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.
Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts
Friday, August 22, 2014
Wednesday, August 13, 2014
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."
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."
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| A picture of my best friends and I that I have made at UCLA :) |
Wednesday, July 30, 2014
Living the Healthy Choice
Now that you know a little more about me, let's start with something that I've been feeling really strongly about and that I feel that has contributed greatly to my current stability: eating healthy and being as active as possible! I know that everyone's activity/exercise restrictions or capabilities are different, so I will mainly be focusing on the benefits of changing my diet.
All my life I have been blessed with a fast metabolism, so after I stopped all exercise after my diagnosis I stayed pretty skinny, but in no way did that make me anywhere near to being "fit" or "healthy". My energy levels were constantly low throughout high school and I generally always felt tired and in need of naps. In fact, I'm pretty sure every day after high school I would come home and take a nap. However, because my mom is a strong believer in a well-balanced diet, I always did have a decent amount of vegetables and fruit in my diet, so I definitely wasn't the unhealthiest person on the planet. I probably was the pickiest eater though (don't get me wrong, I still am)! I hated wheat bread, I hated bananas, I hated the majority of vegetables, and when faced with options, I'd always pick the unhealthier, "tastier" choice. I'm pretty sure I ate a lot of chips and junk food every day or whenever I felt like it, and no matter how much my sister, who is studying nutrition in college, or my mom urged me to eat healthier, I paid no attention. It wasn't until I started college that I realized how much I needed to change my diet.
Being at UCLA has definitely been a blessing. Ranked one of the best in the nation for our dining hall food, there was always a plethora of opportunities to choose the healthy choice. Being around people who ate healthy and sick of feeling tired and weak all the time, I decided it was time to live the healthy choice. I started by making the switch from white bread to wheat bread, from pizzas to salads, and from Frosted Flakes cereal to Special K with strawberries. I made myself suck it up and eat things that I would have never done before, such as oatmeal, spinach, kale, and beets, and I basically cut off junk food from my diet. It was definitely tough in the beginning, but eventually I felt my energy levels increasing and I felt so much better physically and mentally. I did some yoga during the winter quarter of my freshman year, and I began going to the gym five times a week for an hour. By the end of the school year, my energy levels were great and I felt amazing and as healthy as I could be. In fact, I was healthy enough to travel Europe that following summer of 2013 with my family, and just this past March, I was well enough to go on a camping trip with a bunch of my friends for spring break!
Nutrition and diet plays a huge role in helping our hearts and bodies function at the best they can be, and if I was able to have any advice when I was first diagnosed with heart disease, it would have been to change my diet, exercise lightly, and live the healthy choice. Junk food every now and then is definitely not going to hurt you, but as long as you eat it in moderation and balance them with healthy meals, you should be fine. If you are in my situation or know anyone with heart disease, I really strongly encourage healthy eating and as much exercise as possible to help you feel the best you can. Even daily 30-minute walks to go along with eating healthy is a great step in the right direction!
Disclaimer: I am in no means a nutritionist or a dietitian, so if you would like full advice on how to change your diet and balance your nutrition, please seek one out. I am just speaking from personal experience! If you would like me to post some examples of some meals that I eat, feel free to let me know :) In fact, if you would love for some ideas to get you started, you can check out my sister's blog here!
All my life I have been blessed with a fast metabolism, so after I stopped all exercise after my diagnosis I stayed pretty skinny, but in no way did that make me anywhere near to being "fit" or "healthy". My energy levels were constantly low throughout high school and I generally always felt tired and in need of naps. In fact, I'm pretty sure every day after high school I would come home and take a nap. However, because my mom is a strong believer in a well-balanced diet, I always did have a decent amount of vegetables and fruit in my diet, so I definitely wasn't the unhealthiest person on the planet. I probably was the pickiest eater though (don't get me wrong, I still am)! I hated wheat bread, I hated bananas, I hated the majority of vegetables, and when faced with options, I'd always pick the unhealthier, "tastier" choice. I'm pretty sure I ate a lot of chips and junk food every day or whenever I felt like it, and no matter how much my sister, who is studying nutrition in college, or my mom urged me to eat healthier, I paid no attention. It wasn't until I started college that I realized how much I needed to change my diet.
