Pacemaker decision

[Melleray]

Well, I saw my EP today and discussed with him my fears about having a pace and ablate. Basically he said it is all about what is best for my quality of life, and which ever option I choose will not help me to live longer, but perhaps live better. My AF episodes have become more frequent and are sometimes very disabling, but in between I feel perfectly well, except perhaps for an underlying anxiety about having an episode. This of course determines what I do and where I go. OR, I can have a pace and ablate procedure, which should be okay, BUT there are some people who do not feel well afterwards as their heart does not like the pacing! Now that is a ambiguous statement isn't it?

[ilovecoffee123]

My Dad had pace and ablate 10 months ago and it was a last resort after numerous ablations didn’t work. It was the the best thing he’s ever done. His ejection fraction (how well his left ventricle pumped) was only 10%. Normal is 60% and although it’s not improved much, his quality of life has vastly improved.

There are lots of positive stories on here lately of how pace and ablate have changed peoples lives. We just wished he had it earlier so that he hadn’t wasted so many years being ill. Good luck with everything xx

[MikeyF]

Having read these forums for many years I’d say that the vast majority of folks who have P&A find their lives transformed for the better.

[Buffafly]

Before I had an ablation (2015) my cardiologist said that ten years before the only thing he would have been able to offer me was a pacemaker. It seems that now ablations are on offer they are usually tried first. My ablation was only partially successful but in consultation with my cardiologist I have decided that I would like to avoid another ablation and if I can't tolerate my AF with the very low dose of medication I can take I would prefer to go straight to the PM. This decision has partly been influenced by the people here who have had numerous failed ablations, ended up with PM as a last resort and wished they'd had it years ago. I can understand people having several ablations when it was a newish procedure but as I had a very thorough procedure done with the latest equipment by a highly respected EP and it still wasn't successful I don't feel encouraged to have another go.

I hope you are able to come to a decision you feel comfortable with, best wishes.

[Melleray in reply to Buffafly]

Hi Buffafly - thanks for your reply. My EP offered me another ablation, but as I have had five already, it does not really seem a worthwhile option. I think I am heading towards the pacemaker, not only for myself, but for all the others who are affected by my condition.

[pip_pip]

So did I . My ep was highly respected as they all are, and I had mine done at London Heart Hospital, with top gear. But needed another 2 and now 3 ablations later no AF for 4 years after 15 years of difficulty. !

Think again.

Be well

Phil

[Melleray in reply to pip_pip]

I am pleased to hear that you have done so well with your ablations. I have actually had five ablations, and although my EP did offer to have another go, it just doesn't seem to work for me.

[Melleray]

Thank you all for replies - it is so supportive to talk to people who understand. I went to work this morning and called in at B&Q on the way home. Walked through the door and bang! Nearly passed out as AF kicked in. I thought 'no - I don't want to collapse in B&Q, and turned towards the door. Mercifully, I managed to get into my car and drive home. Then waited 3 hours in AF, trying to manage it at home, but as is my pattern, after 3 hours it becomes almost impossible to move without pulse soaring to 200+ , so I get my friend to drive me to hospital. Once there, I reverted within 30 minutes. We drove home in the dark and pouring rain, feeling relieved and fed up at the same time. Got some fish and chips (a rare treat) and lived to tell the tale. The A&E consultant who treated me at the hospital said 'You are between a rock and a hard place aren't you, and it is a very big step to go with the pacemaker.' He understood my dilemma, but really I cannot go on living this kind of life.

[Hidden]

Hi Melleray. I had a pace and ablate in 2016 and for me it has improved my quality of life immensely. I don't take any cardiac drugs now. For me they never could find the right med combination. I had so many problems. I am in permanent a-fib and my doctor says I am in better shape now than when first diagnosed (2011).

