ICD

Hi everyone

I am due to get an DD-ICD (had 3rd degree heart block in August) due to cardiac sarcoidosis and am now better on meds but docs still think I need one as a "back-up"...

I am having the appointment with the doc to discuss the device and clear any questions and was wondering if you have any suggestions or tips as to what to look out for? Any recommendations on specifically durable leads, devices in general, settings. I am female, 50 yrs old, active (love long hikes, mountain biking and travelling etc.).

Any tips are very much appreciated :-)

 


9 Comments

Hikes

by Jimmy Dinfla - 2021-03-14 16:32:52

You mentioned hiking.  A mistake that I made with the surgery for my ICD was its placement.  Now I cannot wear a backpack or heavy day pack because of the strap going over my ICD.  Padding and wearing the pack strap to the side helps a little, but I am fearful of prolonged pressure on the device.  

There are alternatives for placement of the device.  Recommend talking to your cardiologist who will do the implant.

Jimmy D.

 

hikes

by Carol7 - 2021-03-14 16:58:39

Thanks so much Jimmy, that's a great input about the backpack strap! 

A few thoughts

by Gemita - 2021-03-14 21:21:27

Hello Carol,

I expect your doctors will already have chosen your model of device and best leads to use with your sarcoidosis and no doubt these will be MRI safe so that you can enjoy the benefits of this necessary imaging in the future.  

I would make sure they know about your activities and what you hope your pacemaker/ICD will allow you to do. Some pacemakers are better than others for different activities like cycling for example, so make sure you tell them about your lifestyle because this will help to ensure you receive the best make and model device to suit you.

Don't worry about settings at this stage.  That comes later and it may be a bit of trial and error at first and it can take a few months to find the right settings for you.

If you drive don't forget to ask how soon you can resume driving after ICD implant.  Jimmy's advice on ICD placement is another essential to cover fully.  Think about where you would like it placed and then ask what all your options are ?  Well there is a lot more of course, but no doubt you have your own list of questions?  Again I wish you well and hope it will be the start of a better, safer life

Lifestyle

by AgentX86 - 2021-03-14 22:44:05

To expound a little on what Gemita said... If you heart is chronotropically incompenent (can't adjust heart rate to physical demand) then the pacemaker manufacturer/model may matter.  The issue is movement of the torso.  The issue is the movement of the torso.  Unlike the heart's sinus node, pacemakers can't know how much oxygen your body demands.  Most pacemakers depend on movement to guess how much oxygen is needed.  If the torso doesn't move much the PM doesn't know you're working harder.  The particular sports where this becomes a problem are cycling (though you do move when mountain biking) and swimming.

However, since you have heart block and say nothing about sinus node problems, the above likely won't affect you.  Your SI node will still be able to sense the oxygen demand and drive the heart as fast as it needs to go to deliver the required oxygen (within the limits that your EP sets for you).

the pacemaker manufacturer/model matters (a lot) if you're a road cyclist or swimmer. The issue is the

Do You have a device now?

by PacedNRunning - 2021-03-15 00:22:09

I'm confused if you have 3rd degree block you must have a PM now? Correct?  Like everyone else said, all the devices are pretty much the same.  Some do certain things better than other.  I would say trust what your doctor recommends based on your condition.  I have learned the relationship with the MD and the rep makes a difference.  I have mine under my skin. Best place for me.  It's super deep and I have no issues.  I can wear purses;,bra's, seatbelts, and backpacks.  It's not shallow like some are placed under the skin. It's also about 3" below my collarbone which to me is more important than under the skin vs under the muscle if your active. It hides better the further down it is from your collarbone.  I play golf and if it were higher, it would bump into my collarbone.  Let your doctor know your active. MIne knew I was and placed it well.  I have Boston Scientific and the thinnest leads on the market.  Boston has one of the smallest devices on the market.  St Jude/Abbott is the smallest, Boston then Biotronik and Medtronic.  So size also matters.  Smaller device hides better than larger ones.  My doctor choose Boston for the MV sensor in case i needed it in the future. I have high grade block and my sinus node works fine so for now I do not need the MV sensor.  But it's there if I need it in the future.  Definitely talk to your doctor about what you want from the device and which one he/she feels is good for you.

 

 

pacer placement

by Julros - 2021-03-15 02:28:05

My son who is 40, had his ICD placed under the pectoral muscle because he backpacks. It took a while to heal, but he has not issues with straps. Adjusting for cycling ease has been a challenge, but his clinic seems willing to make adjustments. Mine pacer (not an icd)  is just under the skin below my collar bone. If I was younger, I would likely be conscientious about the bump. 

icd

by Carol7 - 2021-03-15 04:38:07

Hi and thanks for your comments!

No I don't have a device yet, I just have a loop recorder implanted. I also don't have sinus node problems. 

IDC

by TAC - 2021-03-15 11:01:07

The technical aspects of the IDC will be the responsibility of the electrophysiological. The patient will have very little input in this regard.

Sinus node dysfunctoin

by AgentX86 - 2021-03-15 16:33:38

As long as your sinus node is OK, it really shouldn't matter much which device you get. It's important to remember - always tell your EP your activity level, the activities that you enjoy, and anything else to do with your lifestyle. Most patients that EPs see, whether on their own or because of their condition, are couch potatoes.  If you're active and want to stay that way, make sure your EP knows everything about your lifestyle.  It's critical that he be on board with where you want to go so that he can make the best decisions for you

That's not to say that you should just hand over all decisions to him.  If he has a problem with you questioning his descisions, find another EP.  He should be able to tell you why he's doing what he's doing without a seconds hesitation and without offense.  It's his job.  It's your life.

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