Well the last few months have been awful, mentally and physically. But on a more positive note I've made some decisions ( I think)!!
Will be as brief as poss. After a few years of going crazy thinking it's all in my mind with weird beats and dizziness, I now have a diagnosis of Complex A-typical arrythmia. Long story short, my atria is in Flutter and Fib but my ventricular rate is 45bpm. So I've been feeling awful and not knowing why as kardia says Normal.
Now my Flec and Sertraline and working against me and have hade another joyous reading of Long QRS.
So... I've made the decision of pacemaker then AVnode ablation if needed. Big decision I know but I honestly can not stand feeling ill everyday... I've had 7 bloody years of it and tried everything and 4th ablation isn't on the cards.. Plus I have mentally never been so low but luckily I've found a super cardiac nurse and seeing a cardiac psychologist.
So any advice on what to ask about pacemakers and what type I should ask about and any positive stories would be much appreciated.
Lots of love
Sara xoxox
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booboo73
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Hi booboo, good to hear from you even if it’s for the wrong reasons! CDreamer knows more than most about this and is always helpful and this response should make her aware of you question. Hope it all works out for you….all the best…..
All I know is that my mother had a pacemaker for over twenty years, lived until she was 96 and led a blissfully happy life. Good on you for making the decision. I am sure you will never look back. It was actually getting to the decision that was hardest for my mother and by then my father had died, so she was in a sad state of indecision. I hope you will soon be through it and living a wonderful new life. By the way, the op was nothing to worry about either.
Hi Sara, have followed your journey from the beginning so pleased that something concrete is happening in the way of PM. I can't help with that but CDreamer is expert on the subject so doubtless you will hear. Also good to hear that you have a good cardiac nurse and psychologist!Do keep us informed of your progress.
Sara -the best thing I ever did was ditch the meds and go for Pacemaker with AV node if needed - I didn’t need it. I’ll write in the morning questions to ask as long day fixing other people’s computer probs and my eyes are giving way.
So pleased you got a supportive cardiac nurse - makes all the difference.
G'day Sara,
I can't offer you any advice comments etc I'm afraid .... just lend you my support and say, well done, keep us all posted .... it does take a certain act of courage to make these decisions. Well done....... and .... " May the force be with you ".
I can’t comment on the cause/source of your arrhythmia but I can certainly empathise. I was diagnosed with heart failure just after age 60 and this came as a great surprise as I thought I was in good health. My cardiologist attributed this to an arrhythmia, which also came as a surprise to me, although I certainly became aware as the arrhythmia became worse over the following months. The cardiologist referred me to a top EP who conducted an ablation with the understanding beforehand that my AV node may be compromised and a pacemaker may be required, too. When I came around from the GA I had a two chamber CRT-P. I’ve not looked back and my heart failure has now resolved. I’m not scheduled for my next routine cardiac ultrasound scan at my local community cardiac centre for two years. Routine pacemaker check occurs every 6 months but every alternate one is done via a bedside box while I’m asleep.
It’s no big deal. Just think about it as you might a hearing aid or spectacles providing assistance. It may be uncomfortable for a few months but you will get used to it. You are likely to have a visible bump where the device is fitted. I used bio oil and there is no scar to see.
I was lucky to have my pacemaker fitted under GA. That's because it was at the end of a difficult RF ablation procedure where the target area was very small and it was essential that I remain still for a long time.
Some other issue to consider:
If you drive you will need to advise the DVLA of a pacemaker being fitted. You will have to forego driving until your EP confirms to the DVLA that all is well - just a few weeks in my case, as I recall. If a CRT-D is fitted (i.e. with an integrated defibrillator) and the defibrillator triggers, you will have to inform the DVLA and forego driving for a period of time.
It's recommended that you don't use an induction hob (an excuse for your partner to do the cooking if you already have an induction hob 😊). There are various other things that one is advised to avoid but I haven't been particularly rigorous in observing the recommendations and I haven't experienced anything untoward.
