I had clinic Wednesday, I assumed it was just going to be a typical day 7 of IV's checkup, I'd do lung function, get weighed, see the doctor, blood test, collect my next weeks worth of drugs then go home. How wrong was I?!
Basically it started with me not being able to do lung function due to my severe chest pain, I had 1 go of each test but it caused so much pain and they were worried I may cough up more blood, so they decided to stop it. I then saw the dietician who was pleased my weight had increased by 0.5kgs but it was still down 1.6kgs since I was weighed at Harefield on my fist transplant assessment in November, so obviously this isn't ideal and she has given me some advice and tips on how to increase my weight, to be honest it's nothing that I'm not already doing, I think my lungs are just using up so much energy to breathe now, every calorie is going towards that. My heart rate was also 155bpm resting, so it proves my heart is working super hard to cope with my rubbish breathing.
Then my CF consultant came in, I'd told the physio's that I had coughed up blood and just assumed it had been passed onto my doctor, but it hadn't so I told her about that and she arranged for me to have a CT scan where I will have due put in my veins so show my blood vessels in my lungs, if there are any that aren't right (which could be causing the bleeds) I will have to have a procedure to sort this, although I don't think it will come to that because this was my first proper lung bleed since 2009 I have had tiny little amounts during this time and the odd streaks of blood in my phlegm, so I don't think I will need the procedure but they want to check anyway.
Secondly, I was in what I can only describe as serious, serious amounts of pain, I was rocking back and forth in my chair and struggling to talk, needing to take a breath after each word, but then being in pain trying to take the breath in. She then said to me she could see I was in a lot of distress and wanted me to start a morphine tablet, her words were 'I know when morphine is mentioned patients usually think, oh my god I'm going to die, but she said she's had patients on it for a few years' to me I thought, thank god, because thin amount of pain is starting to get extremely difficult to cope with and I think having probably the strongest pain killer you can have should help to ease this horror! This tablet is a slow release one, which works over 12 hours but then I should carry on with my other pain killers throughout the rest of the day. She has started me on a lower dose with a view to increase if it didn't give me any side effects, other than making me very tired when I have all the different pain killers in me, I'm not having any bad side effects so I assume it will be increasd.
Josh then asked if I still needed to come to my annual review which is in February, she said no it would just exhaust me and they don't need it, she said normally annual review is when they assess you to decide a plan of action for the next year, but she said their plan for me is just to keep me alive and hope I get my transplant.
Then the worst bit was she said we should still have the annual review meeting which is usually 6 weeks after the day of tests, she said they would use this to discuss important matters. She then asked if I'd made any plans or thoughts about my funeral, or how I would want it to be at the end. I said I had plans for our wedding, being that if I wasn't well enough to wait for transplant we would marry quickly if things were going downhill, and other than knowing I want to be cremated I hadn't given it too much thought, she said it's a good idea to think about these things because I am going downhill quite fast and I guess I never know when an infection could be my last. She also said I'd be referred to palliative care soon which is sort of end of life care, they offer support and just help with things during this difficult time. I was scared when she first said it, but then I thought if something is going to hopefully help me in anyway it's not something to be afraid of.
I was a little taken aback by all of this because although I know I'm very ill and I do worry about my future, when you hear a professional basically confirming what you think, it makes it all seem very real. She was going to contact Harefield and explain I've had a bit of bad turn and hopefully see if they can get me in any earlier, I know they are very busy at the moment so I'm not expecting anything, but anything sooner than April will only be for the best.
I'm now on 3 IV's, along with all these pain killers, I'm pretty knocked out. I've been sleeping a lot more than usual but hopefully it might all help. They said ideally they would have really wanted me to be admitted into hospital that day, but I'm very stubborn and I said please give me this one week to see if the new changes help, if not of course I will have no hesitation to go in. I also no longer need to do lung function unless I am having a good day, because seeing he numbers means nothing anymore, they want to concentrate more on my symptoms, if I feel okay, I can still do it, if not, it's not something I have to try to do.
I'm still staying very positive, thinking about my funeral and things will only help if I was to pass away, it eases the pressure off my family and Josh because I will have already explained what I want, I do have a few ideas of things anyway, but I hope it doesn't come to that :) it is best to be prepared and as I said before I am very optimistic but I am still realistic and know these things could happen, there is no guarantee I will be here next year, but there is also a chance if I get on the transplant list, I may get my lungs and this time next year be completely healthy.
I still have hope, I have amazing support and so much keeping me going. I will not give up. Anything that was said to me in clinic is to help make things easier for me and those who care about me, it doesn't mean I'm going to die next week!!
That's the way I'm looking at it :)
Thank you for reading.
xxx
Saturday, 28 January 2012
Tuesday, 24 January 2012
Photo Shoot, Filming & Coughing Up Blood.. All In A Days Work
On Friday I had the lovely film crew round from the CF trust, Oli, Holly, Paul and Craig. I wasn't exactly sure what I was going to be filmed for but I knew it had something to do with CF week and a video raising awareness of CF! I still don't know 100% but I just do as I'm told :D hehe!
There were cameras and lights galore, 7 people in the house, including Josh, Mum and I, two mad little puppies in our, not so large living room. It was pretty manic but we got the job done.
I simply had to answer a range of questions, most of which I'd spoken about before, but there were some which I hadn't really been asked, particularly questions regarding whether I think I'm going to get my transplant, the second was how do Josh and I feel knowing we have to have a 'plan B' wedding in place in case things don't go to plan, also at what stage will plan B become the actual plan.
