The Piranha Effect

I recently had my 18th birthday party with friends and family. It was a great time, with laughing and celebrating the moments of my 18 years of life. I was once again reminded of the amazing family I have.

During dinner, my mother made a toast. She brought up a point that has been on my mind since the party. She noted that every single person sitting in the room had some how helped us get through the tough times in life. And it stuck in my mind: every person had done something during our journey that helped us to get through it. Whether it was donating a kidney, lending a helping hand, or simply writing a thoughtful note, everyone had some how helped us. It made me realize the immense power we have to help one another.

It sounds so simple, and it is, but it also such a big deal. We have an incredible opportunity as humans to help one another. The idea that one person can make someone's day brighter or pick up a friend from a dark time is amazing to me.

As I am writing I am remembering a funny story from when I was in the 7th grade. One of my favorite teachers, Mr. Bowen, who was my 7th grade science teacher, always thought highly of my family for our strength. That was the year I was in kidney failure, and my transplant was that summer. He was going to retire the next year, and was slowly clearing out all of the stuff in his room. 

He called me out of class one day to come to his room so he could give something to me. I wasn't sure what he was going to say, and so I was curious as I walked through the door. He had a gift bag with tissue paper in it, and showed me a statue of a piranha that had been in his room for years. He told me that it reminded him of my family--he said that by itself, it's just a fish, but in a group they are strong and work together well. I was touched to have received such a meaningful gift from one of my favorite teachers.

The idea of a group of piranhas being powerful and strong reminds me of the simple idea of helping. One person lending some help is nice, but a group of human beings helping one another creates something amazing, something worth living for, something that could be seen in that room at my birthday party.

We are taught to help each other from the time we are in kindergarten, and it is a habit that we must remember. An act of kindness every day from all of us can make an incredible difference in the world. 

Happy (late) Father's Day!

When life gets busy, things get shoved to the side, and you must tell yourself that it's better to be late than never. Well, father's day was quite a while ago, but it was my last week of school and I had finals, and I didn't have any time to write the kind of blog post my father deserves. I've had some time now, and here it is.

I would like to tell you about a time after my kidney transplant. It was about a week or so after my transplant, and the Disney channel  shows were on repeat, and Webkinz online games were getting boring. My dad said that he was going to read to me City of Thieves, and, quite frankly, I wasn't thrilled. In fact, I put it off for a couple days, finding reasons why he shouldn't read it just yet. I have never been much of reader, which drives the bookworms in my family crazy. Anyway, he eventually read it to me, and I loved it. The story, the fact that I could imagine a world while laying in my hospital bed, and how my dad and I could escape to another land while we were stuck in the hospital. While all of my parents have provided loving support during tough times, my father has been an incredible artistic influence in my life. The book that he read to me is just a symbol of all of the incredible gifts and talents he's given to me.

When I think of my childhood, there is an image of a warm living room and the sweet sound of guitar in the background. Even though he might not say it, my dad is an excellent guitar player, as well as a pianist, and pretty much anything else you can name. That's a gift that he has given to me--the ability to play almost any instrument by ear. I remember sitting at the piano with him when I was little, and he would play something, and say, "Okay, now play." I am so thankful for the times he kept me there at the piano even if I was complaining that I'd rather be doing something else, or during the times I would just say that I could never learn it because it seemed so hard. Today, I can play almost anything by ear, and that's because of the incredible patience he had, as well as all of the times that we would spend singing and harmonizing, or trying to figure out a new song on the piano when I could have been watching TV or playing video games.  I was taught at a young that anything could be made better by a guitar. I've seen my father bring together a group of people simply with a guitar. I've seen my father bring smiles and bring our family closer together during the years of sitting around a fire singing, and simply just being together doing something we all love. Music is such an amazing thing--you can be brought back in time, and simply a man with a song in his heart and a guitar to play to the world can bring joy to the hearts and minds of his listeners.

My dad is such an amazing person for many reasons, but if I must name one, it's because of the amazing joy and value he's brought to my life, as well as the lives of those who are around him while he creates something magical with a guitar and a voice. The appreciation my sister and I have for singers and songwriters, the messages they portray in their music, and the ability to bring life to singers who have passed on, to honor them, and bring their values, emotions, discoveries, and talent to our lives. To bring smiles even in tough times, and to experience those movie-like scenes around a campfire, when you just know that life is so incredibly precious and the people around you share your love for life and music. I must thank my father for the opportunity to see through the eyes of an artist, to hear through the ears of a pianist, and love life the way artists like John Denver did.

