My Cystic Fibrosis Journey: 1993-1994

In August, 1993, I was about to re-enter college after a two-year absence. I had spent the entire two years doing everything I could to get back into school. When I finally had the resources to do so, I was petrified. I remember my mother asking me if I really wanted to do it – I had a decent-paying job that I did well, I had benefits, and I had a great working relationship with the employees and my bosses.

In the United States, you are what you “do”, and I wanted to do something not just because I was “good at it,” but because I loved what I did. I know that most people end up working in an industry or job unrelated to their college degree, but I knew that I would not be happy staying there. I had to go back to school as soon as possible.

First Year

Living

I lived in a dorm during the first year back at my new school, a local state university. I chose English as my major, with a concentration in Journalism. Still unaware of what my CF might have in store for me, I envisioned myself a news reporter. I fancied the idea of traveling to follow the news. Because I had taken most of the “general education” classes at my first school, most of my classes were in English or Journalism. I spent my class time digesting literature from across time and ocean, learning the basics of “old school” journalism, and finding new opportunities on campus.

Social

I was lucky enough to get a single dorm room with a private bathroom (toilet and sink), but had to walk up two flights of stairs to the women’s floor to shower. I made a friend early on, and Lisa and I became best buds.

Lisa and me.

Lisa and me.

Service and Friendship

During my first semester there, we pledged Gamma Sigma Sigma national service sorority together, further cementing our friendship. I found a group of friends – sisters – for the first time since high school, and our primary purpose was Service and Friendship. Our projects included hosting Red Cross blood drives, raising money for various  charities, selling Daffodils on campus for the American Cancer Society, camped out for homelessness with the campus service fraternity, and raised awareness for various community and social causes.

Gamma Sigma Sigma formal dance.

Gamma Sigma Sigma formal dance.

It had been years since I had friends I saw or spoke to everyday. Walking across our little campus, I’d see ten different friends in a matter of minutes.

Classes

My classes were mostly Literature and Writing classes, with a few leftover “general education” requirements. As the year went on, I realized that most of my Journalism classes would be taught by the same professor (who was just pretty cool), and that the English department was a close-knit community. I earned a 3.89 my first semester, and a 3.75 my second semester.

Writing

In addition to studying Journalism, I also joined the Campus newspaper, for which I wrote weekly news articles, and in later semesters, served as Commentary Editor and Managing Editor. This is how I learned to use the Internet – when it was all words. The internet, but no pictures. It was hard to explain, but saved us time from having to go to the library to look up newspaper and magazines through the Readers Guide to Periodicals, and search through Microfiche.

Health – A New Stage of Life

Little did I know how much their friendship meant to me, because in April of that school year, I was diagnosed with Pneumonia and tossed in the hospital for two weeks. It was really scary, because I had not had pneumonia since I was a baby. I had acquired the bacterial infection, Pseudomonas Aeriginosa. PA is a bacteria that thrives in warm, moist environments. It lives in water, even in very small quantities – in soil, on produce, on rocks, in the pipes that ferry water into our homes. It thrives in the CF lungs because of the thick mucus.

“Prevalence is high and, once acquired, chronic infection will almost always ensue”- Pseudomonas aeriginosa in cystic fibrosis: pathogenesis and persistence.  –Davies JC., Paediatr Respir Rev. 2002 Jun;3(2):128-34.

That means that most people with CF end up culturing PA, and once it’s entered the lungs, it is nearly impossible to eradicate. PA is associated with the decline of lung function in CF patients. The best treatment is bursts of antibiotics to prevent further damage, which unfortunately means that over time, the bacteria will learn to develop defenses against the medications – known as resistance. As a result, we need stronger and stronger medications, many which are only available via IV. A standard IV Antibiotic course is two weeks, and in many cases, patients remain in the hospital for the duration so that they can also receive additional respiratory therapy and monitoring if they need additional care such as closer monitoring, oxygen, and treatment for other secondary problems.

I only had school health insurance at the time, which covered basically nothing. I was too sick to worry about that, however. I had met with the local CF team there, who took over care from the private practice pulmonologist I had seen over the summer. I couldn’t worry about that, though, because I had to have IV antibiotics for two weeks. Were it not for my friends and sisters, I would have been alone. In fact, I was the opposite of alone. The nurses on my floor were awesome. Since I had a single hospital room, as long as everyone kept the noise down, they could stay as long as they wanted. Sometimes, I had sleepovers. As awful as the experience was, I had so much support.

Summer

The summer in between my first and second years was pretty awesome.

Internship

That summer, I got to work for Connecticut Magazine, working on the annual summer “Dining Out Guide”. I saw the inner workkings of a monthly publication, got to write and see my words published, and gained a lot of new skills and knowledge. It was a great experience.

Work

Thanks to the work I did as a Service Manager at the appliance store, the local appliance repair shop hired me to help in the dispatch department. I was able to make some extra money doing that in between my internship and other obligations.

Orientation Leader

During the previous semester, I found new opportunities to meet more people, develop new skills, and actually positively affect people’s lives on campus. As a transfer student, I had a lot to learn during Orientation, and I wanted to make sure that other new students learned what they needed to acclimate to campus as smoothly as possible. I interviewed and earned a spot on the Summer Orientation team, known as C.O.L.A.

One of our Orientation shirts. Everyone signed the green ones for one another, and it's a great memento.

One of our Orientation shirts. Everyone signed the green ones for one another, and it’s a great memento.

I spent several weeks that summer training  and then holding Orientation sessions. I made amazing friends that I still see to this day.  I also earned some awesome money for my time. All around, it was one of the most confidence and skill-building experiences of my life. My skills and knowledge helped hundreds of people over those few weeks. Pretty awesome feeling!

