ready to have the procedure because of the promise a significant improvement in QOL.
I have seen posts on this forum of people who report being able to walk and exercise again after years of inactivity and described having the procedure as 'a new lease of life'.
If you have co-morbidities and a low expectation of life and are ready to prepare to start dying - for that IS what happens when we stop living - then I would decline. Otherwise I would do a lot more research into the procedure, go back and discuss with your GP and ask for a prognosis if you continue as you are and what alternatives.
The more you discuss and the more research you do the better armed you will be to make a considered and informed decision.
This procedure seems to be becoming much more prevalent.
I would ask why EP would do both procedures would be done together as my EP said it would be pacemaker implantation - which is a 45 min procedure done under a local anaesthetic by the way and not a huge operation which it used to be - a 6 week settling period and making sure the settings were correct.
Hubbie had pacemaker implanted 4 years ago - at 83 he plays golf, volunteersnfor 2 organisations, is a trainer/coach for one and I can't keep up with him.
In your position I would go for it but it has to be your decision.
My dad had a pacemaker implanted in his 80s for arrhythmia. He lived to 101. The dr said it would not keep him alive if the heart wanted to stop. It didn't.
Link to a thread 6 months ago asking same question. Go to top right hand and tap the search magnifying glass button and put in 'Pace and Ablate' in the search and you will find a few threads on the subject which will give you a good overview of people's experiences.
That must have come as a shock and you must be feeling good that you've received expert advice and maybe at the same wishing you hadn't!
I reckon I'll have a pace and abate eventually. Never thought about the pacemaker keeping me alive against my will though. As someone who would like to be let go quickly when the time comes, I find that very unsettling.
But even so, if the procedure was going to improve my life in the meantime, I'd almost definitely still go for it. Although I'd like mine to have an on/off switch! Maybe not literally, but I would like assurance somehow that the device would not be used to just keep me alive. There is some legal action going through the courts now concerning end of life concerns.
I find it incredible that your cardiologist thought you didn't need to see someone who specialises in heart rhythm disorders, when you have a heart rhythm disorder!!!
Some interesting and useful thoughts above. We cannot know how end of life will be viewed in the future so my advice would be to live for the present and start making plans for some new activities which interest you!
I have an ICD and I have given it some thought. End of life with an ICD would be extreamly distressing for patient and loved ones. This is something to be addressed early on and legally. The arrhythmia nurses at Papworth are good so initially you could discuss it with them. Also you could ask them about the 2 procedures being done at the same time.
It is devastating to receive unwelcome news at a consultation. I remember being told I had heart failure which came as a total shock. You have my sympathy.
I believe the ICD element can be switched off near end of life. I was told that by the End of Life Care team at our local hospital- you need to make advance directives & register with your GP.
If your cardiologist thought you did not need to see an EP, perhaps he will disagree with this diagnosis and agree to refer you for a second opinion. I think in your situation i would get another opinion before going ahead.
Hi. I had a pace and ablate done in january this year. They wouldnt do both operations together. Ive suffered from af for 6 years. Had every medication going. 2 cardioversions and 2 abulations . This was my last hope.
Surgery was a little painfull. But to be honest i hung on to the hope that i was finally going to be able to have my life bk.
Its now september . And im struggling. Im still having symptons and have returned to see consultant. His answer was that i will suffer these symtons and didnt seem interested that at 52 i had expected a better outcome. Do i wish id not had it done ...yes....but at the same time i had to try. I fully appreciate that for some its changed their lives. Amd i would never want to put you off. I just wanted to say that for some it doesnt work. Although this was never fully explained to me
I wish you all the best. And hope that whatever you decide...you have a good outcome
Donna, I'm so sorry it didn't go as well for you as you hoped. I read some other remarks by people who had had ablations and it seems to take some of them quite a while to recover. Maybe you will continue to improve.
Sorry to hear the cardiologists pronouncement. I'm 61 and have been diagnosed with AF since 2014 and probably had it for some time b4 as I had frequent periods of heart pounding and shortness of breath for several years b4 going in to check it out.
I've taken the holistic approach and the only med I take still is Diltiezem 120-MG once per day. It does still seem to help some. I have been working to replace my meds and live a better lifestyle and use natural/herbs/vitamin approach and it appears to be working.
When I was on prescription blood thinners, metropolol, digoxin and valsartan, I felt like I could barely get anything done. this wasn't living by my book. So I started on my journey of herbs/vitamins and got off of all but the digoxin and diltiezem. Around February of 2017 I weaned myself off of digoxin using instead Hawthorne Berry which works similar but few side effects. Then in June I started taking an Hindu Ayurvedic concoction and serapeptase which has made a huge difference. I now FEEL like going out in the garage and cleaning, moving stuff. I have an electric bike and a motorcycle that needed work but felt too poorly especially after work to do anything with them. Two weeks ago I changed the 2 30lb lead acid batteries and reclaimed my ebike yay! Runs great! LAst weekend I rolled my Honda 750 Mgana parts bike and took vitually everything off of it and felt fine doing it!
Used to be walks to the corner store (4 blocks) I had to stop 2-3 times to catch my breath. Now, I walk the the whole way without stopping and no shortness of breath and when I take my pulse rate 76-82! Used to be 110-126 b4 the new "meds."
DO what you feel you must, but there is hope by altering what you eat and taking some alternative therapies instead of what we are fed by the establishment medical society.
Good luck in your search for health,
JP in Chico, CA. USA
P.S. I mention more details on what I take in other of my posts in this blog.
Hi I've had my pacemaker three years once rate was sorted that and meds have allowed me back to gym 5/6 days a week an hour each day. I'm 99% paced now I feel much better than I did pre cox maze and open heart surgery to remove a benign tumour in my heart.
Hi all thanks for all your comments. My EP is a very well known and respected at Papworth and nationaly, so I will stay with him. I have more tests to come, one is a 24 monitor to see exactly how my heart rate is behaving and another echo. If I go ahead I have decided that I will not have both done together, pacemaker first and get that sorted and settled. Will await further results and go from there. Will let you know what happens.
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