Spinal Fusion Surgery: Pain helps us grow

Hello everyone! I have written so much about my kidney transplant, I thought it was time for some variety. (Ah, the perks of being having had multiple surgeries!) I would like to tell you about my back surgery. It has been so long since my spinal surgery; I was a little kid back then, and I only can remember certain things from it. I can't believe this July, July 10th, will be the seven year anniversary! Let's start from the beginning.

The first thing I remember from the scoliosis-era in my life is going to Lucile Packard a lot to visit Dr. Rinsky, who was the chief orthopedic surgeon. I hadn't been to Stanford before, so it was a whole new place for me. I was only ten, so I don't think I realized how severe my back situation was. We would go to the doctor's office and they'd take X-rays, and then talk about them afterwards with big scientific words that I didn't understand. At some point I must have grasped the concept of surgery, and on July 10th, the whole family and I drove over to Lucile Packard where I would have spinal fusion surgery.

It was a classic hospital stay. I was scheduled for 10 o'clock in the morning and the surgery ended up being at 8 o'clock that evening. I remember being so hungry, so my step mom came up with the idea that I should make signs saying that I was fasting to save the polar bears and to stop global warming. I was always interested in animals, and I knew that they were endangered, so to pass the time I sat in the hallway and showed passing doctors and nurses my signs and drawings of polar bears, and my campaign to save them. I didn't understand why I would not be eating to save their lives, but I went along with it. I kept a scrapbook of the surgery, and below is a picture of one of the signs I made.

There's another thing I must tell you about the surgery. The preparation was indeed a drag because of the timing, but that's not what made it an upsetting experience. My back surgery was the first one I'd had after my heart surgery, which was seven years before, and I didn't know then what I know now about how my body responds to anesthetic--I tend to have an adverse reaction to them. Before I went in for the operation, the anesthesiologist decided to give me a calming medicine, versed, to calm me down before taking a more potent anesthetic. Needless to say, it did not calm me down. I started to become hysterical, extremely anxious, worried, and crying. My whole family was there with me, and they were all doing the best that they could to calm me down, but something very scary emotionally was happening, and no one, it seemed, could calm me down. That is, until a nurse named Joshua came over and put his hand on my head and completely calmed me down. He looked me right in the eyes and told me his name, and that he would be there the whole time and that there was nothing to worry about. I remember him to this day, what he looked like, how gentle he was, and how even when I woke up from surgery I talked about him. Even though I was only ten years old, I knew then that he was my angel. And I still know, to this day, that he was my angel sent to calm me down even when my own mother couldn't.  I made this picture when I was able to sit up in my hospital bed.

While I am writing this, so many memories are flooding into my mind. It's amazing all of the little details we forget about that make us who we are today. It was the German philosopher Friedrich Nietzsche who said, "What does not destroy me makes me stronger," and those are words that I live by. After my back surgery, the pain was so unbearable that I actually can't remember it anymore. I remember being miserable, but I cannot remember the physical pain. In the moment, I thought I was stuck like that forever, but now it's been seven years, and I can do anything I want with my life, pain-free. It didn't kill me, and now I'm stronger, physically and emotionally, because of it.

As humans we have the amazing opportunity to turn pain and misery into an inspiration to drive us to do great things. So, I challenge you to think about the pain in your life and how that has helped you to grow and has shaped who you are today.

Kidney and Liver Transplant Party!

This Saturday I spent the day with two of my favorite people: my mom and my aunt Theresa, who donated her kidney to me four years ago. We attended a party for liver and kidney transplant donors and recipients, to honor the donors and explore the different organizations all about organ donation. It was very cool to know that we were all gathered because of one thing: the gift of life.

In my day-to-day life, I know about my kidney transplant, and sometimes I tell people about it, but every once in a while, it really hits me: I am walking around with my aunt's kidney. This happened at the gathering when I could see that some of the people we talked to were really moved by our story. The fact that I had two failing kidneys and Theresa donated her own kidney to me is unfathomable.

