So in my last post I talked about the process of misdiagnoses and such. Many POTS patients go back and forth and jumping from doctor to doctor, sometimes over a course of several years. I am one of these patients. 3 and a half years! Over 20 different doctors. At least 8 different hospitals. Countless blood draws. Some MRI's and CT scans. An EEG. 3 awful EMG's (painful). Some EKG's/ECG's. A sleep study. A few ultrasounds. An echocardiogram. And a lot of time spent with Mom in the car traveling to the medical tests and appointments!
But, I can't complain. I learned a lot about the human body during this process. Having this experience with POTS has allowed me to gain an understanding of people and their disabilities and/or physical difficulties that no one else may understand if they didn't have this all going on. Yes, there were plenty of drawbacks, but I'm young. I'm still young. I can bounce back. I have plenty of time to make up for the time lost during this 3 and a half year process!
Well, to get to the diagnosis, I had to go up to the Mayo Clinic in Rochester, MN. I had an appointment with a cardiologist, rheumatologist, and pain doctor. The doctors were very interested to hear my entire story from day 1. It was very nice to have doctors that were willing to listen rather than just attempt to treat me and send me away. They were very collaborative. Always updating one another with information. I had so many tests performed on me. It was amazing that the doctors accomplished so much in just a week (yes I said a week because when you're as strange of a case as me, the doctors want to check off every possibility).
One of the tests I had was called the Tilt Table Test (TTT). For those of you Star Wars fans, think about the end of Episode 3 when Darth Vader is slowly tilted upwards into an almost standing position when he is on the table. This is exactly what the TTT is like. I was strapped onto a hospital bed and hooked up to a few machines that measured my heart rate, blood pressure, body temperature, etc. I started off laying flat, parallel to the floor. I was then slowly tilted upward until I was just about standing, even though I was strapped onto the bed. I "stood" there for about 10 minutes while the machines were tracking my vitals and how they were different from the vitals taken while I was laying down.
POTS means that the body does not adjust to the pull of gravity. It means that while standing or with postural changes, the blood vessels in the body do not open and close as they should. So, the blood in the body pools in the extremities. When it does this, the body tries to pump the blood as fast as it can so it goes to the parts that need more blood like the brain. The heart rate increases. Blood pressure decreases. And the patient gets dizzy and may have brain fogging because of the lack of blood flow. Some get pains throughout the body because muscles and body parts do not get the amount of blood it needs.
When I had the TTT done, my heart rate increased from 78 beats/minute to 145 beats/minute within 2 minutes of me in the "standing" position. My blood pressure didn't significantly decrease, but it still did decrease. Just with this happening to me, my doctors knew that I had POTS.
When I had the test done, I went straight to get the good news from a doctor by the name of Dr. Phillip Fischer. He was the Head of the Pediatric and Adolescent Medical Unit of the hospital at the time. He has done a great deal of research on POTS. When the cardiologist sent me to see Dr. Fischer, I was very excited because I finally had a diagnosis. Dr. Fischer sat down and explained what POTS is, what is the prognosis of the condition, what I have to do to get better, and how he can help me get better. My mom and I probably talked to Dr. Fischer for at least 2 hours! He is literally the smartest man I have ever met. He's one of the kindest also.
Previous doctors always asked me whether I was depressed or was seeking attention from others. They believed that the pain I experienced and the fatigue and the palpitations and every POTS symptom I have was all in my head. How could I be in so much pain and no one was able to fix me? No doctor before Dr. Fischer knew what was wrong with me. All they could do was to give me another medication to add to my already long list from the previous doctors' prescriptions. That never helped me enough. Because those doctors all misdiagnosed me.
Dr. Fischer was different. He did not prescribe me more medications. He always asks me, "What do you want fixed?" This way of thinking is what every patient wishes their doctor to have. I'm lucky that Dr. Fischer was able to diagnose me correctly, or else I would still probably be down the medical mystery path right now. Others may see him as a colleague, a doctor, a mentor, a father, and a friend. I see him as an angel. He has changed my life for the better, just as he has done for so many other patients. He is the accurate definition of a hero in my eyes.
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