Hello!
I have just finished my two week course of IV (Intravenous) antibiotics in Hotel Llandough (my hospital, not really a hotel sadly, though I do get room service!), and I can honestly say my health has never been better. The drug I started back in February 2020, Trikafta, is a miracle and I can't believe the changes it has made to my life in the past 4 months.
It was a different experience when I was an inpatient this time due to the extra measures everyone is taking for Covid-19. The main differences were that everyone was wearing masks and all room doors were to be kept closed at all times. I also wasn't allowed off the ward at all, until the beginning of my second week when I was allowed out with a Physio for a walk around the hospital grounds, keeping two metres apart; fresh air has never tasted so sweet.
Whilst you're in hospital you are obviously not well, but once you start to feel a bit better the boredom can really hit. I was lucky enough to meet a Cyster (a Cystic Fibrosis Sister), whilst admitted back in January and we were both in again this time too. We were having an absolutely hilarious time together and got into trouble almost everyday. It was never that bad but we were called "partners in crime" and we realised that we are quite alike and I think just egged each other on; becoming sillier and sillier with each passing hour. One night we were texting from our beds and laughing so loudly that the nurses could hear us and came to see if we were ok!
It's hard to have this disease, but harder still that we aren't allowed around other Cfer's due to the risk of cross infection. So we were mainly being told off for chatting in the corridor, we were still at least 3 steps apart but the CF nurses have worked on the ward long enough to be very good at telling us to go back to our rooms, which if anything, I think encouraged us to sneak around and get back to our conversation. At one point I was hiding behind a trolley whilst we were chatting and keeping one eye on the nurses staff room! I somehow managed not to get caught that time but I had already been told off earlier that day.
I think in a way it's similar to being a kid in school, you know there are some staff you can get away with doing whatever you want but then there are some you don't mess with, it's the same on our CF ward, don't get me wrong, that doesn't stop us. It just means we're more careful when we sneak about for a chat!
Yes, we could just text or facetime, the staff often say it to us, but 1) the hospital has very little signal and the Wi-Fi is hit and miss and 2) it's nice to have a giggle with someone in person. Before I went in this time, I had been shielding alone for 11 weeks. Being in hospital surrounded by the lovely NHS staff was a dream for me, I'm a social person and I LOVE to talk, as anyone who knows me will tell you! And with my Cyster I almost wet myself from laughing, I definitely cried and I had the ab pains you get when you've laughed so much. At one point she was army crawling across the floor when a physio came out of the room opposite and looked perplexed at her, I was still trying to hide so I had to keep my laughter contained! We were also making up silly nicknames for some of the staff, never nasty, all the staff are so lovely, but it was funny and it passed some of the time.
Laughter is actually an excellent form of physio, it can make you cough which is great for us Cfer's when we've got stuff to move off of our chests. As a kid when I refused to do my physio my mum would tickle me until I coughed, might sound a little mean but it was funny and it got me clearing my chest!
Although my Cyster did try and help me, I don't need help to embarrass myself. At one point whilst I was an inpatient I actually fell off the treadmill, somehow the physio didn't laugh, despite how funny it must've looked. Don't worry I was fine and managed to style it out by landing on my feet! My point being I can talk or stumble my way into embarrassing situations all on my own.
I think I've completely lost any filter I used to have in my brain and now anything can come tumbling out of my mouth, I can hear how crazy I sound and I don't think the self isolation has helped that! I'm not sure I can give an example of the random rubbish I talk about but just know that more often than not I think, 'WHY did I just say that?!'; it's an interesting life to try and steer.
I'm definitely going to miss having people around me all the time, I've got another 8 weeks of shielding alone ahead of me, and I know I'll manage, mainly, because I have to. What other choice do I have? That doesn't mean I'm going to be enjoying all of that time unfortunately. I shall definitely be calling my Cyster, to annoy her, she's still got a bit of time left in our lovely Hotel Llandough and is currently the only patient on the ward. She didn't want me to leave and it might sound odd but I'm not sure I wanted to go. I'm thrilled to be well, but I will miss her a lot. She told me I should 'faint' so I would have to stay in for another few days, but there was a nurse there at the time and he told me not to listen to her. So I pretended to faint but as much as I'd love to still be with her, I wouldn't make myself ill on purpose.
