So I woke up today around 9 because I was really tired and didn’t feel like waking up earlier. Then I did my morning treatments and took meds. I went over to annabelles room and we watched some arrested development and we got food before hand from the subway downstairs. I went over to my room and did therapy. Then jot hooked up to my antibiotic and painted. At first I painted on my arm because I didn’t have anything to paint and I wanted to but then I found this banner thing and painted it. I then FaceTimed my friend for a while and now I’m doing therapy again while I talk to her and she practices the piano and I write this. My last antibiotic is at 6 and it takes a hour. After therapy I’ll probably go on a walk or go over to Annabelles room, watch some Netflix, get my antibiotic, pack, and get my picc out.
So today is the cystic fibrosis walk that is held every year. Lots of cf’ers and their family’s/other supporters get together and raise money. It’s called a walk because (shocker) we walk. There’s also food, yum! But anyways that’s not why I’m typing this, I’m typing this to explain why the walk is so important.
70,000 people worldwide have a genetic disease called cystic fibrosis (cf). Cf is a disease that effects mainly the lungs and pancreas. The lungs create thick, sticky mucus that can cause persistent lung infections and pancreatic insufficiency. There is no cure. So the walk is so important because every year there are thousands of dollars of donations that go towards the cf foundation to help find a cure.
So far the closest we’ve gotten to a cure is kalydeco which helps the mucus not be so sticky. It has decreased the amount of lung infections, improved lung function, and even has helped cf’ers gain weight. This is why it’s so important for people to donate because every year we get closer to a cure.
To donate and learn more about cystic fibrosis go to cff.org
As you might know I’m in the hospital sometimes getting iv antibiotics for lung infections. I have cystic fibrosis so that’s what causes the lung infections. So I’ve picked up a few hacks along the way for when your in the hospital.
Bring your own pillows
I’ve learned over the last year that hospital pillows aren’t comfortable. I mean I don’t know what I expected but there actually horrible. So I suggest brining your own pillow, maybe even a couple to be more comfortable or if your going to be there a while.
Bring a Fluffy Blanket!
Fluffy blanket are key, I don’t know why I said it like that so don’t ask(I guess it sounds professional), but as you maybe have guessed hospital blankets are as bad as the pillows. But I do have to say my hospital has a special place where they heat up the blankets so when they bring blankets it’s usually warm and cozy, but the texture is pretty bad. So why not being a fluffy blanket! There comfortable and light weight, and I mean come on… there FLUFFY.
Pack comfy clothes
I always pack sweatpants, leggings, hoodies, and fluffy socks. All things comfy! It’s no fun to sit around your room wearing jeans or even a dress (unless, of course, you want to).
Earplugs or headphones 🎧
Whenever I’m admitted I like to bring these headphones that block out sound when you turn them on, there charged by battery’s. I suggest bringing earplugs, or headphones/earbuds to block out the noise or you can listen to something.
Bring a crock pot
If your in for a week or so bring a crock pot. A nurse actually suggested this to my family. Since the hospital food isn’t the best and ordering out gets expensive my mom makes food that she can put in a mini crock pot she bought, just plug it in and turn it on!
Bring your own toiletries
When I say toiletries I mean towels shampoo and conditioner, dry shampoo for days when your to lazy to take a shower, toilet paper! The toilet paper there is thin and isn’t good, I’ve never brought my own but I highly suggest it. Also a towel! The towels there are very short so it’s better to bring my own.
Life with cystic fibrosis is hard. I mean doing hours of treatments and taking lots of pills can be a challenge, but I get through it… mostly. I live with a disease called cystic fibrosis and let me just tell you it’s a pain in the butt. You see, my lungs create stickier mucus than people without cf and it causes lots of problems throughout the body, the mains ones being lung issues and pancreatic insufficiency.
Having cf Is very lonely at times. Due to cross contamination (passing germs or infections to one another) I can’t be within 6 feet of another cf patient, except my twin of course. It’s also been harder dealing with being different, especially in these past few years. It’s hard to be in hospital when kids my age are in school and doing things they love, when your doing hours of treatments a day while other kids are our doing things with their friends, when I can’t do as much stuff as other kids because I don’t have a whole lot of energy and get tired easily.
Another thing that has just happened the past year when I started getting lung infections and getting admitted. I would mistake my washing machine noise for an iv machine, thinking that whenever I leave a room I have to put a mask on because I have to wear a mask in the hospital. Other things that my health has made me feel is I’m sick of driving, I don’t like going places more often because I just want to be home because it feels like I’m always at doctors appointments, I don’t have an appetite so I hate going out to eat.
Living with cystic fibrosis feels like a full time job. Always having to do something with it, putting lots of time and effort into it, except I can’t get fired from it, that’s the only thing I wish could happen, that it will go away.
