Yesterday I went to the NYU Medical Centre to have an assessment at the FD Centre. Dr Axelrod is the leading doctor in the world in this condition and has been for nearly 40 years. Dr Kaufmann is a researcher into the condition and has been part of the team for just over 2 years.
Let me get this out of the way now. I am sick of doctors. I like them mostly, but I am sick of hearing the same thing and not having many answers. However, yesterday I wasn’t expecting answers, I just wanted to show them how well I am doing.
Dr Axelrod was very warm and easy to talk to. She wanted to know about my life and my medical history. She touched on sensitive issues and I cried and she praised me on what I have achieved. She weighed me, tested my reflexes and my sense of smell and touch. Dr Kaufman also tested my reflexes as well as my blood pressure and my respiratory system. The blood pressure testing involed lying on a tilting bed and I had to be moved to a standing position and lying down position. To check my lungs I had to breath into an air bag and hold my breath in and out.
Both Dr’s were able to assess me on t he spot and they came back with a surprising fact. I have high blood pressure. At sixteen I was diagnosed with low blood pressure and have been on medication for that for over ten years. They informed me that peoples blood pressure can change over time and while it may not be a problem now it could lead to a problem in the future. They want me to address this now and this can be done by reducing my medication and sleeping on an angle to have the blood move. Sleeping like this is fune by me, changing my medication is another thing. Dr Kaufman informed me that the change could cause lightheadedness and weakness for a little while until I adjust properly. Could this be an issue? I don’t know, but I think I could try it and Dr Kaufman knows my doctors and they will follow the progression of the change.
My respiratory system is fine. I have no problems there and that is important because these issues can be fatal. So I am relieved to know this.
They can’t fix my walking but they did say that the condition may not be degenerative which means to me that my walking could be maintained, though this does confuse me.
They have found the mutated gene which causes FD and they will be running tests next year to see if they can fix the gene which could lead to…I don’t really know and I don’t want to jinx it. I could take part in this test which lasts three months. Three months in New York. Or I could wait for others to do the testing and consider this later on.
During this whole time I wanted my parents. Listen, I was fine on my own and I still am, it just would have been comforting to have them. But David was there and that was good enough. He picked me up from the hospital and we discussed what I had done and he answered questions. I really appreciated it and I don’t know how to thank him.
During the evening I saw the movie Kick-Ass with Kaitlin and it was hilarious! I haven’t laughed that much in a long time. And I got to try cookie dough balls which were covered in chocolate. They were ok but they could have been bigger.
I have so many thoughts going through my head right now. And I am a little sad today. I don’t want to go home, I just feel…flat. Maybe seeing Billy Elliot tonight will change that.