It was a good clinic visit today. It’s always good when they say that you look the best they have seen you look in awhile. I don’t know if I can attribute that to the Symdeko or just feeling decent. I’m not trying to sound like a doubting Debbie but I just haven’t had any major “ah ha moments” to convince me it is symdeko but I should stop that way of thinking. It is obviously working for the better, especially since I haven’t had any of the side effects.
My weight is stable. My lung functions are stable, up 1% to 35%, which isn’t really much but up is up. My lung volume is better which is good. My nurse peeked her head in and said “It’s working, symdeko is working.” I said, “if you say so.” hahaha It’s hard for me to tell really. I haven’t had any of the side effects that people have talked about which is great! My husband has noticed that I have been coughing less in general but still having good coughing fits as usual at times. A lot of times those are dry coughing fits which is usually more my asthma/allergies bothering me. It has been raining off and on so that doesn’t help my lungs either. The weather changing has always messed with me.
I’m not due back to clinic for 3 months as long as I am feeling good and don’t need to see them before then. I am going to Barnes next month for a transplant check up. It’s going to be a quick visit so that’s nice. I plan on heading to KC to spend time with my family after since it is only 4 hours more there. I guess I will count this as my summer road trip. haha. It will be nice to see the family. I’m not staying too long so no time for friend visits this time, sorry. I’ll update after my transplant appointment and my mini road trip.
Side note: I have been going to physical therapy for my shoulder from my fall while coughing and blacking out. It is not fun. It hurts! I’m ready for it to be over with and fixed.
Until next time…