Bryan

Priopionic Acidemia

Hello for those of you who do not know me, my name is Bryan. I am thirty years old and I have Propionic Acidemia. In the beginning doctors did not think anything was wrong with me. They told my mom I was a sleepy baby, but my mom knew that something was wrong. I was officially diagnosed with Propionic Acidemia at Saint Cristopher’s hospital when I was only a few months old. Shortly after I would start being seen at Children’s hospital of Philadelphia.

When I was really young I suffered a stroke and was in a comma for four days. The doctors said I would never walk or talk. That was not an option for me! Remembering the days of the wheel chair, walker, and speech classes reminds me to be thankful for where I am at today. I am able to walk and talk just fine! However Propionic Acidemia has its effects on me.

Until the age of twenty four I had a feeding tube for a special formula called Propimex -2! Today I am able to drink it by mouth. What I like do is mix it with water, whole milk and strawberry syrup. From my Propionic Acidemia I also suffer from Cardiomyopathy which affects my heart. I’m taking carvedilol 25 mg to keep it under control. I was originally on Lisinopril then I learn that it can be harmful to your kidney’s (important to know).

My chronic kidney disease which was not found by my metabolic doctor but is believed to be caused by my Propionic Acidemia is at stage three. The weird thing normally with kidney diseases they only get worse, but mine has actually gotten better. One of the big things is to drink lots of water. I try my best to drink sixty four ounces of water a day.

A lot people have ask me about ammonia and I’ll be honest I don’t know a lot. My doctors told me that my normal is sixty, I am not sure if that go’s all for kid’s with Propionic Acidemia. You will know when it’s high, you will feel extremely tired and have really bad brain fog. Staying hydrated differently helps along with rest. I would suggest going to your Propionic doctor if gets too high cause I learned from recent experience that normal hospital’s don’t know anything about it.

That’s how Propionic Acidemia affects me. Today I am 30 years old. I work as a cashier at a food store and recently got my own apartment. I exercise daily cause I know how important it is for my muscle, my mind and motor skills. I like yoga but anything you can do will help. I hope this article helps give people hope they can live a somewhat normal life with Propionic Acidemia!
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BRYAN, PROPIONIC ACIDEMIA
COOPERSBURG, PA
SUPERBUFF96@HOTMAIL.COM