Whilst I was an inpatient I had a lot of tests done as part of my annual review, and although I don't have a conclusive letter with my results, from what the doctors have told me so far, they've been great. All my vitamin levels are good, I had a sweat test done (us Cfer's have higher sweat levels), and mine which was at the level of someone who doesn't have CF! My BMI is spot on and my exercise tolerance has increased with my recovery rate being less than a minute! My overnight oxygen tests were fantastic and my blood sugar levels were brilliant. My lung function was even higher than just a few weeks ago and when I tested it on the 15th June 2020, it was at 43%, the highest I can ever remember it being! My life goal was to get to 40% so the fact that in just 4 months of being on Trikafta it is already higher than 40 is incredible!
(Trikafta is the closest the CF community has come to a 'cure' and I'm lucky enough to be on it through compassionate use- i.e. my lung function is low enough. This needs to be made available to everyone but to do so it needs some support. If you can sign a petition or spare a minute to complete a letter to your MP that would be incredible, the letter is in a link in my Instagram bio. Thank you!)
So, I've been in and out of hospital for as long as I can remember, I used to live on the Isles of Scilly and I would fly to Truro, Cornwall with one of my parents to be put on the babies unit for two weeks whilst I had my IV antibiotics. I used to have a longline (PICC line) put into my arm to have the medication put through. Until I was about 10 years old when my veins became very difficult to access; I then had a Port-a-cath put in place. I had an operation to have a little disc (the Port) put into the side of my chest, with the line going straight into my veins for easy access, and to save my arms from the constant needles!
As I have to have IV's every three months for two weeks it made sense to have a Port put in. I've actually had two operations for this, the second when I was about 15 years old, due to the fact I'd outgrown the first one. They usually last around 10 years. So every time I need IV's the nurses can pop a needle into the skin where the Port is and the medication can be administered through there for the two weeks I need it.
The babies ward was one of the only wards that had single rooms, and due to cross infection people with CF aren't allowed to share rooms in hospital, so I spent a lot of time on Polkerris ward as a kid. It had a playroom and there was also a school room in the hospital so I wouldn't miss out on my school work - lucky me!
The hospital and the wards I've been on are like a second home to me. I know lots of people hate hospitals and associate them with bad times, which I can completely understand, but for me amongst the bad times are many happy memories. I can't even begin to tell you how incredible the staff are, they'll be there to put you in your place and encourage you to take your treatments, they'll make you laugh and they'll comfort you when you're upset. They all know you and what you're like (i.e. I'm not a morning person!) and you get to meet so many people. There's often staff changes which can be difficult if you've gotten used to seeing someone specific but for me every time there's a new person it's a new friend or member of the family. I would also say that the CF specialist doctors are some of the most passionate people you could ever meet, they will go to the ends of the earth to help you, in any way they can and not just you but your family too.
Anyone who has CF or has a member of their family with CF will know it's not just the CF Carrier who it effects. My family are incredible and will always be asking how I'm doing, they'll encourage me to push myself and be the best I can be and they've always been there for me. I can't imagine how it was for my younger sister growing up, she had to spend a lot of time in hospital because I was spending a lot of time in hospital; that can't have been fun but at the same time it's all we've ever known and we get on with it.
Hospitals can be scary places, I spend enough of my time there to know that, I've been very ill and I've cried a lot. But I will always get back up and push on, if not for myself then for those who fight for me but most of all for my family, both blood related and CF related.
It's CF Awareness week in the UK and it's also very close to my sister and my birthdays. On Facebook you can fundraise for certain charities on your birthday and we have chosen the CF Trust. We've had overwhelming support and have so far raised (as of the 18/06/20) £260! Thank you to anyone who has helped us or to anyone who has taken the time to sign a petition, write a letter or donate a pound of two of your money to the amazing charities that help the lives of all us CF Warriors :)
If you have any questions about anything in my blog posts please get in contact with me via my contact page on here or send me a message on Instagram!
Thank you xoxo
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