A good thing to know is that your heart has back-up systems, so if your pacemaker were to fail completely - which is very unlikely - one of these should kick-in to keep you 'on the back burner' until it can be replaced. On installing your pacemaker, the physiologists will temporarily disable the device to check what your fall-back heart rate is. In my case, it's around 48bpm. I'm 40% atrially paced and 100% bi-ventricularly paced. I have a Boston Scientific biventricular (3-lead) device which has its minimum rate set to 50bpm (it has integral sensors which increase the rate to meet your body's needs with increased exertion). I'm an active 66 rear-old and even with 100% pacing the battery life is forecast to be around 12 years.
This is what Boston Scientific have to say in their guidance:
"Use precautions: Keep the metal detector device head pointed away and at least a 24 inch (60 cm) distance from the implanted device. "
It's similar guidance for many other sources of electrical interference. It is also recommended that a mobile phone is used at your right ear. I think that they are just being ultra cautious to cover their ***. I went through an airport security portal a couple of years ago with no effects other than the staff chastising me (probably because the alarm sounded).
I thought twice before using an electric drill at the top of a ladder. I was drilling a large hole through a brick cavity wall so had to get my weight behind it - the electric motor was only 30cm or so from my pacemaker. I didn't experience anything unusual.
I'd probably be more observant if I had an ICD fitted.
I have managed to continue to cook on my induction hob without issue - just stir with arms outstretched and don't lean over to smell or taste. You get used to it. I have had to send it my driving licence to the DVLA and can't drive for at least six months after the ICD - pacemaker was ok after a month.
I had a pacemaker fitted two years ago due to full heart block. It was a Boston Scientific with a monitor that sits by my bed and takes readings. I had no problems, easy operation to recover from. In August I had it replaced with an ICD due to being diagnosed with Cardiac Sarcoidosis and a loop recorder inserted - part of a research project. I now have two monitors by my bed!!! I am having a check up today but all well so far. I am under Hammersmith Hospital.
Update: the loop recorder detected a short run of VTs in middle of night one night. I think they did some fiddling with my ICD - I guess that is why they are doing the research - to get it just right! I feel so privileged to have such care - otherwise these VTS could simply increase in frequency and length and it would be end of life as I currently know it!
I haven't been through this myself but 3 close family members have and its been life changing for 2 of them. 1 hasn't needed it. Well done on making a decision for yourself that feels positive for you. Best of luck!
Questions to ask about Pacemaker implant:- what type of pacemaker? If you are considering AV node ablation then my EP recommended a Re-synchronisation (CRT) type PM which is when both ventricles are paced to ensure that they stay synchronised. If only one is paced (usual for many procedures) there is a high risk of the ventricles beating out of sync reducing the efficacy of the heart to pump blood which may eventually lead to heart failure.
Placing the LV - left ventricle lead is very much more difficult than the atrial lead the right ventricle lead so you want someone to perform that who has a lot of success with this particular procedure - so ask their success as placement of the LV lead has a high rate of detachment which is what happened to me -the lead was never attached properly so I had to have a revision after 6 months of waiting and believe me - you don’t want to go through that if you can possibly avoid it.
Ask if they will use stitches to close - staples should never be used - too high risk of infection and that is the biggest risk of the procedure and something you also want to avoid.
The implant procedure is a day surgery procedure, when all goes well it will take 1-2 hours. Much of the time is spent messing about checking the pacing so you will feel your heart speed up, slow down and generally do odd things during the procedure. Procedure is under IV pain meds and local anaesthesia- sedation if you request it - I have a lot of complications with sedation so not possible for me. You feel a bit of pushing and pulling but should feel nothing else.
Observed for an hour lying flat, X-ray and then home - all done in about 4-5 hours.
You need to be VERY careful with your left arm for healing and must not raise your arm above shoulder for 4-6 weeks - it could dislodge the LV wire and you really do not want that.
It’s important to keep left shoulder mobilised during healing but a physio should advise but probably won’t so research very gently exercises or ask for advice.
