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! :)
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Thursday, July 24, 2014
Wednesday, July 16, 2014
High School
High school. Just thinking about high school gives me a headache. Don't get me wrong-- I definitely had my fair share of amazing times in high school, but I'll stick to the health-related side of things of my high school career. Four years of my life will definitely be hard to fit into one blog post, but I'll try my best to stick right to the point.
I'd have to say Freshman year was definitely the hardest year for me. It all started going down-hill after two weeks of starting high school. My local community holds a fun Art & Wine Festival at the local park every September, which I usually spend the time volunteering and walking around with my family looking at all the cute vendors scattered around the park. Not only are there "spin-the-wheel" free giveaway booths and booths selling food as fundraisers, there's also another section of the park dedicated for fun things for kids, such as a petting zoo, multiple moonwalks, and even a rock climbing wall. That year I decided to try the rock-climbing wall, after determining that it was within my exertion limits. Unfortunately, to my dad's horror as he looked on, that was the first time I went into cardiac arrest. My heart stopped as I was mid-climb but the harness caught me, and luckily (which to this day I am still so thankful for) there was a paramedic firetruck stationed right across the rock climbing wall as a sort of show-and-tell station for little kids. The paramedics were able to run across to where I was and with the use of an AED (automated external defibrillator) they were able to shock me back to life after a second shock.
The next thing I could remember when I finally returned to consciousness was the beeping of a heart monitor and me on a hospital bed. I was in the pediatric ICU (intensive care unit) of the Stanford Lucile Packard Children's Hospital, and I couldn't remember anything after strapping on into the harness for rock climbing at the festival. My mom had to inform me about everything that happened and that they were so, so scared I suffered brain damage during the time my heart had stopped beating. Apparently I had short-term memory loss for a week and I would constantly ask my mom: "Where's Dad? Where's Emy (my sister)? Where's my phone? Where are my clothes? Why am I here?" (I know, I was so materialistic... ) Even to this day, it's scary to think that a whole week of my life is missing from my memory, although if I'm being completely honest, I usually try to not think about this whole ordeal. It was during this hospital stay that doctors began bringing up the words "heart transplant" and "surgery" and "put her on the list" and as a 13 year old, it was absolutely terrifying. I still remember my head hurting from all the sounds of the crying babies that were on the other sides of the curtains separating patients within the ICU, and my body was so weak from what had happened and the lack of movement that I could only go for walks 3 times a day. Finally, during the second week of my stay at the ICU, a doctor brought to my parents an alternative: to have an ICD implanted instead of getting a heart transplant. An ICD, implanted cardioverter-defibrillator, would be able to shock my heart out of abnormal rhythm or out of cardiac arrest if it were to ever happen again, and it also has a dual function as a pacemaker. We were all so relieved and immediately decided on that option, and my surgery was to be scheduled later that week. Unfortunately, it seemed my good luck had run out because that same week one of my veins in my leg managed to become infected from an IV. The veins on my arms were already all bruised from new IVs everyday since my veins didn't agree with the needles, and the nurse had decided to try a vein in my leg. My whole body was literally pricked and poked at constantly, and I remember being in a lot of pain. That infection set back my surgery for an entire week, but eventually on October 3rd I received my ICD and after two strenuous days of throat pain from the breathing tube stuck down my throat from the surgery, I was released from the hospital.
Overall, I had been in the ICU for about a month. During that time, as crazy as it sounds, I did homework in the hospital to keep up with my school work as the overachiever I am, and I even attended the hospital school that Stanford provided to learn some of my school material. The highlight of my stay was when my friends from middle school organized a trip and all came to visit me, which I cannot even express my gratitude for. I finally returned to school mid-October, and my teachers were extremely understanding and combined with allowing me to be exempt from a couple of assignments and the hard work I put in trying to catch up while I was at the hospital, I was able to keep my straight A's and receive a 4.0 for the semester.
I spent the rest of my freshman year in a somewhat depressed/sad stage. At this point my illness no longer had the chance of making a full recovery, and it was now classified as chronic. Now I was asking the question that I'm sure many other's in my situation ask: "Why me?" It was hard to adjust to my new situation, and I knew now that I would never be able to return to the competitive swimming world. This was the time that I really grieved about my situation, although I tried my best to hide it from my parents since I knew they were already dealing with so much. Instead, with no swimming or exercise to distract me, I transferred my competitive nature to and mainly just concentrated on my academics. I'd have to say my best friend at the time Helen really helped me get out of my depression, and since freshman year I have been much better at coping with my illness.
