Life with an ICD

First Question....what is an ICD or an AICD?  

An AICD is an "Automatic Implanted Cardioverter Defibrillator".

An AICD is a device that monitors a person's heart rate. They are generally implanted into heart failure patients. The device is programmed to perform the following tasks: speed up or slow down your heart, depending upon  the heart rate. The AICD gives your heart a shock if you start having life threatening arrhythmias or an abnormally high heart rate. Arrhythmias occur when your heart does not beat normally. Some arrhythmias can cause the heart to completely stop beating. The shock given by the AICD can make the heart start beating normally again. An AICD can also make your heart beat faster if your heart is not beating fast enough.

Second Question...what does this have to do with me?

My dear wife Susan is a proud recipient of an AICD.   She has had one since 2010.  Most of our story related to our health care issues has focused on the more spectacular.  The circumstances leading to  her getting her ICD was one of our more inconsequential experiences.  Inconsequential to us at the time; but it shouldn't have been.  I think this is part of the "Shell-shock" we experience as we live with ongoing health issues in our home.  We have become jaded over the years and every once in a while we need to take stock of what we've been through and what is happening today and in the future.  This is part of our learning experience.

How did this come about....

Just before Christmas 2009, following Susan's septal myectomy (open heart surgery to remove an obstruction in her heart) she was scheduled for a routine 24hr Holter.  During the 24hrs Susan recorded several consecutive beats of Ventricular Tachycardia.  She had not experienced this before but she described it as being kicked in the chest.  When the Holter was read she got an immediate response from our clinic.  This was when the discussion of the ICD began to take place.  Susan's first reaction to the recommendation was "absolutely not" and "no way".  This is why I am thankful that she has a cardiologist who "gets" her.  Given that Susan's condition is not likely to get better over time, some negotiating took place and Susan did agree to getting the device implanted.

What is involved...

Implanting the device was a day surgical procedure.  The ICD itself is inserted through a small incision in the chest (as shown).  Leads are then inserted directly into the heart.  They are literally screwed to the heart muscle to ensure they are secure.  There are various different configurations depending on the particular condition being addressed.  The configuration shown below is how Susan's ICD is configured.

Susan's ICD has two functionalities.  It can function both as a pacemaker and a defibrillator.  The primary reason she has one is for the defibrillator component.  In the event of an arrhythmia the ICD can try to "pace" her heart out of the unstable rhythm.  If that doesn't work it will de fibrillate (a nice way of saying zap).

Life with an ICD

The ICD has no impact on Susan's day to day life.  She does have some minor discomfort from having the ICD itself.  It can get bumped which isn't pleasant.  She also has to avoid metal detectors or any kind of electro-magnetic field.  This can risk a malfunction or reset of the device.

For me, the device gives me a sense of security.  After being through all of the cardiac adventures we have been through it does give me some comfort that if something were to go wrong with Susan's heart the ICD is there as a back up.  Our insurance policy.  The device does have recording capability that can help diagnosis any issue Susan may be having.  The device can be read periodically and provide some telemetry on the heart.  It can track if she is retaining fluid or how many PACs or PVCs she has experienced.  This can help diagnose some future issues.  It is nice to have the information but I am sure that Susan feels it to be a intrusive.

As I stated, I appreciate that added security that the device provides.  Then again, I am not the one who has to live with it.  There is a great deal of fear that comes along with having a device installed in your body that can jump start your heart.  I think this is why Susan has a love-hate relationship with it.  Yes...it can provide life saving therapy that could save her life but on the other hand this is just another reminder and intrusion in her life. I can certainly understand where she could begin to live in fear of the device.  Especially when you aren't feeling very well from a cardiac perspective.  How bad do you have to start feeling for the thing to go off?  This can certainly have a significant psychological effect.  How big of an effect?  In a post entitled "A Flare for the Dramatic" posted April 27, 2013 I described a 911 call that Susan made in which she was taken to hospital via ambulance after what she described as a "cardiac event."  Although I don't completely agree, the first responder who we talked to felt that this may have been partially driven by anxiety brought on by the fear of the ICD going off (his comment; not mine).  The one thing I cannot deny is that carrying around an electrical bomb in your chest can have some profound psychological effects.

Information Reduces Fear

One of the disappointments of the whole process was the lack of information we received about the device from the Doctors who were proponents of it.  We are not shy about asking questions but at many times you don't think of the right question at the right time.  Doctors like to play up all of the wonderful things the device can do.  It can feel a little like hype.  As we have lived with the device for several years now we have a better understanding (and more realistic view) of what the device can and cannot do. Ironically, some of the functionality and settings was better explained to us by Russell's cardiologist.  Somewhat typical of our experience with adult vs pediatric cardiology.  This is why I think it is so important that people with medical complexities should connect and share their experiences.  We have been able to get to know some talented clinicians in our pacemaker clinic who have been really good at working with us.  The one thing they can't explain is what it is like to live with the device.  I am a strong proponent of peer support, as other patients speak with the authority of their own experience.  Peers can also say things that medical professionals cannot.  You get some very blunt honesty.  The more you understand the greater ability you have to cope with a device that does change your life.

One example of such a peer support group is the ICD support group of Manitoba.  This is a local group of people who meet periodically and support each other.  This is just one example of the types of peer support available but for those with an ICD this would be a good group to investigate.

Website:  http://www.icdsupportgroupofmanitoba.com/


MAILING ADDRESS:
The ICD Support Group of Manitoba
c/o St. Boniface General Hospital
Pacemaker/Defibrillator Clinic, Y2045
409 Tache Avenue
Winnipeg, Manitoba   R2H 2A6