Overall, I haven't reacted too bad to Orkambi. Coughing more (which keeps me awake at night), my chest feels tight and I get out of breath quickly. But no fevers or anything. My energy and appetite have been good too. I started Orkambi 10 days ago and I knew there would be an adjustment period. I was excited to go for a walk last night. I walked a mile with Andrew, very leisurely. It took me a while and I needed to stop 3 times to just catch my breath, BUT I have heard of people getting so sick they are stuck in bed while they adjust. So, I will take my breathless walk as a win for now. We just have to wait and see how my lung function, weight, and liver look in November. My doctor is testing my liver in November, instead of waiting the standard 3 months to check, since I have a history of liver issues and Orkambi is tough on the liver. If I have any signs my liver can't ever keep up with it, I will have to stop the med. Orkambi isn't worth a liver transplant. So let's all hope my lung function and weight are up and my liver numbers are in a good range!
So much has happened in the last 2 weeks. I'm excited to FINALLY tell everyone that I was asked to guestblog on the National Cystic Fibrosis Foundation website. They have a CF blog and CF patients, parents, and others can guest blog about CF topics. They wanted me to share about my husband and I's experience house hunting and how my CF affecting our decisions. So please make sure to jump OVER HERE and read it! I hope to write more for the CFF site in the future, I will keep you all in the loop if I do :-)
I can't believe Halloween is almost here!!! Andrew and I started dating on October 27, 2012. Andrew and I met in August of 2016 during show choir. Apparently, he liked me and I was oblivious. I wasn't looking for a relationship and just had no clue. He asked me to a show, but I had to work. He asked me to lunch and I asked a friend if she wanted to join. oops. Poor guy couldn't get a brake until our show choir performance that night. He was Dr. Frankenstien & I was a zombie during the monster mash song. Yes, I looked like the picture to the right when Andrew asked me out for the 1st time. True Love from then on... lol. This year we are very excited to have a house and not be living in an apartment for the 1st time together! We get to hand out treats and deck out our yard like a cemetery for Halloween night. I can't believe how fast this year flew by, it's almost the end of the year. I decided before 2016 ends, I'd host one more fundraiser for the Cystic Fibrosis Foundation (where the money counts toward the CF Princeton Walk).
Why not do a Rip's Fundraiser?!? Rip's is a local restaurant/tavern in Ladd, IL that is known all over for their outstanding fried chicken dinners! We are selling tickets in advance for the event. Tickets are $8 a piece. Include 1/4 (light or dark) chicken, fries, bread, and crispies (if requested). We need to sell a minimum of 300 tickets for the event. The night of the event is November 21, 2016 and you must bring your ticket to the event. It must be purchased in advance. If we sell our minimum required, we will raise a minimum of $1200 for the CFF. Plus, we have a bake sale and other things! You don't want to miss it! To see all info or find out how to get tickets, please see the event on my Cheriz:My Life with Cystic Fibrosis Facebook Page!
I'm so excited to see how clinic on November 6th goes & then host the fundraiser on the 21st!!! What are your plans for Halloween? Got a great fundraiser idea? Share it with me! Thanks!