So my move to Manchester started on 25th January, i came for my first clinic appointment with my mum again, i think i need support until i get to know these people a little better.
I arrived and Prof Webb came to my door and said he wanted me to meet the other consultant Dr Andrew Jones, which made me a little nervous, having left Stoke because i really struggled to trust my consultant and team in Stoke this gave me butterflies. I was also singing Aqua's Dr Jones, Jones, Calling Dr Jones in my head, which really wasn't helping. When he came in, i felt completely at ease, just like Prof Webb he listened to me and what i wanted, needed and felt. I met a few of the team whilst i was there, physio and dietician i had met before and a social worker. They had all decided that they wanted to wait till i was admitted to get to know me and have a really good look at my treatment etc. However there was a plan hopefully to start Meropenim nebs as they have had good results over the last year with patients responding well. For me i'm hoping it helps me too, Mero is my Iv wonder drug it really helps me feel loads better but doesn't seem to last for long anymore like the rest of drugs cuz after two weeks i feel poorly again. Having only just come out of Stoke and finished IV's though they were happy for me to wait until i became unwell again and then i would be admitted.
Not sure like me i though it would be so soon, on the following tuesday 31st, i rang to ask them to put me on waiting list for a bed, they said there were beds available at the moment so when i needed it i could just ring up, however i wanted to get through my week at work and my personal situation meant my life had been turned upside down, i knew my lungs wouldn't make it though. On the friday i rang up and the said because i'm new if i could make it through weekend and come up monday there would be the whole team round to assess me but my name would be on a bed for the whole weekend if i needed it i was to come in.
I made it till monday and i drove up in my car, packing was hard work, my cute little Soph curled up in my suitcase as i was trying to fill it, lol!! Steve took her to his mum and dad's cause he works long hours so it's not fair on her when i'm away to leave her all day. I cried buckets cuz i knew i wasn't going to see her for 2 weeks. Its so hard not seeing her, i never understood "Dog People" as i used to call them, but christ she really is my little girl and i'm so used to her being around me, curled up with me it's so hard without her!
So i arrived on the ward and was shown to my room, straight away i was made a cuppa!!! Shown around and welcomed by all the staff, it was really nice. I'd had a look around the ward when i came for my second opinion but i was shown round again. Didn't realise they had a washing machine and dryer!! Not that i plan on doing washing here!! There was loads of things straight away that felt different but in a really good way.
I was so nervous about them needling my port, especially when i realised they used different needles here, grippers only! CF's are so protective of their ports and i'm no different, its hard to let people do things differently and they only use 5 ml syringes for flushes and only flush with about 3 mls. I'm used to a 10ml flush, before, between drugs and at the end. So that was little different, if i'd of been anywhere else i prob would of felt a bit alarmed, but i do really trust them here. They also only give a couple of mls of heparin to lock of the line, instead of the 5 mls im used to each time. When i asked why they said it's because it's a blood thinner and CF's who a prone to bleeds don't need too much blood thinners. So that was all good and i kinda got used to the new needle after a while! All though the two clamps are a little annoying!!
I was given a menu to choose lunch and dinner off, couldn't believe my eyes there was so much choice. I didn't really have much of an appetitie. Had Cheese and Onion Toastie for lunch and Chicken Risotto. Then at 8pm came the snacks trolley came round, couldn't believe my eyes, it's all free!!! Fresh cakes, yogurts, jelly, biscuits, crisps, chocolate, sweeties.
So fingers crossed they gonna help me here and i'll have these ivs and be able to go home and have some kind of life for more than a few weeks. Cuz when i get home things are going to change and i need to be well to cope with them.
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