Being at UCLA has definitely been a blessing. Ranked one of the best in the nation for our dining hall food, there was always a plethora of opportunities to choose the healthy choice. Being around people who ate healthy and sick of feeling tired and weak all the time, I decided it was time to live the healthy choice. I started by making the switch from white bread to wheat bread, from pizzas to salads, and from Frosted Flakes cereal to Special K with strawberries. I made myself suck it up and eat things that I would have never done before, such as oatmeal, spinach, kale, and beets, and I basically cut off junk food from my diet. It was definitely tough in the beginning, but eventually I felt my energy levels increasing and I felt so much better physically and mentally. I did some yoga during the winter quarter of my freshman year, and I began going to the gym five times a week for an hour. By the end of the school year, my energy levels were great and I felt amazing and as healthy as I could be. In fact, I was healthy enough to travel Europe that following summer of 2013 with my family, and just this past March, I was well enough to go on a camping trip with a bunch of my friends for spring break!
Nutrition and diet plays a huge role in helping our hearts and bodies function at the best they can be, and if I was able to have any advice when I was first diagnosed with heart disease, it would have been to change my diet, exercise lightly, and live the healthy choice. Junk food every now and then is definitely not going to hurt you, but as long as you eat it in moderation and balance them with healthy meals, you should be fine. If you are in my situation or know anyone with heart disease, I really strongly encourage healthy eating and as much exercise as possible to help you feel the best you can. Even daily 30-minute walks to go along with eating healthy is a great step in the right direction!
Disclaimer: I am in no means a nutritionist or a dietitian, so if you would like full advice on how to change your diet and balance your nutrition, please seek one out. I am just speaking from personal experience! If you would like me to post some examples of some meals that I eat, feel free to let me know :) In fact, if you would love for some ideas to get you started, you can check out my sister's blog here!
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| A picture from my spring break camping trip with a bunch of my friends back in March! :) |
Thursday, July 24, 2014
College
It's finally time for the last chapter of my story--living with heart disease in college that is 341 miles away from home! If you've just started reading my blog, welcome and refer to my two previous posts "How it all Began" and "High School" for the beginning of my story if you're interested :)
The summer after senior year and right before your freshman year of summer is always one for everyone to remember. You're about to start a new chapter of your life, but before you leave and start "the real world" (which, by the way, isn't even really the "real world" as you'll come to realize, but it's what we all thought as high schoolers) you want to make the most of the little time you have left with your high school friends and family before you all part ways until maybe the holidays, or maybe until the next summer. It's a summer where you finally are free from summer homework (I mean, I think the majority of us were), a summer for adventure, a summer for fun, a summer for memories. While my summer of 2012 was exactly all those things for me, unfortunately, it too was a summer where my health problems would begin again after two years of stability. Although it probably had to do with being nervous/anxious about starting an entire new chapter of my life and on my own for the very first time and with a chronic illness at that, my heart began to develop rhythm problems. My heart function was still very stable, as shown in the results of my echocardiograms, but for some reason I was having problems with the internal electrical system of my heart. I was starting to constantly have PVCs (premature ventricular contractions) which translates to irregular heart beats, and non-sustained VTs (ventricular tachycardia) which are runs of PVCs. I could feel my heart beating irregularly in my chest, and even while I was doing very little activity I could feel myself having VTs. All my doctors could do was try to increase my dosage of my anti-arrhythmic drug before I left for UCLA and would transfer my care over to the UCLA Ronald Reagan hospital.
One of the best things about UCLA and one of the primary reasons I chose to attend there is their amazing medical center and hospital, just down the block from campus. I knew I would be in good hands (UCLA Health System is ranked fifth in the country and first in California according to U.S. news and World Report!) and on the morning before moving in to my dorm, my parents and I met with a pediatric cardiologist and pediatric electrophysiologist to set up the transfer of my care since, much to my chagrin, I was still 17. Upon moving in to my dorm, my dad had to set up my carelink to the telephone line, which is a device that reads my ICD and receives and sends information about my heart rhythm to the hospital. After helping me settle in and then bidding our goodbyes, I was finally alone, ready to begin the next four years of my life in a whole new environment.
I was luckily blessed with a really caring roommate, and after informing her and my RA about my heart condition, I was set to take on my freshman year of college. Unfortunately, UCLA's campus is essentially hills, stairs, and more hills, and during the first month I could feel my heart have more and more VTs as I climbed the hill leading up to my dorm every day. Finally, my electrophysiologist at UCLA in conjunction with my health care team at Stanford suggested that I get an endocardial VT ablation to try and treat my arrhythmias. The surgery would use heat to destroy abnormal scar tissue in my heart in the hopes of reducing irregular heart rhythms and helping the electrical function of my heart muscle. My doctors decided it would be best for me to get the procedure done in Stanford, so in the middle of October, about a month and a half into college, I flew back home and had the procedure. I think I stayed in the hospital for about a day and a half for recovery, and a day later I flew back to LA to return to school after skipping about three days of school.
