Hi everyone with or similar LINQ ECG implant fitted. My LINQ device was fitted in February of this year. In May I received a telephone call from the cardiology team, who I have not met, that an Afib event was detected and a medication change to EDOXABAN was prescribed. I have not had any further contact from them. Is this usual? Should I expect a follow up consultation or report. I didn't 'feel' the event but did see it on my watch heart rate monitor for the date and time. Since then I have seen similar rates recorded so may have had other events but I wouldn't know.
I know my local cardiology department is stretched so I'm not particularly anxious but just wondering whether I should expect more contact?
My original event was a stroke in an out of area Trust so I was discharged to my local team for follow up. This is the extent of my contact with Cardiology other than the fitting of the device and a couple of Holters which were not very successful.
Is it a case of no news is good news?
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Chinkoflight
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Hi Chinkoflight .. You need to make an appointment with your Cardiology team for follow-up. As busy as practices are one should never assume “no news is good news”. Especially with your stroke history, good monitoring and ongoing clinical management is important. Please become your own advocate. Best wishes.
Hi, I also have the Linq (it is bead now and never had it replace) however I would see my cardio doctor every 6 to 8 weeks and he would go over the reports with me. I think it would be a good idea to contact your team and get an appointment. Good luck!
I agree with the other comments - best contact them and ask for follow up appt to discuss. I’m in the UK too and i’ve seen a big change over the years in how proactive they are about my LINQ cardiac readings. Before my hospital went ‘wireless’ (and before the pandemic) I was seen every 3-4 months by a technician to download the information. They would ask me about symptoms and send anything of interest to the EP. The EP would then change meds or write or arrange to see me. That all worked brilliantly and I felt like they were on top of what was going on. They picked up some unusual arrthymias too.
But once the information could be received wirelessly, and I didn’t have regular appts, it felt like all communication stopped, I had no idea if the monitoring was working. When I chased it up and got to speak to a technician, it turned out not all recordings were being received.
So best try to get a follow up - and it’s worth working out what you’d like to know. My loop recorder has run out of battery now and I wish before that I’d asked about other things such as my heart rate and occasional non AF arrhythmias and if they had shown up.
Some helpful Q might be:
- What are the parameters you’re setting it at, ie what will it automatically record even if I don’t activate it?
- In what circumstances will you contact me?
- Who sees the results and decides on action?
- Can I have a regular review?
- Can you tell me what is my average heart rate ? Heart rate in AF? Duration? Frequency? Other arrhythmia etc etc.
Hope you get some good comms and support from them
Helpful for me as well. Had mine fitted last October, never heard from them, I went into Afib on 13th October, it’s the longest episode I’ve had and I’m struggling badly with my breathing. So many unanswered questions
I've taken the advice I've received above and made contact with the secretary of the consultant. Still awaiting a response. It's a challenge making phone contact, lodged in writing is a peg in the sand. I am slightly anxious now as I have followed for me an intensive running programme since my stroke. A recent post suggested, following a paroxysmal AFib diagnosis , no exercise when in Afib because of clot risk. I'm not aware of my Afib, but my smartwatch shows some peeks and just occasionally in exercise I am aware of performance limitations. I do back off but have never been told not to exercise and have only had one feedback of Afib in 8 months. In the context of need in a stretched system I'm sure I am low priority but my stroke came out of the blue! We all have to make judgements about how to press our case in a reasonable way. I hope you get a speedier response. My last resort will be to seek support via my GP which will probably be if I have heard nothing by the end of the week.
Oh well done for getting in touch with the secretary, Chinkoflight. I know how hard it is. Fingers crossed you’ll get a response soon, and a helpful one. You’d think at the very least when you had the LINQ implant, they would have given you a number to contact if you had any questions, maybe to speak to an electrophysiologist or someone. Hopefully this contact will result in more helpful comms and monitoring for you.
Please do let us know how you get on, won’t you?
Regarding the exercise, I’m by no means an expert but I’ve never personally heard you should not exercise when in AF due to risk of blood clots. I’ve heard advice about reducing intensive exercise (Eg competitive cycling) because it can trigger AF. Otherwise, the cardiologists I’ve heard speaking about it have said it’s good to keep exercising, just do it within the sensible limits for your heart rate (so if in AF and your rate is faster, take that into consideration). In my PAF events my heart rate is always very fast, so walking to the loo is the max exercise I could manage!
I’m surprised by the suggestion of an increased blood clot risk though. Another thing to ask your cardiologist when you get the chance! Really hope you get some answers soon. Jx
Hi JaneFinn, a second email following failed telephone contact has elicited a response today. I have used the marker twice this week on my LINQ device. The ' Rhythm monitoring team' (😃) called me this afternoon to say they had picked up my one alert and noted nothing untoward. Apparently my tachycardia event is set at 158, news to me, and this hasn't triggered so my watch is as ever not a reliable source. What I can take from this is that my HR is better than I expected, so good news. BUT, I did find out that the little marker device only saves 30 seconds of data, I thought it alerted to the preceding 30 minutes for checking. So the HR they had for my trigger was consistent with my watch and by the time I marked the event my HR had dropped. This is consistent with a treadmill test I did early on when the technicians made note of my fast recovery time.
For now, I am completely reassured, the cardio team did call back, were very nice and know I have been a low demand patient!
So I carry on running, it's doing me good but I will try and capture a high HR on my watch!
Thanks so much for the very helpful reply and prompt!
Oh well done chinkoflight, that sounds like a really good outcome and progress! I’m so glad, that must be a relief to have some answers and reassurance. There’s nothing worse than having symptoms and not knowing what’s what!
I thought that it recorded for longer before the event, too - good to know it doesn’t, so the sooner you press the better. And interesting to know the rate of tachycardia that triggers them to record. Personally I’d still press youe activator whenever your heart is going fast or irregular. Then your cardiologist or EP will have a record of everything that’s going on for you
I really wish I’d found out more about what was happening for me while I had my implant, so if you’ve got a point of contact now, my advice to you is keep asking them whenever you have any questions or concerns! (Even if it means you have to press your activator to get attention!)
Really hope you keep well, and it all remains reassuring. Jxx
Oh I’m so sorry to hear that, Beatle. It’s so frustrating, and worrying too, isn’t it? Everything has changed regarding follow up and monitoring, and none of it for the better
I guess at least it’s a positive that they should be getting a record of this - the rate etc and anything else that might be making you breathless. I do hope you can get in touch with someone about that and get some helpful response. Do let us know, won’t you? X
Sometimes it feels like you’re going backwards, doesn’t it?! I never understood why I was given ecgs whilst I had my loop recorder implanted, but the GP and cardiologist still wanted one for appointments! I think they do potentially show different things maybe. But it’s communication you really need from them, isn’t it?- I really hope you get a response from the team soon. Xx
I went for ecg earlier. The practice nurse that did it had never heard of a Linq Reveal. I had to show her where it’s implanted and explain how it worked. Hard to believe really!
Well hopefully she will go away and talk to her managers, but such a shame as it's an important health policy initiative. I would discuss with your GP as they have a role in shaping acute care services locally as well as a health prevention role.
I hope your ecg was ok? (In the brief snapshot it could take, I mean.) And I really hope you get some response from the team soon about your ILR recordings. Jx
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