Date for pace and ablate

[Nannysue1]

I've had my date through for the pacemaker fitting, the 26th Sept.

To say that my knees are knocking together is an understatement .😱

[Hidden]

Hello

So pleased you have got a date even though I think with us all when we finally get one all our knees start knocking together

I had Bypasses but I know lots have had a pacemaker fitted and when they log on they will tell you more but wanted to wish you all the best and I know you will be fine and look forward to reading your post when you have had your pacemaker saying how well you are doing x

[Nannysue1 in reply to Hidden]

Thanks for those kind words

[Rhinos67]

I had a pacemaker fitted at the beginning of May.Feel free to ask anything that you are unsure of.

Joanne

😊

[Nannysue1 in reply to Rhinos67]

Thankyou. Did you also have AV node ablation?

[ahcm in reply to Nannysue1]

Hi Nannysue1, I had a CRT Pacemaker fitted 6 weeks ago. Now I am waiting for a AV node ablation. I have HOCM so my heart muscle has become thickened which made the insertion a bit tricky. My cardiologist decided to give me a general anesthetic. Stayed overnight in hospital and was well looked after. It's not too bad, the worst part for me was not being able to lift my arm for six weeks. The first week my neck and shoulder ached a bit but on the whole everything has gone well. Just be aware that pulling clothes on over your head will be virtually impossible! I got myself a few Button up blouses to wear. So glad I did.

I have an appointment with the pacemaker technician team at hospital next week. I'm hoping they'll hurry along my Ablation surgery as I'm still having Afib episodes every three days, they last on average 30 hours, so my life is and has been on hold for a long time.

I'm sure you'll be fine when your turn comes, the weeks will fly by and before you know it you'll have had yours.

I'll report on my Ablation when the time comes!

[Nannysue1 in reply to ahcm]

Thankyou for all of that. I also have HOCM but pretty mild, hope it doesn't interfere with the insertion. I'm in permanent AF anyway and have been for the last 2yrs. Are you still taking medication until the ablation.?.

[ahcm in reply to Nannysue1]

Yes, I'm taking dilltiazem. I took bisoprolol for six years until the beginning of the year. I was then put on Amiodarone, which I only took for six weeks as I had a very bad reaction to it. That was when they tried me on Diltiazem, nothing I've tried has stopped my AF which is why I have the pacemaker.

Whenever I have an afib episode I take a 2.5mg bisoprolol and that single tablet does help with the palpitations.

I also take Apixaban, and Furosemide for heart failure.

I would love not to take anything but I'll have to see what Cardiology say. I'm sure that I'll be on Apixaban for life. Furosemide too as I have developed oedema.

[HeartyJames in reply to ahcm]

Me too crt in October. Is the left arm restricted a lot and can you move left arm to right arm or does it get in the way. Can I message you as have a few questions? I am self employed so , wondering how long I need to close for as I sell books. I have to pack them and carry boxes and postal sacks. computer side of things should be ok. I think its going to be tricky.. What is HOCM?

[HeartyJames in reply to HeartyJames]

ok its genetic thickening

[Nannysue1 in reply to HeartyJames]

Did you mean this question to me as I havent had the pacemaker fitted yet, so dont think I can answer many questions myself but you can ask.

[HeartyJames in reply to Nannysue1]

oh I dont know haha

[ahcm in reply to HeartyJames]

Just caught your post, Your left arm will be painful for a week or two. So you won't need to prevent yourself moving it much as it hurts. I wouldn't think it's a dvisable to

do too much carry and certainly no lifting the arm above shoulder level as the wires could come loose. There isn't a problem lifting up with the right arm as long as you can't feet a pull on the shoulders. Everyone will experience a different recovery.

It's 6 weeks today for mine and I'm just starting to raise my shoulder very gingerly!

As for me I'm 73, I'm slim and fairly agile except when I'm in AF, then I'm fit for nothing

! As for HOCM, it's Hypertrophic Cardiomyothopy, an hereditary heart muscle disease. Mine has been getting a problem for six years now, there are no more drugs, it's pacemaker time! Hope that helps, any more questions I will do my best to reply.

