What and how much will they record?

Not sure

by Lurch - 2016-07-05 10:08:03

But believe that they record anything outside of the perimeters set up in the programming.  I know that mine (Biotronik) records and reports A-Fib, A-Flutter, V-Tach, V-Fib, any therapy provided and various alarms of internal issues within itself.

I, too, often feel the wierd beats and sensations so I got an AliveCor ECG device that works through my smart phone to record a single lead ECG (AliveCor.com).  I have been able to establish some "base line" readings and have captured a lot of PVC's and a couple incidents of A-Fib.  I have shared a couple of these with my doctor who helped me understand them better (you can also email the readings if you desire).  It gives me a little piece of mind knowing that I can monitor myself and see if there is a real problem.  

programming

by Tracey_E - 2016-07-05 11:04:11

What they record is part of your settings and varies for each of us based on our needs, doctor's preferences, what device we have. They always record pacing, they do not record every beat like an ekg, but they can pick up pvc's, afib, tachy runs, things like that. How often it records these things and what triggers is it is customized to each of us.

With your home monitor, you might have a button to report an event. With my Merlin, if I have a weird episode, I can push a button and it sends in a full report. They told me to  give them a call to tell them I did it to make sure someone is watching for it when I do this. You can also write down the day/time things happen, that can help them pinpoint what is going on.

When in doubt, don't hesitate to give them a call. Sometimes something new is going on, sometimes the settings need tweaked. In a way it's kind of cool, if we didn't have these we'd have to go through all sorts of tests and appointments to figure it out but sometimes we can get answers with the push of a button :)

Need to ask

by DampDog - 2016-07-06 04:45:30

Cheers guys that's pretty much what I expected to hear. I can indeed initiate a data transmission if necessary. At my next device check I will be a little more pro-active in enquireing just exactly what my device settings are. Also what information is sent routinely and at what frequency (daily, weekly,??)

Thanks

DD

Keep a copy.

by DampDog - 2016-07-06 16:07:58

Good call, will do.

I've initiated a data transmision earlier today on the advice of one of the physio's at cardiac rehab. Prior to each session they do some basic checks before they start the exercise session. He asked how I'd been feeling and I told him I'd been feeling much more fatigued over the past few days and also been aware of significantly more "odd-beats" He did my blood pressure and checked my pulse. He said "yup you have an irregular rythym there. I can hear the "odd-beats" no exercise today" Go home send a data transmission and I'll see that it gets looked at. (but chances are it will be in the morning)  So I'm expecting a call in the morning. I also saw my GP who was about as much use as a chocolate teapot. He looked at my notes and commented I'm overdue for a review with my consultant "You should give him a ring" he may want to see you. He didn't even listen to my heart.

So we will see what tomorrow brings.

Recordings...

by Cabg Patch - 2016-07-06 20:30:05

One thing you have to bear in mind...all devices have limited memory and therefore only anomolies your doctor feels are important for your overall well being are recorded.

So why is it important to bear this in mind? Simply because when you are interrogated the printout of problems may not coincide with the strange little twinges you've been feeling. Doesn't mean they didn't happen, just that they were determined non significant to you.

Kind of like when you are having problems and they tell you your device is operating normally...just not for you specifically.

Data transmission

by DampDog - 2016-07-07 05:44:53

Well following a short telephone conversation this morning with a pacing technician, I have indeed been getting more isolated (ectopic?) beats. My count has increased from about 46 an hour to 98 over the past week or so. In addition I had one very short run of VT (less than 2 seconds) that self terminated. Conversation also bought to light that I should have been seen at a follow-up clinic 8 weeks ago, but for whatever reason no appointment was placed. Upshot is I have an urgent appointment slot tomorrow morning. 

Sacubitril?

by DampDog - 2016-07-09 13:00:47

Well I have been in to see my consultant and he’s taken a look at the data from the manual download I did a couple of days back. I am already at the maximum recommended dose of Bisoprolol which is the main medication I’m on to suppress the irregular beats. (prior to having the device I was on the minimum) There are more powerful drugs for treating the arrhythmias but they come with their own problems and side effects.  So he is going to try me on a newish drug called sacubitril?? Which is apparently a combination drug. I have also been assigned to the heart failure clinic so I can be monitored more closely while the new medication is titrated up to full strength.  They also give the component drugs individually to begin with, before switching to the combined pill.

