Well I finished my IVs today and my lung function has fallen from 47% to 39%, hum weird! They even made me do it on 2 different machines to check it wasn't the machine that was broken, but nope its not broken.
Anyway they are not making me stay on my IVs (thank god), I have to go back in two weeks to see how I'm doing.
It is clearly because I have finished the voriconazole, I know this, they know this but I can't stay on it all the time so we shall fanny around for a few weeks and then no doubt they will put me back on it. This bloody fungus is the bane of my life, there are no drugs for it that I can have all the time as I asked the doctor. There are no studies that show the longterm affects of them and I don't fancy being the case study. I guess the drug company assume a 3 month dose is enough for someone, well no not for moi....
My port looks okish, its miles better than usual however some kind of blister has developed and theres are a few sore looking bits, but still loads better than usual. I've just put some moisturiser on it to try help it clear up quicker, past caring really.
I had my glucose tolerance test as well. I had to fast from 9pm last night and drink the most horrible drink, makes me gip thinking about it. Then I had to wait an hour and get blood taken from my arm (it can't be taken from my port) then wait another hour and get blood taken again. It's so boring, I actually fell asleep on the bed in the room so at least got to have a nap. This test looks to see if I have diabetes. It has to be done once a year or every 6 months if the results come back borderline.
I've been so fed up with this week and not really done much, I'm sick of everyone bugging me, asking me questions about the wedding and hen night. Pointless questions, things people should be able to arrange themselves like their outfits, how they are getting to the meeting spot etc. I can't arrange everything for everyone! I'm sick of feeling tired and just wanting to sleep and I'm sick of not caring about anything, I really don't give a toss about anything. I don't care what I'm eating, what I'm wearing, the fact I'm just sat like a vegetable infront of the tv all day, I don't care that I'm being boring and rude to people. I swear I feel like a robot just doing what I have to do. It's making me get headaches and I am sick of getting those too. It's my hen night tomorrow and I don't even care, two people have dropped out of it now so I have to rearrange what rooms people are staying in and no doubt I will get hassle over that.
I feel like I don't even know why I am bothering getting married because theres just no point and all it's doing is causing me loads of hassle and I'm scared I'm going to feel ill anyway! So there you go not a very good week for Gemma, I'm sure I will perk up in a few days
Subscribe to:
Post Comments (Atom)
10 comments:
awwww Gemma!! Keep ur chin up as much as possible mate...just a little bad patch...lung function sounds like mine dropping that much!! Naughty lungs!! xx
=(
Im so sorry your having a crappy time.
Boo for CF
Gemma,
Do not worry, how you are feeling about your wedding is totally NORMAL. Just prepare yourself to face the low after wedding when you will feel lost for things to do and have loads of time on your hands. Enjoy YOUR weekend. K x
Aw, I hope you feel happier soon. Maybe it's just the naff weather having an effect on people's moods.
I remember doing a glucose tolerance test years ago (I haven't had one for ages for some reason) Instead of taking blood, they asked for pee. I refused to oblige with the starter pee for ages, as I just think it's gross. I even saw on the notes, they wrote that I was 'reluctant to participate' or something. Xx
:-( cheer up darling and be strong like you normally are xxx
Babes weddings are stressful on everyone who arranges them your no different, just take it as it comes and when you start to feel better things will look rosier xx
Aww hun, you sound exactly like I did when I was about to get married and it is totally normal. It's hard enough for people without CF. Listen, everything is going to be fine, you will have the best day of your life and you must cherish every moment. Ignore the lung function - it really means jack all. The doc will put you back on Voriconozole again soon and it will bounce back again. If you feel like resting just rest. If you get a headache take paracetamol - but you must give yourself a good kick up the arse too...when you feel able!
Hope you start feeling more perky soon. Sometimes you just have to allow yourself to wallow for a bit!
People will understand, so give yourself a break! :)
Get well soon!
KSDx
mine have also decreased from 47% to 32% :(
I was devastated because i had been really pushing myself in the gym. Anyway they have started me on the tobi neb so fingers crossed it does something. :/
take care xxx
Oops, a little late to the comments...
I went on Itraconazole for about two years without any ill effects; It's not as effective as Voriconazole, but if you don't get any side effects, maybe it would be worth trying it inbetween the Voriconazole doses? That's my unqualified opinion anyway ;-)
Wedding planning can be quite stressful; me and my wife got really fed up with it all just before the wedding, but the day itself was wonderful and it made all the stress worth it in the end
Post a Comment