It was very thought-provoking and I guess my simple answer is that I always try to remain as optimistic but as realistic as I can. I know the stats, I know the figures, if I do get put on the active transplant list, there is a 50% chance I won't get a transplant, a 10% chance I won't make it through the operation, then there are percentages for how long you will live post transplant, 30 days, 1 year, 5 years, 10+ years. Doctor Carby told me at my assessment they usually predict the 5 year percentage depending on the way the first year goes, if you have a pretty smooth year, you have a good chance of having an extended life as opposed to if things are not so good, this means the chances are reduced but by no means out of the question.
It's important to stay realistic because those statistics are there for a reason and that reason is that it is real, 50% really won't get their transplant. There is no hiding from that fact, but on the other hand, if I didn't stay optimistic I wouldn't be living my life I would just be waiting to die, just another stat, I don't want that to be me and I hope it won't, therefore I find it important to stay positive and have belief that it will happen :)
There were two super cool things that happened during the filming, the first was using the clapper board, action... Lol! The second was hearing 'that's a wrap' when we were finished, it was very movie like and one of the guys asked me if I'd done anything like this before, I said I had been on the news twice, they said I was very good and seemed a natural. So my career choice now, is an actress ;) clearly a joke, but hey!
On Monday I had a photographer come round on behalf of the CF trust to take some photos. I had various different photos done, simple shots, photos with me and Josh, some with the puppies, some of me playing poker, pictures with oxygen on and me on my iPad as that is what I do most of the day! Haha. It was fun :)
The not so fun news, was that in the space of 2.5 days I have coughed up blood 3 times, two of them were not too much but the other one was quite bad so it was scary, I said if I coughed up anymore I would go to A&E as I was told by my CF team it could indicate a lung collapse or pneumonia etc. but so far there hasn't been anymore, other than some bad chest pain I've felt okay. So I'm happy to get through Tuesday then I'm off to clinic Wednesday anyway for my day 7 IV checkup. I'm hoping there isn't a problem and I can be 'fixed' (if only) if not, I might have to go in, but I will wait and see what happens Wednesday.
Before that though, Wednesday morning we pick up our new car :D we have finally got a motability car, I lose £200 a month but the only thing we have to pay for is petrol, so it works out okay. It's a brand new Seat Leon, in white. Very excited because we are finally getting a nice up to date car.
That is about all for now, I will probably blog Wednesday night unless I'm too tired on what is decided at clinic, please keep your fingers crossed that I am okay to carry on at home and there is no serious problems :)
Thanks for reading.
xxx
There were cameras and lights galore, 7 people in the house, including Josh, Mum and I, two mad little puppies in our, not so large living room. It was pretty manic but we got the job done.
I simply had to answer a range of questions, most of which I'd spoken about before, but there were some which I hadn't really been asked, particularly questions regarding whether I think I'm going to get my transplant, the second was how do Josh and I feel knowing we have to have a 'plan B' wedding in place in case things don't go to plan, also at what stage will plan B become the actual plan.
It was very thought-provoking and I guess my simple answer is that I always try to remain as optimistic but as realistic as I can. I know the stats, I know the figures, if I do get put on the active transplant list, there is a 50% chance I won't get a transplant, a 10% chance I won't make it through the operation, then there are percentages for how long you will live post transplant, 30 days, 1 year, 5 years, 10+ years. Doctor Carby told me at my assessment they usually predict the 5 year percentage depending on the way the first year goes, if you have a pretty smooth year, you have a good chance of having an extended life as opposed to if things are not so good, this means the chances are reduced but by no means out of the question.
It's important to stay realistic because those statistics are there for a reason and that reason is that it is real, 50% really won't get their transplant. There is no hiding from that fact, but on the other hand, if I didn't stay optimistic I wouldn't be living my life I would just be waiting to die, just another stat, I don't want that to be me and I hope it won't, therefore I find it important to stay positive and have belief that it will happen :)
There were two super cool things that happened during the filming, the first was using the clapper board, action... Lol! The second was hearing 'that's a wrap' when we were finished, it was very movie like and one of the guys asked me if I'd done anything like this before, I said I had been on the news twice, they said I was very good and seemed a natural. So my career choice now, is an actress ;) clearly a joke, but hey!
On Monday I had a photographer come round on behalf of the CF trust to take some photos. I had various different photos done, simple shots, photos with me and Josh, some with the puppies, some of me playing poker, pictures with oxygen on and me on my iPad as that is what I do most of the day! Haha. It was fun :)
The not so fun news, was that in the space of 2.5 days I have coughed up blood 3 times, two of them were not too much but the other one was quite bad so it was scary, I said if I coughed up anymore I would go to A&E as I was told by my CF team it could indicate a lung collapse or pneumonia etc. but so far there hasn't been anymore, other than some bad chest pain I've felt okay. So I'm happy to get through Tuesday then I'm off to clinic Wednesday anyway for my day 7 IV checkup. I'm hoping there isn't a problem and I can be 'fixed' (if only) if not, I might have to go in, but I will wait and see what happens Wednesday.
Before that though, Wednesday morning we pick up our new car :D we have finally got a motability car, I lose £200 a month but the only thing we have to pay for is petrol, so it works out okay. It's a brand new Seat Leon, in white. Very excited because we are finally getting a nice up to date car.
