CF Appointment 6.17.2020
This week was my 1st in-person CF clinic visit for the year. Thankfully, I was able to have a virtual appointment in April to check in and I had a Trikafta study visit in January, so I've definitely been in touch with my team and staying on top of my health.
*December 2019 was right before starting Trikafta and January 2020 was my 1 month check
If you follow me on instagram, you know that I had to go have a COVID test before I could come into clinic. IT WAS NO FUN!! I screeched like a girl and definitely had tears (mostly due to the test itself). If you haven't seen what they do...google it! Eeek. I felt like they were touching my brain! I'm definitely scarred from that encounter and WILL NOT want to have that done EVER again!
Anyway, it was time for all my annual and every other year testing. What's that term for that? Not bi-annual. 🤷 My day started fasting for my Glucose test. Thankfully the lab tech drawing my blood realized they would be needing 12+ vials of blood, so she only took about half of them and did the second half after my 2 hour wait. I might have passed out on them had they taken it ALL in one drawing. It was A LOT of blood. They check my vitamin levels, liver enzymes, hemoglobin and a few other things I don't even know what it means. LOL.
After my first drawing, I headed over to the clinic for my appointment and the rest of my Trikafta study. I had a sweat test for the study while I waited for my team to start their rounds. (Side note: we still have not found out any results of the sweat tests....the study people are holding that captive for now, but I keep asking!!).
Then, it was time for PFTs. I did 4 tries, and as usual, I maxed out on #3. The third one is always my best, but I like to try for 4 just to be sure.
I then got to meet with the social worker for my annual check in, the psychologist for my annual screening (anxiety/depression questions), the dietician, the respiratory therapist AND my CF doctor.
Thankfully all that stuff is nice and easy. I'm feeling great and don't have any concerns, except fighting with my insurance company (they want to change where I can get my enzymes from...so annoying). Unfortunately this girl has packed on some more pounds. I'm up almost 10 pounds from December 🙈. Oops! I blame my Trikafta munching, bored eating while I binge TV during quarantine and my lack of going to the gym. I'm walking about 4.5 miles every day, but that doesn't get my heart rate up like a good gym session. I am sooooo ready to go back!
I had my second round of blood done in between the team members. I couldn't even take my Trikafta before the blood work since you have to eat something fattening with it. So, I munched on some almonds when I took my Trikafta. I couldn't cough anything up, so I was gagged to get a culture. I got the results from my December culture and I had pseudomonas (still) and stenotrophomonas. Uhh! I'm excited to see how the results from this visit turn out now that I'm on Trikafta.
Once my rounds with the CF Team were done, I headed over to x-ray for a chest x-ray. They were super fast and I was outta there! Overall it was about 3 1/2 hours to get all that done...not to bad in my opinion. My team has it down! I remember years ago that you'd have to plan to be there ALL day and there was a lot of down time just waiting. But my team is awesome! You get all the time you need but don't have to waste an entire day in the hospital.
Drum roll.....here are they results of my PFTs!!
I'm a happy girl!! I didn't think they could improve anymore and THEY DID!! WOW! No wonder I feel so great! I did climb 5 flights of stairs in the parking garage when I left and was a bit huffy puffy, but let's be honest...I was wearing a N95 mask and my cardio work is pretty much no existent right now.
I'm so fortunate that I feel this great and am seeing such amazing results. I want ALL CF patients to see the success that I have had. But, there is still that 10% of patients that can't benefit from Trikafta due to their mutations. We've got to keep up the amazing research and find EVERYONE a treatment until we have our CURE!!
Lastly, I heard from my CF nurse today for a few results. Chest x-ray shows stable, glucose test was fabulous, vitamin D levels and hemoglobin were spot on! Still pending a few vitamin levels and the culture, but so far, so good! Yippee!!
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