[HeartyJames in reply to ahcm]

Thanks and hello ahcm

I am a little worried as I heal very, very slowly . Never had any operation, but if I cut my finger it can take weeks and the skin sometimes goes over scab, so will see how that goes. Maybe I will need to close for a month . Good job its not peak time. Suppose I can take the opportunity to do computer based listing and development work. I am 58 . Losing weight daily so that always helps everything.

Did you have any pre-op assessment. I think they are going to do mine by telephone!! Not ideal for me as not a great verbal communicater.

[ahcm in reply to HeartyJames]

Hi HeartyJames, You sound as if you are in a bit of a dilemma. To be on the safe side I agree with your plan to close up for a month. After four weeks your scar will be healing well. Mine is still a bit ugly looking. Mine was closed with surgical glue and stitches and felt very strange at first. The stitches dissolve by themselves but the glue peels away very slowly, mine still has quite a bit left and every day I carefully tug a little more off! You will need to visit your GP nurse after 7 to 10 days to have the plaster taken off and checked. Don't worry too much being slow to heal we are all different. You'll have a information sheet from the cath lab for any queries. As for the pre-op assessment I would have thought that only a hospital visit would suffice. You'll need blood pressure and ECG check before any procedure. I would query that telephone call, it sounds unusual. I too don't do well with telephone consultations, I put the phone down and think Oh I've forgotten to ask about so and so! And I forget what they tell me anyway.

[Rhinos67]

No I didn't need to have that I was in full heart block following the replacement of my AV. I spent 12 days in ICU on an external pacemaker before I was well enough to have one fitted

[Nannysue1]

Jeez louise ! That sounds horrific. Bet you feel a whole lot better now

[Rhinos67 in reply to Nannysue1]

I do thanks. Its taken a long time for the pacemaker to "bed in", but I had zero option but to have it fitted.I hope that it all does okay for you x

[Eadaoin]

I had a pacemaker implanted in 2008. The only discomfort was that the pm had to be pushed down into place which seemed to take ages but it was not at all painful. Recovery is quick. After about 6 weeks I forgot I had a pm there except for the new confidence it gave me. In 2018 I had an AV Node Ablation. The procedure was even quicker than the pm implant. Neither were done in an Operating Room but in a Cath Lab -for both I was in hospital overnight because of my serious blood conditions alongside the heart challenges. I was told to stop Flecanide after the Ablation but have remained on a blood thinner which is now one of the new anti-coagulants, Edoxaban, (after ten years on Warfarin). Best wishes for your pace and ablate. I was a bit nervous before both but the result is well worth having it all done. Am now 79 and have been very grateful for and amazed by the technology !!

[Nannysue1 in reply to Eadaoin]

Thankyou so much for your reply, that all sounds very positive.

[IanMK]

Understandable that you’re anxious. If my experience of a pace & ablate 3 years ago is anything to go by then you’ll be fine. I had mine after an ablation damaged my AV node, but I knew there was a high risk beforehand because of where the source of my arrhythmia was. I am an active 67y.o. male living a normal life with no regrets. Best wishes,

Ian

[Nannysue1 in reply to IanMK]

That really does make me feel better. We're around the same age and I lead quite an active life, hampered at the moment by this AF. Will be fabulous if I can get back to some sort of normality and sinus rhythm. I think it's the whole thing about being 100% dependant on the pacemaker that freaks me out. Thanks for your reply.

[IanMK in reply to Nannysue1]

I was an electronics design engineer before I retired so perhaps that's why it was not a big issue for me. In the very unlikely event that the pacemaker stops pacing completely there are other natural sinus rhythm sources that will keep you going until fixed, albeit probably not at full pelt. I am sure that you can look forward to going for walks or even cycle rides, like me.

[Nannysue1 in reply to IanMK]

I can do walks and chase around after grandkids now, on my good days. It's when I get a few bad ones and my heart goes particularly erratic, that I'm floored and unfortunately, there is no prediction of when the bad days will happen, so makes planning anything difficult. Having been on this journey for 8yrs now and trying pretty much everything, I think this is probably the way to go so that I can just get on with things.

