Yesterday I had pfts. My FEV1 was down from 93 to 79, and FVC was down from 84 to 72. My doctors and I think it’s hopefully because I had the bronc the previous day. I’m getting new pfts on monday or tuesday so well know by then whether or not it should be concerning.
I had my weekly labs taken and went down to PT. Luckily it’s not on weekends so I can just chill for a couple days now.
Today, Saturday, my Mom and Sister brought my dog up. I took a leave on pass from 1-4pm, so in between my 12 and 4 o’clock therapy. We walked around a garden that’s on campus and then drove to a store and got some gum and chocolate.
Now i’m writing this. I drew a little, working on a new mandala piece and played some minecraft. Probably going to go home tuesday or wednesday which I’m excited for.
I woke up nervously. I had a bronchoscopy today. I ended up being put on call, which meant that I would go down earlier than scheduled. Heading down around 11 instead of 12, I got vitals and answered all the questions.
Luckily I didn’t have to change into a gown down in the Pre-op room, having already changed in my room. I needed to do a treatment since I have therapy at 12, so they had me do albuterol through a nebulizers, which is always fun since it makes me extremely shaky.
The anesthesiologists came in, gave me some relaxing medicine through my picc and rolled me down to the operating room.
Waking up was difficult since they gave me more anesthesia than they do when I get a picc. The procedure went fine, nothing but inflammation. They took biopsy’s and are testing it.
Yesterday I had my dressing changed on my picc. It had bled more on top of the already dried blood. I have skin breakage underneath so they put medapore dressing on it, which is like gauze.
The downside is that I have to get it changed every other day, but that’s not really a problem for me. I like when I get it changed because then it exposes the skin to air.
From the skin breakage there is redness and basically skin breakage. It can get infected and such easier.
I’m working on another mandala and I’m hoping I can see my dog this weekend if my dad or mom can bring her up.
Tried to do school today. Worked a little but eventually I gave up as people kept coming in and out of my room and I was getting super anxious and stressed.
Child life left this on my door:
Which is truly amazing.
Tomorrow I have a CT scan at 1, and Thursday I have my bronc. There’s not a time yet though. I had pfts today, they were the same as last time. My numbers are actually really good, I think my FEV1 was at 90, but despite that I’m still having issues breathing.
I keep getting crappy sleep. Having vitals every six hours makes my night look like this:
5:30-6am- t-com check and another set of vitals
8- Therapy #1
So overall, not good. The t-com is checking my carbon dioxide levels. I have hyperventilation when I sleep and I’m supposed to wear a bipap but I can’t sleep with it on. I’ve tried several masks, had two sleep studies, attempted actually sleeping with it on, but no luck.
The normal level for it is low 40s. The past few days mine have been generally around 45-48 but today it was 50.
My morning afternoon schedule is like this, generally:
Physical therapy(sometimes morning, sometimes early afternoon)
In technicality it is day 4 of antibiotics but I’ve been here for 5 days.
To be honest, today was relaxing. As always sleep is a struggle but that’s besides the point. After my first treatment at 8, I watched a couple movies with my mom while reading.
I ended up finishing The Mark of Athena, the third book in The Heros of Olympus series. Read almost 200 pages and it was awesome. Now I’m on page 40 of House of Hades.
Yesterday I got $30 from doing a Picc study. I got Sims 4 Realm of Magic game pack and have been obsessing over it for the past day or so. Switching back and fourth between that and Minecraft, which made my game crash.
Now on my survival world there are random chunks of mountains near the spawn point. TNT is my friend for this occasion. It might sound cool, you know mountains and such, but it’s more like large 15×15 square chunks of land.
I tried working on school later in the day, Chemistry specifically. For my online school I can get ahead of pace, so from preparing for admission I am still ahead of pace in 4 of my 7 classes, being on pace in 3.
So in the grand scheme of things, not bad but I’d rather be ahead of pace escpecially so I can take a day off for my bronchoscopy.
Typical morning, woke up at 7:30 and did my first treatment at 8. I went down to the gym for physical therapy around 9:30, which took a lot of energy out of me.
My Dad had spent the night and left for work early, so I got some time alone which was nice. I tried to do school, finally adding all of my teachers phone numbers to my phone, but kept getting interrupted by people coming in.
Considering that I’m ahead of pace in five of my seven classes, being on pace in my other two, I tried not to worry too much about it. I plan on doing some more school tomorrow and over the weekend.
During rounds they let me know that im getting a bronchoscopy sometime next week. Im still getting my blood sugar checked two hours after I eat.
Two of my friends visited, which I was grateful for. My blood sugar for my late lunch was at 141, which isn’t good but I dont really know what that means for me.
Besides that nothing else really happened. Thats all for now,
I got my picc! It was around 11:30 when I went back and it went well.
In the morning I entered a study which the hospital is doing to see if there’s certain antibiotics that make pics go bad in the cf community. I get 60 bucks overall which is a nice addition. They just had to take blood from the site when I first got it and then right before I get it out. Also measuring my arm everyday to check for swelling and such.
I got bad sleep, which is typical, especially for the first night. With the IV being finicky during antibiotics and people coming in and out, I didn’t get much sleep. The anxiety didn’t help much either.
Today was my first full day here and I already want to leave. My depression is just being fueled, the stress of school adds to my anxiety. Just everything is… ugh I don’t know.