12 minute read
Education: CF and College
Education is key to Independent Living. Not only does it increase potential employment opportunities and income, but it helps build a variety of social and key life skills. This Spotlight is specifically focusing on college and third level education. CF Ambassador, Aileen Henderson shares her experience from choosing a course to completing her degree.
Hi, my name is Aileen Henderson, I’m 25 years old and I have Cystic Fibrosis. I recently graduated from college so I understand the added pressure CF can often bring when entering this new chapter in life.
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I finished secondary school in 2015 with very little idea of what I wanted to do next. I got offered a place in science in my hometown of Galway, but decided to turn it down as my worst fear was to be stuck in a course that I wasn’t 100% certain of. Having always had a great passion for music throughout my life, I decided to go with my heart study music.
Rather than move away from home, which would have been a big step for me straight after school, I decided to do a year long PLC in ‘Music and Composition’ in Galway.
At the beginning of the year, I typed out a letter informing my tutors about my CF and how it would affect my work to some extent throughout the year. I handed this to them individually to avoid it getting lost in any emails. For me, I had no issues with them knowing about my condition as I have always been open with my friends, although it may be a bigger deal for others opening up about their CF. I never wanted special attention, just for them to understand that I may miss days dues to being sick or for appointments. As long as it has the most important information, specific to you, that you feel would be beneficial for them to know, that’s all that’s needed. I also mentioned in the letter that if another student came into the college with CF that both of us would need to be informed for crossinfection precautions.
My PLC course hours were similar to school hours with one day a week off. I found it a great transition from school, enjoyed meeting new people and I have still have great friends from it. I was able to keep up with my classmates the majority of the time and I noticed that I felt much better overall than I did in school - maybe this was due to smaller class numbers, no homework and generally a much more relaxed environment. However, I did miss several days due to chest infections or colds that I was almost guaranteed to pick up if they were going around at the time. I also had a 2 week admission in hospital for antibiotics. During that year I did lack some energy and would get tired very quickly. I’d often find myself falling asleep when I came home - naps were a big thing for me back then! I’m also a major night owl so maybe if I went to bed before 2am that wouldn’t have been an issue. (Let’s not blame everything on CF!). I did have to watch myself carefully and make sure I didn’t overdo it, or I would easily get run down and sick. While thankfully admission for IV antibiotics is rare enough for me, I was on several courses of oral antibiotics throughout the year to keep me at my baseline as much as possible.
Once I decided that I wanted to continue studying music. I did some research on what colleges would suit. I had heard of the ‘Brighton Institute of Modern Music’ (BIMM) from some friends which is a college that is situated in many parts of the world with the Irish one in Dublin. BIMM is affiliated to TU Dublin (formerly known as DIT). It looked like the ideal college for me, however, the fact it was in Dublin was a slight issue for me at the time. It meant I would have to move away from home and at the time that was something I wasn’t fully comfortable with. Although my CF didn’t hold me back too much, it did get in the way quite often and I felt I wouldn’t be able to manage the uncertainty of my condition by myself in Dublin.
After several back and forths on what would be the best approach, I decided to do the diploma course in ‘Professional Musicianship’. This course was only one day a week and would allow me to decide if I wanted to move on and do the full time Level 4 course the following year. Initially I had planned to commute and stay up in Dublin one night a week, but college life soon took over. I met lots of new friends and was involved in many bands and projects in college that I enjoyed a lot. I ended up being there most of the time and stayed in student accommodation with 3 other girls that I got on really well with.
As it was the first time I had moved away from home, things like washing and food shopping were a new novelty! It was during this year that my health had declined a little. My lung function was at a new baseline around the 50s with it dropping to the high 40s if I had an infection. I often got my shopping delivered once a week as I found it a bit of a struggle carrying it home. My mum had suggested one of the shopping trolleys but not a chance would I be seen going to the shops like that back then! (wouldn’t bother me in the slightest now!).
As the end of the year approached, I had already decided I was going to go on and do the full-time degree for 4 years. Because I had moved up to Dublin gradually during the diploma year, when I moved back up after the summer to start my degree it didn’t seem like a big deal. I had figured out how to look after myself up there and go about my day.
I had my medications in my room and also had a mini fridge in my room to store anything that needed to be refrigerated (e.g. Cayston & Pulmozyme), so I wasn’t taking up the whole fridge in the kitchen! I also sorted out a local pharmacy. They were very good to me and it saved me having to bring everything up from Galway. If I needed anything I was able to call in on the way to college.
College life was fairly heavy going. I had classes during the day and most days I had rehearsals until late at night. My course was a BA in Commercial Modern Music and I specialised in vocals. My course covered a broad range of topics including music theory, music business and song-writing. Some of my friend specialised in other areas such a guitar, drums and sound technology so I got to experience all aspects of the music industry.
