Today was the day of clinic... again. I go every two weeks at the moment for a check up which means several hours travelling and several hours at the hospital (London Chest) for checking me numbers, talking about them with various members of the team, grumbling about them with other patients, then chilling down in the bowels of the hospital waiting for pharmacy to count out pills and argue over dosages. Generally the way things go is that nothing goes how I want. Ha. Except that today was made about 100 x better by the fact that lovely bf Adam was also there for a check up and prod and drove me home in his georgeous convertable. Cheufferage... sweeeet. He also bought crisps and drinks at the hospy and was there to lurk in the corridor for general lurkage company. Thankyou Adz, lovely boy!
I was though, as usual, monumentally ticked off about my general progress. And now I'm annoyed at myself for being so ticked off because I AM better... I'm just not as better as I thought I'd be by now. For starters you go in and 'check in' in outpatients, then you wait for the nurse to write your lung function card out, give you a sputum pot for your donations, and then you skip along to respiritory function unit (RFU). Here, you step in to the 90 degree room, exchange pleasantries with the nice lady in there, and take a moment to poo yourself about your lung function. You sit in front of the ancient spirometer and get a nose clip pegged on, and then take a HEEEUUUUGGGE deep breath in, and blow in back out as fast and as hard as you can for as long as you can till you feel like your lungs are shrivelled little raisins, whilst the RFU technician goes "keep going, out out out out... keeeppp bbllloowwwinggg." in a really funny voice.
You have a bit of a rest then do it twice more... and this is why it's adviseable to erm... pay a visit shortly before RFU. Risky business this forced expiration. You then get a print out of your blows on a delightful bright yellow sheet of A4, examine it, grumble and/or make excuses to anyone unlucky enough to catch your wrath, and then storm breathlessly back to outpatients to hand it over. Height and weight are checked, something else to start making excuses for, and you go and wait to see individual members of le team.
I blew 61% for my lung function, so pretty much identical to last time. Except this time I didn;t have the excuse of tight back muscles and sore ribs. So this appears to be my actual % at the moment. Not wholly impressive. Furthermore my sats (o2 levels) were 93-94, where they were 97 two weeks ago. I know that's not really low especially when they were about 75 before, but nonetheless I could have done without them being lowered, at least with my fast breathing. Physio was therefore slightly concerned with the breathlessness issues and my not feeling as great as two weeks ago, and suggested portable O2 for my exercise to help me do a bit more. Needless to say I'm not keen to start back with O2 use as I just feel it's a total step in the wrong direction and wouldn't probably help me much anyway since I don't use any at rest. My weight was 43kg from 43.4 last time so more or less the same (BMI 18). And even though I reckon that's okay (I've got a small frame anyway), they're still on about me putting on weight and that I need to make more of an effort with food/eating/my high calorie supplements. Basically they like you to be fatties with CF and act as if having a BMI of 20 or over is brilliant for your lung functions and immune system... but to be honest I've been pretty much as healthy as I can be at lower weights than this, and I refuse to believe that packing on the pounds is going to really help my lungs that much. Although I do agree I should make more effort with my pathetic appetite... meh. Since I was a right little cow about drinking calshakes (600 kcal milkshake) anymore coz I've realllllly gone off them - too rich and sickly, I've started back with fresubin which is smaller and a bit more balanced and lower in fat, so it doesn't make you want to vomit after one basically. I'll have 2-3 of those a day which is an extra 600-900 calories a day. And I reckon at the moment I manage to eat about 2000 which is maintaining me minus a bit (and I do very little exercise right now). Ho humm...
Even though I admitted I'm not really as great over the past few days, I do actually feel quite well in myself and have plenty more energy ect than before, plus my chest isn't that gunky, so we're not changing anything or doing any more antibiotics for now. I have to go back on monday for blood tests though (no idea why it couldn't be done today). So more travelling... however my cunning plan is to combine it with going to oxford circus for SHOPPING! Well, shopping for my Dads birthday present, which will be a laugh. I'm thinking a nice new shirt, but I'm not sure as I got him a jumper for christmas. I will be buying him toffee from thorntons though, as I think if a gift giving occasion passed without me giving him toffee, he would probably be sent in to extreme toffee-deprived delirium and I would possibly be kicked out. Will also probably get come lunch somewhere with Adam and generally make it a worthwhile day out!
Exercise was limited today due to me being on a train or at the hospital all day, so it was just the walk between stations and from the tube to the hospital. I'll try and have a longer one tomorrow though and see how it goes. Hopefully these past few days have just been a slight blip and I'll be over it. However if I'm feeling worse I'll ask to redo my lung functions and sats and see if anything needs doing. I'm not going to hang around over it and let it get bad again even if it means being a tidgey bit of a hypochondriac.
Righto, sorry for the grumble and here's to tomorrow being a new day and a fresh start! xxx
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