After that ablation, my VT decreased, but minimally. The following month in November, while I was at a party, I fainted to the ground and had a cardiac arrest. My ICD had to shock me back to consciousness and I ended up having to stay at Cedar Sinai Hospital overnight, but one of my friends who was with me at the time stayed with me so I wouldn't have to be alone. And then just my luck, during Thanksgiving break which I spent in LA with my family + cousins, I caught the flu. I came back the following Sunday night to UCLA to start school again, and the next day while I was taking a nap since I was still very sick, I woke up to my heart in VT and the next thing I knew I blacked out and when I came to, my chest was buzzing and I knew my ICD had just fired. In tears, I called my roommate and eventually I was taken to the ER at Ronald Reagan Hospital, and my roommate was so kind that she also stayed with me overnight, sleeping on an armchair beside my bed until my mom flew down from the Bay to come stay with me. My doctors at UCLA then suggested for me to receive another VT ablation, this time to target scar tissue on the outside of my heart rather than the inside. Because this is a relatively new procedure and UCLA is known for perfecting it, we scheduled my epicardial ablation at UCLA Ronald Reagan Hospital on December 20th. I stayed in the hospital for about a week, and since I was behind in my classes and already under a lot of stress, I was able to delay all my Fall quarter finals until the next quarter in January. I stayed at UCLA for another week and a half after being released from the hospital, trying my best to attend classes and catch up as much as possible on the material. Unfortunately, during that period I was still barely recovering from the flu and it was basically a waiting game until my ablation procedure, and sometimes my VT would be so bad that I could barely walk. My appetite was gone from being sick and I think I lost about 10 pounds during those weeks. My ICD had to pace me out of several long periods of irregular heart rhythms, and every day it was a struggle. I even spent my 18th birthday with as minimal activity as possible to avoid any irregular heart beats! However, the new friends I made at UCLA and my roommate were so understanding and helpful that they brought me food to my dorm when I was feeling too sick to walk to the dining hall and brought me notes from class and turned in my assignments for me. After staying for the last week of the quarter to make sure I learned all the material for when I took the final next quarter, I flew home back to the Bay from LAX at the beginning of finals week, which was December 8th.
My family and I then drove back down to LA for my procedure. I remember being extremely nervous the night before, knowing after the surgery my throat would be in excruciating pain from the breathing tube. What I was not prepared for was the extraordinary amount of pain in my chest after the procedure. Luckily, the procedure was a success and my electrophysiologist succeeded in eliminating some scar tissue they found on the outside surface of my heart, and it was even the first time he had done this type of procedure on an 18 year old. Unfortunately, the pain was so great I ended up staying in the hospital for four days (with my mom, of course) rather than the usual 1-2 release days, and barely made it back to Silicon Valley by flight in time for Christmas. The pain in my chest ended up lasting for about two more weeks, and I spent the rest of my winter break resting on my couch trying not to move and studying for my fall quarter finals, which I would be taking the week I got back to school.
After that second ablation, things were looking up. I no longer had any VTs and my PVCs, or irregular heart beats, were relatively minimal. I continued on with my life at UCLA, but it seemed my luck ran out in two months. At the end of February 2013, I was starting to feel ill again, and I could feel my heart fluttering like crazy. I ended up spending the entire day in bed, hoping to sleep it off and that the irregular rhythm would go away. The next morning my heart was still feeling "not normal", and I called my dad asking him what to do. To my horror, while I was on the phone with him, my ICD fired in my chest as I was still conscious. Quickly, my new roommate (my old roommate moved to live with her friend, but to this day we are still really good friends!) called 911 and tried her best to comfort me as we waited for the paramedics to arrive. This was, honestly, one of the worse times of my life. My heart was still in VT, and my ICD fired about 3 more times trying, but failing, to shock my heart rhythm back to normal until the paramedics finally arrived. They got me into a stretcher and wheeled me to the ambulance to drive me down the street to the ER, but during the entire time my ICD kept on firing as my heart was still in ventricular tachycardia. Each shock was so much pain, and every time it felt like I was getting shot in my chest. When I finally arrived in the ER the doctors gave me anti-arrythmics through an IV, and my heart eventually went back to normal rhythm. In total, my ICD had shocked me 18 times, and I had what is called a "VT storm", which is the occurrence of three or more distinct episodes of VT (I believe my VT lasted for around 25 minutes).