CCSU Squared

This was an additional organization that helps International students acclimate to campus and the United States. The team got to go on an awesome retreat at a lake in the woods, and participated in team building exercises and an insane obstacle course that required us to scale walls, zip-line through the forest, climb ropes, and basically test us physically, mentally, and force us to rely on each other. IT was also a great experience to meet the International students. The first night, we picked them up from the train (from the airport) and they slept on our apartment floor and ate pancakes. We took them to the mall, helped them buy school books, and helped them with anything they needed to get used to life here.

Road Trips!

That summer, my friends from Orientation and I went to see Billy Joel and Elton John perform in Buffalo, NY. It was my first-ever road trip. Coincidentally, our school soccer time happened to be playing a school in Buffalo, so we made signs and cheered them on. We were geographically close enough that we decided to go to Niagara Falls, as well. It was so much fun.

Niagara Falls, NY.

Niagara Falls, NY.

Because we loved Niagara Falls so much from the US side, we thought that we needed to go back and see the Canadian side, and planned another trip up there, over Labor Day weekend. It was just as amazing, and my first visit to Canada.

Moving On..and Out

It was around this time that I ended a long-term relationship that I had been in. It wasn’t all bad, and I don’t want to really say anything public about it.

That summer, I also moved into my first apartment with my friends Lisa and Jen.

Me, Jen, Lisa - Apartment 401!

Me, Jen, Lisa – Apartment 401!

It was the final move out from my mother’s home. I loved being on my own, cooking for myself and my roommates (and friends), having movie night, sleeping in on Saturday mornings. The building was about 1/4 mile from campus and the local dive bar. Yeah, perfect!!

Second Year

The school year began, and life continued on from the previous semester. The only differences were that I had my own apartment to go to, and I had a lot more friends and opportunities.

Health

I was enjoying all of my classes, extra-curricular activities, and my social life. However, Cystic Fibrosis didn’t like that I was so happy. Only six weeks into school, I ended up back in the hospital, for another flare-up of Pneumonia due to Pseudomonas Aeriginosa, for another two weeks. My Health suddenly affected every single part of my life:

Living – My roommates became my second family, driving me to and from the hospital or doctors’ appointments when I was too sick. I was also doing a couple of hours of airway clearance and nebulizers a day.

Social – Once again, my friends spent a lot of time with me in the hospital, keeping me company, bringing me homework, and just making life a bit more bearable. My family came to visit as well.

Fall, 1994.

Me, my two sisters, my brother in law, and my “little” cousin Jessica, Fall, 1994.

Friendship and Service – My sorority sisters really had big hearts. When I came home on IV medications, they moved an important meeting to our apartment so that I could do my medications and not have to leave. They were also there when I suddenly went back downhill and had to be rushed back to the hospital, and took turns bringing me treats and visiting me.

Extra Curricular Activities – Everything other than school was put on hold. I had been nominated for Homecoming Queen and had been asked to the Marine Corp Ball, both of which I had to miss.

Even some of my schooling had to go by the wayside…

Classes

Because I was there for my education above and beyond everything, when I got sick again, the only thing I had to worry about were my classes. My peers on the student newspaper and in my service sorority picked up the slack when I needed to take care of my health, so I didn’t have to worry about anything else.

I worked with the Dean of Students and registered with the Disabled Student department. Carrying a full schedule of 5 classes just became too much. I had begun doing Airway Clearance and inhaled medications and having 5 different classes and professors, five days a week, made it difficult to get on a schedule. They also arranged for me to take exams in their presence and with unlimited breaks, should I be sick at the time, or have coughing episodes that interrupted my concentration.

I also had difficulty with a professor in one of my classes. My chronic cough had increased in intensity and frequency. I usually sat at the back of the class during lecture classes, so I could get out discreetly when I had a coughing attack. I also sipped water throughout class and sucked on cough drops. However, sometimes it wasn’t enough. My professor actually called me out in the middle of a lecture and said to me:

“If you’re going to keep  carrying on like that, please leave my classroom.” – K.L., PhD.

This was an important class for my English major. It was a 400-level class about Chaucer, with all reading done in Middle English. To understand the stories, we had to first translate the Middle English to modern English, then read it for content. Of course, it was so complex that it usually took 3-4 complete re-reads to “get” what Chaucer is saying. Tough, tough, class, that I otherwise was acing.

Almost word-for-word translation.

Almost word-for-word translation.

Accommodating my Health

Working with the Disabled Students department, we determined that I could remain a full-time student and take 3-4 classes instead of 5, or 9-12 credits instead of the usual 15.

I dropped one class that semester – another literature class that required heavy reading. I could take it the following semester, and the professor was really helpful in helping me reach that decision. He said that I could re-use my assignments I had already handed in, when I went through that portion of the class again, which would save me some work for the first month or so next time around.

From this point on, I had to do a lot more to keep my health at a certain level. Even doing all that I did, it would never completely prevent my needing IV antibiotics. The CF clinic used to call it a “tune up” – basically taking the stronger IV antibiotics (since my bugs didn’t respond well to the oral ones) and “beat down” the bacterial infections so that they would decrease in population for a while. Knowing that this was my lot – going in for weeks at a time, blowing IVs every other day, becoming a pin cushion – it got scary.

It was all new to me, whereas some CF patients begin needing IV antibiotics earlier in life. It all really depends on when you acquire certain bacterial infections; in this case, I now had two different strains Pseudomonas Aeriginosa. Cystic Fibrosis was calling the shots, and I had to listen if I wanted to fight it.

 

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