Dear community. I am 68 and since 2020 I have had AFib. AT and now episodes of VT.
I’ve had two ablations as well.
I also have HCM inherited from my dear mum…
A pace and ablate looks like my next step and then a dual implant which will be a pacemaker and an ICD.
Has anyone had experience of having this procedure?
I’m quite scared about it all…
Hi, I'm 72 now and my history is stroke, Afib detected then Sudden cardiac arrest following a left ventricular tachycardia event. The automatic treatment for any VT is the fitting of an ICD. Whatever the diagnosis for the cause of your events. A VT especially a LVT dictates an ICD isy understanding. The ICD can vary but you have been advised they wish to have a pacing function alongside the defibrillator which means two leads one to the atrium and one to the ventricle. The atrial lead senses and paces, the ventricle lead intervenes and shocks The ideal situation is it never has to work!!!Your medication regime does it's job as well as the pacing function.I naturally have sinus rhythm bradycardia with some ectopic beats. My normal resting HR is around 40. I have paroxysmal AFib as well as the VT event. The Drs fitted the device and decided to set the pacing function at 60bpm. For a variety of reasons this didn't work for me, so the pacing function is now set to function at a bottom level safety device to protect against the bisoprolol reduction of my resting HR to lower than 35bpm. The upper HR rate is set at 185.
The device checks itself and this is random so very occasionally I will feel it pace for maybe 6 beats or so.
You have a bedside monitor that will send reports over the mobile internet at night to say all's well!
It's fitted under local in less than an hour.
The SCA was out of the blue on a Saturday Parkrun .
There was no logic why then, no warning and I was on a light run, not over exerting or going for a time. Parkrun has been part of my rehab. I could have given up exercise and running, many urged me to do so, but the Drs said I was better protected now than anyone else running on a Saturday.
So I'm glad I have this device, hopefully it will kick in if needed. There are plenty who have written here about it's life saving effectiveness!
Hope this helps. Some people don't have it fitted, but do you drive without a seat belt?
Thank you so much for your post. It was really useful to me. You mentioned a bedside monitor and I was just wondering if I have to have a monitor with me in the daytime too? 🤔
So glad that you can still enjoy the running that you love.
My sport is swimming and diving. I wonder if I will still be able to do these things in the future?
(Springboard not deep sea)
For 6 weeks after the procedure you can't raise your left arm , lift weights etc. The device and leads need to bed in and have tissues form round them to lock them in. I stayed cautious a little longer, not least because I had the lead issue. That was in May. I'm not a swimmer but I love the sea so am going in regularly now and can do all the strokes badly! It's a great activity for fitness and mobility. Diving just mad!!! I used to cycle a lot which is where my basic fitness came from. The stroke was a shock and the possibility of being on my bike out in the sticks and that happening was something I couldn't put my wife through. When I started Couch to 5K I used the Strava app Beacon tracker feature so my wife could see where I was! Never having run I was amazed that C25K got me from struggling to jog for a minute to completing 30 minutes continuously after 9 weeks and I loved the science of it. I would never have thought it possible. I credit the cardiovascular improvement to getting me through the SCA and the Drs sort of agreed. I do have some cardiac damage, not sure how it happened, but I have to live with that risk. Doing nothing would probably be worse for my health and risks. You don't have a monitor through the day. The ICD stores the data and any events and communicates and downloads it's data with the night time monitor. A nil return is just that. Chances are you would know if you had some pacing event. If concerned you can activate your monitor and send the data and call the hospital to check.
Do ask questions, happy to pass on my experience if helpful.
Thank you again for that information.
Hi there. I have some of the problems that you have. HCM was discovered when I had my first brush with AF, aged 60. I have no family history of it and under the lead of cardiology at St Thomas' , I had genetic testing. They couldn't find a gene to link to the HCM . Apparently, although this is mainly an inherited condition, there are a small percentage of "others". They think that mine was down to extensive training at a very young age! Like you, I was a competitive swimmer and the training was pretty harsh. Anyhow, I have HCM.
My journey with AF followed for 8yrs with various medication and a couple of cardioversions. To cut a long story short., 2 years ago I had the pace and ablate procedure. It was a big decision to go this route but for me, it was the best decision and I feel like I have my life back.
I have been swimming both in the pool , sea and lakes and although I've not been on the boards, I have dived in.
The actual procedure is not as bad as it sounds and both the pm insertion and ablation , were half day cases.
Wishing you well. Sue.
Dear Sue, thank you so much for your post.
I didn’t know that HCM could happen without a genetic link. My son hasn’t inherited the faulty gene but my daughter hasn’t been tested as yet.
It’s been recommended that because of the HCM I have a duo unit - mini defibrillator and pacemaker. It’s a larger unit.
Maybe an odd question but I am pretty small (under 5ft!) the unit looks to me about the same size as a computer mouse and I just can’t feel a place under my collar bone where it could possibly fit!!🤔
I really liked reading your positive story re the pace and ablate. So pleased that it won’t stop me swimming!
Thanks again!
Mine isn't dual , I don't have an icd and only one lead. I don't think that my HCM is very severe, maybe that's why.? I have 4 adult children and they were all tested and all OK. I'm about 5.4 ( may have shrunk a bit ). Yes you can see a lump which I didn't like at first but most clothes cover it, even in the summer. I know that the men say that they don't care but us ladies maybe feel a little different.
Absolutely! As much as the look of it, I worry about the feel of it and if I will noice it when I sleep on my left side etc.
Thank you so much for your messages to me.
Yes, I am thinking that your HVM must be less severe than mine?
I wonder how thick my dual unit will be? The scar doesn’t worry me really.🤔
By the way, I monitor my pm via an app that I have on my phone.
Wow, that’s great! 😊
Yes it's linked to the hospital and they would be alerted if there were any problems, they also do a remote reading from it once a year. If I have any questions or issues, I can contact them via the app. It's clever isn't it.
Yes? It’s very clever!
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