Yesterday was a long but good day. I had the earliest appointment I've ever had at U of C yesterday. I ended up having to leave my house by 6 AM to make it to an 8:30 liver ultrasound. Overall, the morning commute wasn't nearly as bad as we expected. We made it up there by 7:45 and I even got in a little early for my ultrasound! This was great because in order to have my liver ultrasound, I was required to fast for 8 hours, which in turn made me quite crabby.
After the ultrasound was finished, my mom (who is amazing and comes with me to appointments when I need her) and I went to go grab some breakfast - I had an awesome Denver omelet which helped fill me up and make me a more tolerable person to be around. Following breakfast, we headed up to my CF clinic. My original appointment time was 11:30, but thankfully my clinic got me in much earlier! I ended up getting into a room at 10 AM. I ended up seeing my respiratory therapist, my nurse practitioner, and my CF doc so it was (as always) a long appointment. Here's an overview of what was said/done:
Lung Function: My FEV1 was surprisingly unchanged since the previous appointment. Ok, technically it was down 1% but that's just a normal fluctuation. Last time it was at 2.74 L which equates to 87%. This time it was 2.72 L which equates to 86%. I'm definitely thrilled about this result. Due to the few instances of hemoptysis as well as stopping the hypertonic saline 7% (due to hemoptysis), I expected it to be down. I will gladly take that number, however! My FVC was down a bit. It was (not sure about numbers on this one) 140ish% last time, and I was down to 4.21 or 107% this time. I'm not considerably concerned about this change. A surprising one was my lower airways, my FEF 25-75% number. Last time it was at 13% but this time it was up to 39%!! Overall, great numbers. Also, my docs listened and couldn't hear a single crackle in my chest. Very happy about my lung function this time around.
Weight: Officially up to 119.6!! The docs are very happy, and I do believe this may have something to do with my increased lung function overall. I'm putting, and keeping, weight on which in turn makes me healthier.
Changes to my Current Routine: Due to increased heartburn, I'm going to be started on Prilosec. This should help with the heartburn as well as help my enzymes work better, so it sounds like a great plan to me! I'm also going to start on Advair which should (hopefully) help to open up my lower airways and help increase my exercise tolerance, since I have stress-induced asthma. Basically, Advair is a long-lasting bronchodilator with a bit of a steroid in it. I'm excited to see how it works! That said, my doctor wants me to wait until I start my next menstrual cycle since Advair is a category C for pregnancy drugs. She said that if I don't have to be on it for pregnancy, she would prefer it that way. In addition to this, I'm going off of 7% hyper-sal for good, and I'm going to start mixing my own 3%. If I continue to have hemoptysis with this concentration, I will be put on Vitamin K but continue the hyper-sal. My doctors really want me to get the benefit from hyper-sal, as I have never breathed better than when I was on it.
Liver: We should find out about my liver enzymes (previously elevated) and my liver ultrasound in a few days. The tech said that my liver looked really good, but I have to wait to hear from the doctor to be sure.
Overall, fantastic news! This was another clinic visit that made me realize just how blessed I am. I work hard to keep myself healthy, but I could be working even harder - EVERYDAY exercise, that's my goal!
After the ultrasound was finished, my mom (who is amazing and comes with me to appointments when I need her) and I went to go grab some breakfast - I had an awesome Denver omelet which helped fill me up and make me a more tolerable person to be around. Following breakfast, we headed up to my CF clinic. My original appointment time was 11:30, but thankfully my clinic got me in much earlier! I ended up getting into a room at 10 AM. I ended up seeing my respiratory therapist, my nurse practitioner, and my CF doc so it was (as always) a long appointment. Here's an overview of what was said/done:
Lung Function: My FEV1 was surprisingly unchanged since the previous appointment. Ok, technically it was down 1% but that's just a normal fluctuation. Last time it was at 2.74 L which equates to 87%. This time it was 2.72 L which equates to 86%. I'm definitely thrilled about this result. Due to the few instances of hemoptysis as well as stopping the hypertonic saline 7% (due to hemoptysis), I expected it to be down. I will gladly take that number, however! My FVC was down a bit. It was (not sure about numbers on this one) 140ish% last time, and I was down to 4.21 or 107% this time. I'm not considerably concerned about this change. A surprising one was my lower airways, my FEF 25-75% number. Last time it was at 13% but this time it was up to 39%!! Overall, great numbers. Also, my docs listened and couldn't hear a single crackle in my chest. Very happy about my lung function this time around.
Weight: Officially up to 119.6!! The docs are very happy, and I do believe this may have something to do with my increased lung function overall. I'm putting, and keeping, weight on which in turn makes me healthier.
Changes to my Current Routine: Due to increased heartburn, I'm going to be started on Prilosec. This should help with the heartburn as well as help my enzymes work better, so it sounds like a great plan to me! I'm also going to start on Advair which should (hopefully) help to open up my lower airways and help increase my exercise tolerance, since I have stress-induced asthma. Basically, Advair is a long-lasting bronchodilator with a bit of a steroid in it. I'm excited to see how it works! That said, my doctor wants me to wait until I start my next menstrual cycle since Advair is a category C for pregnancy drugs. She said that if I don't have to be on it for pregnancy, she would prefer it that way. In addition to this, I'm going off of 7% hyper-sal for good, and I'm going to start mixing my own 3%. If I continue to have hemoptysis with this concentration, I will be put on Vitamin K but continue the hyper-sal. My doctors really want me to get the benefit from hyper-sal, as I have never breathed better than when I was on it.
Liver: We should find out about my liver enzymes (previously elevated) and my liver ultrasound in a few days. The tech said that my liver looked really good, but I have to wait to hear from the doctor to be sure.
Overall, fantastic news! This was another clinic visit that made me realize just how blessed I am. I work hard to keep myself healthy, but I could be working even harder - EVERYDAY exercise, that's my goal!
Yay for good news!
ReplyDeleteHow do you mix your own hypersal? Does that mean you just water it down?
Woo Hoo! I was thrilled to get your text and even more thrilled now that I have seen the details! Love you!
ReplyDeleteYou should ask about going on symbicort instead of advair...my Dr and pharmacist said that is the one they like to put their pregnant patients on. And I am still so excited about your awesome clinic day!
ReplyDeleteThanks everyone!!
ReplyDeleteKristin, pretty much. I'll be taken 7% and mixing it with .9 regular saline. Then I have to use a needle to take out half of it...it sounds like it's going to take a bit to get used to, but hey if it will help me breathe, that's what matters!
Bridget, I love you too! Thank you :)
Cindy, for some reason blogger thinks your comments are spam recently :( . I should definitely ask them about that, then. I will have to send off an e-mail to my nurse practitioner! Thanks for the advice!