Sophomore year was not as big as Freshman year, but it was still pretty eventful. Life was continuing on as normal, but on the morning of my Chinese SAT II subject test in October 2009, I had another cardiac arrest. My ICD had to shock me and I was rushed to the hospital where I ended up staying for a week to monitor me as I was put on an anti-arrythmic for my heart--amiodarone. I missed school the entire week and again, I had my sister bring me my assignments so I wouldn't fall behind in school and to keep my straight A's. Another two months passed and my condition was looking pretty stable. I had asked my doctor for clearance to join the high school swim team--just for light exercise and not for competition, and promised not to exert myself. To my utter dismay, a week before the swim season was to begin and about two weeks before my fall semester finals, I had another cardiac arrest while I was getting ready for school. I had gone from a sitting position into a standing position and suddenly my heart was racing so fast that the next thing I knew I woke up on the floor of my room with my chest still tingling from the shock of my ICD. I immediately started crying, not from the pain or anything, but realizing then there would be no chance for me to swim that year. Being able to return to the water was just in my grasp, and just like that--it was ripped away from me again. I then had to stay at the hospital again for a week, this time to monitor me for a new drug-- coumadin, a blood thinner since the doctors found there was a risk of a blood clot around one of my leads on my ICD. To make matters worse, this was the week before my finals and I was missing all the review sessions my teachers were holding and even some new material that was going to be on my finals. I spent my entire hospital stay studying for my finals, and in fact, I'm pretty sure on the day I came back to school I had to take my Spanish final! (I think my teachers offered to have me take it later but I believe that it was such an inconvenience that I decided to just take it with the rest of the class) My determination and hard work paid off, as I received A's in all of my classes and I even received the highest score on my AP Euro final! It was such an achievement and I was so proud of myself.
After those two events in Sophomore year, the rest of my high school career was relatively peaceful. I did not experience any more episodes, but I did have to deal with tri-monthly doctor visits to Stanford Hospital, in which most of the time I had to skip school and they would usually take at least 4 hours per visit, and had more blood tests than I could count (every month in fact, due to the fact that I was on coumadin). I was finally cleared for "light exercise" but my high school does not require upperclassman to take P.E., so I usually tried to go biking for 30 min after school and go to yoga on the weekends with my mom. I was so thankful that my condition had now stabilized enough for me to live a mostly normal life and that I was healthy enough to leave home to attend college. I ended up graduating as Valedictorian of my class, even despite all my hospital stays and missing about two months of school overall.
As you can see, my journey has not been an easy one but I somehow managed to persevere through and not let my heart disease hold me back. I had enough of self-pity during my Freshman year, and I spent the rest of my three years of high school really trying to look at the "glass half-full" side of life. During my senior year I joined my city's youth commission and was co-head of the philanthropy committee, and dedicated it towards fundraising and raising awareness of installing AEDs in school since anyone at ANY age, with me being as a prime example, can have a sudden cardiac arrest. My work there along with my volunteering at hospitals throughout my junior and senior year inspired me to pursue a science related major at UCLA, which brings me to the next chapter of my life: living with heart disease in college and 341 miles away from the comfort of my home & my parents.
I'd have to say Freshman year was definitely the hardest year for me. It all started going down-hill after two weeks of starting high school. My local community holds a fun Art & Wine Festival at the local park every September, which I usually spend the time volunteering and walking around with my family looking at all the cute vendors scattered around the park. Not only are there "spin-the-wheel" free giveaway booths and booths selling food as fundraisers, there's also another section of the park dedicated for fun things for kids, such as a petting zoo, multiple moonwalks, and even a rock climbing wall. That year I decided to try the rock-climbing wall, after determining that it was within my exertion limits. Unfortunately, to my dad's horror as he looked on, that was the first time I went into cardiac arrest. My heart stopped as I was mid-climb but the harness caught me, and luckily (which to this day I am still so thankful for) there was a paramedic firetruck stationed right across the rock climbing wall as a sort of show-and-tell station for little kids. The paramedics were able to run across to where I was and with the use of an AED (automated external defibrillator) they were able to shock me back to life after a second shock.
The next thing I could remember when I finally returned to consciousness was the beeping of a heart monitor and me on a hospital bed. I was in the pediatric ICU (intensive care unit) of the Stanford Lucile Packard Children's Hospital, and I couldn't remember anything after strapping on into the harness for rock climbing at the festival. My mom had to inform me about everything that happened and that they were so, so scared I suffered brain damage during the time my heart had stopped beating. Apparently I had short-term memory loss for a week and I would constantly ask my mom: "Where's Dad? Where's Emy (my sister)? Where's my phone? Where are my clothes? Why am I here?" (I know, I was so materialistic... ) Even to this day, it's scary to think that a whole week of my life is missing from my memory, although if I'm being completely honest, I usually try to not think about this whole ordeal. It was during this hospital stay that doctors began bringing up the words "heart transplant" and "surgery" and "put her on the list" and as a 13 year old, it was absolutely terrifying. I still remember my head hurting from all the sounds of the crying babies that were on the other sides of the curtains separating patients within the ICU, and my body was so weak from what had happened and the lack of movement that I could only go for walks 3 times a day. Finally, during the second week of my stay at the ICU, a doctor brought to my parents an alternative: to have an ICD implanted instead of getting a heart transplant. An ICD, implanted cardioverter-defibrillator, would be able to shock my heart out of abnormal rhythm or out of cardiac arrest if it were to ever happen again, and it also has a dual function as a pacemaker. We were all so relieved and immediately decided on that option, and my surgery was to be scheduled later that week. Unfortunately, it seemed my good luck had run out because that same week one of my veins in my leg managed to become infected from an IV. The veins on my arms were already all bruised from new IVs everyday since my veins didn't agree with the needles, and the nurse had decided to try a vein in my leg. My whole body was literally pricked and poked at constantly, and I remember being in a lot of pain. That infection set back my surgery for an entire week, but eventually on October 3rd I received my ICD and after two strenuous days of throat pain from the breathing tube stuck down my throat from the surgery, I was released from the hospital.
