It’s a big step, going from one to the other. But for me it wasn’t the smooth transition I’d hoped for. We had an appointment at the CF Adult clinic, I presumed just to get a taster of how things happened and worked. I presumed I would go back to my paediatric team at least once more, and I presumed that I could have a final goodbye and natter with them before moving permanently onto the Adult Team, now situated an hour away instead of 15 minutes.
Never presume. Because I presumed wrongly. (I’ve said presume too many times, it doesn’t sound like a word!) I was devastated to find out that I had suddenly made the jump up without preparing myself for it. It might not sound like such a big deal, but when you’ve grown up with a team of people who have not only helped you, but have been a pillar of support for you, it is.
Can we talk about just how great they were? Every clinic appointment we would have a good old catch up about everything, usually spending more time talking than doing clinic stuff! I got to know each of them really well.
Who else had to blow up a cartoon hot air balloon when they did their lung functions?! I mean those were truly the days. Not just that but after I did my blows, every time without fail, I’d be offered a Jelly Baby, sometimes two! We’d often talk about things even if we had finished half an hour ago! (we were usually the last people in anyway!) Sometimes they weren’t even CF related… We actually found our dog Holly through one of the nurses who had just got a puppy! I still keep in touch with said nurse, and I even walk her dog from time to time!
My Physiotherapist even made my 16th birthday cake! Fruit cake is my favourite and she nailed it!!
Both the nurse and physiotherapist were kind hearted, hard-working people, who I have so much respect and gratitude for! I do still miss them and our chin wags!
When moving to Adult care, it was very different. The biggest difference of all (other than NOT blowing up the hot air balloon #BringBackTheBalloon) was the different people I’d see each time I was in clinic. It really threw me off. I like to get to know the Doctors, Dieticians and Physios just as much as they are getting to know me! But when the person changes every time I have an appointment, it becomes quite difficult. Obviously I’m used to it now, and in some ways I guess it’s quite beneficial because you are getting a different perspective on your health each time. Although sometimes you don’t agree with everyone…but that’s a different story! Now that I’ve been there around six years, I know most of the people there, but you do still get the odd occasion of “Hi, I’m so and so… I don’t think we’ve met before!”
But it’s just something that I’ve had to adjust to. Going from a small knit team to a wider variety of people was a bit of a shock. But I have definitely been well looked after there. I’d probably say my health has benefitted more. Espesh since starting Tobramycin nebuliser (now Tobi-pod haler) on alternate months, that was a real game changer.
Another huge difference was the segregation. For clinic, and even annual review, I will be shown to my own room where everyone comes to you. The only times I have to move is if I need an X-ray/Ultrasound/CT Scan etc. Obviously they can’t bring that to me!
Whereas before in clinic and annual review, I would have to wait in reception and then go to each room. Seeing as it’s imperative for CF people to be separated from each other (due to cross infection- which you can read here) it totally makes sense.
The other benefit is when I am admitted to hospital for IVs. I’m now in a proper CF clinic, instead of a Children’s ward. The rooms are totally different, accompanied with your own bathroom, TV and air con! Not to mention the supply of snacks on demand!
And the grounds of the hospital are super. There’s a little duck pond a small walk away which is a peaceful feature to wander off to and sit by. The rest of the grounds are lovely too. One memorable time was when my Parents, Aunt, Gran and Cousins came to visit, and they bought a load of food, chairs and blankets and we had a yummy picnic on the grass. I know what you’re thinking, a picnic in the hospital grounds? But trust me these grounds are big, so much so that you forget entirely about being near a hospital!
Being over an hour away does kind of take it’s toll though. I usually have to take the day off for a clinic appointment, because you never know how long these things will take. Also, if I need to stay in for IVs it’s a long old way for people to come and visit! I remember when I was in Paediatrics for IVs, I could sneak home between doses, and see people!
I really hope that other CFers had a smoother transition, because it’s a huge step to take moving from one team of familiar faces to completely new ones. I know I was very upset that I didn’t get to say thank you to the team at Milton Keynes Hospital. I even bought them a huge pack of Jelly Babies, that I never had the chance to give to them! I had to do the honourable thing and eat them so they didn’t go to waste.
If you are going through the transition soon, just clarify the whole process. I wished I did! I’m not blaming anyone here, if anything I blame myself for not double checking! It is a daunting process but a necessary one. The level of care does not waver at all, if anything you are looked at with fresh eyes and minds that will hopefully leave you better off!
Again I want to say a massive thank you to my old team for helping me and my family get through the first part of my life. And a massive thank you to the team who look after me and so many others now. You are all incredible people!