That is about all for now, I will probably blog Wednesday night unless I'm too tired on what is decided at clinic, please keep your fingers crossed that I am okay to carry on at home and there is no serious problems :)
Thanks for reading.
xxx
Friday, 20 January 2012
Update
I'm back on IV's again, I managed a whopping 2 weeks off. Wooweeee lol. It's still January and I'm on my second course of IV's in 2012 lol.
I looked at my annual review letter earlier from Feb 2011 and it said in 2010 I had two courses of IV's, one in May which I only had as a precaution due to going abroad, it's always best to cover yourself when going on holiday because it's not ideal to get sick! Also you have to be in as best condition to fly. Obviously this doesn't apply to me anymore, I can no longer get any travel insurance and as I use oxygen and a wheelchair, it's not easy to sort all these things out. Anyway, the second course of IV's was November which was also when transplant was first mentioned to me and they thought I was ready to be referred but obviously my weight was too low.
Then in 2011 I had 9 courses of IV's two of which were 3 weeks courses, so I spent a total of 20 weeks on IV's compared to 4 weeks the previous year! What a difference, it's scary how quickly things have changed, I used to rarely need IV's because I would have just tried to cope and tended to get away with it. But now my breathing and coughing is so difficult to deal with, as soon as I start slipping I have to have IV's to prevent my infection getting so out of control it could end up being a serious problem.
When I saw the transplant team at Harefield they said my lungs looked pretty bad and they also said due to that a bad infection/nasty bug/flu could kill me, for example if I got the flu virus, pneumonia etc. so it's very important for me to stay on top of my health, even though IV's are one of the worst things to put up with, I can deal with everything else but IV's suck. I suffer so badly with side effects, despite taking tablets to control the problems, like sickness, headaches etc. it still ruins me and basically knocks me out for the entire course. Something which is supposed to be doing good, tends to make me feel so bad I wonder why I bothered starting them in the first place, lol!! IV's rarely make me feel 'better' anymore and that is why I have to have them so often, I only feel a little less breathless while I'm on them, then the day after I stop I go downhill again immediately and feel back to square one again. So it is annoying, but as I said, when my CRP (infection levels) are elevated, I have to have them to get those numbers back down, they should be below 10 at least, I don't know what mine were this time, I will find out when I go to back for my day 7 checkup next Wednesday.
I did receive some good news at clinic, I've been put on a different pain killer, Papworth usually only prescribe Tramadol as the strongest pain killers but it did not agree with me, so I'm on something else nownwhich has definitely helped :).
The second bit of good news was regarding my liver, obviously at my assessment Harefield were slightly concerned about my liver disease because Papworth hadn't sent much information about it, to what extent it was etc. anyway, I asked my consultant if this was a reason to worry about not being listed and she said, once Harefield got my liver write-up they were happy, I am seen by Addenbrookes for my liver and their consultant said on my most recent ultrasound scan, everything seemed okay and the only reason I am said to have 'liver disease' is because I have early stages of it, but mainly because my blood doesn't clot too well despite having high doses of Vitamin K, IV and oral tablets, nothing really improved my numbers. But they said this might not even be due to my liver, it could be because I am underweight and my body doesn't have all the proper nutrients required to produce clotting factors. So I will take this as a positive because unless my numbers are so drastic that there is a risk I could bleed to death during transplant or something, then I think I'm okay... Time will tell, but for now, I'm less worried :)
My weight was down but I have been having a lot of sickness and stomach issues lately, so I'm hoping once this passes and I'm not sick so much from coughing particularly, then I will start gaining again.
That is about all to update on :)
Thank you for reading.
xxx
I looked at my annual review letter earlier from Feb 2011 and it said in 2010 I had two courses of IV's, one in May which I only had as a precaution due to going abroad, it's always best to cover yourself when going on holiday because it's not ideal to get sick! Also you have to be in as best condition to fly. Obviously this doesn't apply to me anymore, I can no longer get any travel insurance and as I use oxygen and a wheelchair, it's not easy to sort all these things out. Anyway, the second course of IV's was November which was also when transplant was first mentioned to me and they thought I was ready to be referred but obviously my weight was too low.
Then in 2011 I had 9 courses of IV's two of which were 3 weeks courses, so I spent a total of 20 weeks on IV's compared to 4 weeks the previous year! What a difference, it's scary how quickly things have changed, I used to rarely need IV's because I would have just tried to cope and tended to get away with it. But now my breathing and coughing is so difficult to deal with, as soon as I start slipping I have to have IV's to prevent my infection getting so out of control it could end up being a serious problem.
When I saw the transplant team at Harefield they said my lungs looked pretty bad and they also said due to that a bad infection/nasty bug/flu could kill me, for example if I got the flu virus, pneumonia etc. so it's very important for me to stay on top of my health, even though IV's are one of the worst things to put up with, I can deal with everything else but IV's suck. I suffer so badly with side effects, despite taking tablets to control the problems, like sickness, headaches etc. it still ruins me and basically knocks me out for the entire course. Something which is supposed to be doing good, tends to make me feel so bad I wonder why I bothered starting them in the first place, lol!! IV's rarely make me feel 'better' anymore and that is why I have to have them so often, I only feel a little less breathless while I'm on them, then the day after I stop I go downhill again immediately and feel back to square one again. So it is annoying, but as I said, when my CRP (infection levels) are elevated, I have to have them to get those numbers back down, they should be below 10 at least, I don't know what mine were this time, I will find out when I go to back for my day 7 checkup next Wednesday.
