Thursday, March 28, 2013

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!

Wednesday, March 27, 2013

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 and register to be an organ donor, and like their page on Facebook at

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.

Sunday, March 24, 2013

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 I would love to hear from you and connect with other people who have Jeune syndrome.