It was great to be able to be there and honor my donor. We went out to dinner afterward, and we were reminiscing about the moments leading up to the surgery. From the time we found out, to the time we had the surgery, to the time after.

The night before the surgery, Theresa came over to the Children's side of the hospital to say hi and goodbye before the surgery. We had come so far; Theresa had had months of tests, I had had months of tests, and we still had a long road to go, but we were still there, still alive, still silly. Theresa was there for me in every way she could be. The surgeon met us there too, and we all had a moment as human beings about to go into a life changing surgery, with a caring and extraordinary surgeon to take care of us.

Next thing we knew, we woke up from surgery. I remember not being able to believe it was over. I must have asked my sister a thousand times before finally believing that the surgery was over. And the first thing that Theresa said when she woke up was: how's my niece?

I still can't believe her heroism. I sill can't believe everything she risked for me. I stillcan't believe that I'm walking around with her kidney. And here we are, about four years later, still here, still alive, still silly, and closer than ever.

I never thought I would be able to drive a car. I never thought I would be able to do anything that a normal teenager does because of my condition. I was really sick, and I didn't realize it. I can do anything I want with my life because of my aunt. If she hadn't given me a kidney, I might still be on dialysis, not being able to go to school, not being able to spend my summer days at the beach, not even being able to go to my junior prom. But because of my aunt, I can live a normal life. Thank you, Theresa, for my life.

Happy Mother's Day!

Imagine you're a mother. You have two young daughters, one's five and the other is two. You have just found out the that youngest one has a rare genetic condition that is, in most cases, fatal, and a few days after her third birthday she was going to need open heart surgery. This happened to my mother, the strongest woman in the world. How she cared for two little girls while dealing with heart surgery and not knowing what the future looked like is incredible. But what's more incredible is how she dealt with two more major surgeries to come throughout the years, her other daughter having medical problems as well, as well as everything else that goes along with being a mother. But the most incredible part is that she kept her faith throughout all of it and kept hope alive even in the darkest of hospital rooms.

I would like to thank my mother for everything she has done. I love you so much and thank you for everything you do for me. Without you, I could not have gone through all of the major surgeries, as well as just the day-to-day things I do. You have been a hand to hold, a shoulder to cry on, and you've been my advocate through everything. I don't know how you have stayed so strong even to this day, but you have and you are an angel. Thank you. 

I would also like to thank my stepmother, who has been there for me as well as my mom, for two of three of the surgeries. Thank you for all of your support, care, and understanding through everything. It's incredible to me that I have three amazing, loving, supportive parents. I love you!

Happy Mother's Day!

How to love the things we dread

Hello everyone! I have not written in a long time, I've had so much school work lately. Infact, my endless amount of school work is what inspired me to write this post right now. I was sitting there with so much to do that I dreaded the feeling of dreading my next classes tomorrow. Not that I don't like learning--I love it--I just don't particularly love going to class after class everyday. But then I thought, that is just ridiculous. I have access to an education right at my fingertips. Sure, I could criticize the school system all I want, but that's not going to change the fact that I have to go. In fact, the only thing I have control over is my reaction and attitude toward my responsibilities.

While I was dreading everything, I thought of something. As it often does, my vivid memories of hospital life crept into my mind, staring, almost glaring at me, saying are you kidding? And it's almost like the memories slapped me, reminding me that any child in the hospital right now dying of cancer or any other illness would rather be in school than dying in a cold hospital room. And I had to ask myself, would I rather be having a math test or a kidney function test?

It's so easy as humans to fall into a routine. Negativity is all around us, tempting us to whine about the little things. We should be thankful about the things we dread most. So, sure I could critize everything, but why would I? Instead of thinking every morning that I don't want to go to class, I will begin to think about this amazing opportunity at education, the opportunity to find out what I want to do, the fact that six adults showed up today for me. To teach me and perhaps even inspire me. That's pretty incredible.

So, I challenge you to really think about both sides of your daily responsibilities. Think about even the littlest of things: taking out the trash, making dinner, driving, being able to open the door. It's hard to remember all of those little things, even a little bit annoying to try to be grateful for everything, but I know we can all do it. We need to honor those that can't do all of those things.

