In CF it can be very difficult for people to gain weight. For me, that’s the exact problem. My weights up and down, but never drastically changes. I also have no appetite so that doesn’t help any.
Peoples produce enzymes in their body that breakdown food. People with CF don’t produce enough enzymes naturally in the body to be able to breakdown food as well so it can cause stomach aches, blockages, and other problems with the digestive system. This is why people with CF have to take enzymes before they eat so that doesn’t happen. It has to do something with the mucus that people have.
For CFers this is the reason why we don’t gain weight easily. It’s because it’s hard to digest the fats and absorb it and other reasons that are probably way more scientific or whatever the word is. It doesn’t matter, the point here is that it’s hard for us to gain weight, which leads to be underweight.
I don’t know why but a lot of people with cf don’t have appetites it’s probably something with mucus clogging something.
I don’t really have anything else to say,about weight or enzymes. Its probably just going to be called Weight-A CF Chit Chat or something like that I’m not really sure yet. Ohh I got an idea Straight to the FACTS- A CF Chit Chat about weight and other stuff(this title is to long) ya sure that’s what it’s going to be.
Day in the life with CF
I’m going to start off by saying ya ya I haven’t really uploaded a lot of art, but I’ve been busy and other stuff that’s boring. Just kidding I’m going to tell the truth. I’m lazy. Even though I’m bored half the time, I’m still pretty busy. Ya I have free time, but have you ever been doing a bunch of stuff so your sick of doing stuff so you just sit around maybe binge watch the office and order yourself a pizza? You get what I mean? I just want to sit around and do nothing with that free time. Thats me right now. I mean ya movie night Fridays coming up tomorrow and pizza does sound appetizing and mouthwatering so what would I be thinking about on a Thursday night. Anyways I think I’m getting very off topic, but who doesn’t love talking about pizza. Am I right, or am I right?🤪
So when I wake up, whatever time it may be, the first thing I do is my treatments. I mean who doesn’t love starting off their morning doing a lot of treatments right? So I go downstairs and into my den. In my den there is a giant cupboard with a mini fridge for my pulmozyne and other stuff, along with all my other medication. I have to do two nebulizers which consist of hypertonic 3.5%, but I’m going up to 7% soon (which is very salty)I also do pulmyzyne. I first take my albuteral, two puffs a minute in between. Then I put my vest on and press start and hook up the tube to the first nebulizer, Hypertonic Saline. I know there all really weird names, but imagine if I were to come up with the names they’d be something along the lines of Really salty stuff that’s in a nebulizer. The vest has two episodes of 10 minutes each so all together twenty minutes total. After around 10-15minutes of hypertonic I switch to pulmyzyne which takes a lot less time so I usually do it til my vest ends. When my vest is done I do two more different kinds of inhalers, and two puffs of each as well.
Usually throughout the rest of the day with vests (I do two more of these) for my second one I just do albuteral and the vest, then for my last one I do albuteral, vest, hypertonic, and another inhaler.
When I eat breakfast I take around 9-10 pills. This includes two tums, multivitamin, something for sinuses, four creon(enzymes) and sometimes Advil or tylonal for a headache or joint pain which I usually take throughout the day for.
At night at dinner I take around 7ish I think. Anti acid(acid reflux), probiotics, more tums, and another four creon. Probably another Advil or tylonal somewhere in there. I also take something when I wake up in the morning for thyroid.
When I go up to bed I take another random pill, nose spray, more recently when I go up to bed I have breathing problems so I try four puffs of albuteral. I also have to take four enzymes every time I eat so that’s fun. It used to be six but they have a higher dose enzyme that I now take so I don’t have to take six every time which is a lot better.
I also have to do physical therapy exercises once a day, but I always forget. I a.so also do speech therapy aka breathing exercises every time I have breathing problems or at random parts of the day.
I hope you learned more today about what’s it like to have cf, but to say the least it can be overwhelming. You need to do all your treatments along with your daily life. It can be difficult sometimes, but it gets easier to mange once you get used to a change in medication or therapy. I was doing all of this before with I.VS five times a day and trying to do four vests but I’m off I.Vs and I only have to do therapy three times, but should try to do four if I’m having problems. My health isn’t better and my pfts are still in the high 70s, but I’m trying to be hopeful so 🤞
So I just go to the hospital. I’m waiting in the blood draw from and there is a lot of people and it’s taking forever.
Monsters Inc. is playing on the t.v. I’ve seen this movie so many times.
I’m soooooo bored.
This morning I had to wake up at 7 so I’m real tired. Plus with going to be at 2am I’m more tired. In the morning I do hypertonic salons, pulymyzynes in a nebulizer. I do this while doing the vest. After this I take take two more inhalers. I don’t eat breakfast a lot because I either wake up late or just don’t eat breakfast since I don’t have an appetite. But when I do that’s when I take all my medications for the morning and then when I eat dinner it’s the same way. I just take all my stuff when I eat.