I did receive some good news at clinic, I've been put on a different pain killer, Papworth usually only prescribe Tramadol as the strongest pain killers but it did not agree with me, so I'm on something else nownwhich has definitely helped :).
The second bit of good news was regarding my liver, obviously at my assessment Harefield were slightly concerned about my liver disease because Papworth hadn't sent much information about it, to what extent it was etc. anyway, I asked my consultant if this was a reason to worry about not being listed and she said, once Harefield got my liver write-up they were happy, I am seen by Addenbrookes for my liver and their consultant said on my most recent ultrasound scan, everything seemed okay and the only reason I am said to have 'liver disease' is because I have early stages of it, but mainly because my blood doesn't clot too well despite having high doses of Vitamin K, IV and oral tablets, nothing really improved my numbers. But they said this might not even be due to my liver, it could be because I am underweight and my body doesn't have all the proper nutrients required to produce clotting factors. So I will take this as a positive because unless my numbers are so drastic that there is a risk I could bleed to death during transplant or something, then I think I'm okay... Time will tell, but for now, I'm less worried :)
My weight was down but I have been having a lot of sickness and stomach issues lately, so I'm hoping once this passes and I'm not sick so much from coughing particularly, then I will start gaining again.
That is about all to update on :)
Thank you for reading.
xxx
Friday, 13 January 2012
Lack of blogging!
I apologise for my lack of blogs lately, I really haven't been too well and I have been checking in on Facebook but I haven't been doing much other than sitting on the sofa, in my pyjamas, cuddling the puppies.
Wednesday was Josh's birthday, we went out for a meal with his family and my parents. It was good fun and we all had a laugh as always! It was a carvery which is a love of mine, particularly roast potatoes :) I did try and hide how unwell I was, I was drugged up on pain killers but I still hate people seeing how bad I am, I don't want people to feel sorry for me or anything like that and I like to feel as if I am beating cf because I am still doing what I enjoy, just with the added extra of strong pain killers lol!
When people come round our house, I feel I'm in my own environment and it's acceptable for me to show I'm not well, whether it be because I'm lazing around in my pyjamas, or on my oxygen etc. it's different than being out in public. My close family and Josh understand how bad I am because I don't hide it from them, but when people ask how I am I usually say struggling a bit, but I'm okay, because people probably don't want to hear me giving them a sob story haha!!
Health wise, I am pretty bad. I have been getting some severe chest pains, I have pleurisy very often and I do have a flare up at the moment, but I've also had these new pains, stabbing pains which feel like they are coming from the depths of my lungs, every single breath hurts at the moment. I do have clinic on Wednesday so I will suggest an X-ray just in case there is anything to worry about, as these pains are new it could be something but it could equally just be a very bad infection. The IV's I had over Christmas and new year did very little, I feel worse now than before I started them. I was on them for 3 weeks, then I stopped to see if it was the IV's making me feel bad but that didn't seem to be the case so I will ask to change to some new IV's which will hopefully kick this evil infection in the backside, failing all that, or if there is something very wrong, I will have no option but to go into hospital. But at the moment that is last resort, because I hate it!
I have my pre-transplant dental check up on Monday, you have to have all dental work sorted before you can be listed, I have a chipped tooth and may need a filling so I will find out that on Monday. I also have the CF trust coming round next Friday to do some filming for CF week, I'm not 100% sure what sort of thing it is, which is why this is pretty vague but I will find out I guess :)
So that is about all for now! I promise I will update quicker next time.
Thank you for reading.
xxx
Wednesday was Josh's birthday, we went out for a meal with his family and my parents. It was good fun and we all had a laugh as always! It was a carvery which is a love of mine, particularly roast potatoes :) I did try and hide how unwell I was, I was drugged up on pain killers but I still hate people seeing how bad I am, I don't want people to feel sorry for me or anything like that and I like to feel as if I am beating cf because I am still doing what I enjoy, just with the added extra of strong pain killers lol!
When people come round our house, I feel I'm in my own environment and it's acceptable for me to show I'm not well, whether it be because I'm lazing around in my pyjamas, or on my oxygen etc. it's different than being out in public. My close family and Josh understand how bad I am because I don't hide it from them, but when people ask how I am I usually say struggling a bit, but I'm okay, because people probably don't want to hear me giving them a sob story haha!!
Health wise, I am pretty bad. I have been getting some severe chest pains, I have pleurisy very often and I do have a flare up at the moment, but I've also had these new pains, stabbing pains which feel like they are coming from the depths of my lungs, every single breath hurts at the moment. I do have clinic on Wednesday so I will suggest an X-ray just in case there is anything to worry about, as these pains are new it could be something but it could equally just be a very bad infection. The IV's I had over Christmas and new year did very little, I feel worse now than before I started them. I was on them for 3 weeks, then I stopped to see if it was the IV's making me feel bad but that didn't seem to be the case so I will ask to change to some new IV's which will hopefully kick this evil infection in the backside, failing all that, or if there is something very wrong, I will have no option but to go into hospital. But at the moment that is last resort, because I hate it!
I have my pre-transplant dental check up on Monday, you have to have all dental work sorted before you can be listed, I have a chipped tooth and may need a filling so I will find out that on Monday. I also have the CF trust coming round next Friday to do some filming for CF week, I'm not 100% sure what sort of thing it is, which is why this is pretty vague but I will find out I guess :)
So that is about all for now! I promise I will update quicker next time.