My new roommate ended up staying with me in the ER (I know, I am so thankful that I ended up with such caring roommates) overnight until my mom flew in from the bay area, and I ended up staying in the hospital for a week. My doctors informed us that apparently, because of the amiodarone, which was the anti-arrythmic drug I was taking, one of its side effects is to cause thyroid disfunction, and in my case it gave me hyperthyroidism. That, in turn, caused the VT storm. I was immediately put on thyroid medication and I wasn't released from the hospital until my levels reached the normal range. Ironically, again, I was in the hospital about two weeks from finals week, but it was such a hassle last time to reschedule all my finals that I was determined to take them at their scheduled times. I spent my week at the hospital studying (as usual) but my amazing friends at UCLA all visited me during the week and gave me so many wonderful "get well soon" gifts. After being released from the hospital, I finished up the rest of my winter quarter and went home for spring break for a much needed break.
The rest of my freshman year at UCLA was peaceful. I had a manageable course-load and just focused on my studies. After what had happened in February, I was put on thyroid medication and taken off amiodarone, replacing it with metropolol. I no longer experienced any VTs, indicating that my epicardial ablation really was successful. During the first couple of months, it was really hard for me to sleep and I became extremely sensitive to my heart beats, especially at night. After an enjoyable summer, I started my sophomore year at UCLA and everything was going well, until about winter quarter when I started to develop intense anxiety. I guess I still had remnants of post-traumatic stress disorder from what had happened back in February, and I never fully dealt with it. I was extremely difficult for me to sleep at night as I would stay up from the beating of my heart, imagining that it was irregular and in VT. Since then, I have seen a therapist and have been doing much better about dealing with my anxiety. The rest of my sophomore year went very smoothly, and I was able to achieve a 4.0 for all three quarters :)
Well, that's all of my medical history! Freshman year in college was definitely one of the hardest years, but since then I have been doing extremely well in regards to my heart condition. I am still taking thyroid medications to deal with my thyroid problem, but other than that everything has stabilized. Although I am planning on making a separate post about this, at the end of Freshman year I switched to a healthy lifestyle with healthy eating and started exercising daily, which has made me stronger and feeling better than ever before. I am now able to run 3 miles in 30 minutes on the treadmill, something I never had done since middle school before my heart condition, but my determination and dedication to eating right and going to the gym has allowed me to be in the best shape I can be. I still swim every now and then for exercise, so it feels great to be back in the water. I hope you have enjoyed reading my story and will continue to hear more about my experiences and adventures as a teenager with heart disease, as I have much more to share! :)
The summer after senior year and right before your freshman year of summer is always one for everyone to remember. You're about to start a new chapter of your life, but before you leave and start "the real world" (which, by the way, isn't even really the "real world" as you'll come to realize, but it's what we all thought as high schoolers) you want to make the most of the little time you have left with your high school friends and family before you all part ways until maybe the holidays, or maybe until the next summer. It's a summer where you finally are free from summer homework (I mean, I think the majority of us were), a summer for adventure, a summer for fun, a summer for memories. While my summer of 2012 was exactly all those things for me, unfortunately, it too was a summer where my health problems would begin again after two years of stability. Although it probably had to do with being nervous/anxious about starting an entire new chapter of my life and on my own for the very first time and with a chronic illness at that, my heart began to develop rhythm problems. My heart function was still very stable, as shown in the results of my echocardiograms, but for some reason I was having problems with the internal electrical system of my heart. I was starting to constantly have PVCs (premature ventricular contractions) which translates to irregular heart beats, and non-sustained VTs (ventricular tachycardia) which are runs of PVCs. I could feel my heart beating irregularly in my chest, and even while I was doing very little activity I could feel myself having VTs. All my doctors could do was try to increase my dosage of my anti-arrhythmic drug before I left for UCLA and would transfer my care over to the UCLA Ronald Reagan hospital.
One of the best things about UCLA and one of the primary reasons I chose to attend there is their amazing medical center and hospital, just down the block from campus. I knew I would be in good hands (UCLA Health System is ranked fifth in the country and first in California according to U.S. news and World Report!) and on the morning before moving in to my dorm, my parents and I met with a pediatric cardiologist and pediatric electrophysiologist to set up the transfer of my care since, much to my chagrin, I was still 17. Upon moving in to my dorm, my dad had to set up my carelink to the telephone line, which is a device that reads my ICD and receives and sends information about my heart rhythm to the hospital. After helping me settle in and then bidding our goodbyes, I was finally alone, ready to begin the next four years of my life in a whole new environment.
