Pots Syndrome is a rare, unknown disease (most doctors have never heard of it) that can come about after a major surgery, illness, or injury. The symptoms of this sickness are extreme, persistent exhaustion, vertigo, migraines, chest pain, muscle weakness, pain in legs & abdomen, brain fog, disorientation, impaired memory, sleep disorders, and much more. The good news is, that with the proper treatment, Pots is treatable and in most cases curable.
This disorder is not something that my family and I have been open about. In fact, we have been fairly secretive about the fact that I have become sick at all.
It took over two years for my parents to be convinced that there was something more serious wrong with my health then me just being lazy.
It all started my senior year of high school, when I got pneumonia and was out of school for 23 days. I woke up one morning and just couldn't get out of bed. Before I got pneumonia I was extremely active, I was in orchestra, played in a quartet, was photo editor of the yearbook, had a boyfriend, and had an active social life. I was, what my doctor describes as, "a type A personality." After 'recovering' from pneumonia it took everything I had just to finish school & graduate.
I never really 'recovered.' I wasn't ever back to myself, fully active after that. I'm still not.
Not knowing anything was truly wrong, I moved to the north side of Chicago to attend North Park University; where I started my freshman year the following fall. This is where I started to really notice that something was wrong with me.
I wasn't outgoing anymore. I didn't have the energy to go out & meet people, do things, really make an effort. I was sleeping, or laying around watching tv. I didn't have the energy to go to class, when I started skipping class to sleep, I knew something was off. Before I got pneumonia I never would have missed class.
Not only was I not making new friends, but I wasn't playing viola. Something I had done everyday since I was three. I was at North Park on a music scholarship, I had been first chair of the high school orchestra for two years, I had gone to all-state three years in a row...no matter what I should have been playing viola.
Somehow I lived through being a camp counselor for a summer. Having Pots Syndrome, untreated, and working 23 hours a day, 6 days a week for the summer in that active environment?! Now that I look back on it, I have no idea how I did it. My doctor is even more astonished by this. By all accounts, I should not have been able to make it through that summer like I did. Especially since I tore my MCL half way thru the summer and finished working with my knee in an immobilizer. I give major credit to the senior staff at Covenant Harbor. I couldn't have finished my job that summer without their support.
I returned to North Park University after that summer and started my sophomore year. School was hard for me. Which it never had been in high school. My head was foggy, I was having a hard time concentrating in class, and I couldn't remember things. All characteristics that had never been usual for me in the past. My grades showed that I was struggling, also unusual for me.
I transferred 'home' to NIU, Northern Illinois University, for the fall semester of my junior year. I moved in with my parents. After seeing me on a daily basis, my parents became alarmed. It was finally obvious to them that something was wrong.
The doctors visits start....
For awhile I was in my family doctor's office every other week, sometimes every week. I used to be so scared of needles I would throw fits like a small child. After all the tests and treatments I have been through, I can handle a needle like a champ.
I saw multiple different specialists. Each one of whom would look at my list of symptoms and think I had their 'speciality.' None of them could ever explain all of my issues, just a few at a time. With this in mind, I was diagnosed with MS, Fibromialgia, and a couple other debilitating diseases. One of the specialists even tried to convince me that I was just fine. Even after seeing me when I was in the ER, convulsing uncontrollably (and had been for an excess of 10 hours).
Thankfully, I was referred to Dr. Fischer at Mayo Clinic by a family friend who had some connections there. After some emails back and forth with him, and a few at-home tests, he asked us to come see him.
After seeing Dr. Fischer at Mayo Clinic, he accounted for all my symptoms and diagnosed me with Pots Syndrome.
Dr. Fischer is fantastic!! He did the most through examination out of any doctor I have ever met. He spent two hours getting to know my Mom & I. He talked with us about everything from why I had to come see him, my daily life, my relationship with my parents & friends, to school, work, etc. He really made an effort to get to know me and what was going on. He wanted to rule out everything possible before coming to a conclusion.
After a couple tests, Dr. Fischer came to the conclusion that I had Pots. He made sure that I completely understood what this meant, treatments, and how I should go forward.
Mayo Clinic is the most amazing hospital. Besides the fact that it is beautiful, it is compact and high tech! What the 'normal world' would take weeks to schedule and get the test results back on, Mayo Clinic does in hours.
Oh. Did I mention that the lobby of the clinic is gorgeous? The whole hospital is surrounded by a shopping mall? The hotels and other buildings in the vacinity of the hospital are all connected by tunnels so you don't have to go outside in the bitter cold, winter months.
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| Chandeliers hanging in the lobby of Ganda Building at Mayo Clinic |
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| Lobby of Ganda Building at Mayo Clinic leading to 'Subway' |
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| Pediatric Wing, Mayo Clinic |
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| Lit Wall Decoration, Pediatric Wing, Mayo Clinic |
I am thankful to know what I have. It is a day to day struggle to deal with my symptoms, but I am on the path to recovery. I think that writing about everything and being open about the joys and struggles of daily life will help me in my adventure.
Meet my fantastic doctor!!
Dr. Fischer, my doctor at Mayo Clinic, addressing Pots Syndrome
Sweet Dreams,
K
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