Tips for Living With Cardiac Rhythm Disorders/an ICD

In July 2008, I was assimilated by the Borg...

...not really. But sort of: I had my first Implantable Cardioverter Defibrillator (ICD) placed.

"An implantable cardioverter-defibrillator (ICD) — a pager-sized device that's implanted into your chest — may reduce your risk of dying if the lower chambers of your heart (ventricles) go into a dangerous rhythm and stop beating effectively (cardiac arrest)," - Mayo Clinic.

So an ICD is used to treat heart rhythm disorders known as cardiac arrhythmias.

"An Arrhythmia is an abnormal rhythm of the heart and is caused by problems with your heart's electrical system. The electrical impulses may happen too fast, too slowly, or erratically - causing the heart to beat too fast, too slowly, or erratically. There are two basic kinds of arrhythmias. Bradycardia is when the heart rate is too slow - less than 60 beats per minute. Tachycardia is when the heart rate is too fast - more than 100 beats per minute." -Heart.org

Here is a pretty sweet video of what an arrhythmia looks like.

Although broken down in two basic types of arrhythmias, these two categories break down into further types of arrhythmias.

Arrhythmias can be extremely dangerous; they can lead to stroke and cardiac arrest.

I have multiple types of arrhythmias: supraventricular (SVT), bradycardia, ventricular tachycardia(Vtach) and ventricular fibrillation. Getting an ICD was not an easy decision, and it came after many other methods were attempted to correct the arrhythmias. I'm going to share some tips I have for living with this cardiac disorder, and an ICD.

Please note: I am NOT a medical processional, just a nerd sharing my experiences and how I manage living with cardiac arrhythmia disorders. It is what has helped me. It is important for one to always remain proactive in maintaining/obtaining one's own optimal health, meaning listening to the body, educating oneself, assessing treatment options and modalities (including health care professionals), and doing what one feels is the best option for them.

Step 1: What Do Arrhythmias Feel Like?

While I do not consider arrhythmias painful, they can be quite uncomfortable, a bit frightening, and produce symptoms that are rather unpleasant.

Common symptoms: chest pressure/discomfort (angina), heart pounding sensation (palpitations), and lack of oxygen/shortness of breath (dyspnea). Think of when you hold your breath, and oxygen isn't getting to your brain. My vision gets spotty (sometimes totally going black), and legs, arms, and chest go numb. Syncope (fainting) is another common symptom. This can be extremely dangerous, and for this reason, I do not drive.

Step 2: Getting an ICD

This is not an easy decision, and for myself, came after other attempts at treatment had been exhausted. (And sometimes, one does not have a choice).

My electrophysiologists (EPs) had prescribed various anti-arrhythmatic medications (namely beta-blockers), and I have had four attempted radio frequency catheter ablations. A radio frequency catheter ablation is when the EPs guide catheters through veins and into the heart, and use radiofrenquency energy to destroy the tiny area of heart tissue that causes the irregular/fast heartbeats. The ablations were not successful because the locations of origin of my arrhythmias are very sporadic and random; my current EP theorizes that I do not have any one single location that they originate from.

An ICD is not cure, and does not prevent arrhythmias; when it detects an abnormal rhythm, the ICD treats the heart with electric therapy to restore a normal rhythm. The ICD consists of a generator, and leads. The number of leads depends on what type of therapies are delivered. Single chamber ICDs have one lead, which enters the heart thru the ventricles, while dual chamber ICDs have two, the additional lead entering thru the atrium.

I wasn't too excited about having the ICD placed, but I am immensely grateful for it; I think of it as a safeguard. Over risk of stroke or cardiac arrest, I'll take the ICD.

Step 3: Assimilation

Having an ICD implanted usually means a couple of days in the hospital. The procedure takes about 3 hours. An ICD ID card (I always have it in my wallet) that has the ICD serial number, implant date, EP's name/contact info, ect., an ICD "guide book," and instructions for recovery and after care are provided.

Mobility and range of motion of the left arm is limited for several weeks. I was given band/type thing to wear around my torso and left arm, pinning it down to my side, to keep from accidentally overusing.

Ice packs, ibuprofen, and mindfulness helped immensely during this time.

