Pacemaker Update

[CDreamer]

It’s now 2 weeks since the implant and I am feeling really, really well - probably the best I have ever felt in the last 10 years.

The wound was incredibly neat - 8 clips to hold it together removed after 7 days - it has healed clean and even at this early stage difficult to see. You can just about see the outline of the device.

I rang the clinic about the occasional very strong thumps setting off my diaphragm and taking my breath away and the physiologist suggested that it was probably one of the wires which goes sub-clavicle being so close to the nerve that it was triggering the diaphragm and that it could be adjusted if it was too troublesome and it was a common problem. We decided that I would wait until the 6 week appointment.

I felt SO well in the first few days that I probably overdid things and I had a few days when I was pretty sure that I was in AF for about 48 hours although of course it didn’t show on the Kardia - which my husband cannot get his head around because his does show but he has a 2 lead which is not set to do anything for AF. During the episodes I felt the usual thumping but didn’t have any other symptoms other than the frequent peeing.

My Mg has been much more stable in the last 3 months but now even better and the face droop has almost disappeared unless I am very tired and no Ptosis - so much so I have been forgetting to take my tablets and then +4 hours feeling a bit tired and then look in my pill box and realise I have’nt had any Pyridostigamine for 6-8 hours - unheard of!

The other really, strange but good thing is that all m constant muscle pain has gone! Incredible! I noticed within 48 hours - my body feels loose and relaxed whcih I haven’t had for 20 years! The only explanation I can think of is that my body is now clearing all the waste more efficiently.

It’s now hard to stop myself reaching with my left arm or doing too much, I still get tired but it feels a more healthy tired if that makes sense. I just feel life force returning and energy and enthusiasm with it.

Feeling SO grateful!

Thank you to all who supported me with my shall I/shall I nots and the best wishes, it SO helps.

[jennydog]

Thank you so much for taking the time to update us. Your post is excellent news for those of us who are likely to follow in your footsteps.

Very best wishes for the future.

[falah12345]

So happy for you CDreamer and thank you for sharing your experience with us it is quite encouraging and helping us to think no mater how hard it gets there will be an end to the suffering hopfully

I still feel you may consider going to check this uncomfortable feeling and dont wait the 6 wks ,there are stuff we could sort better if we deal with them early enough so dont undermine this just because you had been through alot worse!

I really hope you will remain well and a very active member of this gropu ,I have a great a dmiration for you and few other people in this group who are so prompt and so dedicated to reply to almost all the posts so Thank you to you all for being their for us all the time !

[Desanthony]

Glad to hear you are doing so well.

[Hidden]

Great news CD, onwards and upwards!! Sounds like Exeter is going to be a runner....😀

[CDreamer in reply to Hidden]

😂👍🏼

[Fastbeat]

What a lovely update, so nice to hear something positive. May it continue and improve further.

[Finvola]

Thank you for the update CD - it is so positive and uplifting and it must be a wonderful feeling for you, after all that you have suffered with AF.

Here’s to a brighter and less stressful future for you. xx

[BobD Volunteer]

Such a lovely positive story. See you on 26th.

[ilovecoffee123]

Great to hear you are doing so well!

[beardy_chris]

HI CD - it sounds like your wound is doing better than mine (our pacemakers were inserted within days of each other). Still a bit uncomfortable but not inflamed or a problem. I haven't felt my pacemaker doing anything - but then again, neither have I passed out - so it is doing its job!

You are right, it is difficult to remember not to reach up with my left arm. I'm thinking about tying it down!

[IanMK]

Great news CDreamer. I know it's been a long and difficult journey and I'm sure the experience you have shared will help many people here.

Looking forward to your next update.

Best wishes

[stormcloud]

So pleased that it has proved to be the right decision for you.So hard to make that decision and I still haven't! I was told that I would have a dual lead pacemaker but I believe yours was different. Was also told it would stick out and be obvious which doesn't seem to be the case with yours.Where did you have it done? Hope things continue to improve for you.You must be so relieved to know you made the right decision.I shall be watching you progress with great interest!

[CDreamer in reply to stormcloud]

It doesn’t stick out but if you look closely you can just about see the outline. It took me over a year to make the decision, it’s not an easy one to make. By next summer I wouldn’t have any worries about wearing low dresses, swimwear & tops as I am told it will bed down.

