Tuesday, July 19, 2011

POTS Syndrome and Faith, Part I

I've decided to change things up a little bit and get personal. I don't think I've ever written the whole story of how I was diagnosed with POTS Syndrome, so I'll share it over the next few days and also share a little bit about my faith. I know that there are a lot of amazing bloggers out there who post about their health issues, and I really do think it helps to raise awareness. So no clothes posts for the next few days, just the cold, hard truth about me. BTW, I totally understand if you want to sit these out. We can still be friends.

I used to be well. Sure, I'd get taken down by the occasional sickness, but I was well. I used to play club soccer, went running daily, was president of my sorority's alumni chapter, in Junior League, and a marketing advisor for my college sorority.

In September of 2009 I got really sick. It started out with a virus that never got better. My doctor put me on antibiotics. And then more antibiotics. And more, different antibiotics. This same doctor didn't order correct tests for me and failed to look at my medical history, and was later investigated for negligence. But that's a different story. So on one of these antibiotic trips, I decided I'd get a flu shot too. That night, I had a bad reaction. Fever, chills and arm pain. I knew that people got reactions to the flu vaccine, so I went to work the next day. While I was at work, I knew that I was really sick and dehydrated. I called into my doctor's office and they immediately set me up with an IV to get some fluids in. My husband was called to come get me. I felt a bit better, but the next day I ended up in the hospital to get more IV fluids. This would become routine for me. I'd had to get IV fluids during college a few times, but had always attributed it to partying, stressing out and not taking care of myself.

My health started to decline more. I was tired all the time, my heart was racing and I'd be on the verge of blacking out. I couldn't stand without being extremely out of breath. I'd overheat while doing something easy like talking on the phone, and I'd go through bottles and bottles of Pedialyte and Gatorade a day. I couldn't keep any fluids in.

I went to a number of doctors who couldn't figure it out. I was tested for hyperthyroidism, diabetes, and all sorts of other things. I knew that something was wrong with my heart, but I'd had EKGs and they weren't able to find anything except a rapid heart rate.

I went through life half alive. I couldn't make through a whole day of work, I was too tired to read or watch TV, and was gasping walking up the flight of stairs to my apartment. I'd been to about 5 doctors at that point, and no one had a clue, except that I was getting worse.

My husband, who was in law school at the time, was taking a class with a girl he knew had a disability. He didn't know what was wrong with her, but he noticed that we had a similar body shape and that she walked like I did, kind of unsteadily and off-balanced. One day he decided to go up to her and ask what her illness was, all on the chance that it might help me. While he was talking to her, he found out that she had the same symptoms that I did. She wrote down all of her symptoms for him, questions to take to my doctor, things that made her feel better, and the name of an amazing cardiologist. She had been diagnosed a year prior with Postural Orthostatic Tachycardia Syndrome (POTS Syndrome). Mr. Bee immediately texted me and let me know about his friend. I didn't want to get my hopes up, but she sounded exactly like me. The symptoms all fit to a tee.

I had another doctor's appointment the next day with a specialist. I'd asked him about POTS Syndrome, but he had never heard of it. He listened to my heart and did another EKG, but didn't find anything conclusive. He was pretty sure I had an issue, but wanted me to go to a cardiologist.

That night, I switched my primary care doctor (I had an HMO) so I'd be able to see the cardiologist Mr. Bee's friend had recommended. I was able to get in with the primary doctor a few days later, and he gave me the recommendation to see the cardiologist.

Continued later...


  1. Oh wow. I imagine that was a very frightening time! I'm glad your hubby had the idea to talk to his friend!

  2. Hi Katie (this is Michelle) I can only comment as Anonymous, but I want to tell you how very scary that all sounds, and I'm sorry you had to go through this. Part of this struck a nerve with me though. I've had some health issues and have a very rapid heart rate with no known causes. I was hospitalized for 10 days for a virus but they were worried because my heart rate was so rapid the entire time. I never did further testing and I still don't know what causes my heart to do this. I don't think I have this syndrome, but this reminded that I need to get checked out. Thanks for sharing!!

  3. It sounds like the Mr is one amazing and supportive man!

  4. how awesome of your hubs for watching out for you! and i'd NEVER sit these out, i always like learning new things, especially if it's about awesome peeps =)

  5. Your husband sounds very supportive and wonderful! I also know how one day your life can change. Thanks for sharing your story!

  6. Thank you so much for sharing! I'm so glad you took charge of your healthcare and got the help you needed.