So as yet getting the CRT-D is starting to feel like a really bad choice. (I feel like swearing but I’d probably get kicked form the forum) As of yet I’m feeling far worse than I was prior to having the implant. I need to take significantly more medication than I did prior to having it and I feel like I should have a season ticket at the hospital. Constant fatigue is really annoying and depressing.  Hindsight is a wonderful thing but had I known how this was going to unfold I would not have had the device fitted, or realistically delayed it as far as possible. My advice to anyone facing the choice as to whether to have a device implanted is to make sure you don’t get talked into it until you’ve explored ALL the medical alternatives first. It’s not a choice that can be undone. I am not a happy bunny at the moment.

regrets for getting it

by Tracey_E - 2016-07-12 08:29:01

Were they not adequately able to treat your fast beats before? Those are dangerous and put you at stroke risk, so that is a valid reason to get a device because the meds can make our rate dangerously slow. It sounds like the problems you are having are more from the meds than the pacing. Have they discussed ablation rather than medication? Some of us just don't tolerate the meds well. Bisoprolol is known for having fewer side effects than the others. Sometimes ablation can fix it once and for all. 

As for delaying, you don't just have a plain ole pacer, you have a CRT-D which does a lot more than simply raise the heart rate. With your family history, the defib was a smart choice. You only need it once to save your life. If nothing else, don't regret that. 

TraceyE

by DampDog - 2016-07-12 10:23:49

Thanks for taking the time to reply.

Like many of the good folk on here my cardiac problems have developed/progressed over many years, so I’ll try and give a brief overview of my history.

I had my initial MI way back in 1998, that necessitated an immediate triple bypass as a result. I became moderately bradycardic from day one, with a resting rate of around 40. Once I’d recovered I was relatively symptom free, other than being more easily fatigued than prior to my MI. Meds were limited to a Statin, aspirin and a low dose Beta-blocker (Atenolol) for maybe 12 years. Other than the fatigue I was generally fine.(at some point they added Lisinopril, but I can't remember exactly when)

Just prior to Xmas 2012 I suffered another NSTEMI and my meds were changed. Ramipril, Atorvastatin, Monomil, Nicorandil, Bisoprolol (1.25) Again I recovered well until Xmas 2013 when I had another NSTEMI. Medication remained unchanged but I was referred for various more detailed cardiac tests. Results from those test indicated that my heart had begun to enlarge (dilated/ischemic cardiomyopathy) and my ejection fraction had fallen to 39%, they also confirmed LBBB QRS 140ms. I was then transferred to a specialist in pacing.  The NHS is good but not fast!  So it took until mid 2015 before I’d had a Mibi, MuGa done and they came up with a more accurate ejection fraction of 33-34% Other than being brady, and having the rhythm abnormality due to the LBBB I had not had any problems with extra/missed beats.

It was suggested it would be beneficial having a CRT-D implanted to correct the dyssynchrony and possibly improve my EF. Another benefit would be being able to pace me out of the bradycardia and facilitate optimized medication. Also the LBBB meant I may at some point be susceptible to sudden life threatening arrhythmias.

I had the CRT-D implanted Mar 2016 and unfortunately picked up a post op infection within 2 days. I spent 11 days in hospital, during that time I also had had 3-4 runs of VT. The longest being 2mins.They increased my Bisoprolol to 10mg (5mg, twice a day) This appears to have stopped the VT’s however I have continued to have extra odd beats. Initially only around 20-30 an hour but over the past couple of weeks this has increase to 100+ Hence the changes in medication I’ve mentioned above

I’m frustrated as the CRT-D was supposed to make things better, not worse. I’m far more symptomatic now than prior to having it implanted and on even more meds. Rather than holding off being moer syptomatic having the decvice seems to have initiated a cascade of symptoms, so for the moment at least it doesn't feel like a good decision. Hopefully that will change, fingers crossed. But I would be a liar if I said I wasn't feeling down and disappointed at the moment.

feelings

by Tracey_E - 2016-07-12 17:28:33

You have every right to be down and disappointed at the moment! You've been down a long road and the end of the tunnel isn't where you thought it was going to be. I hope they find the answer and you feel better soon. 

Important settings?

by DampDog - 2016-07-13 05:33:04

Still trying to learn as I go, so what settings measurements should I be asking questions about when I have my next device review. (Medtronic, Viva, Quad XT CRT-D)

At the moment I'm woefully ignorant of what are the right questions to ask and what can and cannot be "Tweeked" All I really know at the moment is that my resting rate is set at 60bpm. Though I have heard 100% paced being mentioned. Though I am not sure if that means I am being paced 100% of the time or just have the left and right chambers synched to address the LBBB.