Thank you for reading.
xxx
Monday, 2 January 2012
What A Year! 2011 and Looking Ahead to 2012...
I am in two minds about this year. The first is so glad it's over, the second is that this year has been quite successful.
My health has changed a lot this year, especially when I compare myself to last year, I could climb the stairs, I didn't have a wheelchair, I had 3 courses of IV's because sheer stubbornness tended to get me through my bugs. Then this year, I started oxygen in January, overnight and when walking then I was told to use it when I was struggling with my breathing, so the usage became more frequent (at home, still not 100% comfortable wearing it in public.) I use my wheelchair a lot, other than small walks. I have had 9 courses of IV's and have spent 20 weeks of the year on the evil IV's, also the more unwell I am, the worse I suffer with the IV side effects. Last year I was advised to consider transplant, now I am actually being assessed and if I am deemed 'well enough' at my assessment in April and everything goes to plan, I will be on the active transplant waiting list.
Over the course of the year I have seen my health deteriorate quite fast and my ever-increasing need for IV's and my inability to do simple tasks, such as washing my hair, getting dressed, climbing the stairs without the help of Josh is a constant reminder of just how bad I have got.
Also this year I experienced my first ever loss, I have lost family, my great Nanny, my second cousin David. But losing my puppy Foxxy was the hardest thing I have ever gone through, I couldn't eat for days because all I wanted to do was cry and grieve. Losing anybody close is difficult but I'd never gone through something that close to home before and it was horrible. I still miss her so much and I would give anything to have her back, but I take comfort in knowing if we did still have Foxxy we wouldn't have been able to give these new little babies a great, loving home, with a Mummy and Daddy that spoil them and treat them like our children not just pets. I know Foxxy is watching over us and she will protect us and the new pups :) xxxxx
This year has also had its good sides. When I decided to make my blog public after 2 years of writing privately, only to those with CF, I never expected it to have generated so much. I thought maybe a handful of people would have read it and maybe I'd get the odd comment but what actually happened was unreal.
Firstly my story was in my local newspaper the Evening Star, I was also on ITV and BBC local news, on Radio Suffolk and I also was in the daily mail after fronting a national organ donation campaign with Live Life Then Give Live. I was invited to attend the Evening Star press ball, where I met some wonderful people and received a number of amazing gifts through sheer generosity. The ball also raised a lot of money for the CF trust and various other local charities. I also won the Stars of Suffolk outstanding bravery award which was a complete shock but an absolute honour, not for one minute did I expect to win so when I actually did, I was very emotional and cried my way onto the stage, lol! I became an ambassador for LLTGL, next year I hope to raise even more awareness about organ donation and hopefully, along with the other amazing people working with LLTGL, we can put an end to the statistic that only 50% of people on the list will get their transplant in time. We also did the abseil for the CF trust where my family and friends raised over £3000. A good friend of mine, Jo, had her birthday party and wanted all of her 'presents' to be donations to CF.
One of the most important things that has happened this year is realising who will be there when things go wrong, who will be by your side when you are too weak to do anything, those who don't just perk up when you are unwell, but the special ones who are there through the good and the bad times.
Firstlt my parents, Jacqui, Gary and my Stepdad Matt, they are absolutely fantastic, I couldn't ask for anything more, they are always there for me no matter what.
Josh is amazing, I don't think I need to explain exactly why because it's very obvious how important he is to me, we have almost been together 3 years and have been engaged for 1 year. He gave up his job as an estate agent this year to become my full time carer, so I was able to move in with him permanently and I am forever thankful that he has done this for me.
My Nanny and Grandad, Margaret and Len - they always take me back and forth to clinic, visit me many times when I am in hospital and are always there to to help when I need it, I always get a text from my Nanny every clinic appointment to say good luck and that they hope it goes well, this sort of thing keeps me going because I know they are thinking of me.
Likewise my Auntie Hayley, I get texts from her too before clinic and her first question is always, how are you feeling at the moment? We also always have giggles at poker :)
My Sister Kim is great too and we have just found out the amazing news she is pregnant so I am going to be an Auntie :) I love my sister to pieces and I am so so happy for her and her fiancé Kieren.
Also Josh's family have been so supportive, some peoples parents may not want their son/daughter to be with someone who has as much baggage as me (lol!) and ultimately an uncertain future, but they have been great and very understanding particularly over the last year when things have got quite difficult for me.
I have also made some great friends this year mainly people with CF, like Kimberley Kneil, she is a lovely, caring person and when we lost Foxxy she sent me a heart shaped pendant with a hologram of me and Fox on it with very kind words in the other side, I thought this was such a wonderful thing and it is my little lucky charm, she is also waiting to be listed for a transplant at Harefield and I have no doubt when we both receive them we will be meeting up plenty of times :D
Also, Alan Crowther, we became very close this year and he has been a great support and a good friend particularly when I was in hospital, we would sit up until silly hours talking on msn, he is going through a difficult time at the moment as he is unable to have a transplant in the UK and is becoming very sick and I am constantly thinking of him and wishing him better.
Another friend is Victoria Glen, she is a lovely girl and whenever I need advice, or just someone to chat to, she is there. She hasn't had the best year but I am positive good things will happen for her this year because she is so lovely she deserves a break :) and when I have had my transplant, I am travelling up to Scotland where we are going to get absolutely drunk together because we are actual alcoholics, hehe!