I was luckily blessed with a really caring roommate, and after informing her and my RA about my heart condition, I was set to take on my freshman year of college. Unfortunately, UCLA's campus is essentially hills, stairs, and more hills, and during the first month I could feel my heart have more and more VTs as I climbed the hill leading up to my dorm every day. Finally, my electrophysiologist at UCLA in conjunction with my health care team at Stanford suggested that I get an endocardial VT ablation to try and treat my arrhythmias. The surgery would use heat to destroy abnormal scar tissue in my heart in the hopes of reducing irregular heart rhythms and helping the electrical function of my heart muscle. My doctors decided it would be best for me to get the procedure done in Stanford, so in the middle of October, about a month and a half into college, I flew back home and had the procedure. I think I stayed in the hospital for about a day and a half for recovery, and a day later I flew back to LA to return to school after skipping about three days of school.
After that ablation, my VT decreased, but minimally. The following month in November, while I was at a party, I fainted to the ground and had a cardiac arrest. My ICD had to shock me back to consciousness and I ended up having to stay at Cedar Sinai Hospital overnight, but one of my friends who was with me at the time stayed with me so I wouldn't have to be alone. And then just my luck, during Thanksgiving break which I spent in LA with my family + cousins, I caught the flu. I came back the following Sunday night to UCLA to start school again, and the next day while I was taking a nap since I was still very sick, I woke up to my heart in VT and the next thing I knew I blacked out and when I came to, my chest was buzzing and I knew my ICD had just fired. In tears, I called my roommate and eventually I was taken to the ER at Ronald Reagan Hospital, and my roommate was so kind that she also stayed with me overnight, sleeping on an armchair beside my bed until my mom flew down from the Bay to come stay with me. My doctors at UCLA then suggested for me to receive another VT ablation, this time to target scar tissue on the outside of my heart rather than the inside. Because this is a relatively new procedure and UCLA is known for perfecting it, we scheduled my epicardial ablation at UCLA Ronald Reagan Hospital on December 20th. I stayed in the hospital for about a week, and since I was behind in my classes and already under a lot of stress, I was able to delay all my Fall quarter finals until the next quarter in January. I stayed at UCLA for another week and a half after being released from the hospital, trying my best to attend classes and catch up as much as possible on the material. Unfortunately, during that period I was still barely recovering from the flu and it was basically a waiting game until my ablation procedure, and sometimes my VT would be so bad that I could barely walk. My appetite was gone from being sick and I think I lost about 10 pounds during those weeks. My ICD had to pace me out of several long periods of irregular heart rhythms, and every day it was a struggle. I even spent my 18th birthday with as minimal activity as possible to avoid any irregular heart beats! However, the new friends I made at UCLA and my roommate were so understanding and helpful that they brought me food to my dorm when I was feeling too sick to walk to the dining hall and brought me notes from class and turned in my assignments for me. After staying for the last week of the quarter to make sure I learned all the material for when I took the final next quarter, I flew home back to the Bay from LAX at the beginning of finals week, which was December 8th.
My family and I then drove back down to LA for my procedure. I remember being extremely nervous the night before, knowing after the surgery my throat would be in excruciating pain from the breathing tube. What I was not prepared for was the extraordinary amount of pain in my chest after the procedure. Luckily, the procedure was a success and my electrophysiologist succeeded in eliminating some scar tissue they found on the outside surface of my heart, and it was even the first time he had done this type of procedure on an 18 year old. Unfortunately, the pain was so great I ended up staying in the hospital for four days (with my mom, of course) rather than the usual 1-2 release days, and barely made it back to Silicon Valley by flight in time for Christmas. The pain in my chest ended up lasting for about two more weeks, and I spent the rest of my winter break resting on my couch trying not to move and studying for my fall quarter finals, which I would be taking the week I got back to school.
After that second ablation, things were looking up. I no longer had any VTs and my PVCs, or irregular heart beats, were relatively minimal. I continued on with my life at UCLA, but it seemed my luck ran out in two months. At the end of February 2013, I was starting to feel ill again, and I could feel my heart fluttering like crazy. I ended up spending the entire day in bed, hoping to sleep it off and that the irregular rhythm would go away. The next morning my heart was still feeling "not normal", and I called my dad asking him what to do. To my horror, while I was on the phone with him, my ICD fired in my chest as I was still conscious. Quickly, my new roommate (my old roommate moved to live with her friend, but to this day we are still really good friends!) called 911 and tried her best to comfort me as we waited for the paramedics to arrive. This was, honestly, one of the worse times of my life. My heart was still in VT, and my ICD fired about 3 more times trying, but failing, to shock my heart rhythm back to normal until the paramedics finally arrived. They got me into a stretcher and wheeled me to the ambulance to drive me down the street to the ER, but during the entire time my ICD kept on firing as my heart was still in ventricular tachycardia. Each shock was so much pain, and every time it felt like I was getting shot in my chest. When I finally arrived in the ER the doctors gave me anti-arrythmics through an IV, and my heart eventually went back to normal rhythm. In total, my ICD had shocked me 18 times, and I had what is called a "VT storm", which is the occurrence of three or more distinct episodes of VT (I believe my VT lasted for around 25 minutes).
