Little recap from last blog.
I left that admission on the 2nd dec, a little later than I hoped but I started to develope a cold towards the end of my admission and didn't want to end ivs until the latest I could, I had my cousins wedding I needed to be well for, I was determined to walk down the aisle without oxygen! So I left on the Tuesday on a small dose of steriods to get me thru the weekend and arranged a clinic appointment for the following Tuesday.
It was agreed by myself and harefield that I would be suspended from the list from the Thursday until Monday. I wanted to enjoy the weekend without worrying and life has to go on, although I want that call more than anything I cannot put my life on hold, sadly people die waiting for organs and without sounding depressing I could be one of them and you have to make the most of life aswell, don't want to look back and regret and wait for something that may not happen!
Anyways.....
I did it though, I walked down the aisle oxygen free looking normal :) , I was rough the Day before the wedding, constantly needing oxygen, the Lake District is a lot colder than sunny Surrey! But when it came to it, on the day I managed the majority of the day oxygen free, it was such a great day, and sadly went so fast! I flaked a bit in the evening, but my dress was very tight as fatty here had put on about 4 kilos since the alterations had been done haha, I spent a lot of the evening with back pain, but seen as though I wasn't on the transplant list I took lots of ibuprofen and paracetamol which got the thru the night!
I woke up Sunday morning feeling awful, my throat felt like razor blades, I was running a temperature, sneezing, chest was so achy and painful and everything was such an effort! Oxygen didn't leave my side! Stupidity I told my husband to take the home oxygen machine back with him Sunday as I wasn't needing oxygen much-amazing how quick things can change within a few hours! Luckily I had about 4 tanks so they got me thru till Monday afternoon!
Here's a few photos I have to upload from the wedding! Was lovely to have all the family together, I forgot how much I love the Lake District too! Air is so clear and the place is just so beautiful!
So as I expected I needed to go back on ivs but as Xmas was only two weeks away and not having brought any presents I really didn't want to be admitted so started home ivs.
Cut along story short they helped but not much, I needed to come in. I finished home ivs just before Xmas on the 23rd took needle out and booked to come into hospital on the 29th
Had a lovely Xmas with all the family. We went up to my in laws in lovely Hampshire
My parents and sisters joined too and had a few Xmas drinks, well they did I was mrs sober obvs! I got absolutely terrorised for wearing my cheesy Xmas jumper that lite up haha but I loved it... I looked "special" apparently and we had lots of fun taking group selfies with my selfie stick-which I would just like to point out I didn't get for Xmas! Ha
Had lunch with the In laws and afternoon, then Spent the evening at my families playing frustration, with a choc fondue and watching eastenders Xmas special...well I forced the family to put it on! Ha
Some piccys from Xmas day
So now Xmas is all over, I'm back in Frimley hospital, I have OFFICALLY transferred here now, was weird leaving the brompton as I have been there since I was about 7 years old, I can't fault how amazing they have been to me, but my health is my top priority now and they have so many patients too look after up there, I need to know I can get into hospital when I need to get in, instead of waiting or fighting for beds, I'm not going to slate the ward or hospital cause they are good, but the staff are under so much pressure up there that the last few times I had been an inpatient, maybe even longer I just felt neglected.
I also feel like after coming to firmley and how amazing the care is here, that I deserve to be at the best place for myself, got to be selfish, I'm at a stage were I don't want to take risks anymore, it's so stressful being up at the brompton, even just being in the middle of london, stupid things like parking etc you don't have that worry at Frimley, coming here I just feel so relaxed and I don't get angry at silly little things, I've constantly got visitors here, I suppose london puts a lot of people off which I don't blame them, the staff at firmley are constantly checking on you in here, making you eat, got the joys of normal hospital aswell that you don't get at the brompton that seems so stupid but like a canteen you can go to, or a cafe by enterance with a proper shop that sells redbull and lucozade so if no1s coming up I can put my oxygen on and go off for a little walk there, it's the little things. Lol
It was defo the right move for me and all the staff up here are such lovely genuine people, there such a Good team and everyone gets on with everyone! And I love having the army doctors come in with there uniform on, so weird but cool! Ha
So I am here for the new year, but with crappy lungs there's not much id be doing on NYE anyways, Ive been really wheezy and tight which is unlike me, so they have upped my steriods which I'm hating cause they make me feel so swollen and neck swells up esp when I cough, I go like purple haha and wake up like a round sumo wrestler but as long as helps my chest I'm being good about it all. Hopefully can start lowering dose early next week and gradually start coming off them again, it's not something I want to be on long term quite yet!
I'm not doing the whole new me new start, I'm happy with my little life, and the things I want to be new are out of my control! I hope for a healthy year and for things to get better and not worse. I wish the same for the people I care about esp a close friend of mine also waiting for new lungs! Every year I always say I want to help raise more awareness and never do, I may not be big on arranging charity events or doing stuff like that, I don't think that makes me a bad person, by doing this blog I suppose in one way or another it's raising awareness in some ways! But I do want to try more this year, even if it's just telling my story or experience if it encourages more people to donate to the cf trust or gets one more person to sign up for organ donation or just talk about it then that's helping!
And lastly just want to say a little tribute to the beautiful Emily Thackery who sadly passed away this week. As many people know she was well known in the cf community and done so much for raising awareness for organ donation, she started the charity Live Life Then Give Life along with a friend! She was a great support to me back when I first joined the transplant list in 2011 and throughout the years. I'm so gutted that she didn't get thru her second transplant this past month and chatting to her back in November when things were bad she still was so uplifting and positive, people throw the inspirational word around a lot but Emily really was! Some people are just a ray of sunshine and she was one of them! A true legend! Her daughter will grow up to know what a great mummy she was and will be so proud of her! Rip Hun and my heart goes out to her family and close friends!