Finally people like Clare Cruickshank, Kirstie Tancock, Chantelle Hughes, Emily Thackray, Pete Franklin and anyone else I may have missed, I apologise. But it's been a great year for making new friends and if I receive my transplant I have a lot of wonderful people to meet up with :).
Finally, the fantastic people who read my blog, the support I have received has been overwhelming and I thank you all for your kindness :)
So I'm going to end this blog by saying that my new years resolution is to focus on what is important. Staying as well as possible, getting myself on the transplant list, continuing to work hard raising awareness for CF and organ donation and looking out for the people I care about and being eternally grateful to the amazing people who care about me.
Thanks for reading and I wish you all a happy, healthy 2012!
xxx
My health has changed a lot this year, especially when I compare myself to last year, I could climb the stairs, I didn't have a wheelchair, I had 3 courses of IV's because sheer stubbornness tended to get me through my bugs. Then this year, I started oxygen in January, overnight and when walking then I was told to use it when I was struggling with my breathing, so the usage became more frequent (at home, still not 100% comfortable wearing it in public.) I use my wheelchair a lot, other than small walks. I have had 9 courses of IV's and have spent 20 weeks of the year on the evil IV's, also the more unwell I am, the worse I suffer with the IV side effects. Last year I was advised to consider transplant, now I am actually being assessed and if I am deemed 'well enough' at my assessment in April and everything goes to plan, I will be on the active transplant waiting list.
Over the course of the year I have seen my health deteriorate quite fast and my ever-increasing need for IV's and my inability to do simple tasks, such as washing my hair, getting dressed, climbing the stairs without the help of Josh is a constant reminder of just how bad I have got.
Also this year I experienced my first ever loss, I have lost family, my great Nanny, my second cousin David. But losing my puppy Foxxy was the hardest thing I have ever gone through, I couldn't eat for days because all I wanted to do was cry and grieve. Losing anybody close is difficult but I'd never gone through something that close to home before and it was horrible. I still miss her so much and I would give anything to have her back, but I take comfort in knowing if we did still have Foxxy we wouldn't have been able to give these new little babies a great, loving home, with a Mummy and Daddy that spoil them and treat them like our children not just pets. I know Foxxy is watching over us and she will protect us and the new pups :) xxxxx
This year has also had its good sides. When I decided to make my blog public after 2 years of writing privately, only to those with CF, I never expected it to have generated so much. I thought maybe a handful of people would have read it and maybe I'd get the odd comment but what actually happened was unreal.
Firstly my story was in my local newspaper the Evening Star, I was also on ITV and BBC local news, on Radio Suffolk and I also was in the daily mail after fronting a national organ donation campaign with Live Life Then Give Live. I was invited to attend the Evening Star press ball, where I met some wonderful people and received a number of amazing gifts through sheer generosity. The ball also raised a lot of money for the CF trust and various other local charities. I also won the Stars of Suffolk outstanding bravery award which was a complete shock but an absolute honour, not for one minute did I expect to win so when I actually did, I was very emotional and cried my way onto the stage, lol! I became an ambassador for LLTGL, next year I hope to raise even more awareness about organ donation and hopefully, along with the other amazing people working with LLTGL, we can put an end to the statistic that only 50% of people on the list will get their transplant in time. We also did the abseil for the CF trust where my family and friends raised over £3000. A good friend of mine, Jo, had her birthday party and wanted all of her 'presents' to be donations to CF.
One of the most important things that has happened this year is realising who will be there when things go wrong, who will be by your side when you are too weak to do anything, those who don't just perk up when you are unwell, but the special ones who are there through the good and the bad times.
Firstlt my parents, Jacqui, Gary and my Stepdad Matt, they are absolutely fantastic, I couldn't ask for anything more, they are always there for me no matter what.
Josh is amazing, I don't think I need to explain exactly why because it's very obvious how important he is to me, we have almost been together 3 years and have been engaged for 1 year. He gave up his job as an estate agent this year to become my full time carer, so I was able to move in with him permanently and I am forever thankful that he has done this for me.
My Nanny and Grandad, Margaret and Len - they always take me back and forth to clinic, visit me many times when I am in hospital and are always there to to help when I need it, I always get a text from my Nanny every clinic appointment to say good luck and that they hope it goes well, this sort of thing keeps me going because I know they are thinking of me.
Likewise my Auntie Hayley, I get texts from her too before clinic and her first question is always, how are you feeling at the moment? We also always have giggles at poker :)
My Sister Kim is great too and we have just found out the amazing news she is pregnant so I am going to be an Auntie :) I love my sister to pieces and I am so so happy for her and her fiancé Kieren.
Also Josh's family have been so supportive, some peoples parents may not want their son/daughter to be with someone who has as much baggage as me (lol!) and ultimately an uncertain future, but they have been great and very understanding particularly over the last year when things have got quite difficult for me.
I have also made some great friends this year mainly people with CF, like Kimberley Kneil, she is a lovely, caring person and when we lost Foxxy she sent me a heart shaped pendant with a hologram of me and Fox on it with very kind words in the other side, I thought this was such a wonderful thing and it is my little lucky charm, she is also waiting to be listed for a transplant at Harefield and I have no doubt when we both receive them we will be meeting up plenty of times :D
Also, Alan Crowther, we became very close this year and he has been a great support and a good friend particularly when I was in hospital, we would sit up until silly hours talking on msn, he is going through a difficult time at the moment as he is unable to have a transplant in the UK and is becoming very sick and I am constantly thinking of him and wishing him better.
