Donna F Posted January 31, 2007 Report Share Posted January 31, 2007 Hi allJust wanted to say thanks to everyone on here, you guys give me hope where no one else is. I was taken by ambulance on the 24th to the local hosp and admitted, they couldnt get my pressure up, i have been on Xanax, Florinef, and a BB before, now they lowered my BB cause of press and added Midrodine, I havent improved, just got out this morn. I had a TTT in there and assuming they dont perform those often 4 min into the test i told the tech to let me down and she just looked at me then i heard code blue and well needless to say i failed the test, and almost failed at life! Scary they lost my hr in the 20's, so I am very scared now, I have been told my disease is progressing too fast and that basically they can do no more and yet i am bed bound and cant do anything. Should I just throw in the towel or has anyone else been told they were prog too fast and well I am just afraid not for me but for my kids. God what is it gonna take to get more people to know and recognize this as a real disease? I mean most docs i saw except for a min few asked me to explain my disorder! We need to find a way to make this more known, somehow , I am afraid I am not able as of now, but I want help most of us have kids who may have this we need our local docs to have more knowledge.We dont need to be told to go across the world and our local phys. say I have heard the name before, god it infuriates me because I am having to prob move in with my mother god, is it asking too much to just want to live your life, anyone know if i would prosper from Mayo, which was mentioned?Pray for my family and myself, and i am doing the same for all of u, and thanks to all for ur imput it really makes me feel not so alone!Donna F Quote Link to comment Share on other sites More sharing options...
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