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 🤞