My new roommate ended up staying with me in the ER (I know, I am so thankful that I ended up with such caring roommates) overnight until my mom flew in from the bay area, and I ended up staying in the hospital for a week. My doctors informed us that apparently, because of the amiodarone, which was the anti-arrythmic drug I was taking, one of its side effects is to cause thyroid disfunction, and in my case it gave me hyperthyroidism. That, in turn, caused the VT storm. I was immediately put on thyroid medication and I wasn't released from the hospital until my levels reached the normal range. Ironically, again, I was in the hospital about two weeks from finals week, but it was such a hassle last time to reschedule all my finals that I was determined to take them at their scheduled times. I spent my week at the hospital studying (as usual) but my amazing friends at UCLA all visited me during the week and gave me so many wonderful "get well soon" gifts. After being released from the hospital, I finished up the rest of my winter quarter and went home for spring break for a much needed break.
The rest of my freshman year at UCLA was peaceful. I had a manageable course-load and just focused on my studies. After what had happened in February, I was put on thyroid medication and taken off amiodarone, replacing it with metropolol. I no longer experienced any VTs, indicating that my epicardial ablation really was successful. During the first couple of months, it was really hard for me to sleep and I became extremely sensitive to my heart beats, especially at night. After an enjoyable summer, I started my sophomore year at UCLA and everything was going well, until about winter quarter when I started to develop intense anxiety. I guess I still had remnants of post-traumatic stress disorder from what had happened back in February, and I never fully dealt with it. I was extremely difficult for me to sleep at night as I would stay up from the beating of my heart, imagining that it was irregular and in VT. Since then, I have seen a therapist and have been doing much better about dealing with my anxiety. The rest of my sophomore year went very smoothly, and I was able to achieve a 4.0 for all three quarters :)
Well, that's all of my medical history! Freshman year in college was definitely one of the hardest years, but since then I have been doing extremely well in regards to my heart condition. I am still taking thyroid medications to deal with my thyroid problem, but other than that everything has stabilized. Although I am planning on making a separate post about this, at the end of Freshman year I switched to a healthy lifestyle with healthy eating and started exercising daily, which has made me stronger and feeling better than ever before. I am now able to run 3 miles in 30 minutes on the treadmill, something I never had done since middle school before my heart condition, but my determination and dedication to eating right and going to the gym has allowed me to be in the best shape I can be. I still swim every now and then for exercise, so it feels great to be back in the water. I hope you have enjoyed reading my story and will continue to hear more about my experiences and adventures as a teenager with heart disease, as I have much more to share! :)
Friday, July 11, 2014
How it All Began
So originally I was planning on fitting my entire story onto one blog post, but after some reconsideration (with the help of my best friend!) I realized how ridiculously hard/long it would be, so I've decided to split my story into my three stages after my diagnosis: middle school, high school, and now college. Right now I will mainly be trying to write out my timeline, and later I will be releasing more blog posts that addresses particular moments/thoughts in my life in more depth.
Well, I guess the best place to start is from the very beginning, so here it goes:
When I was a small child, I suffered from asthma until the age of 2. After that, life was perfectly fine (health-wise) and at the age of 8, while debating between tap dancing or swimming, I took up competitive swimming. It turns out, swimming was my element. I quickly rose up the ranks in the swimming world, making it to the top of my age group in the Pacific Region, with many thanks to my top-notch swim club, Santa Clara Swim Club. I was awarded "Outstanding Swimmer" for the 10-and-under girls category in the Pacific Region, and I even made it to "Western Zones" (an all-star swim meet that only swimmers who were chosen would be allowed to attend) twice, when I was 10 and 12. To put it in perspective--when I was 12, I competed against Missy Franklin (Olympic swimmer superstar, google her! And yes, she was already amazingly fast at such a young age) in a relay during Western Zones with me swimming for Pacific Coast and her for Colorado! Swimming was my life, and it was my dream to be an Olympian swimmer.
Unfortunately, it all came crashing down about six months after I turned 12. I started getting more and more tired during swim practice, and my performance at swim meets were extremely poor and disappointing. I would get out of breath after about two laps and it was a struggle everyday to swim. Sadly enough, I was known for being a complainer so every time I complained to my coach and parents, they all thought nothing of it. My parents finally took me to the doctor to see what was wrong with me, and we all accounted it as the return of my asthma, as wheezing was one of my symptoms. I was put on asthma medications and inhalers for a number of months, but nothing helped. Finally, after yet another doctor visit, my doctor referred me to a get a lung x-ray (for the presumed asthma) and in the x-ray results, it was noticed that my heart was enlarged! I was then referred to a cardiologist, and the appointment would be a two days after my 13th birthday--which was also a day after what I would not realize until later, my last swim meet.
