In an hour i have to do 2 nebulisers that takes a good 20minutes, get washed,dressed,make up hair...all with lungs that are constantly remindin u there rubbish. Even brushing my teeth is a massive chore.
Anyway, my sister always comes to clinic with me , she does the driving u see :) Dont do motorways me! and Emmas a good wheelchair pusher too ;) Got to clinic at 10 and got weighed,8st 4pound woooohoooo, must b all those chicken kebabs! Lung function next,the thing i dread the most!Doctors say you shouldnt just look at numbers ,but how can you not when there so crap! A feckin flea could do better lol. So basically i fill my lungs with as much air as possible and blow into a machine as fast and as long as i can. Watching that graph is so heartbreaking, knowing your putting so much effort in and getting no were. My lung function was slightly down today, only slightly,but when there rubbish anyway ,it matters :( So today i blew 0.58 over 0.75. So u understand......thats less than a litre. Dr says a healthy girl my size should blow around 3litres)
I mentioned to the doctor i hadnt heard from the transplant team, so he kindly chased it up and told me a test is still outstanding, a CT scan, and thats why i hadnt heard from them yet! Bloody brilliant! So now i have to wait even longer ,have a CT scan,wait for the results then wait for a transplant appointment. So i reckon its going to get end of May ,June time when im listed now...we will see?
Some bloods were taken while i was there, my port was flushed (a port is a little gadget under my skin that i have all my IV antibiotics put into :), u cant see it, itsssss magic!! ha ) and the physio also showed me some leg exercises to do at home) , my fave is the buttock clenching one, ooooh errrrr!
I was sent home with some oral antibiotics just in case i start to feel super rubbish,and my next apppointment is in 2week. Hopefully my Ct scan will b booked by then. I predict i will start my IV antibiotics when i go bk, because lung function is slightly dipped.
HERE IS A PIC OF ME IN CLINIC ,LOOKIN RAVASHING IN MY OXYGEN :)
In other news me and sis had matching celtic tattoos at the back of our necks :) They mean "sister" .....We were very brave, but i was the bravest.....of course ;) xxxx
So --- who do I need to blow (Euphemism) before they get you on the list! Because babe if they don’t get their f...ing finger out they had better be ready for war. Aunty Sue
ReplyDeleteI just read you blog posts, i want to wish you luck and hope you get a transplant and it all works out :)
ReplyDeleteI'm a 24 year old CF sufferer from Australia, who happens to have CFRD as well. I feel a bit down reading how much more server your CF seems to be (my lung function has been stable for the passed 8 or so years at 70%) :(
Hope everything works out!
Thankyou so much :) , hope you continue to be stable and im here to talk anytime x
ReplyDeleteHang in there my little peanut, Love Kim x
ReplyDeleteHi Nicola. I saw your post on TransplantFriends this evening and decided to give you a holler on your new blog -- and yes, I am from Texas :) My name is Mark. I'm 63 years old and 7 months out from a liver transplant.
ReplyDeleteYour blog entries are very touching to read, especially the way your sense of humor keeps bobbing to the surface as you struggle with such adversity.
I hope that you will stay strong and focused as you continue on your journey. Soak up all the love and encouragement you can from your family and friends. As my pal Rita from TF said the other day "For that is the beauty in the world - the giving and the accepting."
I believe you'll make that trip to America some day soon. In fact, I'd bet the "feckin" farm on it :)
Unfortunately Our Nic Nak Lost her very brave battle today and passed away peacfully in hospital after contracting a virus after a punctured lung, Nicola you were one of a kind and a dear friend to many, always puttin smiles on faces with your Humour! You were beautiful inside and out, Blessed we had you for this short time. Love you always my friend Nicola x
ReplyDeleteHi I'm so sorry to hear your very sad news. I remember Nicola from way back when I was a nurse on Upper J. In the days of Dr Ahuja! Over the past few years I've worked in community with Anita and have now taken over as childrens cf nurse in wigan. Thoughts & prayers with u all xx
ReplyDeleteHello children's CF nurse - I hope you have the insight and humility to learn from the experience that Nic shared with us.
ReplyDeleteI am Nic's Aunty, I have lost a brother and two sisters to CF and watched Nic and her family (my very dear sister especially) deal with this awful affliction over the past decades. I have three children, I am a carrier, my two oldest are carriers and my youngest is about to go through screening to find out if he carries the gene. My two eldest, now aged 38 and 34 decided not to have children - that hurts (I want to be a grandma) but not has much as watching a baby you love suffer and die from CF.
My mum and grandmother taught me to lick my children when they were born, if I tasted salt I was to worry, things have definitely moved on from then but not much. There are places like Pearce Ward at Wythenshawe and doctors like Dr Ahuja and Professor Webb, people like Anita who all make a real difference but Wigan has a lot to learn. Even just a few weeks ago my beloved niece was put on an open ward at Wigan Infirmary even though they had been told by family she needed to be isolated! I hope you have the “balls” to make a difference and if there is anything I can do let me know.
Aunty Sue x