[meadfoot]

What a wonderful outcome and in a relatively short term, gives hope to everyone. Best wishes for a far healthier future and renewed vigour. Enjoy. X

[cbsrbpm]

This is brilliant CD, so glad your feeling so good. Will you still have the ablate part done?

[CDreamer in reply to cbsrbpm]

TBD

[Buffafly]

Excellent news especially the unexpected bonuses!

[shorttail]

Great uplifting result, well done.

[jeanjeannie50]

So good to hear your news CDreamer and what an inspiring post for others awaiting a similar procedure. As you feel so well will you still go ahead with the ablate part?

Jean

[CDreamer in reply to jeanjeannie50]

I’m waiting until the consultation in November at the PM clinic. My reservations are timing as I don’t want to go in once the colds, coughs & sneezes start as I am immune suppressed. I think I would prefer to delay until the spring 2019 but I’ll wait and see what happens in November.

[Hidden]

That is excellent news and encouraging to hear how great you are feeling! Like a breath of fresh air💜

[dedeottie]

Such good news for you and an uplifting post for all of us aswell. Enjoy your new lease of life. X

[Hilly22]

What a lovely post to read CD, your happiness shines through and I'm so so pleased for you x

[Coco51]

Fabulous news and a really inspiring story. I shall not now feel so scared if a PM is suggested again for me. So thank you and onward and upward!

[RiderontheStorm]

YAY for you!!! Love a happy ending.

[GrannySmithgs5]

So pleased you are feeling so well , look forward to meeting up in Exeter xx

[Hidden]

So happy to hear your good news, CD! I'm glad that this has gone well for you. I join the chorus of appreciation for your thoughtful and helpful posts and responses. They are so helpful! Wishing you all the best.

[Peddling]

This must feel like being handed your life back after these past few difficult years. Really pleased for you, but don’t do too much. Hard not to I know when you are feeling so much better, but follow your own advice and listen to your body. Very best wishes.

[CDreamer in reply to Peddling]

Thanks, always more difficult to do as I say 🙄

[cassie46]

So glad all is going so well CD - Can you tell me what sort of pacemaker you have had and how many leads. Although my EP has said my only option is a pace and ablate he has not gone into detail about the pacemaker. I was under the impression that the pacemaker would not be active until the AV node is ablated but yours obviously is.

My pacemaker would be to keep my hr regular, i seems to be irregular most of the time. I do not need it to stop HR going to low - it never gets down below 70 normally in the 80's - 90's or when bad 140 to 200. I have heard of a few people who went for pace and ablate, had the pacemaker and never had the node ablation. If you could kindly give me some of these details I will know what to ask the EP next time I see him.

I would love to feel as you do now - a renewed sense of energy would be wonderful. I hope you carry on improving and again thanks for the post.

Cassie

[CDreamer in reply to cassie46]

OK - EP advised that the different types of PMs tend to be fitted for different purposes. 2 lead - 1 to atria and 1 to one ventricle - I think usually to the left - tend to be recommended for people with slow HR and therefor programmed to only work when the Heart pauses or goes below a set rate ie 60. Some are programmed to stop to limit the HR so it doesn’t rise but all these designs are not going to be working for more than 40% of the time so they only need a lead to one ventricle.

If you have an AV node ablation, your PM will be working 100% of the time. What is known is that, over time, with only 1 ventricle paced, lead to the ventricles becoming out of sync and then of course you can lose the benefit of the increased heart function.

The type recommended for AV node ablation is 3 leads- 1 to atria, 1 to left ventricle and 1 to the right ventricle. The pacemaker then synchronises the ventricle beats so they continue to beat in unison - hence improving heart function. This is called re synchronising pacing, which is also used for people in heart failure and recommended for anyone with a EF of less than 30%. This type is called a 3 lead, re-synchronising, bi-ventricular PM. It is also a MUCH more expensive option than the 2 lead.

Please know I am not an expert on this - just what I have beeen told and read up on so please do question your own EP and I would recommend you do your own research for your condition.

Hope that helps - best wishes

[CDreamer in reply to CDreamer]

PS - at the moment my PM is set to only cut in when my HR drops below 60 - which it does quite a lot during the day.

[Gincalpe]

Thanks for a very positive post - stay well

[Redders]

So pleased for you CD stay well and see you in Exeter

[NooNoo14]

So pleased for you - congratulations.

[irene75359]

Really delighted you are feeling so well and positive - long may it continue!