Today I went back to the hospital after managing a whole month without an appointment *cue cheering* That's the longest I've managed in over a year :)
AND to add to great achievements I've also managed two months off IVs :) even better! Compared to how I was feeling this time last year I'm so grateful of everything the doctors have done, my family/friends have done in supporting me and I have done to get myself back to feeling like this. Yes my lung function still has a fair bit to go to where it used to be BUT I'm a lot better than this time last year so I'm happy :)
So I popped to hospital and they checked my weight which was stable so that's good considering past few days my appetite hasn't been as much. My lung function was scarily EXACTLY the same as last time! Dr Ho came in, was happy with everything..apologised for the reaction to the nebuliser I had last time! His words were 'sorry for nearly killing you, don't worry we wont try it again!' Haha :)
He wondered about giving me azteronum nebulised (never had it before so if any CFers have had it let me know what it's like, if it works for you!) but he thought he'd rather use that when I am feeling more chesty so that our first resort isn't IVs next time, he'll try this first! So he decided on giving me Ciprofloxacin (just some antibiotic tablets) for a month to hopefully give me a boost. Last time I had them I did feel pretty sick and ended up with rashy feet and sunburn..the bloody tablets even give you sunburn in the winter! So I've stocked up on antisickness tablets so hopefully I can managed but he said just stop them if I feel really rubbishy!
I also asked Dr Ho to check my iron levels as I'm getting the usual symptoms again so Judith (lovely nurse) took some blood. I'll ring in the week to see what it's like. He wants to know WHY its going low so often, transfusions should last 9 months not 5! And also my levels go from fine to literally the next week being at 0! Nothing. I get the symptoms like a month before hand too so he wants to find out WHY it's doing this!
Apart from all that, Paddy the port had another flush of saline and heparin so he's all topped up and working fine :)
Pretty happy with how it all went and I don't have another appointment for yet another month! Result!
Last thing, I swear my lovely friend Sam must be looking down on me at hospital! Last time I went the blue paper wafted as if a breeze were there..but there was no breeze. And today the bin went clang when nobody was near it and it was shut. If anybody would try to make me laugh it would be Sam! And both hospital visits have ended well so she must be sending good luck vibes to me..and possibly scaring away the dietician as she's not been to see me at all! (Sam and I used to laugh about the dieticians constantly moaning at us when we were poorly and not understanding it from our perspective!)
Have a lovely weekend xx