God has opened a big door. Im so excited and so scared. Last week, in a huff of frustration, I called Cleveland clinic to get some information on their dysautonomia clinic. When I told the operator we would lived out of state, she told me about a program I could apply for where I could come to the clinic for a full work up, *if they deemed my case appropriate and if they accepted me to the program*. The nice lady took my information and said someone would be in contact. Yeah right….I didnt get my hopes up. The next morning, someone called me. They gave me a chart number and asked me to submit my medical history. I submitted it yesterday. They called me, just now, with a date and a time to come to the clinic. Im going to get “House-ed”.
In the last month I have seen several local doctors who all claim to know about POTS. When I got to all three appointments, the doctors were googling POTS as they talked with me. I would hardly call them experts. The good news is, now I have a local team of doctors who are willing to help. Clueless, but willing. I saw an electrophysiologist (cardiologist who specializes in heart conduction), last week. He wanted to put me on medication to lower my heart rate. Only down side is, it also lowers blood pressure. Mine is chronically low. Doesnt sound like a real solid plan. I asked him how that was going to work, and his answer was that I “may just have to be on permanent bed rest”. Im not satisfied with that answer. Not at all. I basically have been getting similar answers from everyone. I came home, had a good cry and decided to take matters into my own hands.
Cleveland has a clinic dedicated to people with disorders like POTS. They are knowledgeable and publishing research. They seem to know a bit more than google. They specialize in looking for the root of the issue, not just a diagnosis. Knowing this, would give direction to my care. I will know what body system is not working, specifically, and how to optimize function. These answers are they key. This is huge.
So, what I know is, Im going to Cleveland Clinic in May for three days. While I am there, I will be seen by likely, a cardiologist, neurologist, geneticist and possibly a hematologist. They are going to do all the tests. I really dont know specifics yet. I can guess, and none of those tests are fun and I will likely come home sicker than I went in, for a time. So Im scared. Im scared to see my symptoms get worse. Im scared maybe Im putting too much faith into this and it may be a wild goose chase. Im scared I may get answers and may not like those answers. Im just scared of the unknown. But, I also feel so excited. Ive dealt with these symptoms since high school. Im finally being heard. Im so close to closure.
I would really appreciate prayers. Logistically, going out of state for three days, taking off work, shuffling kids…thats hard stuff. There are a lot of logistical details we need to work out. The financial commitment is unknown. We know we will need to pay for three nights of hotel stay and three days of food expense, plus gas there and back. Supposedly, our insurance will pay for the services at Cleveland, but as anyone who has ever dealt with these things knows, thats always a gamble, especially since I self referred. I am trusting God to provide.
For I know the plans I have for you, declares the Lord. Plans to prosper you, and not to harm you. Plans to give you a hope and a future. Then you will call upon me, and I will answer you when you seek me with all of your heart.