Wednesday, December 10, 2008

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!

2 comments:

CowTown said...

You go!! That's awesome news.

Why are our numbers so similar so much of the time? It's kind of weird isn't it? I'm also at 110 lbs, shooting for 115, as well as 38-42%. Very strange.

Yes, keep those numbers strong and I hope you hang on there for a long time! :)

Erica Violette said...

Steph,
I go see Dr. Z on Thursday and I am going to find out if it's okay for me to go to your fund-raiser in January. I am glad you are hanging in there - I think of you often!