Starting university with CF Pt.1

Heya,

So this is the first of my posts on living with CF at uni.

It can be such a scary and daunting time especially as many people with CF will have transitioned from paediatric care to adult care recenlty; meaning that all health decision have to be made by the you and your parents no longer get a say in medical decisions made. This is a big enough deal in the first place; but obviously you can have anyone you want in appointments.

Going to university most likely means that you will be away from your family and those that support you and mean that you have to fully take control of medications and hospital appointments all alone.

The first things to make sure when deciding on a university is the health care in the new city you will be moving to, look up the team online and maybe even find people online with CF who go to the team you may be moving to, and ask any questions you may have.
Call the hospital before hand and let them know you will be coming to university in the area, when I called we arranged a meeting so the first day I arrived at uni I went to the hospital with my dad and got a tour of the ward and met the team. This reassured me and allowed me to become familiar with the place so that it wouldn’t be such a big deal when I was to come alone for my first appointment.

It may help to go to  few appointments at home with the CF team you are already familiar with so you can get used to the way appointments work and speaking to the team alone.

On the first few appointments at uni it is important to make sure the team know all recent information about the current state of your health, although your team from home will already send over your documents its best to also talk it through with them incase things get missed.

When I first started uni I had shared care between my hospital at home and the one at uni, however after some time things with my health got mixed up due to miscommunication between the two teams so in the end I moved all my care to the team at uni as I was spending more time there and needed more care during term time than in the holidays. I still get access to the hospital at home if I need to be seen urgently.

As well as this it is also important to inform university themselves of the health condition; this should be done with your application but on arriving it is important to meet with the enabling services to talk through support that you may need for coursework, exams and daily life at uni. I spoke to my tutor and the head of Geography and explained to them how CF effects me and the time I may miss due to illness. They assisted me in any way they could; giving me extensions for course work and making sure my lectures are recorded so that I can catch up on anything I may miss. It is important to keep in touch with those on the course so that they know your health updates and can help you manage.

There are many things that need sorting out when settling at uni to make sure that it isn’t as overwhelming as it may first appear. Preparation is key and it is important that you take control of your own health care as soon as possible so that when getting to a new place alone it is easier to manage.

I hope that some of what I have mentioned is helpful or informative, if you have any topics you would like me to cover in regards to uni please let me know.  otherwise I plan on covering more issues such as: how to tell your flatmates you have CF, how to deal with an admission while at uni and how to manage a medication regime.

Thanks for reading,

Isabelle

Also check out my last post for my personal health update.

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