Meeting with a cardiologist for the first time was a surreal experience. Looking back at it, I think I was relieved to finally find out what was wrong with me and what was making me so slow at swimming, yet I don't think I fully understood the repercussions of the diagnosis. I remember getting my first echocardiogram (which is similar to an ultrasound, except for the heart) that day, and the look of my cardiologist after analyzing the results was very unsettling. Although the memory is quite fuzzy in my mind, she essentially informed my family and I that I had dilated cardiomyopathy, and that my ejection fraction was so low my heart function was classified as "severe". Basically, my heart was doing so poorly that she was shocked that I wasn't currently hospitalized, and the only reason my symptoms were so minimal was because I was a swimmer. Of course, the first question I asked my cardiologist was: "Am I going to die?" and yes, you guessed it, the next: "Will I still be able to swim?" After a "No" to the first question (thank god), soon came the dreaded words, "I'm sorry, but until your heart condition improves, you will not be able to swim for an indefinite time."
I think the year following my diagnosis was not as bad as the second one. Honestly, I don't think I even cried (maybe not until high school, I would say). What really softened the blow was, as cheesy as it sounds--hope. Although my cardiologist told my family not to count on it, there was a possibility that my condition was acute and that after a year, I might be able to make a full recovery, considering my symptoms were already so minimal. I was then put on a number of medications, and was referred to a pediatric cardiologist at the Stanford Lucile Packard Children's Hospital, who took me under his care for the next 5 years until I went to college. Having the privilege to be under the care of one of the best cardiologists in the nation also definitely made me feel a little bit better about my situation and that "everything would be okay."
At school, things did not immediately change. I was in 8th grade back then, and I was immediately withdrawn from P.E. since I was not allowed to perform any physical activity. I only told my close friends (under my parent's directions, to have as little people know as possible) about my situation. I don't think anyone really understood the severity, including me, and in fact, my best friend just told me that she didn't even believe me back then when I told her ahaha. When I was seen not participating in P.E., all my classmates would ask me why and I would just tell them "I'm sick." However, swimming was another story-- I showed up the next day after my diagnosis to watch swim practice and to see my swimming friends, and I had to tell my coach that "I had heart disease and I couldn't swim anymore until I got better." I think in the first couple of months I was just grateful to finally get a break from swimming since I was doing so poorly anyways, but I really missed my swim friends (who were a second family to me) and swimming in general. I think I sometimes attended practice just to watch, but it just sucked so bad that I couldn't join them so eventually I stopped. I went from being one of the fastest swimmers in the nation to an insignificant spectator in the stands.
The rest of my last year in middle school went relatively fine; I think the main thing that was different was that I was taking daily medication for my heart disease. I barely showed any symptoms and I looked like a completely normal person on the outside. I would miss swimming and running (I used to be so fast!) but I always just told myself that "soon I'll get better and life will get back to normal". I had to see my cardiologist pretty frequently, but during the first 6 months after my diagnosis my heart function was slowly and surely improving.
Ok, that's all I have for now and I think that pretty much sums up the first stage of "my life with heart disease". Wow, this post has turned out to be longer than I intended! Anyways, I hope this was a cool way of seeing it from a patient's perspective and I do not in any way speak for anyone else, but this is the beginning stage of how I dealt/reacted after being diagnosed with what would become chronic illness. As I grew older my thoughts and feelings did change, and my next chapter will be about my life during high school (which is, unfortunately, also during the prime stage to be a stupid, rebellious teenager dealing with puberty).
Thanks for reading and feel free to message me for anything else you would like me to share!
Well, I guess the best place to start is from the very beginning, so here it goes:
When I was a small child, I suffered from asthma until the age of 2. After that, life was perfectly fine (health-wise) and at the age of 8, while debating between tap dancing or swimming, I took up competitive swimming. It turns out, swimming was my element. I quickly rose up the ranks in the swimming world, making it to the top of my age group in the Pacific Region, with many thanks to my top-notch swim club, Santa Clara Swim Club. I was awarded "Outstanding Swimmer" for the 10-and-under girls category in the Pacific Region, and I even made it to "Western Zones" (an all-star swim meet that only swimmers who were chosen would be allowed to attend) twice, when I was 10 and 12. To put it in perspective--when I was 12, I competed against Missy Franklin (Olympic swimmer superstar, google her! And yes, she was already amazingly fast at such a young age) in a relay during Western Zones with me swimming for Pacific Coast and her for Colorado! Swimming was my life, and it was my dream to be an Olympian swimmer.
