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!

Labor Day Weekend Hike

I apologize for having such a random posting schedule... Life has certainly been hectic these last weeks. Between midterms and studying for my final, getting my research sorted, and moving apartments, things still won't be all sorted out until at least September 12!

First off, I hope you all had an amazing Labor Day Weekend! On Saturday my friends and I decided to go on a Labor Day Weekend hike to Sturtevant Falls, a place we found online with amazing waterfall pictures. I thought it'd be a perfect little opportunity to share a blog post about the trip.

So I picked up my friends a little after noon, and we set off to Angeles National Forest, about an hour and 15 min drive away where the falls were located. We had to drive about 3 miles up an incredibly windy road to get to the parking lot, and it was my first time being the driver since usually I make my dad or sister drive when we have to go through mountains to get to the beach or something, so it was super scary! The tiny little railing brought little comfort, but we managed to make it to the parking lot alive. Another thing to mention, because who knows why, we all decided to literally go during the hottest part of the day.... but after buying our parking pass and getting situated, we set off on the hike.

Luckily, the beginning of the hike is all downhill, but that only meant the way back was going to be killer. I tried to stick to the shade as much as possible, and as we went farther down the mountain there were more trees and shade. Sturtevant Falls was about a 2 mile hike from where we parked, and the plan was to eat our packed sandwiches at the falls.

Beginning view of the hike!

Being one with nature.

After about an hour and half since we took a couple breaks here and there, we finally arrived at the waterfall! It was actually good for me since the friends that I was with had a tendency to walk SUPER slow so I didn't have to exert my heart in any way. Unfortunately, to our utter dismay, the waterfall was just a trickle of water from the California drought!! ):

The "waterfall". Nothing like the pictures we found online... lol 

My friends and I! :) 

After finishing our lunches and enjoying the nature, we all decided to climb to the top of the waterfall. Originally I wasn't planning on it and the boys went ahead, but curiosity overtook me and I really wanted to see what was up there. The climb was extremely steep and I'm still shocked I made it, but I'm glad I did! There ended up being another trail at the top of the waterfall, and we decided to take the trail back to the parking lot.

View from the top of the waterfall

As we predicted, the uphill hike back was certainly a struggle. But we definitely made it back faster than it took to get to the waterfall, and we finished the day off with driving to Honey Boba for some milk tea, and grabbing dinner at Grill'em All, a burger place that was on the way back to UCLA.
Overall, it was a pretty fun day and a cool adventure with my friends!

My Day at the MTV VMAs

Hello everybody! Finally a blog post about a general experience living in LA! :) So yesterday I had the opportunity of attending the MTV VMAs Red Carpet Pre-Show, courtesy of winning tickets from a fan site. I was allowed to bring one other person, so I brought one of my best friends Amanda, and later on I found out another one of my friends at UCLA also won a pair of tickets, so we all went together! 

Our day started at 11:30AM, when we all got into my car and drove to The Forum, which was around 30 minutes away from UCLA and our check-in time was at 12:30pm. Upon arriving, we quickly got in line for Priority Red Carpet fans (which was already super long by the way!) and eventually made our way to the front to receive our wristbands. After about another 40 minutes of waiting, we were finally escorted to the venue and were placed in these bleachers surrounding the red carpet in the blazing hot sun! But here are some pictures:

Panorama of my view from my seat at the VMAs Red Carpet

A picture of my friends and I while we were waiting!

Selfie time :)

Amanda and I!

Finally, after another 2-3 hours of waiting, the people in charge finally spoke to all the fans about what was going on. Even though to our right was the Fifth Harmony stage where they would perform during the red carpet, they were apparently going to enter OUR bleacher and perform a part of their song right next to us!! That information definitely put all of the people in my bleacher in an excited mood, and at around 4:30pm, stars officially began to arrive. Here are a few that I got to see:

5 Seconds of summer being interviewed right in front of me!

Sarah Hyland from Modern Family! 

SAM SMITH, one of my favorite artists! 

ED SHEERAN, another of my favorites! 

My only shot of Taylor Swift... walking away.. :( 

Miley Cyrus! 

Katy Perry! 