Step 4: Adjusting to Life With the ICD

Having the ICD deliver treatment for the first time can be intense, and a little overwhelming.

Different cardiac rhythm devices deliver different therapies: pacing (to maintain a healthy heart rate), cardioversion (electric current given at a specific point in the cardiac rhythm cycle, correcting the electrical conduction), and defibrillation (a shock, not given at a specific cardiac rhythm moment, that corrects the arrhythmia by depolarizing the heart muscle).

I have only (thankfully) been defibrillated twice. Definitely feels like an intense electrical shock going through the whole body.

Cardioversion treatment is what I experience most often. It's a strange sensation; it feels like there is a second heartbeat, trying to guide my own to it's natural rhythm. There's also dizziness and chest pressure, followed by immense gratitude that the device works ;)

The pacing function is for bradycardia, when the heart is not pumping fast enough. This also feels like having two heartbeats, but is not as intense as cardioversion.

The ICD is constantly monitoring, and records every arrhythmia regardless of whether or not treatment is delivered (some of mine are rather short and do not require pacing before they self-terminate).

I receive ICD checkups every three months. A device technician extracts the information from the ICD through a special computer the communicates with the ICD. It shows the number and types of arrhythmias, date and time of when they occurred, the duration, what type of treatment was used... it's kind of neat to see the graphical representation of how the ICD treats :) The EP can also make adjustments to the programming of the ICD using this computer.

There is also an option to send ICD data to the EPs/cardiology clinics via a machine kind of like a fax machine (above).

Step 5: Adjusting to Life With an ICD Continued

Having an ICD does mean some physical limitations, ranging from exercise to travel.

Intense cardio workouts are not usually possible, and the range of motion of the left arm needs to be considered. Light-moderate aerobics (some of my favorite are Leslie Sansone's Walk At Home DVDs), ellipticals, jogging/speed walking are good if one needs some cardio (or biking too, probably, if you're more coordinated than myself ;). My favorite, however, is yoga asana <3

I find myself to be rather protective of my upper left chest, especially in crowds (concerts, malls), and it can help to have a cushioned seat belt strap cover.

**I should take a moment to note, one of the leads in my first ICD fractured. When my EP went in to do the lead extraction process, he replaced the generator as well.

Electronic devices and magnet: these can/will interfere with the ICD. No cell phone on the left ear. No headphones dangling around the chest. Keep things such as computers, hair dryers, mp3 players, ect. at least 6 inches away from the area of the ICD. Once upon a time, ICDs were not MRI compatible, but newer models are.

Here's an article on devices that could interfere with ICDs.

Travel. With airport security being pretty tight, this is a little intimidating, but notifying the security personal that you have a medical condition and would like assistance (aka a chance to explain/prove that you have an ICD by presenting the ICD ID card) and let them decide what to do (at the DIA I've had to walk thru something I call the "wind tunnel," not sure what it is, at smaller airports I've had pat-downs).

Step 6: Final Notes...

TAKE CARE OF YOURSELF <3

Eat healthy. I've been lectured about keeping my caffeine level low (which for the most part I do... a little hard if you love coffee). Energy drinks are not a smart choice in my experience. I have also been cautioned to watch my intake of artificial sweeteners.

Exercise, even if you can't quite do activities you once loved. Walking about two miles a day is great.

Yoga has been instrumental in my quality of life; the asana as well as meditation and sadhana (spiritual practices) help me to stay present and grateful; living with appreciation, awareness, and gratitude helps keep the fear away, and my focus on the brighter things in life.

Remember to take caution with certain medications (and substances... including but not limited to alcohol), and this includes over the counter medications. Antihistamines and certain cold medications, for example, have about the same effect on me as do energy drinks... I made each of those mistakes only once. A great alternative that has worked well for my allergies is nasya, an Ayurvedic medicated nasal oil.

Good sleep is always good- unfortunately not so attainable for many of us. I find Yoga Nidra to be extremely helpful; plenty of free resources (including practices) available, simple as searching "yoga nidra" on YouTube.

Try to keep emotional stress levels down... yes, WAY easier said than done. Turn to hobbies, crafts, music, a good TV show or movie... and sometimes, when energy is down, find something that inspires you... like awesome pets, Star Trek or Instructables ;)