To most people the idea of leaving home is a daunting prospect, whether you have cystic fibrosis (CF) or not. However, for people with CF it’s not just leaving home that is daunting. It is also leaving your hospital team and local GP.
For 17 years I had the same paediatrics team. They literally watched and monitored me growing up. Transferring over to the adult unit at 17 was pretty emotional for me, my mum and my paediatrics team, though I still saw some of my old team, generally throughout the hospital and if my clinic days crossed over with theirs, so the move didn’t necessarily seem that big. However, moving to another county, city or even country can seem like a step too big for many. Here is how I have tackled the problem, so I can do what I want to without letting my CF be a restriction.
Be prepared (just in case!)
For the first few months of my gap year I was just travelling through Europe. My hospital team were happy that it was relatively unlikely I was going to catch some horrendous bug and if I had had any issues, I would have been able to phone my hospital team back in the UK and they could have referred me to a nearby hospital, or I could have caught a train or plane home. Therefore, the questions regarding hospitals during travelling for a few months were relatively easy to answer. I also took more than enough medication to last the duration of my travels and took a couple of supplies of ‘rescue medication’, in case I caught a cold or got a cough.
Research your destinations
Once I arrived back in the UK, I had a check-up appointment and thankfully everything is good! Throughout the planning of my travels I kept checking with my doctors and informing them of what countries I would be in. They told me about how the hospital systems and CF teams work in other countries and, given I was only travelling in Europe, everything was very similar to the UK. Therefore, what originally may have seemed a crazy idea, was actually a very manageable situation.
Being away for longer just takes a little more planning
Next, I am off to Austria for a ski season. This is slightly more complicated as I’ll be away for five months and taking five months’ worth of medication would leave me with no room for clothes! Therefore, through a lot of googling, I have managed to find the details of what will be my local doctor’s practice. I sent this to my CF nurse, who has emailed the practice about whether they would be able to prescribe my medication for the five months I’m out there. Hopefully, they will reply saying "yes", otherwise my family will just have to bring out a few months’ worth of my medication when they come to visit!
My European Health Insurance Card (EHIC) will cover me for my prescriptions and if I need to go to hospital whilst I’m out there. The high altitude of the mountains, in the past, has improved my health and breathing, as the air is super clean. Therefore, I am hoping that the combination of the clean mountain air and the enormous amount of exercise I’ll be doing will keep my health in top condition!
I will also be starting university next autumn, which means another CF centre to get to know! Through talking to my current CF team, I have been told that when I attend Uni my care will be split between the CF team at the hospital in my university town and my team back home. This means that I won’t feel completely thrown into the deep end with a whole new CF team that I’ve never met before. This will also make it easier if I decide to live in the town where I went to Uni, as I will have already been seeing the team there for a few years.
Persevere and pursue your dreams
Finally, leaving your family and moving out is a pretty big deal for most people. To start with you may feel alone and like all you want to do is to run back home. However, I definitely think persevering, at least for a month or so, will in the end be extremely beneficial.
Everybody feels homesick to start with and making new friends is always hard. This seems even harder as nobody may know about your CF, but all your friends and family are just a phone call or message away, so you are not truly alone.
When I moved to Berlin, to start with I found it extremely lonely living on my own, but regular phone calls and FaceTimes to my friends and family kept me going and, in the end, I had a great time. Once you get past the first few weeks, it all gets easier.
My main advice about moving away from home and changing CF teams or GPs, would be to talk to them throughout the process about your thoughts, insecurities and what you want. Your CF team will inform your new team about your medical history and will most likely stay in contact with your new team for a while until they get used to you.
Some of the best advice I was given by my consultant was that “doubts and worries are normal in the circumstance, and the additional CF stuff just amplifies it.” Therefore, it is worth persevering and pursuing your dreams and not letting your CF stop you.
You can follow Poppy’s travels on her blog stickingtwofingersuptocf.com.