About October 2009 I started to feel sick. It started with pain in my stomach around my belly button which just got worse no matter what I tried. I went to the doctor, had tests done, nothing. I went to a GI doctor, had dozens of more tests done, nothing. But I just kept getting worse. By the time spring came around, the GI doctor put me on a "low residue" diet, which is supposed to make it easier for you to digest food so it wouldn't bother whatever was causing the pain. I was on that diet for a whole summer: ensure, potatoes, anything clear and liquid, pasta, it was a strange mix of foods. Throughout the time I was on that diet I got weaker and weaker. I would have trouble walking, climbing the stairs, and standing for prolonged periods of time. At that time I also took a 3 month medical leave from work.
In August, with school approaching soon, I went back to my doctor. At this point, I was so weak that my Mom had to help me walk to the bathroom, to bathe, and to climb the stairs. I even occasionally had to use a wheelchair in public because I feared I would pass out. I cannot express enough how frustrating it was for me to be that reliant on others. The doctor recommended that I try gatorade because the diet I was on was likely not getting me enough electrolytes. Within a few days of starting gatorade, I was walking on my own again. While that was a huge step in the right direction, I still had the (now severe) abdominal pain. I had also developed some heart palpitations and severe fatigue. All of which I was told were likely no big deal since nothing serious had come of them yet and nothing showed abnormal on the tests.
At this point we had ruled out the possibility that the pain was GI related, so my doctor suggested a new approach. She said that while she now suspected that the symptoms were "psychological" we could try going to a cardiologist to see if the pain in my stomach was related to my aorta (since it was in that location). Since I knew that the pain wasn't "in my head" and was real, I made the soonest appointment with the cardiologist. This appointment with my cardiologist was the turning point. I explained to him the now growing list of symptoms I had: heart palpitations, fainting and near fainting, dizziness, nausea, weakness, chest pains, hot flashes and chills, fatigue, chronic pain (fibromyalgia), excessive thirst, sweating, and my toes turning white when cold (raynauds). He told me from listening to my story and listening to my heart that he believed there was a physical problem but he wanted to run some more tests (yea, even more). He put me on a heart monitor for what was supposed to be two weeks, but after just a week, he had the data he needed because I was so symptomatic. I met with him again and he explained to me that he thought I have an Inappropriate Sinus Tachycardia and a Dysautonomia. Finally a name for this evil sickness. This explains everything. He started me on a beta blocker and suggested I push fluids and salt, don't have alcohol or caffeine, and take it easy.
In September, I headed back to work and to school with new hope that it was over, but soon found I was wrong. One November day in class, I collapsed at my desk and was brought to the ER in an ambulance. Once they got me lying down I started to feel better, by the time we got to the ER they were treating me as if I had faked it. They put me in a chair and told me to wait there until someone could see me. I was left there for a few minutes and I passed out again. I'm not sure how long I was out that time, but when I came to, I was in a hospital gown, hooked up to an IV, with heart monitors on. They said my blood pressure went too low and they needed to watch me until it went back up. No one offered a reason why that happened, but they sent me home about 12 hours later with a flyer about low bp and instructions to drink more water. Gee thanks guys. I had to leave school shortly after this, because I no longer felt it was safe to drive.
We've since wiggled meds around, adjusted for my low bp, added meds for other symptoms, and more, but I'm still not "better". My average blood pressure at this point was 90/60, way too low to stand for a long time. I continued to work at this point, so I could get health insurance. My mom or sister would drive with me to work and wait until I was done every day I worked. This went on for a few months, but I had to stop going in January because I just couldn't handle the physical requirements anymore. Because I was out for 3 months this summer, I had no more medical leave days and so I had to resign (in early March) until I get better. Clearly what we were trying wasn't working.
Frustrated because I am doing everything I'm supposed to and still getting worse, we decided to try going to a "super hospital" Jefferson for a second opinion on treatment. There I was told that I have a type of Dysautonomia called POTS Syndrome. We (yet again) changed up the meds, this time going off the beta blocker and adding Florinef and salt tablets. That was this month. So far my blood pressure has gone back up (110/70), my heart rate has gone down (60), but I have severe weakness, fatigue, and other symptoms that make it hard to do daily things. At this point I'm frustrated but hopeful. I have a confirmed diagnosis. I have a nationally recognized cardiologist who is treating me, and he said that if he doesn't get me "functional" in a few months, he'll send me to Toledo, OH to see the world's best. I'll just take things day by day until then.
