CF Appointment

Yesterday was my CF appointment. I go to the see my CF Doctor ever 6-12 weeks depending on how my previous Doctor's appointment went. Dr. Z was very happy with my health.

My FEV1, which is the amount of air you blow out in a second, was 1.22 liters. That is 40% of what the predicated amount that I should blow for someone my age, weight and height. For most people they would freak out because 40% is quite low but I am happy with that number. My last visit my FEV1 was 1.1 liters which was 36% of the predicted amount. So I actually increased. Yeah!

They also measure the capacity of my lungs. I don't remember what it was in liters but it was 61% of the predicated amount. That is also up.

My weight was the same. I was afraid I had lost weight but on their scale I weight 110. They would like me to be 120-128 but I doubt that will ever happen. My goal is 115 so I bought some whole milk and and going to drink 3 glasses a day.

Dr. Z was glad to see I was doing well. He wasn't sure he agreed with not activating me on the transplant list until yesterday. He knew I would prove him wrong. I am good at that. He feels if I can keep my numbers where they are I can stay inactive. He is also glad that everything is done for the transplant just in case I don't stay where I am at. CF is so unpredictable that you never know when that rapid decline is going to come.

I don't need to go back to Dr. Z for 3 months unless I get sick. I got to Brigham's in January and they will check to see if I need to be activated.

I will continue to do what I have been doing for the past 3 weeks to see if I can maintain my health. Wish me luck. The longer I can live with these lungs, the more of a chance that there will be a scientific breakthrough with either CF or chronic rejection after a lung transplant. In the mean time, I will keep fundraising so that I will be 100% ready when the time comes. The time may be 5 months or 5 years. Like I keep hearing, there is no crystal ball!