Clinic was long, as usual, but it was not terrible. I got to have a pretty long meeting with my doctor, Dr.T. We don't always get to see her, so it's nice when we do.
My lung function is 25% (0.89L) which is up 3% from last time. My saturation was really good, which was a bonus. Dr.T did not know about the delay in my being listed (she got note from TGH that I was already on the list....since they have not received the memo yet). She was disappointed for me, but expressed that it was good to get this out of the way now. She also expressed that at this point my care was about keeping me stable enough to get to transplant in the best state I can be in. Meaning there is little they can switch around or try, it's just about communicating with me and asking me what I feel about staying on IV's or seeing if I can get off them. Sometimes, Dr.T told me, taking 3 steps forward, and then 4 steps back off Iv's is not worth the trouble. Especially since once I am listed, being a status 2, 6-8 months wait and I will have those new lungs. I expressed that I wanted to stay on the IV's, and she agreed. Especially since the next 8 weeks before I am listed we want to be super careful as to not let me slip too much.
So, I will stay on these IV's for as long as I want (or need) to stay on them. So far I have been on them more than off them (in 2009) and that is a strong indication that I may not be able to get off them. This is no news to me. I spent 45% of 2008 on IV's.....
The visit was good. Dr.T was reassuring that things look good, not to panic, to take it easy and just wait. It made me feel that I am being watched and that she is not worried. I am calmer when I see that she is calmer. Wait, be calm, it will happen, just wait.
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My New Treatment: O to the 2
9 years ago
3 comments:
Your words seem calmer Nat although I am sure that it is hard to stay level right now. So much is going on for you right now. I can't believe that you are almost to the point of meeting your daughter. Beth has done so wonderfully with your pregnancy. One step at a time. Your daughter will be born and then you will be listed and everything is going to work out great. Keep on keeping on lady.
Even though I don't have much time to comment anymore I wanted to let you know I am following along and cheering for you. You are a brave soul, I can only imagine how hard it must be to live with CF and be dealing with all this at the same time as your surrogacy. I wish I could package up a boost of encouragement for you, but since that's not possible, please know that there are total strangers in the world praying for and thinking of you.
You've come a long way, no reason to get off the IV's now if it make you feel more comfortable. Your attitude is encouraging and I know that everything is going to go super duper for you. Just keep that head up and keep trucking until that fresh new set of lungs become available!
Ronnie
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