Unfortunately, it all came crashing down about six months after I turned 12. I started getting more and more tired during swim practice, and my performance at swim meets were extremely poor and disappointing. I would get out of breath after about two laps and it was a struggle everyday to swim. Sadly enough, I was known for being a complainer so every time I complained to my coach and parents, they all thought nothing of it. My parents finally took me to the doctor to see what was wrong with me, and we all accounted it as the return of my asthma, as wheezing was one of my symptoms. I was put on asthma medications and inhalers for a number of months, but nothing helped. Finally, after yet another doctor visit, my doctor referred me to a get a lung x-ray (for the presumed asthma) and in the x-ray results, it was noticed that my heart was enlarged! I was then referred to a cardiologist, and the appointment would be a two days after my 13th birthday--which was also a day after what I would not realize until later, my last swim meet.
Meeting with a cardiologist for the first time was a surreal experience. Looking back at it, I think I was relieved to finally find out what was wrong with me and what was making me so slow at swimming, yet I don't think I fully understood the repercussions of the diagnosis. I remember getting my first echocardiogram (which is similar to an ultrasound, except for the heart) that day, and the look of my cardiologist after analyzing the results was very unsettling. Although the memory is quite fuzzy in my mind, she essentially informed my family and I that I had dilated cardiomyopathy, and that my ejection fraction was so low my heart function was classified as "severe". Basically, my heart was doing so poorly that she was shocked that I wasn't currently hospitalized, and the only reason my symptoms were so minimal was because I was a swimmer. Of course, the first question I asked my cardiologist was: "Am I going to die?" and yes, you guessed it, the next: "Will I still be able to swim?" After a "No" to the first question (thank god), soon came the dreaded words, "I'm sorry, but until your heart condition improves, you will not be able to swim for an indefinite time."
I think the year following my diagnosis was not as bad as the second one. Honestly, I don't think I even cried (maybe not until high school, I would say). What really softened the blow was, as cheesy as it sounds--hope. Although my cardiologist told my family not to count on it, there was a possibility that my condition was acute and that after a year, I might be able to make a full recovery, considering my symptoms were already so minimal. I was then put on a number of medications, and was referred to a pediatric cardiologist at the Stanford Lucile Packard Children's Hospital, who took me under his care for the next 5 years until I went to college. Having the privilege to be under the care of one of the best cardiologists in the nation also definitely made me feel a little bit better about my situation and that "everything would be okay."
At school, things did not immediately change. I was in 8th grade back then, and I was immediately withdrawn from P.E. since I was not allowed to perform any physical activity. I only told my close friends (under my parent's directions, to have as little people know as possible) about my situation. I don't think anyone really understood the severity, including me, and in fact, my best friend just told me that she didn't even believe me back then when I told her ahaha. When I was seen not participating in P.E., all my classmates would ask me why and I would just tell them "I'm sick." However, swimming was another story-- I showed up the next day after my diagnosis to watch swim practice and to see my swimming friends, and I had to tell my coach that "I had heart disease and I couldn't swim anymore until I got better." I think in the first couple of months I was just grateful to finally get a break from swimming since I was doing so poorly anyways, but I really missed my swim friends (who were a second family to me) and swimming in general. I think I sometimes attended practice just to watch, but it just sucked so bad that I couldn't join them so eventually I stopped. I went from being one of the fastest swimmers in the nation to an insignificant spectator in the stands.
The rest of my last year in middle school went relatively fine; I think the main thing that was different was that I was taking daily medication for my heart disease. I barely showed any symptoms and I looked like a completely normal person on the outside. I would miss swimming and running (I used to be so fast!) but I always just told myself that "soon I'll get better and life will get back to normal". I had to see my cardiologist pretty frequently, but during the first 6 months after my diagnosis my heart function was slowly and surely improving.
Ok, that's all I have for now and I think that pretty much sums up the first stage of "my life with heart disease". Wow, this post has turned out to be longer than I intended! Anyways, I hope this was a cool way of seeing it from a patient's perspective and I do not in any way speak for anyone else, but this is the beginning stage of how I dealt/reacted after being diagnosed with what would become chronic illness. As I grew older my thoughts and feelings did change, and my next chapter will be about my life during high school (which is, unfortunately, also during the prime stage to be a stupid, rebellious teenager dealing with puberty).
Thanks for reading and feel free to message me for anything else you would like me to share!