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quiltfairy

New to this disease..

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It is nice to hear you are getting so much support from family and your doctor seems to be doing the right things. Dealing with a disease is really frightening, especially when you don't have the answers. Prepare yourself for a roller coaster ride, because that is what it like; you will have your ups and downs. 

 

A recent example I can give you for me is that a recent pulmonary function test showed my diffusion rate had decrease by 7% down to 25 which is very low. I was very upset about this as I have been turned down for a lung transplant at 2 centers.  However, my recent Echo shows improvement and a recent spirometry at my pulmonary doctor also showed improvement. I can't figure it out and try not to get too overworked about anything these days. It's taken me a long time to understand a number is just a number and can vary for many reasons. 

 

My hair also fell out all over my body. I am very fair so it grew back but curly. The good thing about this is I was starting to get normal peach fuzz on my face, almost had a light mustache, and that is all gone now! 

 

miocean

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