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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. 

Kathy's Story


By Kathy Howell, Ohio
January 2004

My name is Kathy.  I am approaching my thirtieth birthday this year, and I have been living with POTS since October 2001. 

I went to have what I thought was a simple knee surgery.  It turned out to be anything but simple.  Within days of my surgery I began experiencing rapid heart rate and shortness of breath.  At first the doctors thought that it was caused by blood clots in my leg and my lung, but even after those were dissolved I was still symptomatic.  This lasted for eight months without any doctor being able to tell me what was going on. 

Besides these symptoms, I had no energy or any desire to do anything.  It was completely frustrating and aggravating.  At the insistence of my employer, I was sent to a cardiologist in Columbus, Ohio.  It was then that I was finally diagnosed with POTS.  Unfortunately, although I had a diagnosis, they couldn't help me either.  The regimen of medicines they put me on did not work.  It made me depressed.  I knew that without some kind of improvement in my health I would not be able to return to my job as a corrections officer. 

By July 2003, the cardiologist I was seeing had run out of options and scheduled me to see Dr. Blair Grubb in December.  I had no idea how I was going to survive those five months.  I left it all in God's hands and went on vacation. 

Returning from my vacation, I went to my regular family physician.  I couldn't handle the depression anymore.  He said he had just read a medical journal article by Dr. Grubb that would help me.  It turns out that the same drug my physician wanted to use for my depression would help me with the POTS.  I agreed to try it.  It couldn't be any worse than what I was already experiencing, I thought.  Turns out it was a good decision to try it.  That was in August 2003, and by November 2003 my health had improved so much that I could return to my job.  Two months have gone by, and although I can't perform my job quite 100% effectively, I am doing quite well.

I had absolutely no idea such a syndrome existed.  Until I got sick, I had never heard of it.  It wasn't until this past December that I knew what had caused all the problems in the first place.  I have a subdivision of POTS, known as Joint Hypermobility Syndrome.  It means that there is not enough firm collagen in my joints and blood vessels for them to perform accurately.  The reason that it wasn't discovered earlier is that the muscles in my legs were overcompensating for the lack of firm collagen.  When I became unconditioned due to the blood clots, that's when all the problems began. 

I believe that more needs to be done to get the word out about these syndromes.  Until this all happened to me, no one I knew had ever heard of it.  You see people on talk shows all the time discussing many different diseases and syndromes.  I wish that we could use these avenues to inform the world.  Without the information, there is no hope for better care for us.  Getting the word out may also help someone out there who suffers from these same symptoms but also has no idea this syndrome exists.  Many cardiologists don't even know about it.  Remember, if not for my family physician, I have no idea if I would be back to work right now or not.  If there is anything I can do to help pass along this information, I would be more than happy to do it.  I just don't know where to start.  Any help would be appreciated.

I can be reached at KATHOW23@aol.com if anyone has any ideas on how to spread the word about this syndrome.  For those of you who also suffer with the symptoms of this syndrome, my heart is with you and may the good Lord bless us all.

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