Just got my blood draw. They did it through the picc which is good, but I don’t want to drink the gross sugary juice. Blah.🤪
Got pfts done. They are the same as when I left the hospital and when I was admitted. I don’t know if I’ll get taken off antibiotics or not. Checked over meds and physical therapy came in pulmonary and also dietion came in and talked to me and Brianna. Everything’s good. At 12:30 so in around 10 minutes I have to start going down to get blood drawn again for glucose testing. Clinic is always so long because I talk to so many people plus with the glucose testing it seems longer. Good thing I don’t have to get a throat culture because I got one a couple weeks ago when I was in the hospital.
I’m going to get my picc out. Finished glucose testing. We’re just waiting to get our piccs out and I’m really bored. During clinic there is usually A LOT of waiting involved. So that’s what I’m doing right now is waiting.
I got my picc out around 3:30 and went out to lunch. It will take a couple days to get the results for glucose testing though.
Before I start I want to say if you want to know more about cf go to cff.org or google works well too.
Besides the struggle of actually having the disease, there are lots of other struggles.So especially right now I’m struggling more with cf. I’m on iv antibiotics four times a day til Friday and have to do four vest treatments in addition. To say the least it is definitely a time consuming disease.
Basically cf is when the cells don’t have enough salt which causes thick, sticky mucus that affects lots of organs and other stuff with your body. Fun I know right?! Sarcasm included, but not limited to.. who knows what, I think it’s just a saying or something along the lines of that.
Anyways some other struggles besides time management is telling your friends why your absent for weeks or months on end or having to just flat out explain what this complicated mess of a disease it is. Either way it’s a process.
Let’s think hmmm some more struggles….Oh Yes! So my hospital that I go to is about a 45 minute drive and keep in mind around an hour and a half two hours worth of driving time there and back. So that’s a thing. I don’t like car rides in the beginning because they are so boring, but having to go to a lot of different kinds of doctors appointments especially right now because I’m sick, the drive time is definitely not ignored.
Ohh and the fact that I get sick a lot. Whether a sinus infection, a normal cold, stomach bug, you name it I get it. A normal cold isn’t to bad, but I usually end up having to stay home for a week or so at a time because it can lead to breathing problems, or because of cf it takes longer for me to get better since my immune system isn’t the best.
Sleep. Don’t get me started with sleep. I am currently typing this is 3 o’clock in the morning because I cannot sleep. I try releasing, deep breathing, belly breathing, just pain out trying to go to sleep, but to no avail, nothing helps. My lungs like me so much they decided to be like hey you? Ya are you going to bed? You are? Good good, I’m just gonna go start up those breathing problems RIGHT NOW so you can definitely not fall asleep til those problems go away. Huh you thought you were going to be able to sleep? Funny joke😂
Showering with a picc. So I have theses disposable picc covers for the shower and there to big for my arm so I have to tape the ends down. It does help a lot more than press n seal if I do say so myself. The funny thing is that in the hospital in the bathroom in a cupboard there is always press n seal. I mean you have to call your nurse to get tape, but if you want to be a risk taker you don’t have to use the tape since the press n seal SEALS it. Hah ya i suck at puns almost as much as a vacuum does.😉 ok I think I’ve PUNished you enough with my puns for today.
Every three months I have to go to clinic. Clinic is when I visit my C.F doctor and talk to them about C.F stuff. In an appointment, which usually takes hours. I have to get a throat culture very time and see a bunch of different people like pulmonary, doctor, people for digestive system for enzymes and weight, sometimes a physical therapist, and plenty more.
My next clinic is Friday and I have to get glucose testing. Glucose testing is where you get tested for CFRD. CFRD is Cystic Fibrosis related Diabetes. I have to get my blood drawn, then drink this liquid that has A LOT of sugar in it, and then after you have to wait awhile and get your blood drawn AGAIN.
I was getting better when I got discharged, butttt now I feel sick again with the breathing problems, and all that jazz. My numbers for pfts were 77 and 75 so they were down 20+ from my normal when I was discharged and had gone down since I was first admitted, but only by a few. So I have that to look forward to. I know right, hopefully you noted the sarcasm.
For all my Cf’ers out there you know the struggle when you have a picc line so you can only get blood drawn on the opposite arm over and over again, Specially if your on Toby so you have to get Toby levels A LOT. So thats my struggle for the day.
Im done really know what else to say but im watching cheaper by the dozen and let me just say WHO HAS 12 KIDS LIKE SAY WHATTT??!!
ALSOOO idk why im doing so many caps I feel like it but im working on a small mural that I will be uploading to my youtube channel TheArtUnicorn.
I got nothing to say. My dog is currently laying on my feet. I mean say cute am I right?