And last but not least... QUEEN BEYONCE. WE WERE ON THE WRONG SIDE OF THE BLEACHERS :'(

Beyonce was the last celebrity to arrive, and it was heartbreaking. The people on the other side of the red carpet were able to touch her hand and she did not come to our side. At least we were able to be in her vicinity...
So after that long day of standing and sitting and waiting in the hot sun, our feet were hurting and our stomachs growling, we decided to skip out on the Maroon 5 concert which wouldn't have performed for another hour, and left back to my car at 7:00pm to go and get some food. Overall, even though it was a really fun and great experience as it was my first time at the red carpet of an awards show, I was really disappointed we were not able to be level with the celebrities to get pictures with them like how I expected :( I was actually seat filler for the MTV Movie Awards back in Spring quarter, and I'd have to say seat filler was definitely more worth it. I don't know if I would do this again, and in fact my feet still hurt even though it's been a day!
But to wrap it all up, here's a picture of my friends and I on TV with Fifth Harmony:

Top right corner -- that's me! I'M ON TV!

Anyways, I hope you enjoyed this type of blog post, and please let me know if you want to have more little blog posts here and there about general day experiences :)

*I apologize for the poor quality in photos, we were only allowed our iPhones!

Adjustments and Patience

So sorry for the blog post delay, my midterm for the summer class I'm currently taking at UCLA happened to be yesterday! I should have realized that before I promised to post every Wednesday... whoops.

Today I want to go into more detail of the beginning stages after being diagnosed with heart disease, since I know that is the hardest to deal with--for both families and the actual person diagnosed. I was lucky and my doctors/nurse practitioners were extremely informative, and my parents also did a lot of research during the first few months, but there are still some things I wish I would have known. Added to the fact that I was extremely fortunate to not experience as much of the normal symptoms, my experience wasn't as bad as it could have been but I would like to share as much as I know to try and help anyone who is looking for information or ways to support someone who is going through this drastic change in their life.

It seems that I never actually addressed this directly, but a big part of the reason I was constantly tired and had low energy levels throughout 8th grade/high school were because of my medications. It took a while for my body to get used to it and my doctors were constantly changing doses and adding/taking away medications when trying to deal with every new occurrence that happened or just trying to have the best treatment plan for me possible. As someone who just came out of a competitive sport, this aspect was definitely not something I expected/was ready for. This is why I cannot stress enough, please don't give in and crawl in bed, but try and fight the tiredness by taking a walk outside, maybe just for 15 minutes and then increasing it by increments the next day. Most of the time I was just too lazy to be active and if I tried harder in high school to train my body, eat healthier, and help make it stronger, I feel that I could have lessened the side-effects of my medications, as I do now in college.

Another thing that took me time to get used to was how it affected the people around me and how people responded to knowledge of my condition. There were a lot of questions from everyone, especially my friends on the swim team who obviously noticed that I have stopped swimming. As I've mentioned before, people at school asked me why I did not participate in P.E., and while I told majority of them, "I'm sick," I did tell some people, "I have heart disease." Of course, you can't expect much from 8th graders, but there were a couple of people who said, "wow, you're so lucky, you can skip out of P.E.!!" Actually, even to this day when some people learn about some of the accommodations I receive because of my disability, I get the occasional insensitive, "wow, so lucky!" NO, I am NOT lucky to have heart disease, did you actually think I asked for it?! I know now to not react to their ignorance, but in the beginning I was extremely bitter about my situation and it definitely did not help that people were actually wishing they were in my spot (figuratively). So I guess, please be aware you/your child will receive a lot of questions from people and will most likely receive some of these type of responses from people; and if you are someone who is looking for ways to support someone who has just been diagnosed, be as understanding and sympathetic as possible (and don't pity them!! I hated being pitied.. haha)

Another adjustment that I'd like for people to know is something that could either go one of two ways-- when the person who's just been diagnosed is always thinking "oh yeah, I can do that," or "no, I don't think I can do that." Of course, the second way is much safer and eliminates any possibility of danger or anything, it can also be extremely halting of living your life. I, unfortunately, fall into the category of "oh yeah, I can do that" and caused me to learn my lessons the hard way. Too often do I think that I can do everything else my friends can do, especially at my age where the last thing you want to do is be left out. Although my rock climbing experience is somewhat in the middle of the "oh yeah, I can do that" category, as I'm sure my parents and I really didn't expect me to not be able to do it because it wasn't legit rock climbing, just those fun, easy, pretend rock climbing things at amusement parks and such, my real experiences of thinking "oh yeah, I can do that" happened during college. For example, freshman year I went out to parties and may have had the teeniest sips of alcohol, not wanting to miss out on all the fun with my friends, and it was actually at a party that I had one of my cardiac arrests. Ever since freshman year, I have stayed away from alcohol or anything potentially toxic for my body. Of course, it always sucks being the only sober one at parties but I've gotten used to it and besides, as according to my sophomore year, I barely go to any parties anymore. I guess what I'm trying to say is that even though it might take a while to figure out all these new limitations to your life, please don't let it make you stay at home and be too scared to do anything, but of course, it is always better to be safe than sorry.

