My Journey – Bravelets

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My Journey

Posted on December 05 2014

My Journey
Family Stories

I am a 25 year old recent graduate from San Jose, California. My kidney problems began when I was born. I was diagnosed with a genetic kidney disorder called Alport Syndrome when I was in 5th grade. Currently this disease has no cure. Through strict diet control and medication, I was able to slow the progression, but the progression has gotten to a level in which I need a new kidney to continue my life.

After obtaining a Bachelor’s Degree in Biochemistry and Cell Biology, I obtained a job in biochemistry. Even though I did not reach my dream of being a researcher to make some impact on Alport Syndrome research, I was able to manufacture DNA to help researchers discover potential cures for other disease. A year after I started that job, I started to feel extremely tired and flu-like. I just thought it was the flu since it was the winter season. When I went to get a routine blood test, I was told to go to the ER immediately. I was admitted to the ER for hyperkalemia (high potassium) and acute kidney failure. The doctors said I was at risk for cardiac arrest. Thankfully they were able to catch that before it occurred. My kidney function dropped down to below 10% but thankfully it stabilized back over 20%. It has been 9 months (as of November 2013) since that incident and now I am at 15% and waiting to be listed for a transplant.

Because of all this, I have made a Facebook page so that I could get my condition known to friends and family. Never in my wildest dreams did I expect random strangers to start flooding the page and giving me well wishes. One thing that has put a smile on my face and has been helping me with my struggles is mothers with children with Alport Syndrome asking me about my experiences with Alport.

All my life, I’ve asked myself, “Why me? Why do I have to suffer with this?” My religion (Christianity) has helped me find comfort but also helping others that are going through what I went through is helping me find comfort as well.I truly believe everything happens for a reason and there’s nothing random in our lives. We may ask ourselves “Why me?” but rather than looking at the small picture of ourselves, we should look at the bigger picture and see what we can do with our suffering to help others. Things may work out for me, things may not work out for me, but I am happy to know that I can provide comfort to those who have been going through tough times and that makes this disease, no matter how hard it tries to bring me down, is kind of a blessing in disguise.
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