Another friend is Victoria Glen, she is a lovely girl and whenever I need advice, or just someone to chat to, she is there. She hasn't had the best year but I am positive good things will happen for her this year because she is so lovely she deserves a break :) and when I have had my transplant, I am travelling up to Scotland where we are going to get absolutely drunk together because we are actual alcoholics, hehe!
Finally people like Clare Cruickshank, Kirstie Tancock, Chantelle Hughes, Emily Thackray, Pete Franklin and anyone else I may have missed, I apologise. But it's been a great year for making new friends and if I receive my transplant I have a lot of wonderful people to meet up with :).
Finally, the fantastic people who read my blog, the support I have received has been overwhelming and I thank you all for your kindness :)
So I'm going to end this blog by saying that my new years resolution is to focus on what is important. Staying as well as possible, getting myself on the transplant list, continuing to work hard raising awareness for CF and organ donation and looking out for the people I care about and being eternally grateful to the amazing people who care about me.
Thanks for reading and I wish you all a happy, healthy 2012!
xxx
Saturday, 24 December 2011
IV's for Christmas! And Cute Puppy Photos
I had to go to Papworth on Wednesday, I had been feeling very unwell and had hoped to not have to start IV's until after Xmas. It started about 2-3 weeks ago, I had a bit of a cold, then it progressed to a bad cold and finally the cold went to my chest causing a bad chest infection. So I have been struggling for quite a few days now and to be honest my clinic appointment couldn't come any quicker. I've never been on IV's for Christmas but unless I wanted to spend Christmas curled up on the sofa, feeling sorry for myself, I had to have them this year.
I started Wednesday and the side effects have hit me pretty hard as usual, I've been suffering with sickness, headaches, ear pain, temperature, tiredness and itchyness :/ not fun.
I also don't feel any better yet, the IV's have made my chest tight and wheezy, so I'm actually feeling worse than before I started lol. I have tomorrow (Xmas eve) to pick up, or I'm going to be ill on Christmas day, boohooooooo!!
Anyway, enough of that. I want to wish all my blog readers a fantastic Christmas and a happy new year! I hope your day is filled with happiness, love and laughter :) not forgetting mountains of food ;)
Oh I also have the date of my transplant assessment, the 2-3 day one. It is the 2nd of April, quite a long time to wait but I am top of their list for cancellations, so hopefully it might not be that long, but if it is at least I have plenty of time to get in tip-top weight condition.
I just want to leave you with a few photos to hopefully put a smile on everyone's face :) it certainly does with me. My little Christmas babies (ignore me in my pjs...)
I started Wednesday and the side effects have hit me pretty hard as usual, I've been suffering with sickness, headaches, ear pain, temperature, tiredness and itchyness :/ not fun.
I also don't feel any better yet, the IV's have made my chest tight and wheezy, so I'm actually feeling worse than before I started lol. I have tomorrow (Xmas eve) to pick up, or I'm going to be ill on Christmas day, boohooooooo!!
Anyway, enough of that. I want to wish all my blog readers a fantastic Christmas and a happy new year! I hope your day is filled with happiness, love and laughter :) not forgetting mountains of food ;)
Oh I also have the date of my transplant assessment, the 2-3 day one. It is the 2nd of April, quite a long time to wait but I am top of their list for cancellations, so hopefully it might not be that long, but if it is at least I have plenty of time to get in tip-top weight condition.
I just want to leave you with a few photos to hopefully put a smile on everyone's face :) it certainly does with me. My little Christmas babies (ignore me in my pjs...)
:)
Merry Christmas! xxx
Wednesday, 14 December 2011
Transplant Assessment
Today I had the final part of my transplant assessment which was meeting with the Doctor. I was very nervous and felt sick all day because there were 3 possible outcomes, the first was a flat out no to transplant for one reason or another, the second was to wait a while, which could be because say my weight was still not good enough, or my blood sugars, the final outcome was I'd go back in the new year for a 2/3 day assessment, which is even more tests and an overnight stay, more important chats and information.
Thankfully, I got the third option. So I'll be going back to Harefield in the next few months, or it could be earlier if they have any cancellations.
The chat was a mixture of emotions, I was told I am ill enough to need a transplant and as there isn't any other treatments they can offer me, transplant is my only option. I was expecting them to tell me I was too well especially because I'm not yet on 24 hour oxygen, but the fact I have a very poor quality of life, I do use oxygen and my wheelchair and also the fact I have spent about 18 weeks of this year on IV's made them think I am bad enough to be listed. They actually seemed like it was quite urgent, when I left the doctor said 'We will get you in for your next assessment sooner rather than later and hopefully if you are well enough, get you on that list as soon as possible!'
The bad bit of news was that I am blood group O which is the most common so the waiting time is longer, but also for some weird reason there are less O blood group organ donors that are short, a very strange statistic but an important one. He said this could mean I'll have a longer waiting time for new lungs because finding a suitable match could be more difficult, but it might not and I could get lungs quickly, I guess I will just have to wait and see :)
The other bit of not so good news, is that I do have liver disease but I don't believe it is too bad as I only have yearly ultrasound scans so if my CF team aren't too concerned about it, hopefully Harefield won't either. But if they think my liver is bad, I might not be able to have a transplant.
