I'm writing this help others that may be considering going down the CRT Route. Obviously, everything I write relates to my own experience and as we all know, 'everyone is different'.
My CRT-D consists of a pacemaker / Defibrillator unit with leads leading to my Left and Right Ventricle. The lead to the right Ventricle is also the ‘shocker’ lead as well as the pacemaker lead. (this is only relevant if you have a CRT – D.
I also have a box that sits next to my bed and allows the CRT-D to communicate with the hospital. Make sure you get this when you leave hospital and makes sure you plug it in and get it working. I didn’t and at 10:15 on Sunday morning my chest emitted an alarm and scared the bejesus out of me. I really thought I was about to be shocked. Turns out, it just wanted to download data to the hospital and I hadn’t set the box up.
I have had my CRT-D implanted for a week now. It was switched on but I was told it wouldn’t have much impact until after my ablation. I now must wait 5 weeks for a ‘Wound Check’ and then I go on the list for AV Node Ablation.
I suspect I may have an issue relating to my Left Ventricle lead. It starting to look like it has been placed too close to my Phrenic nerve and every time it is switched on my diaphragm starts twitching and my nausea increases. I’m told this is fairly common and there are options for treatment and if necessary, have the lead relocated.
I have no medical training whatsoever and would never dream of giving and advise but I’m happy to answer any questions….. if I can.
Hi Ogilvie, glad you are recovering well. Is the box just issued with the defib. implant. I have just had an 'ordinary' dual lead pacemaker fitted but wasn't issued with a box to relay information. I have a 6 week check up on 25 September, presumably to check wound, leads and general state of play.
I didn't get my communications box at the same time as they implanted the Pacemaker and turned it on. Once 'alive' the unit starts to record and store data relating to the health of my heart. It took 4/5 days for the Pacemaker to fill up and then it went looking for somewhere to dump this data. When it couldn't find anywhere it started complaining, hence the alarm at 10:15 Sunday morning. I had to call the Pacemaker Clinic and inform them that this alarm was going off and it was only then I found out about the box.
I went down and picked up the box yesterday, plugged it in and configured it (5 minute job) and no alarms today. It should download itself from now on - the data is pulled in by the hospital at 04:00 rather than pushed in by the device.
Annoyingly, when I go on holiday I will have to lug this box with me or have the alarm going off every morning at 10:15.
As for alarms. My old ICD was a BIOTRONIK (German) device and didn't have an alarm function. My new CRT-D unit is a MEDTRONIC (American) so there may be different rules for each type of device. It might be worth phoning your Pacemaker Clinic and checking.
Interesting fact about MEDITRONIC CRT-D units. It will sound an alarm if anything is not correct (loose leads etc) but it will not sound an alarm if it's about to shock.
Thank you for getting back to me. Forgive me but I did smile at the thought of an unexpected alarm sounding off in the chest but I also understand the fright I would have got had it happened to me! Glad all is ok. Amazing progression in technology. I read somewhere there is an implant now that is controlled by wifi...hope my signal improves before it is commonplace! It is a bit of an effort dragging the box along on holiday. Will it be dependent on WiFi or phone signal? Mine is a Sorin Kora with BEFLEX leads. I was advised data will be downloaded at 6 month checks... Thanks again for the update.
It looks like it is transmitted via phone signals - just like a mobile phone.
My understanding is that this data is downloaded and analysed by the Pacemaker clinic. Presumably, this alerts them to any issues that may be bubbling away.
It is amazing how technology is helping us all with heart issues. Even in the last ten years there has been a huge leap forward. Lets hope it continues.
I must admit that now the alarm thing has been sorted out my wife and I can laugh about it - but it is the ultimate passion killer !!
Thank you for such an interesting and informative post. I really do think that knowledge is power so your experience of your pacemaker is valuable to those of us who may well have one fitted eventually.
I just know how lost I was when considering going down the CRT route. You are quite correct in that 'knowledge is power' and I hope my experience can help others. I know I have got a lot of help from other peoples experiences.
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