New ICD owner

I am a 46 year old firefighter diagnosed with Cariac Saroidosis. I have a Boston Scientific Resonate EL ICD DR. I am post op 3 weeks and had my first visit to the Pacemaker Clinic at Vancouver General Hospital. I have an AV block (I'm a little uncertain what degree AV block it is). Prior to my visit I was feeling great and that the recovery was going well. Yesterday I felt horrible. I felt light headed and a little out of control. At the pacemaker clinic they added a delayed response from the atrium to the ventricle. I believe this is the cause to my lightheadedness. So I had my appointment on Friday morning and I am now dealing with the symptoms over the weekend. 

I have questions that should be for my cardiologist but it is near impossible to speak with him. I don't know if its the COVID crisis or if he is just a busy man? Perhaps both. I do plan to speak to him Monday and also to speak to the PM clinic but thought I would ask questions here as well.  Perhaps others have the same questions? So hear are a few questions.

Are adjustments just that? How much tweaking is needed to zero in on a pacing that works? How long did it take for you to feel normal or your new normal?

Does the heart need to pace as much as possible on it's own? If 100% pacing is required what does that do to the heart overtime?

Will the heart adjust to the new pacing or is it necessary to be tweaked at the clinic? 

Does time of day play a factor in severity of symptoms? In the morning I feel better but in the evening I seem to feel more lightheaded and tired. I felt better prior to the adjustment at the clinic.

Does the native signal come back (at all) after steroid meds (again I have Cardiac Sarcoidosis) If the heart inflamation goes down one would think the electric signal would improve?

Thank you in advance. I do feel isolated at the moment given the COVID crisis and the fact that I am unable to drive. I have a great support group of family and friends but they ask questions that I don't yet have answers for. Any help would be greatly appreciated. 

 

3 Comments

watching

by Bearkat419 - 2020-04-05 15:58:24

watching for answers to some of his questions

Questions

by AgentX86 - 2020-04-05 21:33:05

I'm sure you rcardiologist is a busy man these days.  Is your "cardiologist" an electrophysiologist?  If not, you need one.  You may need both but for your electrical stuff you need an electrician, not a plumber.

There are any number of things that could make you feel lightheaded.  Did you have this problem before your pacemaker?

Are adjustments just that? Yes.  Just hook you up to the machine and push a few keys on the laptop...

How much tweaking is needed to zero in on a pacing that works? As much as it takes to get you feeling better.  Those who are very active generally require more tweaking than couch potatoes.

How long did it take for you to feel normal or your new normal? Something like three heartbeats.  ;-)  Seriously, I was on a high for a couple of months after.  No more flutter (still there but couldn't feel it) and I could sleep again!  After that I got more back to normal and it took a while to get back to where I wanted to be.  Kinda like a sugar high, then crash but much better than before. But, everyone is as different as the reason they needed a pacemaker.

Does the heart need to pace as much as possible on it's own? If possible, sure, but you don't put pacing percentage above feeling normal again.

If 100% pacing is required what does that do to the heart overtime? Hurt?  No but the heart's electrical system sorta gets used to it's new "normal".  If it's paced externally it will tend to use that crutch.  It's not "damaged" but it just gets used to it.  Again, the goal is to feel better (and, of course, live) not to minimize pacing percentage.  Let the pacemaker do  what it needs to do for you to live your life.

Will the heart adjust to the new pacing or is it necessary to be tweaked at the clinic? Some of each.  It depends a lot on your underlying condition though.  There is a lot of getting used to being paced and there are a lot of adjustments may be needed to optimize the pacing.  Again, much of this has to do with how active you are.  If you're an athlete, like a race car, everything has to be tuned to perfection.  A couch potatoe only needs to be tuned to ESPN.

Does time of day play a factor in severity of symptoms? Sure but it usually the other way around.  It may just be that you're doing more so are just pooped by the end of the day.  If that's all it is, it should get better as you get stronger.  This is worth a talk with your doctor, though.  This is also why you need an electrophysiologist rather than a general cardiologist. An EP is a cardiologist who has specialized in the electrical system of the heart.  It makes a big difference.  You may or may not need both (yes, if you have underlying structural problems - if heart block is the only problem, no).

Does the native signal come back (at all) after steroid meds (again I have Cardiac Sarcoidosis) If the heart inflamation goes down one would think the electric signal would improve?  That's a definite maybe.  Some damage is reversable, some not. Afib drugs damaged my thyroid and SI node.  The thyroid healed.  The SI node didn't. I wouldn't count on it, though.  Just get on with your life.  You may not think so now but the PM will make your life better.

Isolation: I'm one of those who, other than trips to the hardware store, would rather be at home playing with my toys.  Unfortunately, my boss sent me home with a laptop, Skype, and a pile of work to do. Starting Tuesday, I'm supposed to go in two days a week (need to use lab equipment) but they're severely separating the socials.  Well, I sure hope it works.

Good luck to you, and welcome to the group!  Hang around, there are a lot of good people here who really want to help.

Adjustments

by PacedNRunning - 2020-04-06 00:11:52

They can definitely make adjustments to the timing of things. Pacemakers are all on timing cycles. For me, It took several months to tweak it for exercise so what Agent x86 says is correct. it took us playing around with the timing cycles to get it right. It does take a little time in the beginning to get it programmed for you specifically. 

 

Tiff

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