After 6 weeks you will return to have everything checked at a pacemaker clinic where you will see Physiologists who put a magic wand over your heart and check pacings, note results and report to doctors. If you get a talkative one you can pump them for information but generally they like the doctors to explain anything they report. My Pacemaker has a smart phone app which needs to be constantly open and within 2 metres to report so I am attached to my phone. The app doesn’t tell you anything other than everything is connected and reporting. This means I don’t need to go into the clinic for 6 monthly checks.
Once everything is working and you are happy with the pace settings - they do limit the Heart rate until everything settles so you will find you are breathless on any exercise because your HR won’t increase - you will be scheduled for AV node ablation.
What happened to me was that because from the moment the PM was implanted I started to come alive again and I only had one very minor, none symptomatic AF episode after implant after discussion with my doctor decided if the PM alone worked so well why risk another procedure?
Time line:- 2017 implant, 2018 revision - since day one - 4 mild AF episodes when I had pneumonia, UTI and a virus. QOL improved 100% - I’m on no heart meds and cardio fitness is above average for someone my age - the rest of my body is falling apart - but my heart is revived.
Hope that’s a comprehensive enough reply and please do ask any questions.
Link to the Medtronic device I have with explanation of 2 types. I have the simpler version.
Wish I could like this a few times!! Thank you so much for the very informative response. I will print this out and put it in my file.Thank you soooo much xxx
Hi hun. I have a dual pacemaker and defibrillator. Not for the same reasons as yours, I had a SCA at home, but enough of me lol.. I am sure you will find great peace of mind when you have it fitted. I am glad you are getting help from the team and a psychologist. I found CBT and EMDR therapy really helped. I hope you are finally on your way towards a better journey. x
Hi x thank you for that. I'm doing lots of breathing and calming methods at the moment. My psychologist is lovely which is so important and she allows me to swear !!
Hi Sarah, you certainly have been through the mill, I admire your determination to tackle your problems I know how difficult that is when also suffering depression. I too am in the process of deciding the pace and ablate route but find it so hard when suffering stubborn depression which won’t lift. I am glad you have come to a decision and hope all works well for you so you can get your life back your still so young. I have read in the past of very good outcomes for this procedure. Keep us in touch with your progress. 🤗
Hi, yep I can honestly say if I didn't have mental issues I would cope with the physical so much better. I'm really trying to keep an open mind regards the psychologist. But depression is a bitch so I really do understand. Xxx
A friend had a pacemaker fitted and insists it was no problem at all. It's done as a day patient procedure in a few hours; the same for check-ups (after three months, then annually I think). We met for a drink in the pub on the same day as his procedure. He says that he is only occasionally aware of the device. I think they last for about 10 years before a battery replacement is needed.
Your friends experience definitely isn't typical ! The majority of people will feel very bruised and battered after pacemaker insertion, I had an enormous pressure dressing over my whole shoulder and and chest and incredible pain, so no way could I have gone to the pub ! It needs to be understood that the procedure is fairly brutal and painful especially for women who arent built like men ! Recovery is a good 6-8 weeks of being very careful.
Well, he was told not to do any lifting and to avoid using his left arm for a few weeks. But he didn't report any significant pain. I don't know if there are different kinds/sizes of pacemaker which would account for the difference.
I think that you must have been very unlucky as I had virtually no pain, and less bruising than when I knock my arm. You must have bled a lot to have a pressure bandage. They cauterised as they went for my procedures so all I had was a large see through plaster - to check it didn’t become inflamed which couldn’t be removed for 3 days, then nothing as all dissolvable stitches which left barely a scar.
The worst for me was keeping my shoulder mobile as I’d had frozen shoulder on that side a few years before.
My husband and I went out for dinner on the way home from the hospital as there was no way I was going to cook.
Pressure bandage for 24 hours is standard practice in my hospital, my husband had his pm done there as did 2 friends. Another friend who had hers at a different hospital was in so much pain in the following days she was admitted, nothing wrong just extreme pain.
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