About October 2009 I started to feel sick. It started with pain in my stomach around my belly button which just got worse no matter what I tried. I went to the doctor, had tests done, nothing. I went to a GI doctor, had dozens of more tests done, nothing. But I just kept getting worse. By the time spring came around, the GI doctor put me on a "low residue" diet, which is supposed to make it easier for you to digest food so it wouldn't bother whatever was causing the pain. I was on that diet for a whole summer: ensure, potatoes, anything clear and liquid, pasta, it was a strange mix of foods. Throughout the time I was on that diet I got weaker and weaker. I would have trouble walking, climbing the stairs, and standing for prolonged periods of time. At that time I also took a 3 month medical leave from work.
In August, with school approaching soon, I went back to my doctor. At this point, I was so weak that my Mom had to help me walk to the bathroom, to bathe, and to climb the stairs. I even occasionally had to use a wheelchair in public because I feared I would pass out. I cannot express enough how frustrating it was for me to be that reliant on others. The doctor recommended that I try gatorade because the diet I was on was likely not getting me enough electrolytes. Within a few days of starting gatorade, I was walking on my own again. While that was a huge step in the right direction, I still had the (now severe) abdominal pain. I had also developed some heart palpitations and severe fatigue. All of which I was told were likely no big deal since nothing serious had come of them yet and nothing showed abnormal on the tests.
At this point we had ruled out the possibility that the pain was GI related, so my doctor suggested a new approach. She said that while she now suspected that the symptoms were "psychological" we could try going to a cardiologist to see if the pain in my stomach was related to my aorta (since it was in that location). Since I knew that the pain wasn't "in my head" and was real, I made the soonest appointment with the cardiologist. This appointment with my cardiologist was the turning point. I explained to him the now growing list of symptoms I had: heart palpitations, fainting and near fainting, dizziness, nausea, weakness, chest pains, hot flashes and chills, fatigue, chronic pain (fibromyalgia), excessive thirst, sweating, and my toes turning white when cold (raynauds). He told me from listening to my story and listening to my heart that he believed there was a physical problem but he wanted to run some more tests (yea, even more). He put me on a heart monitor for what was supposed to be two weeks, but after just a week, he had the data he needed because I was so symptomatic. I met with him again and he explained to me that he thought I have an Inappropriate Sinus Tachycardia and a Dysautonomia. Finally a name for this evil sickness. This explains everything. He started me on a beta blocker and suggested I push fluids and salt, don't have alcohol or caffeine, and take it easy. 
In September, I headed back to work and to school with new hope that it was over, but soon found I was wrong. One November day in class, I collapsed at my desk and was brought to the ER in an ambulance. Once they got me lying down I started to feel better, by the time we got to the ER they were treating me as if I had faked it. They put me in a chair and told me to wait there until someone could see me. I was left there for a few minutes and I passed out again. I'm not sure how long I was out that time, but when I came to, I was in a hospital gown, hooked up to an IV, with heart monitors on. They said my blood pressure went too low and they needed to watch me until it went back up. No one offered a reason why that happened, but they sent me home about 12 hours later with a flyer about low bp and instructions to drink more water. Gee thanks guys. I had to leave school shortly after this, because I no longer felt it was safe to drive. 
Frustrated because I am doing everything I'm supposed to and still getting worse, we decided to try going to a "super hospital" Jefferson for a second opinion on treatment. There I was told that I have a type of Dysautonomia called POTS Syndrome. We (yet again) changed up the meds, this time going off the beta blocker and adding Florinef and salt tablets. That was this month. So far my blood pressure has gone back up (110/70), my heart rate has gone down (60), but I have severe weakness, fatigue, and other symptoms that make it hard to do daily things. At this point I'm frustrated but hopeful. I have a confirmed diagnosis. I have a nationally recognized cardiologist who is treating me, and he said that if he doesn't get me "functional" in a few months, he'll send me to Toledo, OH to see the world's best. I'll just take things day by day until then.
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