My ICD

I am so sorry for the long absence! It was a mixture of writers block and being very busy, but I'm sure you don't want to hear my excuses. Today I would like to share with you all my experience with having an implantable cardioverter defibrillator, or an ICD.

Image from google.

As I have mentioned in my previous post here, I received an ICD in October 2008, during the freshman year of high school. The purpose of an ICD is to use electrical pulses or shocks to help control life-threatening arrhythmias in the ventricles of the heart, especially those that cause sudden cardiac arrests. It’s dual function as both a pacemaker and defibrillator is what makes it so incredibly imperative to have. My ICD was implanted into me after my first sudden cardiac arrest, and to be perfectly honest, it was the second most painful surgery I’ve ever had (my most recent VT ablation is ranked the highest, although that may be because it’s still fresh in my mind compared to the ICD surgery..) I don’t even think my chest hurt the most after the surgery, it was definitely my throat from having the breathing tube in! My family had to feed me ice chips and I couldn’t talk and it hurt to swallow for three to five days. It basically felt like having an extremely sore throat that wouldn’t go away no matter what you did. I wasn’t able to move my left arm without being met with pain, and even when I was finally released from the hospital after the surgery, I had to keep my arm in a sling.

Despite after everything had healed, the scar that was left from my surgery continued to bother me for 6 months. It would be just like a dull throbbing pain, and no matter what I did it never went away. Occasionally, it would even become itchy! My mom tried to put lotion and anti-scar cream and all sorts of other ointments to try and help it, but nothing seemed to work. Eventually, all the pain and sensations stopped and to this day it still hasn’t bothered me anymore.

However, setting the process of obtaining the ICD aside, my ICD is the reason why I am still alive today. I cannot stress how thankful I am to have my ICD, and it has already shocked me back to life about 4 times, not including the VT storm, as I have mentioned in the posts with my complete story. Unfortunately, it is because of that VT storm that I am scared of my ICD, because being shocked while conscious has left such unforgettable pain that I still haven’t quite gotten over. I went through a time period where I was scared to be left alone in case something happened to me and my ICD would go off, and I became incredibly conscious of my heart beat. I know others have gone through/is going through the same thing because interestingly enough, when I go see my electrophysiologist they ask for patients to submit a survey with questions about how they feel about their ICDs/arrhythmia, just like the feelings I had been dealing with the past year. The only thing I wish I could have done differently want seek help earlier instead of telling myself the feeling would go away, and I still think it would be extremely helpful to talk to someone who feels the same way as I do.

If anyone has any other questions about ICDs from a person who actually has one rather than a doctor's point of view, feel free to ask me! Of course if it regards whether you need one/your child needs one then consult with a doctor. I know it may seem that I have a bad experience with my ICD, but I wouldn't change a thing and I am so thankful to have my ICD rather than having to get a heart transplant.

Also, some general things about having an ICD: I can't walk through security monitors (just like people with pacemakers), I generally need to stay away from magnets, I wear a Medic Alert bracelet notifying others about my defibrillator, and I sometimes get questions about my scar but usually my hair covers it!

Integrative Medicine | Eastern and Western Medicine

The current meds I take, shown in a weekly pill organizer

One of the things that I had the hardest time wrapping my head around after my diagnosis was the fact that I would be taking medications for the rest of my life. I know that it is different for others who are born with their disease, but as someone who was not it was definitely a drastic change in my life. In the beginning, my mom gave me my medications that were prescribed by my cardiologists, but about 5 months after my diagnosis, my mom decided it was time to try her hand in Traditional Chinese Medicine. All my life I have grown up drinking Chinese herbs for when I had a cold or upset stomach, so this was nothing new to me. However, in combination with making me drink traditional Chinese herbs (which, to be entirely truthful, tasted utterly disgusting) my mom sent me to an acupuncturist three times a week after school during the end of my 8th grade. I would get dozens of needles pricked into my back for 30 minutes, and as long as I didn't move, it actually wasn't as painful as it looked. I think I tried acupuncture for a total of 2-3 months, but unfortunately it just did not work on me. My heart condition stayed the same (as in, my ejection fraction did not change), and even the herbs did not help me.

All of this was before I started high school, and as you know at the beginning of my freshman year I had my first sudden cardiac arrest, so after that I just stuck to taking my many, many prescribed pills morning and night from my cardiologist. I have heard many success stories from people who tried acupuncture to help their health conditions, but it just happened that my condition could not be helped. I am still glad (somewhat) that I at least tried acupuncture, and of course it made my mom happy. I got into the routine of refilling my own pill organizer once a week rather than my mom doing it for me, and after being grilled every time I visited the doctor's, I had to memorize all my medications and their dosages and even their functions (all thanks to my Stanford nurse practitioner, although in hindsight now I'm very glad she made me learn them)! My parents and sister constantly nag at me with the question, "Did you take your meds?" and although I must admit there are some points that I get extremely annoyed, I know they are only looking out for me and showing their concern. Sometimes I actually do forget until they ask, so I'm glad that they constantly ask me that question.

Now that I'm in college, I have to personally refill my prescriptions at the pharmacy instead of having my parents do it for me like they used to, and I also have a reminder on my iPhone every day morning and night to take my meds, just in case I forget. You would think that something so routine in my life would just come naturally, but there are some days where the only time I remembered was because of the alert on my phone! Although during the first years after my diagnosis I viewed taking my medications as a nuisance, I now see them as a safety blanket, since I know taking them definitely helps maintain my heart disease and prevents me from getting worse. It still is a chore sometimes but I've become so accustomed to it that it's just a part of me. Of course, one day I hope to take less and less pills, but for now I trust my cardiologist and electrophysiologist in how they are handling my health plan and doing what is best for me.

As for my advice to parents: if your child is old enough, start them into the habit of making their own meds and refilling their own prescriptions! And no matter how much they get annoyed at you for constantly asking them, "Did you take your meds?" still do it as much as you can, although it is quite tricky since sometimes I also felt that my parents didn't think I was responsible enough to remember to take my medication everyday. I guess it's better to be safe than sorry, so maybe just secretly check the pill organizer before you ask the question? :)