[HeartyJames]

Good luck on thatr. Hope all goes well. Mine due October.

[Nannysue1 in reply to HeartyJames]

Good luck to you as well then.

[Bobkins99]

I occasionally blacked out, happening since 1990. Various tests and an angiogram could find nothing fundamentally wrong with my heart except there were some wierd electrical signals on the ECG. Nothing was done until I blacked out in 2018 and got a massive concussion from hitting my head on the tiles floor. It was only during the trip to A&E that when I said it had been happening for 30 years the doctor said that things had moved on and referred to me to the heart team. I had a recordable loop fitted and within 3 weeks it was identified that I had a sinus rhythm issue whereby by heart chambers would get out of synch and it would literally stop until they resynchronized. I had a pacemaker fitted in December 2018 and I've been fine ever since. I wish I'd had it 30 years ago. As other say the first 6weeks are a pain as you have to keep your arms down and not pull or lift anything and it is a bit sore for a few weeks post op, but honestly it is so good to know I can go about my daily life without the fear of just randomly blacking out

[Nannysue1 in reply to Bobkins99]

That was a long time to get a solution. Glad they finally got you fixed.

[Bobkins99 in reply to Nannysue1]

A sign of how much medicine and technology both move on at rapidly.

[playcards]

My whole experience of and after pace and ablate three years ago has been fine, absolutely no traumas and no regrets. Well, I am perhaps a bit peeved my cardiologist still keeps me on all the heart meds (I have HMC). The main thing I want to say is - would I rather depend on my totally reliable pacemaker or my naturally totally unreliable heart? No contest!

[Nannysue1 in reply to playcards]

I have hypertrophic cardiomyopathy as well but from what I understand, mild and doesnt cause me problems and hasnt advanced in the 10yrs that ive known about it. Cardiologist thinks its got to a stage and wont go further 🤞 I'm hoping that I can come off of all medication other than the apixaban.

[Fieldhouse]

Hello, I have just sat down after an hours walk with my dogs and I feel great. Because yesterday I had my ICD fitted similar procedure to what you are having done. The honest truth is it was uncomfortable but that is all, I felt a slight pain when he was pushing the device in and instantly he gave me more pain relief. The nurse informed me the sedation might send me to sleep however it didn’t and I was awake all the time. Try not to think about it too much and concentrate on what it is going to do for your health. My stress levels have dropped considerably today knowing that I have a back up plan now in place. Take care.

[Nannysue1 in reply to Fieldhouse]

Wow, you are up and atom quickly arent you. Glad it's so positive. Thank you

[Classof1988]

Relax and try not to worry! I have no experience of ablation but had my pacemaker fitted in January 2019, had known something was not quite right for almost a year beforehand as couldn't walk as fast as I used to after what seemed like a bad bout of flu. Initially thought my artificial aortic valve might be failing after 30 years of faithful service, but valve was checked out as ok and when I saw the Cardiologist he took an ECG and told me I had total heart block and would need a pacemaker as a matter of urgency! I was admitted and the pacemaker was fitted two days later, with the surgeon and I having a normal conversation while the pacemaker was implanted and the only sensation the discomfort you would expect if someone were to press down firmly onto the chest. Remained in hospital overnight, and because I never lost consciousness I was driving again a week later. Had to be careful not to move the left arm too much or sleep on it at first, but I don't remember any real pain from the process. I know no two people are the same but wish you well. Looking at the threads I suspect I may be in the same age bracket as you are. Hope this helps, one last thing, trust in God to get you through this and He will

[Nannysue1 in reply to Classof1988]

Thank you for sharing your experience, it really does help to have some positive feedback . Same age bracket? So you mean young then 🤣

[Qualipop]

Oh gosh, don't worry. My friend's 87 year old husband recently had one fitted and just sailed through it. After about 2 weeks he had a new lease of life.

