A quick post to wish you all a happy, healthy & wonderful 2014 :) thank you to everyone who has read, shared & commented on my blog this year, I really appreciate it.
2013 has been full of highs and lows. I started the year off very poorly but then Kalydeco came in February which is fabulous! I've become closer to some very special friends, made some wonderful memories, had a couple of hospital stays and some IVs mainly in the past 5 months but stayed positive nevertheless, carried on with my job which I love and enjoyed just being with my family, friends and boyfriend.
2014 will start with my 21st birthday celebration on the 3rd and my actual 21st birthday on the 9th! Then a Kalydeco review plus my annual review towards the end of the month. Fingers crossed for good results with that and then lots of friends 21sts coming up plus a friends wedding too in March!
I hope you all have a fab evening tonight - I'm spending it with two friends and all of our parents with lots of yummy canapés and champagne! Let's hope that 2014 brings lots of exciting things!
Lots of love xx
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Tuesday 31 December 2013
Friday 27 December 2013
Christmas
A quick blog post today just to say I hope you all had a lovely Christmas! It was so nice to have an IV free Christmas! I finished my course of IVs on the 23rd - there's nothing like cutting it fine!
Christmas is about spending time with everyone who is special to you & I certainly did that. Was so lovely to relax! Now I'm in to planning for New Years & my 21st!
I have two friends and their parents over for New Years with me & my parents so I'm making a list of yummy canapés to eat! And a week today is my 21st celebration! I am beyond excited :) then on the 9th January is my actual birthday! So lots of more exciting things to look forward too and to get sorted.
Last night I barely got any sleep as at 1am I woke up and my right lung at the top at the back was just agony if I breathed deeply, coughed, sneezed or anything. All day today it's been hurting so much too, I've never had chest pain like this so has been a slight worry. I phoned the cf unit and Judith said it does sound like a collapsed lung but I'm not particularly breathless so we decided it probably wasn't that & painkillers and rest would be a good plan and to ring if it gets any worse. This evening I can't tell if I'm slightly breathless or if I'm just panicking and even though I've had painkillers it's not changed. I'm so reluctant to go to a&e unless I have to so as long as it doesn't get any worse I'll stay like this and ring Judith again on Monday - or if it could just go that'd be amazing!
Fab news though! My friend Emily who I mentioned in my last blog receiving her double lung transplant was allowed home for Christmas! She has had to go back in but I spoke to her today and she said she's hoping to be out next week, I have everything crossed for her! It has been so lovely to get snapchats from her without her having O2 on! Please keep her, her family and her donor and their family not your thoughts :)
Oh and if I haven't said it enough times SIGN UP TO BECOME AN ORGAN DONOR! Make it your New Years resolution to give up two minutes of your time to potentially save peoples lives one day
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Christmas is about spending time with everyone who is special to you & I certainly did that. Was so lovely to relax! Now I'm in to planning for New Years & my 21st!
I have two friends and their parents over for New Years with me & my parents so I'm making a list of yummy canapés to eat! And a week today is my 21st celebration! I am beyond excited :) then on the 9th January is my actual birthday! So lots of more exciting things to look forward too and to get sorted.
Last night I barely got any sleep as at 1am I woke up and my right lung at the top at the back was just agony if I breathed deeply, coughed, sneezed or anything. All day today it's been hurting so much too, I've never had chest pain like this so has been a slight worry. I phoned the cf unit and Judith said it does sound like a collapsed lung but I'm not particularly breathless so we decided it probably wasn't that & painkillers and rest would be a good plan and to ring if it gets any worse. This evening I can't tell if I'm slightly breathless or if I'm just panicking and even though I've had painkillers it's not changed. I'm so reluctant to go to a&e unless I have to so as long as it doesn't get any worse I'll stay like this and ring Judith again on Monday - or if it could just go that'd be amazing!
Fab news though! My friend Emily who I mentioned in my last blog receiving her double lung transplant was allowed home for Christmas! She has had to go back in but I spoke to her today and she said she's hoping to be out next week, I have everything crossed for her! It has been so lovely to get snapchats from her without her having O2 on! Please keep her, her family and her donor and their family not your thoughts :)
Oh and if I haven't said it enough times SIGN UP TO BECOME AN ORGAN DONOR! Make it your New Years resolution to give up two minutes of your time to potentially save peoples lives one day
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Wednesday 11 December 2013
The holly and the IV
I have written two posts this time so please read the post below this one too, it's a very exciting one!!
