So Sad

Well today I went for my research study stuff.  They do 2 pulmonary function tests which were 27%.  I am two points down from two months ago.  I have dropped 12 points over a 2 and a half year period.  With the research study I use a seperate oximetry machine.  I just had a MD appointment on the 31rst.  We discussed a lot of stuff including disability and  the possibility of a lung transplant if my FEV1s stay in the 20s. Well 2 times noe and dropping quick.  I am also losing a lot of weight.  I have gone from 190 to 126 over the last three years.  I am going by my scales but the weight loss is the same.  With this study I may or may not be on Dalyresp.  I do know that it can cause weight loss.  I can't imagine it is making my  percentages drop.  The nurse in charge of my drug study was very concerned.  She is married to one of the docs so she has a good repoire with all the others including mine.  She spoke with him and is adding the additional info from today.  Plan was he wants to see me in a month.  Unable to get an appointment until 2 months.  I will have another set of spirometry tests using the original machine.  I will also have another set prior to that appointment from the research study.  Maybe it's a bit much...Plan is to talk with him about prognosis at the rate I am declining.  Probabally will arrange to go to Duke University Hospital to see if they missed anything.  Will talk to the powers that be about lung transplants.  It would happen there. 

So sad.  I just cry at the drop of a hat.  My little boy was going into the high school with my husband to see the pretty girls.  She is a cheerleader.  I have never been the social one for my daughter.  I never was cheer mom etc.  I cry for what I should have been,  what I want and wanted to be, and for what I'll never be.  At least this is my thoughts over the last few hours.  Plenty of other examples.

With my depression and bi-polar stuff.  I just don't want to hurt.  In some ways I just want to disappear, but "I don't want to miss a thing".