Aileen studied Music and Composition and Professional Musicianship before completing a BA in Commercial Modern Music
I had to make sure to eat properly and get my dinners in as my weight wouldn’t have been as stable back then as it is now. For the most part I was able to manage well. I had registered with the disability services in my college and I would highly recommend you make yourself known to this department in your college. At first, I was reluctant, as again, I didn’t want to be treated any differently to my classmates, but as time went on, I became more comfortable and by final year I was making use of all the accommodations available to me. These included extra time/extensions for exams and I was also able to avail of a separate room for myself for written exams. I used this once so that I could eat during the exam and keep my sugars up! I need to eat regularly due to borderline CF related diabetes but thankfully that’s stable and I don’t need insulin.
In my first year of college, I got to start the new modulator drug Orkambi, but unfortunately, I had a bad reaction to it and had to stop. I seemed ok on it at first but then developed an all-over rash after approximately 2 months. This was a hard thing to come to terms with as I felt if that didn’t work for me none of the up-and-coming drugs would work either.
In 2nd year I went through another bad patch with my health which involved several haemoptysis (coughing blood) episodes. I tried some different oral antibiotics and was admitted for IV antibiotics. This was also the wakeup call I needed to get back into exercise. I had been good at exercise before and would have been very active as a kid although this time I needed to find something that I liked and stick to it. I started going to the gym in my student accommodation almost daily, and became quite addicted (never thought I would say that!). To start with, I did light weights and some cardio. I eased myself in gradually as I would have been very prone to coughing up blood during strenuous exercise. I couldn’t run for more than 30 seconds without it happening but bit by bit I improved.
In January of my second year of college I started the newer CF drug ‘Symkevi’. I had heard people were tolerating it much better, but I still didn’t let myself get too hopeful about it working for me after the bad experience I had on Orkambi. I remember the day I started Symkevi very clearly as I was singing at a gig in Dublin that night and I was adamant not to miss it. I started the drug that morning in Galway, and my mum drove me up to Dublin and stayed around until the gig was finished just incase I had any reaction to it. She then drove back to Galway that night once everything seemed to be going ok. Such dedication to your daughter!
I had no side effects straight away but was still nervous for a good while after I started Symkevi as it was 2 months into Orkambi that I had the drug reaction. Once I was over the 2-month mark on Symkevi and everything was going well, I could relax a bit and realise that my body was tolerating it well. Such a relief! I continued to work on my fitness and started to introduce short running sessions which I have built up hugely over time with no episodes of coughing blood. I celebrated by running the 10km for CF during the first 2020 Covid lockdown. I have to say, my fitness improved greatly that summer as I was in lockdown and relying on zoom exercise classes and just about everything else on zoom to keep me entertained!
I didn’t see any major change within the first couple of months of Symkevi, it was definitely a slow improvement for me, however, looking back it has transformed my life.
In my final year of college, I had a brief break from all the fun and games. I was lucky enough to be in the small minority of people with CF who have liver problems. This was picked up when I was very young and remained stable up until recently.
In November 2020 I started having a lot of stomach problems and it was recommended by my CF team to go into A & E at the time. I didn’t think too much of it, sending snaps to my friends of me waiting thinking I was absolutely gas! I was soon admitted to Galway hospital where they eventually discovered some fluid build-up around my liver meaning it was under some pressure. I was transferred to Vincent’s hospital in Dublin by ambulance in the height of Covid and admitted up there where I stayed for a week. It was definitely the hardest experience I’ve had to go through and even more scary during Covid as I was alone a lot of the time. My mum stayed nearby and managed to get in a few times to visit. My family, friends and boyfriend where great throughout and kept me occupied as best they could.
During my time in St. Vincent’s, the topic of liver transplantation was mentioned. This wasn’t completely new to me as I had been assessed for transplant previously, but the decision was eventually made that I was too well at the time. I started diuretic tablets to get rid of the fluid on my liver and was also assessed for transplant again. I was discharged and had to wait for a call over the following few weeks to see if the team in Vincent’s had decided to put me on the active transplant list or if they thought I still wasn’t ready. I feel like I really wasn’t myself during that time although didn’t let it on too much! I was fully convinced it was time to be put on the list. But the tables turned again and the liver team decided I was still too well to be put through a transplant. The fluid was gone and aside from my liver being unstable for a while, I was still the healthiest I had ever been in my life. Dodged the bullet again!
Because I was fully convinced I was going to be put on the liver transplant list, I had come to the realisation that I might have to defer my final year of college which wasn’t an easy thing to come to terms with being so close to the finish line. Thankfully this wasn’t the case, and I got all my assignments and thesis submitted on time with the help of a few extensions (highly recommend if you need them!). With all lectures and tutorials gone online due to Covid, this actually suited me and I managed to catch up on anything I missed although I did miss the social life!
Now that I’m finished college, I’m back to how I was before my liver set off and doing better than ever. I moved back to my family home in Galway during the start of Covid and have recently been accepted into a ‘Digital Marketing’ masters in Galway which I’ll be starting in September.
It’s very do-able if you figure out the best approach for you and take advantage of the disability and student services offered to you.
There are so many ways to adapt college life for you, and if you don’t ask you don’t get! The extra time during exams and extensions, even changing timetables around to suit my schedule, all made a huge difference to my college experience.
The future of CF is so much brighter than ever before so take the bull by the horns and live your best life! Aileen