After only getting a week of IVs a few weeks ago due to my port playing up it took its toll on my lungs and they need a proper boost! My temperature had been high for the past couple of weeks so I knew something was brewing but I felt okay so plodded on as I normally do, I didn't want to make a fuss if it was nothing. But last Thursday my head and sickness started to get bad, I just felt like the room was spinning and felt so queasy. Over the weekend it got worse and by Monday my lungs felt like they'd taken a blow. I had clinic on Tuesday anyway so went and explained how I'd felt and wanted some orals to tide me over until after Christmas and my 21st birthday in January but after doing my lung function which had dropped to about 45-50% we decided that I did need IVs to sort me out properly.
I've got Mero and Azteronum both three times a day. 12g of IV antibiotics a day will definitely take it's toll on my body. After only a couple of doses I'm already very achy, tired & feeling sick.
Today my chest has felt quite bad at times and chest pain is still there but hopefully now the IVs have been delivered and I can do them every 8 hours it means they'll start kicking the nasty bugs out!
On the upside at least I have some time to write Christmas cards and to try and make some decorations for my 21st celebrations! It always seems that every year I never get to enjoy the last two weeks of work as I'm too poorly - silly lungs!
But never mind, I need to be in tiptop condition for Christmas and my birthday so let's get these IVs out of the way now, they're due to finish on Christmas Eve so fingers crossed :)
After only getting a week of IVs a few weeks ago due to my port playing up it took its toll on my lungs and they need a proper boost! My temperature had been high for the past couple of weeks so I knew something was brewing but I felt okay so plodded on as I normally do, I didn't want to make a fuss if it was nothing. But last Thursday my head and sickness started to get bad, I just felt like the room was spinning and felt so queasy. Over the weekend it got worse and by Monday my lungs felt like they'd taken a blow. I had clinic on Tuesday anyway so went and explained how I'd felt and wanted some orals to tide me over until after Christmas and my 21st birthday in January but after doing my lung function which had dropped to about 45-50% we decided that I did need IVs to sort me out properly.
I've got Mero and Azteronum both three times a day. 12g of IV antibiotics a day will definitely take it's toll on my body. After only a couple of doses I'm already very achy, tired & feeling sick.
Today my chest has felt quite bad at times and chest pain is still there but hopefully now the IVs have been delivered and I can do them every 8 hours it means they'll start kicking the nasty bugs out!
On the upside at least I have some time to write Christmas cards and to try and make some decorations for my 21st celebrations! It always seems that every year I never get to enjoy the last two weeks of work as I'm too poorly - silly lungs!
But never mind, I need to be in tiptop condition for Christmas and my birthday so let's get these IVs out of the way now, they're due to finish on Christmas Eve so fingers crossed :)
Emily has new lungs!
I am sitting here with the biggest smile on my face and am so happy to tell you all that my lovely friend Emily Icke has received a double lung transplant! Yesterday, 10th December, marked 1 year of waiting on the transplant list. Emily got the call and after many hours of waiting to find out whether it was a go or not it was announced that at 7.15pm she would head down for her life changing surgery. I spent the whole day checking my phone, giving words of encouragement and just thinking about Emily but also her kind hearted donor who made this possible and their family.
Today is she is awake and breathing for herself - just amazing. Words cannot describe how happy I am for her, David and their families.
This is exactly why organ donation is so important.
Christmas is about spending time with your loved ones, family & friends and enjoying it. It isn't about how much your Christmas present cost or how many gifts you receive. So many people this christmas just want the gift of life, whether that's a lung or a heart, kidney, liver etc transplant and for somebody to give that gift..well words can't even describe it. You literally will change somebodies life.
All you need to do is go on to the organ donation website, it does only take a couple of minutes to sign up. But you MUST tell your loved ones about it as they make the decision when the time comes. I know some of you may not want to discuss it or sign up as it 'seems too morbid to be thinking about your death' but you never know what is round the corner and you could save lives, be that person who is thought about everyday and be somebodies miracle.
https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/registration_form.asp
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