My CF Routine

So I woke up, feeling pretty crappy. Breathing problems, headache, gi problems and such. When I first get up I get caffeine and then go into my den and start therapy.

I do the vest and take a few inhalers. Right now I’m in the middle of cleaning nebulizers so I didn’t do those today, but I usually do. I then take my morning medications. Usually I take Advil for headaches and joint pain. I also take calcium, Prilosec, and a few other pills.

I usually get crap sleep, but I had a panic attack and didn’t fall asleep til 2-3 am. I try not to focus on cf to much, but it is a big part of my life.

I usually do school for a few hours and then eat lunch, where I take 4 enzymes.

I fill up my pull container, which takes a little bit to do.

Something else I have to do is clean nebulizers. I use a machine that cleans baby bottles I think and put them in soapy water. Once the machines are done running I have to empty the nebulizers onto towels and flick the water off. Making sure to wipe away all of the water in the machines so they don’t get moldy.

Since my digestion system and pancreases and what not hates me, I’m usually constipated, so what I do is put mirialx through my gtube. I get out a new syringe and extension tube. Prime the line with water and connect it to my gtube button. I mix 2 cap fulls of mirialx with water and put it in the syringe. I shall have to end up doing around 5 syringe fulls of the liquid. After that I rinse the cup and fill it up a little with water. Put around 2 syringe full of water, since one, I don’t drink enough water, and two, for mirialx to actually work I need to have lots of water.

I also do tube feeds at night. I’m still struggling with nausea so I haven’t been able to do them.

Anyways That’s all for now,



Hospital Day #7

So a lots been going on the last day or so. Yesterday I had thrown up around 6 times. Dry heaving, that fun stuff. I basil you slept all day yesterday. My heart rate was steady around 125 and my temperature is 100.9.

I’m still losing weight and so I feel weak. I did do tube feeds, but used a boost breeze instead of my peptamen. I threw up this morning and continued to dry heave afterward. I got an ultrasound and nothing showed up. I also got tested for celiac and ibs, both negative.

My blood sugar got tested and was normal also. There testing me for c dif and May do a gastric emptying test, which I’m hoping they do. It tests for Gastroparesis.

I’ve been hooked up to I’ve fluids since I haven’t been taking anything in.

I’m planning on doing a marvel movie marathon. Yay.

I don’t really have anything else to say. Thanks for all the support.

That’s all for now,


500 Posts

So many posts… the time I’m uploading it’s more than 500 ports, but you get the idea. I can’t believe I’ve uploaded 500+ posts, I wonder how long I’ve spent on this blog..? 😂

My gtube set up

Since I recently just got a gtube I have added many things to my pharmacy of a nightstand. Today my mom took the stitches out so it hurts a little more today.

I always had a decent amount of health stuff on my nightstand and so I have an updated collection. I have a box full of my arubica, inhaler,spacer, a pencil, and some nose spray. For my gtube stuff I have some tape which I use to tape down the tube onto my stomach. Then I have alchohal pads to clean off the tape residue. I also have my extension tube and syringe. I replace both of these once a week.

The actual pump and stuff is on an iv pole. I use a towel every night to cover the light from it. I hung up my hope beads and right now I’m not running feeds, but there would usually be a feed bag hanging up here at night.

How I set up my gtube is shake the three bottles of formula, then pour them into a bag. I take that upstairs and I hook up the tube through the pump and prime it.

I hook up the extension tube to the actual gtube button on my stomach. I open the tube and put the syringe at the top, unclamp the tube and flush it. Before unhooking the syringe I clamp it. Then when I’m ready to go to bed I hook up the tube from the bag to the extension tube, unclamp, and press run.

That’s all for now,


Hospital Diaries #5

Today was another chill day. I woke up around 7:30. I did therapy at 8 and ate some breakfast after. I’m planning on doing this challenge called draw this in your own style. It basically is an art challenge where you take someones drawing under the hashtag draw this in your own style and draw it in your own style. Ill try to upload it soon, but I’ve barley even started the drawing.

I of course played sims. I keep forgetting to upload pictures of what I build and redo but always seem to forget. Right now i’m mostly focusing on apartments and redoing them, but every so often Ill build something.

Today i was mostly hanging out in Brianna’s room. I ate to many resses, but they are delicious.Today was mostly watching the office, eating snacks, and playing sims.

My friend, who I’ve talked about before, Vanessa is visiting us at 7 so i’m excited and happy to see her. Were probably going to walk around a bit.

Brianna, my dad, and I walked to this one side of the floor to see outside to a parking lot because there was a car show. Were not able to go down because of germs, but we get a gift bag. Our dad went down before he left because people he works for were there and stuff. After that we went don and satin the courtyard. Ist a butterfly court yard, but there were no butterflies sadly. Were still planning on getting a bronc and me getting my gtube next week sometime.

Thats all for now,


Hospital Diaries #3

I got the picc today. I woke up, they came in around 8 and I had to roll down my iv because I was on fluids. When I got downtown there I didn’t wait to long for everything to happen. They asked me questions, I changed into a gown, got my vitals taken and then someone gave me some relaxation stuff before rolling me back to the or. For most of the day I was groggy.

I talked to phycology about my increased anxiety. I went and walked around a bit for pt.

I officially have no ivs. Yay. Hopefully I get better sleep tonight since I won’t be hooked up to fluids and don’t have an iv. Last night I got like 2 hours of sleep. I also had to get my blood drawn at 10:30 and later at night for tony levels. The person who drew it was really good, which is always good. I’m glad it’s The Weeknd so I get to chill.

The doctor came in and said we would be gets bronchioles scopes either Tuesday or Wednesday and that I would most likely be able to get my gtube at the same time. I’m really nervous to get it and know I’ll be freaking out which is always great.

That’s all for now,