Tuesday, September 23, 2014
Inquirer Daily News

20 years of Fontan and I'm still kickin'

It has become apparent over the past few weeks that my friends and I are becoming older. Many of my friends are graduating college and entering the job market, another one of my friends just had her first child, and I just embarked on what I am hoping will be the journey of a lifetime. It's ridiculous for me to think that this time last year I was spending countless hours waiting to get the final verdict on my diagnosis. My life has been constantly changing since then. I cannot wait to see what the world has in store for me this summer.

20 years of Fontan and I'm still kickin'

It has become apparent over the past few weeks that my friends and I are becoming older. Many of my friends are graduating college and entering the job market, another one of my friends just had her first child, and I just embarked on what I am hoping will be the journey of a lifetime. It's ridiculous for me to think that this time last year I was spending countless hours waiting to get the final verdict on my diagnosis. My life has been constantly changing since then. I cannot wait to see what the world has in store for me this summer. 

I will not be graduating until next spring. I like to refer to my ninth and tenth semesters at Temple as my super senior year. Career paths have not been on my mind. I still have time to think about my post collegiate life. I have been thinking about my health more and more though. All the doctors appointments I have had recently to make sure I am healthy enough to go on this trip have led me to one conclusion: there are no cookie cutter/textbook predictions for fontan patients as they enter their late twenties.

Each case is different. I have been reading studies as of late to see what the future may have in store for me. I can only use one word to describe what I have read and that is frightening. Forty Years of the Fontan: A Failed Strategy by Dr. Jack Rychik made me aware of the statistic that one in four fontan patients will die before they are thirty. I feel great at this time and I will not live in fear of numbers, but I do not want to be naive about them either. My CT scans showed the beginning of cirrhosis last year, which I discussed in an earlier blog. The new CT scans I have had since show it worsening (my liver function remains normal which is a plus)

I had the pleasure of visiting Dr. Rand and Dr. Tang, gastrointestinal specialists at Children's Hospital, to discuss what may be going on with my liver. I say may because they do not know whats going on for sure until they take a liver biopsy. I hate the uncertainty, but sometime in August I will get a biopsy and find out what's going on. Until then all I'm worried about is the open road, our next destination (first stop Columbia SC!) and what this summer can offer me.

P.S. I am very fortunate to be able to go on a trip as epic as this, and I would like to thank all of those who helped me get to my departure point this morning.

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