My CF nurse called today to check in and see if I needed another week of IV antibiotics. I told her I’m as good as think I’ll get and that another week of IVs won’t do anything. My doctor wanted me to do home spirometry (lung functions) and to send it in so he can see it. My FEV1 was 32%! So I’m back up to my baseline between 30-35%. My last days dose of IVs will be my 10pm dose tomorrow night. I can then deaccess my port and be free!
I’m not as tight or wheezy as even I went into the hospital. I was up at 4am wheezing so I did a breathing treatment and stayed up until my 6am dose of IVs. I’m also not as short of breath so I’ll take it. I’ve been able to do more around the house, like cleaning. I do still have to take breaks like I usually do but I’m about to push through.
I’ve had some people ask about lung transplant and where that stands with having my lung function having been down to 21%. I’m still not ready for transplant yet. To be reevaluated for transplant, my lung functions would have to be 29% or under (steadily) along with other things like being resistant to IV antibiotics meaning they are having no effect on my lungs. IV antibiotics already are not as effective as they used to be when I was younger. I don’t bounce back like I used to. There are still different antibiotic combos they they can try for me with the hope they will help. We aren’t out of options quite yet.
Like I said before, you learn to adapt to lower lung function as it slowly goes down. The reason I noticed such a difference in my breathing when I went to the hospital was because it had dropped like 12% rather quickly. Yes, new lungs seem like a solution but there’s more to it than just getting new lungs. It’s a lot of hard work getting listed and enduring transplant. I will cross that bridge when the time comes. I’m still not mentally ready for transplant. It is so scary! It’s a journey for sure. Yes, I would get ready real quick if I declined quickly and had to be listed sooner than I would like. There are a lot of moving parts that have to be figured out when I do list for transplant. We will figure it all out in due time though. I know I have a lot of support with my family and friends. I will make it!
I have a telehealth appointment with my CF doctor on Friday the 20th for a check up after finishing IVs. I will do lung functions again and send them in the day before my appointment for his reference. I’ll update after that appointment.
Oh, and I got word that I was approved for Dupixent, the asthma medicine. I have an appointment with the allergy doc/nurse on the 18th to do my first injection in the office so they can teach me how to do it. The initial dose is 2 injections and then it’s 1 injection every 2 weeks. It’s in a pen injection like an epi pen is. I’m really hoping this helps my asthma and I won’t get as short of breath. We shall see.
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 upwas 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
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.
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 →