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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Cindy's Story: A Cross Country Adventure


By Cindy Weber
November 2002

My name is Cindy Weber. I was diagnosed with POTS in 2000, my sophomore year of high school, at age 16. My diagnosis was a scary situation, and it included kidney failure.

I have always been a cross-country and track runner, and I've always been rather talented. Ever since I can remember, though, when I finished running I was always pale. I thought this was weird because the other kids were always flushed and red, whereas I looked like I had just seen a ghost. It never hindered my running, though, so we just laughed and I thought nothing of it.

Sophomore year, at the Regional Cross-Country meet, I got really sick. Several other times before in the season I had passed out after the race, ending up in an ambulance because my heart was racing at 200-250 beats per minute. My heart would beat too fast for a whole hour after the race, and I usually felt sick after I finished running. However, I was motivated like heck, so I kept running. I got 5th place in my league and 13th in my district. I was running really well and my coach was happy. We were expected to make it to States (OHIO) that year. At the regional meet, though, I fell apart. I got to the second mile marker and the world started to spin. My legs felt like lead and I lost my sense of balance and control. It took me over 10 minutes to run that last mile, and it usually only takes about 6 minutes. I could not hear anything, I could barely see, and I did not know what was happening. I could feel my heart about ready to pop out of my chest. I was almost to the finish line when I collapsed. The officials would not touch me, though, because I was still in the race. So, they let me crawl across the finish line. I put my hand on the white line and blacked out.


I woke up later surrounded by EMTs. It was very scary. My heart was racing and I was really winded.

That night I threw up blood, and my mom took me to the hospital. I spent a week in the hospital, in the pediatric intensive care unit, and then on a regular floor. They figured out that my kidneys had shut down. The doctor said that my heart had started beating so fast because it wasn't getting enough blood. The blood was pooling in the veins in my legs and not enough was getting back to my heart. So, in order for the heart to get its needed blood it started shutting down other organs, like my kidneys. I'm glad it did that, though, instead of going into cardiac arrest or something.

I saw a kidney doctor on a regular basis for awhile. Then I went to a cardiologist, and he found nothing, so I went to a neurologist. It took months for them to finally figure out what was wrong with me. I went through a lot of tests, gave a lot of blood, etc, and finally they diagnosed me with POTS.

I was given a beta-blocker, Nadolol, which I still take two years later. They also have me taking 8 grams of salt a day, which I do not like at all.

I am back running competitively again, and that impresses my doctor. He says that because I'm so young I have responded well and it’s not affecting me too much. I still get dizzy though, and I still have a fear of just dying when I run. I try not to let that stop me. I just run through it, but every time I feel my heart start to race I get scared.

My illness has made me want to go into medicine. I have applied to colleges as pre-med, and next week I have 3 interviews at a medical school that accepts college freshmen into an accelerated program and guarantees them a seat in the medical school. I am very excited. I guess getting diagnosed with POTS has had its pluses too...

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