Confinement--You can break free

I came across my old blog that I used to have, and I was amused; I really haven't changed! The posts from that blog are interesting because all of my memories were so fresh from the hospital--I started it just a couple months after my transplant. Here's one of the posts:

"How was your day today? Today has been a very good day for me. This morning I went to the Farmer's Market in downtown with my mom, my sister, and her friend. We got various fruits and vegetables that we know were grown with love and in the correct way--because the farmer was right there! Then, my mom and I went to a nursery where there are many hills. As my mom and I were taking in all the beautiful hills (so clear because of the rain), my mom looks over, and yells, "Look at that Rainbow!" I looked over and it was the most spectacular rainbow I (and my mom) had ever seen. It was a complete red, orange, yellow, green, blue, and purple, arching over the hills to the left of us. It was practically coming out of the earth. I then opened the window, seeing it more clearly, and feeling cold wind and wet raindrops on my face. The first thing that came to my mind was how amazing and great I felt. Then, I thought about how people who or in the hospital, and even just everyday people who lose sight of what really matters (Life itself) are confined indoors or strapped down to work, phones, email, Twitter, Facebook, and so many other electronics. It makes me sick to think that some people don't care about the most wonderful thing: Nature. You have the ability to go outside and experience. A lot of people in the world don't get that ability.

I remember when I was in the hospital and I finally got the opportunity to go "outside" (which was really just on the balcony of the hospital). It was of course nice to be out, but it was a big disappointment as well. I could see all the buildings of Palo Alto. I felt like I was so close, yet so far. It is the worst feeling to not be in control. It didn't matter what I did, how I acted, what I said, how much I cried, how much I screamed. My enjoyment of being let free depended on the doctor's decision, and my health. You probably don't realize that that terrible memory of mine is happening to children and adults everyday--some thinking they may never get to go outside again. You can. You can. You can go outside. You can do those things. You never know what can happen to you, or someone you love, so you should always live in the moment, and experience the good things in life. Go start living"

I hope you enjoyed the post!

April is Donate Life Month

Hi everyone! Did you know that April is Donate Life month? I would like to take a blog post to tell you about my experience with organ donation, and to educate about why you should be a donor.

 

When I was thirteen, I started going to the doctor more and having more blood tests. It's amazing to me how young I was then, because I really didn't think much of the fact that I was getting more and more blood tests. Eventually, we went to a nephrologist, and my mom told me that I needed a kidney transplant. When she told me that, I cried and cried, but I don 't think I even really knew what that meant. I had heard of transplants before, but I always thought that was something other people needed, not me.

 

Putting all of that aside, I went to the hospital one day to have teeth extractions--I needed seven teeth pulled, and because of my medical condition, it needed to be done at the hospital. However, once we were there, my blood tests results showed my creatinine levels rising drastically. Creatinine levels check kidney function. A normal level is about 0.6, and I was at 6.8.

Next thing I knew, I woke up in the recovery room at Lucile Packard with a catheter on the right side of my chest. A tube had been inserted into a central vein that goes directly to the heart. I was going to be on dialysis until a kidney was available for me. To this day, I still remember the pain. It was the worst pain I have ever felt in my entire life. I couldn't move to my right side, and when I walked (which wouldn't be for a couple of days) I had to keep my right arm stuck to my side as to not move my body too much.

Dialysis was probably one of the most interesting things that I have ever done. Dialysis is where tubes are connected from a machine into a catheter which can be located on the arm, chest, or stomach, and blood flows out of the body into the machine. The machine cleans the blood, replacing the normal function of the kidneys, and is put back in to the body. Some kids and adults are on dialysis for years, about three hours a day, three days a week, every single week. But I was extremely fortunate because I was only on dialysis for a month.

Little did I know, from the time I found out I needed a kidney transplant to the time I was on dialysis, my aunt, Theresa, was going through numerous blood tests constantly to check if she could be a donor. Then one night after dialysis, my mom, my sister, my grandma, aunt Theresa, and I went out to dinner in downtown Palo Alto, and Theresa told me that she was going to be my donor.

I was stunned. If I could go back, I would say thank you a million times to her. But like I said, I was so young, I just sat there. I didn't want her to have to go through that! My mind couldn't comprehend the incredible journey that my aunt and I were about to take. And so, on July 13, 2009, Theresa went in for surgery and I had mine shortly after.

