I made several visits to the emergency room due to these episodes thinking it was my heart. Initially, I was dismissed as having anxiety. I knew what I was feeling was not anxiety. I have dealt with anxiety attacks since I was 16 years old, I know what that feels like and this was not it. In spite of my disagreement with that diagnosis, I began taking the medicine prescribed hoping they were right and I was wrong. They kept increasing the dosages, but I was still having frequent episodes, multiple ones daily. My doctor finally decided it might be a good idea to take further action and referred me to a cardiologist. I had a complete cardiac workup done, including an Echocardiogram, an implanted heart monitor called a Loop Recorder, and a Heart Cath. The Loop recorder implanted into my chest recorded heart rates as high as 186 bpm and as low as 37 bpm. I had the recorder in for one year and it was removed in February this year. It was thought that I may have Tachycardia/Bradycardia Syndrome meaning that for no reason at all, my heart rate races and drops. There was talk about getting a pacemaker. At 31 years old, that was horrifying news. I wanted a second opinion. I waited a few days, and in those few days I collapsed at work. This was not the first time it had happened. Earlier in the year, my boss took me to the local hospital where I saw another cardiologist. He performed another Echo, an EKG, X-rays, and did some blood work. He said all of my symptoms, the passing out or nearly passing out, unexplained increases and decreases in heart rate and blood pressure, dizziness, nausea, abdominal pain, chest pressure, shaking...all of it was in line with this P.O.T.S. that I had never heard of. He explained to me that there is no cure for P.O.T.S. However, there is treatment and with the proper treatment, many people are able to live normal lives...just at a slower pace. As my symptoms persisted and worsened, I went back to see the cardiologist that told me about P.O.T.S. He ruled out Tachy/Brady Syndrome, and decided to perform an EP (Electrophysiology) Study and a Tilt Table Test. The Tilt Table Test is the test for P.O.T.S. (Postural Orthostatic Tachycardia Syndrome). I prayed the EP Study would show something and a simple Ablation procedure would solve all of my problems, however that was not the case. I failed the Tilt Table Test, and found out that P.O.T.S. was my diagnosis.
My family and I began researching like crazy trying to find out what I can do to reclaim my life and beat this awful, debilitating condition. Over the last year and half, my condition has progressively worsened. In the last 6 months, my mother has had to move in with me to help out. When my episodes happen, my daughter gets really worried because sometimes it is more difficult to wake me up than others. That is too much maturity to expect and too much responsibility to put on a 12 year old girl. Over the last 3 months, I've lost my job. My employer was as patient and understanding as they could be with me, but because of my condition, I was too much of a liability, a distraction to the other employees, and had to miss quite a few days going to doctors trying to find out what exactly was wrong with me. I also am not able to drive anymore, for now. I have lost all independence. My family is doing their best to help out to make sure that my daughter and I are taken care of. However, my family is average middle class. They do not have the means to continue helping us forever, nor the means to pay for the treatment I need to have a real shot at getting my life back. I have always been a very independent and active person, so this has definitely been a humbling and difficult experience.
In the midst of my research and need to connect with other people battling this condition, I joined a P.O.T.S. group and began to talk to other people who have been dealing with it longer. I found out that there are hospitals and treatment centers around the nation that specialize in P.O.T.S. treatment. I have decided that Dr. Kyprianou in Dallas, TX at The POTS Treatment Center is my best shot at regaining my independence, reclaiming my life, giving my daughter her mother back, and being able to provide for her again. The treatment cost is $5000. They do not accept out-of-town insurance and the money is due up front. Five hundred dollars is used to secure the appointment date, and the balance is due upon arrival. Treatment lasts two weeks, three hours a day, 5 days per week. As I said before, my family simply does not have the means to fund treatment and take care of my daughter and me. My mom is already paying some of my bills, as well as my COBRA insurance that is nearly $500 per month. With me not able to work right now, I don't have the money to even get to Dallas, so I need help with the travel expenses as well. The least expensive hotel I have found near the treatment center is $90 per night. I am asking for $8000 to cover the trip, the treatment, and food while we are there.
My family and I appreciate any help that you are able to offer. Thank you for your kindness and generosity. God bless.
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