One of the things with a new pacemaker is finding our best rate. It only took about a month- maybe 5-6 weeks total . Right after surgery my rate was set at 80; not comfortable, then lowered to 70 and have been at that rate ever since. If I'm anxious or my rate raises it rarely gets out of the 70's. Wishing you well. Take care. irina

[Melleray in reply to Hidden]

Irina, Thank you so much for taking the time to reply. I can't tell you how much it brings me comfort to hear that you are doing okay. I have had AF for 18 years, and it is in the past two years it has become increasingly frequent despite having 5 ablations. The EP offered to do another ablation, but I could not bear to go through all that again, when it will almost certainly not work.

I saw my EP in June and agreed to a pace and ablate, but when the appointment came through, very quickly, I could not go through with it and cancelled. Then had more AF attacks and arranged to see the EP again. I saw him last Friday and I think he was getting fed up with me. He said I had two choices, to live with the AF, or have a pace and ablate. So I asked him' How will I feel if I have the pacemaker?'. 'Ah', he said 'therein lies the question, some people don't feel very well' So you can see how utterly confused I felt when I left.

The very next day, I had another horrible attack and ended up in A&E again. So, realising that this is going to continue happening for the rest of my life, and that there is not going to be a magical cure, I haver come to the decision to have the PM.

Can I ask, are you still aware of the AF? Also how long did you take to recover from the initial implantation? Presumably, you then waited 6 or so weeks before the ablate part?

Thank you again

[Hidden in reply to Melleray]

Hi Melleray. I felt well almost immediately after the pacemaker because I was no longer having the stressful runs of tachycardia and generally uneven pulse rates which caused so much anxiety.

I am in the US and the procedure here is usually to do the 'pace and ablate' at the same time. I was prepped and draped for both on the table, the pacemaker was inserted then the ablation was done. If done separately that is fine too as I understand this is the usual procedure in some countries.

I was happy to do everything at once. One thing that is VERY important that I don't read about in many posts. That is the importance of absolutely following the post op instructions concerning lifting and stretching our arms too high after the pacemaker. The better we follow these instructions the better result we will have.

Post op care usually involves instructions such as don't lift anything over a certain weight (ie gallons of milk, toddlers, are too heavy), don't raise your arms over your head, (I didn't even blow dry my hair), and whatever else your surgeon advises. If instructions are vague-ask for specifics.

The reason for this is because the lead implanted in the ventricle that paces the heart needs time to heal very well in place. The better it becomes embedded in the tissue the better the pacemaker will pace and problems will be prevented. In my opinion the better we don't disturb the position of our lead(s) in the beginning the better result we will have and the better the pacemaker will function. It takes at least several weeks (if not more) for your body tissue to grow around the leads keeping it from moving about from having too much'wiggle room'. This, in my opinion, is key to getting the best pacemaker functioning possible.

Your doctor is right. After 5 ablations this solution is obviously not working for you. Usually after receiving a pacemaker, your symptoms become well-controlled and further ablations unnecessary. My a-fib is permanent and I can say with honesty I am no longer 'aware' of my pacemaker, my pulse rate beating loudly in my chest, or any feeling that used to cause me worry (heaviness/chest pressure, anxiety over my heart rate, etc. )

It took about 4 weeks to find my best rate. The pacemaker was set at 80 beats/minute in the O.R. After about a month (after some ablation healing had taken place, )the rate was lowered to 70(done in the pacemaker clinic with a magnet-nothing invasive). This rate is where I feel best and am asymptomatic.

One thing about the doctor's comment "therein lies the question. Some people don't feel very well." I would encourage you not to be frightened by this comment. A good surgeon will always tell you what could happen including the 'worst case scenario'. It is the ethical way of informing patients what might happen. Sort of a medical truth in advertising.

I believe I felt well very soon because my ablation was done together so other uncomfortable symptoms were alleviated at the same time. I If you have the ablation at a later date you may continue to have some symptoms a little longer. I would try to have the ablation as soon after the pacemaker as possible if they are done separately.

One more thing that I have heard other patients express concern about as it was not fully explained to them by the surgeon or cardiac nurse. It should be as it would remove unnecessary anxiety patients have:

Since the pacemaker itself is the battery that keeps the whole system functioning some patients worry about this battery running out suddenly-like a child's toy that suddenly stops. This is a scary thought because we are handing over our pulse rate to a medical device.