This picture above shows the first time we saw each other after the surgery. The amazing connection that we have is indescribable. I still can't really believe that I'm walking around with her kidney. Today, Theresa and I are both doing great. Theresa is a true hero, and I can't ever thank her enough for the amazing gift that she gave me. Thanks to her incredible character and actions, I live a normal life, dialysis-free.

But what about those kids that are still on dialysis? What about the kids in need of a heart? They can't go on something like dialysis to keep their body functioning properly. More than 115,000 men, women and children are on the waiting list for organs. There's something that all of us can do to help them. Go to http://donatelife.net/ and register to be an organ donor, and like their page on Facebook at https://www.facebook.com/DonateLife.

If you have any questions about becoming an organ donor, leave you question in the comments section or check out the "Understanding Donation" section on the Donate Life website. It only takes a few moments to sign up to be an organ donor, and those few moments could save a life.

The Ronald McDonald House

I woke up this morning to the sun shining through my window, and I felt the nice feeling of a Sunday morning. I love spring! Do you ever think about the preciousness of waking up in your own bed? Well, this morning I thought about my days I spent after my kidney transplant in the Ronald McDonald House in Palo Alto, where I didn't get to wake up in my own bed for a while. The Ronald McDonald House is a place for families to stay when their kids are seriously ill and needing treatment in the hospital. After my transplant, I needed to go to the hospital every morning to get a blood test to check levels of my medicine, to check my kidney function, etc., so I had the pleasure of staying at the House. Staying at the House was a humbling experience.

Anyone who has stayed at a Ronald McDonald House knows that the House has its own culture. When my family and I stayed there, we were surrounded by other people going through the same thing; there were two other girls about my age who had a kidney transplant while I was staying there. There were also two kids that were my age who had just received a heart transplant, and there was a little boy who had had a liver transplant in the past and was in need of a new one. This is the norm at the House. As you can imagine, all of the little day's stresses completely went away when I went there. It was amazing the perspective that I found while staying there.

From having these experiences, it pains me when other people (adults as well as kids) say that their life is so terrible because of something so insignificant like their phone died or the internet connection went out. When you find yourself getting stressed about something, try and think about how much worse it could be. Now don't get me wrong, we all have our moments, but try to be conscious of your reaction to something that happens to you today, and I will do the same. When something stresses me out, I will stop, take a deep breath, and know how fortunate I am that I got to wake up in my own bed this morning.

The Story of Jeune Gal

Welcome to my blog! I'm Jeune Gal from California, I'm seventeen, and I have a rare genetic disorder called Jeune syndrome.  I am creating this blog to share my story and connect with other people who have the disorder. Let me tell you a little bit about myself.

When I was two, I was diagnosed with a genetic disorder called asphyxiating thoracic dystrophy, or Jeune syndrome, which is a rare genetic disorder that causes short stature, short arms and legs, a small chest cavity, and can cause kidney problems. When I was three, I had open heart surgery due to a mitral valve insufficiency that was unrelated to Jeune syndrome. Then when I was ten I had spinal fusion surgery because of scoliosis, which the doctors also said was not associated with the disorder. In 2009, when I was thirteen, I went on dialysis due to rapid kidney failure that was directly caused by Jeune syndrome. Fortunately, I was not on dialysis for too long because my aunt donated her kidney to me. I had the transplant at Lucile Packard Children's Hospital, and I am so grateful for the wonderful doctors there, and extremely grateful for my wonderful aunt.

When I was diagnosed with Jeune syndrome, my mom and dad were told by the doctors that most kids die at a young age from complications of pneumonia due to a small chest cavity. Because of this information, my mom didn't know how long I would live. Today I am seventeen years old and living a normal life, with only one exception: having a short stature of 4'6".

I am writing this blog in hopes of finding other young adults with the disorder to connect with and share our stories, but I am also writing this blog to put forth a message from the experiential lessons I have learned through my journey. I have learned to be respectful and conscious of how I treat other humans due to encounters in everyday life with people that aren't sure how to respond to a very small girl who is getting gas at the gas station.

Thank you for reading my first blog post, and I hope that you continue to read my future posts. Most importantly, please comment or email me at jeunegal1@gmail.com. I would love to hear from you and connect with other people who have Jeune syndrome.