Last but not least-- the future. When I was first diagnosed, I really didn't know what to expect for my future. During the first few months, since there was the possibility that my condition was acute, I thought I would be better after a year, but when I wasn't getting any better, that's when I didn't know how to react. I was never going to be able to complete my dream of becoming an Olympic swimmer, so what was in store for me? If I told my freshman year of high school-self that I would be attending UCLA right now, living my dream in LA, meeting all these celebrities at red carpet events and making amazing friends that I even went on a spring-break trip with, I wouldn't believe myself. There are so many happy stories out there for people with DCM, but there are also many sad stories. I think my best advice for that is to just focus on your own story. Surround yourself with support and love from family and friends, and make sure that you are receiving excellent care from doctors you trust and agree with.

On that note, I am going to end my blog post here but this Sunday I will be attending the red carpet-pre show of the Video Music Awards!! :) I will probably put out a blog post for that, so stay tuned! I'm so so so so excited, and one thing you should know about me is that I am obsessed with celebrities hahaha.

The Social Aspect

Hello everyone! First off, I would like to say that I am going to try and update this blog every Wednesday from now on, but that might change to every Friday later. It also depends on when my midterms/finals are, but I will do my best :)

So, although I feel that I have many things to share about my life living with heart disease and how it has effected me, I struggled to figure out what to write this week. I think I will try to write about the "social" aspect of it, and how it has played a role in my social life.

As my dad likes to constantly remind me, no matter how much I wish it weren't so, I am not a "normal teenager." Many parts of my life are actually as normal as can be, which is obviously the goal for people living with chronic illness and the goal of my doctors with my treatment plan--for me to live a life as normal as possible. However, I always have to make sure that I am not over-exerting myself and doing anything that might cause my heart to have irregular rhythms. Because I have a hidden disability, I have the privilege of hiding my illness when I meet new people and introduce myself to others, and I get to, for the most part, decide who knows about my heart disease or not.

Starting college was the first time I finally experienced how my illness effected me socially. In high school, all my friends and majority of people knew about my heart disease, which makes sense since I did miss a lot of school. However, in college, I was starting a new blank page. Of course I wasn't going to go around and tell everybody I met that "Oh, by the way, I have heart disease" but I was faced with the decisions: Who do I tell? Who can I trust? How will they react? My parents have always told me to hide it as much as possible, and only tell people who need to know-- for example, my roommate, and my RA. I guess they are scared of people reacting badly and will somehow use it against me, but what I have come to learn is that people--my friends--are usually understanding and compassionate. Although it is awkward at first to bring it up in conversation, I made new close friends in college and shared with them the hidden side of me. When we would go out and have to climb the horrible hills at UCLA, they would stop and ask to make sure that I was okay and not too tired or that I was not exerting myself too much. As I have mentioned before, I was extremely lucky and managed to be paired with roommates who were so understanding and kind that they even stayed at the hospital over night with me while I waited for my mom to fly down and be with me. My friends all visited me while I was in the hospital during my freshman year of college, bearing generous "Get well soon" gifts and presents. Even for my spring break camping trip last March, it was definitely difficult to complete so much hiking and activity but I had a friend who stayed back with me at my pace and I was able to have a very enjoyable time despite the fact that I could not keep up with the rest of the group without over-exerting myself.
I guess what I'm trying to say, is don't be scared of letting your child live as normal a life as possible, because there will always be people and friends who will help guide their way and look out for them. I know my own limits, and even if I sometimes think, "Oh, maybe I can do it" there is usually a friend by my side who asks, "Are you sure?" and I would reconsider and not do it. I don't go out as much as my friends do, and I don't drink at parties. I can't go on roller coasters or go skydiving, and at concerts I have to be far enough away from the speakers so the bass does not vibrate my chest/heart. I get tired faster than a normal person, and there are times when no matter how hard I try to keep up with my friends to not miss out as much as possible, I have to stop and rest/recuperate or else I start to feel a lot of irregular rhythms in my heart.

However, despite all these limitations, and with the help of my amazing friends + support group, I try my best to not let my heart disease define my life or who I am. I try my best to live my life to the fullest, but always to be aware of my limits and that of course, I am not a completely "normal teenager."

A picture of my best friends and I that I have made at UCLA :)