So school and cf… it’s a complicated relationship. It’s not just cf I bet it’s something like this with a lot of other chronic illnesses. So since I moved to where I live now I’ve had lots of abscesses. I’m talking about 30+ days of school missed.
In 4th and 5th grade I was absent due to lots of stomach aches because I wasn’t on the right dose of enzymes (I take enzymes for pancreatic insufficiency) which caused me to have bad stomach aches and such. In middle school my lung “issues” starting becoming present and my pancreas problems are fine for right now. In middle school I’ve had to get over 5 procedures/ surgeries and have had 3 hospital admissions and lots of doctors appointments. This was all in one year too… so fun!
Anyways this is related to school because it has been greatly impacted when all this has been going on. This year of school I have been on homebound basically for the whole year and am currently only going to 2-3 hours because it’s all I can handle. Since I’m only going to those classe and am on homebound I’m not counted in the class or whatever, I’m not really sure how it works. But you wana know how many days I’ve not been there according to my school account…
I can’t even believe it right now.
Anyways I’m currently typing this at 1:13am… yes I said am, because I cannot sleep since my body hates me, like I feel so crappy that I can’t sleep, I’m having problems breathing, my mind is racing, there are many reasons. I don’t know what else to say so I guess that’s all for this post unless I come up with another thing about school…
It is now 1:15 and I have come up with another thing, stress.
Do I really need to say any more. There is so much stress from all the missing work and stuff from being absent, that’s why my family decided to do homebound teaching. If you don’t know what homebound is it’s when a teacher comes to your house and gives you your missing work and is there to help you. It is very helpful and I’m glad I decided to do it.
I have a feeding tube because I have cystic fibrosis which is a genetic disease that affects mostly the lungs and pancreas. It’s basically where my body produces too much mucus because my chloride channel doesn’t work as it should which causes the salt and water in my cells to not be even. It makes me get lung infections and also makes my pancreas not be able to produce the right among of enzymes for me to digest food. I have a gtube which is a tube that goes directly in my stomach, it helps me gain weight since I don’t absorb enough nutrients through eating.
Here are some hacks I’ve learned from the last few months!
1.) Dont use your iv pole.
I am only hooked up to feeds at night (around 8 hours) and I have found it easier to not use my iv pole. It’s up to you but an iv pole takes up a lot of room, also the way my bed is. My bed is on the ground (no bed frame) and up against a wall. I moved my bed about the width of my feeding tube machine away from the wall. I put books in between my bed and the wall where I planned to put my machine. Then I set my machine, screen facing up, on the books. Luckily for me there was an outlet right by it. I put a hook right by the pump for my formula bag to hang. Then when I’m not using it my comforter covers my pump and it’s like nothings there! Well except a “random” hook in the wall.
2.) Keep wet wipes by your bed.
I have yet to do this but I had the idea a few weeks ago. Keep wet wipes by your bed so that you can clean the sticky formula you get on your hands.
3.) Get a Tray.
I have found this so much easier to carry up all my gtube stuff to my room with a tray. I bought a tray at Michaels for around $10. It’s so much easier and plus I can carry other stuff on it like my phone and iPad when I go up to bed.
4.) Keep a sharpies at hand.
While this isn’t really a hack it’s something fun to do. I did this for a little while and I still keep a sharpie on my gtube tray for this reason. To draw something fun on my formula bag. It can be things from little hearts to a flamingo. It’s just a thing to put a smile on your face when dealing with things that wouldn’t necessarily be happy.
Use tape to tape your extension tube. I like to do this because it makes the tube feel more secure when I’m hooked up. Plus if you accidentally pull on it it’s pulling on the tape/ your skin not the gtube.
A Gastronomy Tube, or gtube for short, is a feeding tube that is placed directly into the stomach and is used to get more calories.
I have a gtube because of lack of appetite and since I have cystic fibrosis I need more calories than a normal person my age.
My journey starts in January of 2017. I was getting sick a lot and was basically sick the whole year on and off. Due to this I started not having much of an appetite and now I don’t have any. I started losing weight and that didn’t help with my health issues. I was admitted three times that year, each time about one week. My second admission I got an Ng Tube, like a gtube but it goes down you nose and throat to your stomach.
Honestly that was a horrible experience for me. The nurse didn’t use numbing stuff to spray down my throat, I was given no meds. I was gagging and throwing up all night. I couldn’t talk and I couldn’t move without gagging. I only had it for a little bit since they just wanted to see if my stomach could handle the formula rate. The next day it was better and I think why it was so bad is because I didn’t get any meds before hand.
I’m not sure when but we decided that I should get a gtube. I got my surgery scheduled but had to get it rescheduled because of respiratory problems. I eventually got it November 3rd, and I was only hospitalized for one day. To be honest I was in a lot of pain but I was on some meds for it. It was really hard for me to get up on my own but I could walk. It was interesting trying to transition to doing the feeding but I’m used to it now.
I hope that this helped with some awareness about feeding tubes.