Pacemaker batteries do not stop suddenly. They are designed to run well for quite a few years before a battery change is necessary (on my last check I was told I had about 9 years left on my current battery) and they run down VERY slowly over time giving the doctor lots of advance notice via routine pacemaker checks that you need a new battery. BTW a battery change is nothing like the original procedure. Your lead is already in place and a new battery just requires a small incision and you're good to go.

Sorry to be so lengthy but I wanted to address all the concerns I picked up from your post and reassure you as much as possible. For me I would have done it sooner if I knew how well I would feel and still remember all the frustration of trial and error meds to see what combo worked best for me (nothing med-wise really worked for me). I now take no cardiac meds.

I would never tell someone what to do but it sounds like your quality of life is not very good with all your continuing problems.

Hope this is helpful and if you have any questions please feel free to PM me at any time. Take care. irina

[Melleray in reply to Hidden]

Irina, thank you so much. I have been immensely helped by all the information you have given me and I really hope that anyone else who reads our posts, find encouragement too. I feel so much better about the whole procedure and I am sure it will be the best thing for me in the long run. I am in the UK, and the practice here is to implant the PM first , then 6 weeks later, do the ablation. I think we all have anxiety about being PM dependent and having nightmare thoughts about the battery running out etc. But you have helped in alleviating these fears. Will keep in touch and let you know how it goes.

[Hidden in reply to Melleray]

I'm sending you a PM. 🐱 irina

[S11m]

Hi, Melleray

They told me my pacemaker was OK last August.

This August they said that it had gone into "power save" mode last November.

They replaced the pacemaker, and the procedure was similar to the original insertion, but included insertion of an additional Atrial lead.

I am feeling much better, but I do not know if the benefit is just due to the new pacemaker and battery, or how much difference the additional atria lead has made. I am trying to be careful not to disturb the lead, as I might have done last time (we are not supposed to blame the surgeon, are we?

I was going to post this in a few days, but now I am here...

The GP thought I was “just depressed” and gave me a prescription for anti-depressants… but the pharmacist took my pulse, and told me I had Bradycardia. I bought a pulse-Oximeter, which told me my pulse rate was going down to 35 at night, with an SpO2 of 75... So the GP referred me to a cardiologist, who also diagnosed Atria Fibrillation, so I had a pacemaker installed in 2011, and then had three Cardioversions and two Catheter Ablations.

The Catheter Ablations stopped the AF, but stopped the Atria pumping… and the atrial lead was out of position, so they could not use it. They told me that it did not matter, as my pacemaker did not work much anyway… but, as I had the pulse logger, I knew that it did, and at the review last month, they told me that the pacemaker had been working 70% of the time. They later told me that there was a one in two hundred mortality risk in removing a lead!

My pacemaker thought that it’s battery was running down, so last November, it went into “power down” mode, and I have been feeling “out of it”, in "dormouse mode" ...and getting bad postural hypotension for some time, so they replaced my pacemaker last week.

I asked the doctor if he could change the atrial lead. He tried to tell me the same excuses, but he eventually said that he could insert an additional atrial lead, which he did.

I had, I think, been free of AF since the second Catheter Ablation, but the surgery triggered AF again. They said it would probably rectify it’s self in a few days… and it did revert to Normal Sinus Rhythm within hours.

On Google I discovered that there is a one in three hundred mortality risk ¿Perhaps that is a US or global figure? from infection when a pacemaker is replaced… and, if I had an infection, it might not be apparent for a year.

[Melleray]

Well, I am so sorry for all that you have been through! It is really not good enough that you were misinformed so much of the time and only because you actually had proof of what you were experiencing, that you were given the extra lead. Unbelievable! I know how difficult this must have been for you. I really hope that you continue to stay well and that all these problems are behind you. Thank you so much for sharing this with all of us on the forum. Please keep in touch.