Overall, I had been in the ICU for about a month. During that time, as crazy as it sounds, I did homework in the hospital to keep up with my school work as the overachiever I am, and I even attended the hospital school that Stanford provided to learn some of my school material. The highlight of my stay was when my friends from middle school organized a trip and all came to visit me, which I cannot even express my gratitude for. I finally returned to school mid-October, and my teachers were extremely understanding and combined with allowing me to be exempt from a couple of assignments and the hard work I put in trying to catch up while I was at the hospital, I was able to keep my straight A's and receive a 4.0 for the semester.
I spent the rest of my freshman year in a somewhat depressed/sad stage. At this point my illness no longer had the chance of making a full recovery, and it was now classified as chronic. Now I was asking the question that I'm sure many other's in my situation ask: "Why me?" It was hard to adjust to my new situation, and I knew now that I would never be able to return to the competitive swimming world. This was the time that I really grieved about my situation, although I tried my best to hide it from my parents since I knew they were already dealing with so much. Instead, with no swimming or exercise to distract me, I transferred my competitive nature to and mainly just concentrated on my academics. I'd have to say my best friend at the time Helen really helped me get out of my depression, and since freshman year I have been much better at coping with my illness.
Sophomore year was not as big as Freshman year, but it was still pretty eventful. Life was continuing on as normal, but on the morning of my Chinese SAT II subject test in October 2009, I had another cardiac arrest. My ICD had to shock me and I was rushed to the hospital where I ended up staying for a week to monitor me as I was put on an anti-arrythmic for my heart--amiodarone. I missed school the entire week and again, I had my sister bring me my assignments so I wouldn't fall behind in school and to keep my straight A's. Another two months passed and my condition was looking pretty stable. I had asked my doctor for clearance to join the high school swim team--just for light exercise and not for competition, and promised not to exert myself. To my utter dismay, a week before the swim season was to begin and about two weeks before my fall semester finals, I had another cardiac arrest while I was getting ready for school. I had gone from a sitting position into a standing position and suddenly my heart was racing so fast that the next thing I knew I woke up on the floor of my room with my chest still tingling from the shock of my ICD. I immediately started crying, not from the pain or anything, but realizing then there would be no chance for me to swim that year. Being able to return to the water was just in my grasp, and just like that--it was ripped away from me again. I then had to stay at the hospital again for a week, this time to monitor me for a new drug-- coumadin, a blood thinner since the doctors found there was a risk of a blood clot around one of my leads on my ICD. To make matters worse, this was the week before my finals and I was missing all the review sessions my teachers were holding and even some new material that was going to be on my finals. I spent my entire hospital stay studying for my finals, and in fact, I'm pretty sure on the day I came back to school I had to take my Spanish final! (I think my teachers offered to have me take it later but I believe that it was such an inconvenience that I decided to just take it with the rest of the class) My determination and hard work paid off, as I received A's in all of my classes and I even received the highest score on my AP Euro final! It was such an achievement and I was so proud of myself.
After those two events in Sophomore year, the rest of my high school career was relatively peaceful. I did not experience any more episodes, but I did have to deal with tri-monthly doctor visits to Stanford Hospital, in which most of the time I had to skip school and they would usually take at least 4 hours per visit, and had more blood tests than I could count (every month in fact, due to the fact that I was on coumadin). I was finally cleared for "light exercise" but my high school does not require upperclassman to take P.E., so I usually tried to go biking for 30 min after school and go to yoga on the weekends with my mom. I was so thankful that my condition had now stabilized enough for me to live a mostly normal life and that I was healthy enough to leave home to attend college. I ended up graduating as Valedictorian of my class, even despite all my hospital stays and missing about two months of school overall.
As you can see, my journey has not been an easy one but I somehow managed to persevere through and not let my heart disease hold me back. I had enough of self-pity during my Freshman year, and I spent the rest of my three years of high school really trying to look at the "glass half-full" side of life. During my senior year I joined my city's youth commission and was co-head of the philanthropy committee, and dedicated it towards fundraising and raising awareness of installing AEDs in school since anyone at ANY age, with me being as a prime example, can have a sudden cardiac arrest. My work there along with my volunteering at hospitals throughout my junior and senior year inspired me to pursue a science related major at UCLA, which brings me to the next chapter of my life: living with heart disease in college and 341 miles away from the comfort of my home & my parents.