[Raznic]

I had this five years ago and have to say that you will be fine. It does feel a bit strange but you can, as I did watch the whole thing on the screen. I found it so fascinating the time went really quickly. Once the ablation is done and they switch you on you'll feel so much better. I haven't looked back.

[coop61]

Ooh glad to hear your news 👏🏻👏🏻 I have just had my pacemaker, ICD fitted and I am a coward but honestly it’s not as bad as we all think! I was so scared that I was on a high and as it was definitely not as bad as I thought ! Hopefully you and everyone else finds this also! 👍🏻

[Nannysue1 in reply to coop61]

Thankyou for taking the time to reply

[Ozette]

I was given a pacemaker in 2013, and that was replaced with a newer model a year ago. It was all very easy, in and out same day.

About six months ago I had an AV Node ablation after 14 years of trying all the usual methods of controlling, A Fib, A Flutter and Atrial Tachycardia, all with debilitating symptoms. That was also an easy procedure taking about an hour, in and out same day, with very minor discomfort or restrictions.

I’m feeling very well since, like a real person with a-life. I recently enjoyed a fabulous trip to Hawaii with my four grandsons. Before the AV Node ablation I didn’t have the energy to even think what to pack for the trip, let alone do it.

And it is frightening to have doctors going inside your heart for the ablation and to think of being pacemaker dependent but I found it all easier than I imagined.

Wishing you well.

[Nannysue1 in reply to Ozette]

Thankyou so much for your reply, that really has made me feel better.

[Pinky100]

Good morning

I remember Having a chat to you before I also have HOCM did you end up having a ablation?

I see your having pace and ablate is that because your heart rate is always high

I have a pacemaker/defibrillator I am back in Afib and still undecided to go ahead with a ablation 😩

[Nannysue1 in reply to Pinky100]

Hi there, yes I remember you.

I didnt ho ahead with the "normal" ablation because the success odds given due to the HOCM was only 30% and I didnt feel it was high enough.

Im having a pacemaker fitted on monday and then the plan is to have the AV node ablation, 6 weeks later.

Really fed up and tired of being in permanent AF , have been in it for 2.5yrs and 8yrs in total with AF.

Really nervous about both proceedures but have decided that for QOL, its time to put my big girl pants on and get this done.

Drugs no longer work for the rythm control and the rate control is all over the place, even though ive tried most of them. Its both tiring and restricting, when my heart goes particularly erratic.

My EP thinks this really is the best solution for me now.

[Pinky100 in reply to Nannysue1]

ahh hope all goes well on 26th September your in the best place Barts are fantastic

I was the same about putting big girl pants on too lol .. it took me 2 years to have my pacemaker/defibrillator I’m so glad I did now it wasn’t half as bad as I thought I was sedated so awake but away with the fairies lol are you going to be just sedated ?

I’m thinking exactly the same as you the ablation rates for us HOCMs are so low and I feel going through all the surgery all for nothing and if it does work can only be for short term like months I’m 90% sure I’m going to except being in Afib permanent my rate is all good at mo but the SOB is good and bad on different days

[Nannysue1 in reply to Pinky100]

Not going to Barts for this. My EP has a clinic out of Barts and it was where i would go for the ablation to halt the AF. He's lead cardiologist at my local hospital here in Kent, so is going to fit both the pacemaker and the AV node ablation 6 weeks later here.

The AV node ablation is a completely different thing , it just knocks the AV node out and my HOCM makes no difference to having this done than anyone else.

When i was considering the ablation for AF relief, i would have had both my own EP and a Professor who specialises in HOCM, carry out the procedure in Barts but with a 30% chance of success still.

The pace and ablate is a final step but I need relief from the AF now.

[Pinky100 in reply to Nannysue1]

Yea pace and ablate is the last resort I have been ask this too but the meds are doing ok at mo for me … Afib is just a nightmare

[Nannysue1 in reply to Pinky100]

it really is an unpleasant thing to deal with. Ill keep my fingers crossed for you that the meds continue to do their job.

[Pinky100 in reply to Nannysue1]

Thank you and good luck to you hope all goes well for you x