Today I had CF clinic. Thanks to Trikafta my weight is up, not that I want it to be. haha My lung functions are holding steady at 37%/1.06 L FEV1. In October they were 36%/1.02 L FEV1. It is unclear if I will gain any lung function on Trikafta, only time will tell. I’m just happy if I hold steady and put off lung transplant as long as possible which gives us more time to fundraise. The hope is that Trikafta will extend the time between exacerbations (lung infection) needing IV antibiotics. Continue reading
Hello all! I have been in a slump when thinking about transplant stuff. It is just so overwhelming. I feel like when I was writing “my book”/my life story (link at the top of the blog page for all chapters) I would write like crazy and then take time away from it for awhile then go back to it. That’s how I feel about thinking/doing things for transplant because it is so overwhelming. There are so many logistics that go into it that it makes my head spin. Fundraising is just one part of the puzzle and it’s a big one. Funds raised will help with housing in St. Louis after transplant, house bills in TN while away in St. Louis, food, parking, hotels, hospital bills, medicine copays and much more. There are things that will pop up that we didn’t even think of I’m sure and we just want to be prepared as much as possible. We will have to be dealing with me, my health and recovery and don’t want to worry about the financial part of things. I just want to thank you for all of your support and love over the years. Continue reading
I have been on a bit of a whirlwind road trip. I started off my road trip visiting my friend that lives outside of Chicago for a few days. Next up was the drive to St. Louis for my transplant clinic check up. My check up was good. They drew 14 vials of blood, took a chest X-ray and I saw the doctor. I’m doing well, sounded good. I didn’t have to do lung functions because I was able to send my last ones I did at my clinic. I am scheduled to come back in 6 months.
The last bit of my road trip was heading east to Kansas City to see my family for a few days. I will then head back home on Monday. All in all it was a good check up and has been a good road trip, except for the boring driving part. Haha
Until next time…
A few months ago I shared about the new CF drug Symdeko (Symdeko post). After much tossing around of the idea of taking the new drug I finally decided to give it a try. I started the drug 3 days ago. It is twice a day and I have to take it with a meal/snack containing a good amount of fat to help it absorb. Continue reading
Interesting title? Let me explain. I was at a friends house on Sunday evening sitting on a bar stool at her kitchen island chit chatting with her while she was cooking/baking. Along comes a coughing fit. A doosey one where I see stars and shake. Well this one went a little farther and I blacked out for a second and fell out of the bar stool straight on my face. Yes, you read that right. Pictures below… Continue reading
Now that I am actually getting to the point of listing it is sinking in how sick I really am. I am sleeping about 12-15 hours a day and even more if I take a nap. You may say how is that possible or wonder why I am sleeping so much. My body is very worn out just from working to breathe and then there is the coughing on top of that. My body is sore from all the coughing I do. Continue reading
I arrived to St. Louis Sunday evening. My sister joined me early Monday morning since she was coming from Kansas City and me from Knoxville, TN. I must have someone (caretaker) with me at all my transplant appointments, it’s part of the deal. Luckily I have people to rotate, haha. Continue reading
We had a fantastic fundraiser yesterday. We played singo which is like bingo with song titles. You listen to 30 seconds-1 minute of a song and if you have that song on your singo card you mark it off. You get a singo with 5 in a row like bingo. Winners received gift cards to the restaurant where the event was held. Next up was trivia. That was a lot of fun as well. The winners also won gift cards which were donated. We also had 16 raffle baskets, one of which was custom made cornhole boards. I’d say you had lot of fun things to do yesterday.
We had a great turn out showing lots of love and support. It was greatly appreciated. I had set a goal for myself of $1000. Well that was surpassed twice. We raised just over $3000!!!
The money will go to the specific savings account we have set up for the lung fund to help cover medical costs now and for the future transplant costs.
We are truly humbled by the outpouring of love and support shown to us. Thank you so very much for every donation.
Until next time…
I had a CF clinic check up yesterday and all is good. My lung functions are up 3% to 36% from 33%. They said I sounded good and looked good. My BMI is great at 24, yes I have some extra weight to help fight off infection. When I’m sick I can lose weight fast because your body takes the calories you take in to fight off infection. Not that I feel comfortable with the extra weight but everyone says, “you look so good,” so I’ll take it I guess. If the extra weight helps me stay “healthy” (whatever that is) I try to deal with it the best I can. Continue reading
I had an MRI on December 22nd and didn’t hear anything until after the holidays. The results are that I have a minimal C6-C7 impingement (pinched nerve) in my neck. There was nothing of significance in my upper back to give reason for my lung/chest pain on the MRI. The lung/chest pain is most likely from pulled muscles from coughing so much and so forcefully. I am awaiting a referral to a neurosurgeon for the pinched nerve in my neck. I have had the pain in my neck along with headaches for about 6 months. I’m happy to have an answer about my neck but bummed that we really don’t have any concrete answer about my lung/chest pain. The lung/chest pain is slightly better, especially the fractured rib site, than it was when it began. Now it seems that the rest of my muscles in my chest are sore from compensating for the pain which is no fun. I see a neurosurgeon on a February 2nd about the pinched nerve. More on that later.