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Abigail Lupien
Professor Joann Deiudicibus
English 170 – Writing and Rhetoric
February 5, 2021
Technology as a Cystic Fibrosis Patient
Technology is, essentially, anything created with scientific backing, to improve a process or life. I believe many people today think of the word “technology” as a synonym for “electronics,” but this is not the case. I always knew that “technology” meant more than just electronics.
I have a genetic disease called Cystic Fibrosis (CF), which affects my lungs – people with Cystic Fibrosis have mucus in their lungs that is much thicker and stickier than most people have, this can cause us to cough a lot more than many people and have trouble breathing; it also affects my digestive system, weight gain, and for some people also can affect their reproductive system. There are certain technologies that I have been around and used because of my Cystic Fibrosis that many other people probably have not seen. These technologies include both machines and medicines. Medicine is something that, while many may not think of it as technology, is a kind of technology. Every medication and treatment that we have in society today is a type of technology because it was developed at one point to cure or aid some health problem.
The function of the pancreas is to create enzymes to break up food that we eat and allow us to absorb the nutrients in the food before our bodies get rid of the waste products from the food. Some people with Cystic Fibrosis have an issue where, though their pancreas produces these enzymes, the enzymes may not be doing their job. Because of this, some Cystic Fibrosis patients, including myself, need to take supplementary pills before they eat to help them digest their food. The pills I currently take are called Creon 36, and I just refer to them as “my enzymes,” because that is what they are. There are other, more common types of enzyme pills that even people who do not have Cystic Fibrosis take, such as Lactaid, for people who have trouble digesting lactose (lactose intolerance). Enzyme supplement pills are a type of technology that help people digest their food, and I have been taking them for almost my whole life.
Another one of the earliest pieces of technology I remember is my breathing treatment. There are two breathing treatments that I use together, one is a physical treatment and the other uses medicine. The physical treatment is a vest that I wear, which is connected to a tube and fills with air – this is meant to shake loose some of the sticky mucus in my lungs. I have been doing this since I was a young child. I do remember when I got it and learned how to use it. It was kind of exciting when I was a child because I had never seen or felt anything like it. Before I got the vest, I used to have to lay across my mother’s lap and she had these rubber things – which I struggle to describe – that she would pound on my back and chest with; this process had the same intended purpose of loosening the mucus in my lungs.
The medical treatment I have is called a nebulizer. Some people that do not have Cystic Fibrosis use this to treat issues such as asthma. This is a machine, also attached to a tube, with a mouthpiece. Liquid medicine is poured into the chamber on the mouthpiece, and the machine vaporizes the medicine which is then inhaled. I use two different medicines with this machine; one called ipratropium bromide, and the other called Pulmozyme. As you can see, “pulmozyme” has the same suffix as the word “enzyme,” this is because pulmozyme is intended to break down the thick mucus in our lungs.
Since I was a child, I have had to go to doctors every two months. They would physically examine me and do tests, as well as ask a lot of questions. One of the tests the doctors do is called a Pulmonary Function Test (PFT). This test consists of the patient breathing into a tube which is connected to a computer; the computer records the patient’s lung function based on how they did on the test. The way it works is that, after doing a few relaxed breaths into the machine, the patient inhales as much air as possible, then release this air as quickly as possible, and the results tell the doctors how well the patient’s lungs function.
One issue that many CF patients struggle with is weight. We struggle gaining weight and are very underweight. I was no different when I was a child – I was very under-weight and I had to get a feeding tube. This is a plastic tube that was surgically implanted directly into my stomach. During the day, I still ate my regular meals, but at night, my mom – who, thankfully, is a nurse – would hook up another tube that would bring a dietary supplement such as Ensure into my stomach from an IV-type bag through the feeding tube. Then, in the morning, she would disconnect it and I would be free to go about my usual day. This created some mishaps like when the tube disconnected and some of the liquid came out onto my bed. When I got the tube removed, the hole was supposed to close on its own, but mine didn’t so I had to go into surgery again to have it stitched.
When I was younger, my parents got divorced, and the back-and-forth between their houses made it hard for me to keep up on my breathing treatments, and because I missed my treatment so many times, I got a lung infection. I was briefly hospitalized and had to get something called a PIC line, which is a type of IV that, instead of simply in the vein, goes through the arm directly into the patient’s heart, so the medicine is pumped into the whole body. PIC lines are another type of technology that is used on non-CF patients as well – my friend’s mother had said she had had this during one of her pregnancies.
The most recent, and possibly most important technology I will mention is TRIKAFTA. This is a CF medication that is currently in development by medical researchers. I have been involved in this research by being a participant, taking the developing medication. I do not know how long I have been involved with this medical study, but it has changed my and many others’ lives. I was part of the study during the double-blind phase, where nobody knew if I was on the real medicine or the placebo; and we are now in the phase where all participants are on the real medicine. I have gained weight and have improved lung-function since beginning this medication. I have encountered a lot of technology during this study including PFT (which I mentioned before), EKG, and sweat testing. This is the best treatment for Cystic Fibrosis that there is so far.
These technologies are not only exciting for my life, but they are crucial. These allow me to do all the things I need to do to live a relatively regular life and stay healthy. I have always been lucky because I am healthier than some people with this disease, and I am even luckier to live in a time where there are such amazing medicines and treatments for this disease.