They didn't seem too concerned about my weight, he said obviously it would be ideal if I was a little bigger and it's the perfect time to gain weight (lots of Xmas food!) and also my average blood sugar was the best it's been in a very long time, so they were quite happy with that.
So to sum it up, I hope my liver isn't too bad. I'm a little worried about my blood group but I'm happy that they aren't saying I'm too well and I should get on the list :)
Thanks for reading.
xxx
Thankfully, I got the third option. So I'll be going back to Harefield in the next few months, or it could be earlier if they have any cancellations.
The chat was a mixture of emotions, I was told I am ill enough to need a transplant and as there isn't any other treatments they can offer me, transplant is my only option. I was expecting them to tell me I was too well especially because I'm not yet on 24 hour oxygen, but the fact I have a very poor quality of life, I do use oxygen and my wheelchair and also the fact I have spent about 18 weeks of this year on IV's made them think I am bad enough to be listed. They actually seemed like it was quite urgent, when I left the doctor said 'We will get you in for your next assessment sooner rather than later and hopefully if you are well enough, get you on that list as soon as possible!'
The bad bit of news was that I am blood group O which is the most common so the waiting time is longer, but also for some weird reason there are less O blood group organ donors that are short, a very strange statistic but an important one. He said this could mean I'll have a longer waiting time for new lungs because finding a suitable match could be more difficult, but it might not and I could get lungs quickly, I guess I will just have to wait and see :)
The other bit of not so good news, is that I do have liver disease but I don't believe it is too bad as I only have yearly ultrasound scans so if my CF team aren't too concerned about it, hopefully Harefield won't either. But if they think my liver is bad, I might not be able to have a transplant.
They didn't seem too concerned about my weight, he said obviously it would be ideal if I was a little bigger and it's the perfect time to gain weight (lots of Xmas food!) and also my average blood sugar was the best it's been in a very long time, so they were quite happy with that.
So to sum it up, I hope my liver isn't too bad. I'm a little worried about my blood group but I'm happy that they aren't saying I'm too well and I should get on the list :)
Thanks for reading.
xxx
Sunday, 4 December 2011
Puppies and & 'Outstanding Bravery' Award
Its been a week since we got two new puppies, we were going to get a new puppy before we sadly lost our baby Foxxy, so we decided to go ahead and not let the puppies seller down. They sent us a photo of the girls and we found it very difficult to decide which to have, I liked one and Josh liked the other and had we still had Fox we would've had two dogs anyway, so we decided to get both of the girls.
They are Pomeranians, Foxxy was a Pomeranian x chihuahua, so they would be similar to her traits but look a bit different.
Their names are Tinkerbell (the white stripe one) and Milly-Mia.
On Friday I attended an award ceremony, the Stars of Suffolk awards. I was nominated for outstanding bravery, I was up against two amazing, inspirational people and didn't think I stood a chance of winning. I wasn't feeling well at all but I got myself dolled up and managed to go, Josh, Mum, Dad, my Stepdad, Nanny and Grandad all came too.
The evening was very glamorous and emotional, so many amazing stories of equally amazing people.
To my complete shock, I won the award. I got a standing ovation, a beautiful award and a certificate. Each winner also got a special prize and mine was an iPad2!!! It will be amazing when I go into hospital and will definitely help with boredom.
I'm so thankful and grateful to the people who nominated me, my family didn't realise you could nominate people so all my nominations were from people who don't even know me, that makes me feel so good. I am also thankful to the judging panel who chose me to win.
It was an amazing night and I'm so glad I was able to be part of it, I was truly honoured to be in the same room as so many inspirational people :)
Health wise, I'm not great. Struggling a lot with my breathing and coughing more than normal, I still have the awful headaches and keep having temperatures which isn't fun! Hopefully I pick up a bit and can be well enough to have a great Christmas!
Thanks for reading.
xxx
They are Pomeranians, Foxxy was a Pomeranian x chihuahua, so they would be similar to her traits but look a bit different.
Their names are Tinkerbell (the white stripe one) and Milly-Mia.
On Friday I attended an award ceremony, the Stars of Suffolk awards. I was nominated for outstanding bravery, I was up against two amazing, inspirational people and didn't think I stood a chance of winning. I wasn't feeling well at all but I got myself dolled up and managed to go, Josh, Mum, Dad, my Stepdad, Nanny and Grandad all came too.
The evening was very glamorous and emotional, so many amazing stories of equally amazing people.
To my complete shock, I won the award. I got a standing ovation, a beautiful award and a certificate. Each winner also got a special prize and mine was an iPad2!!! It will be amazing when I go into hospital and will definitely help with boredom.
I'm so thankful and grateful to the people who nominated me, my family didn't realise you could nominate people so all my nominations were from people who don't even know me, that makes me feel so good. I am also thankful to the judging panel who chose me to win.
It was an amazing night and I'm so glad I was able to be part of it, I was truly honoured to be in the same room as so many inspirational people :)
Health wise, I'm not great. Struggling a lot with my breathing and coughing more than normal, I still have the awful headaches and keep having temperatures which isn't fun! Hopefully I pick up a bit and can be well enough to have a great Christmas!
Thanks for reading.
xxx
Friday, 25 November 2011
Our Little Angel x
Our princess, Foxxy, has passed away.
This is the hardest blog I've ever had to write and to be honest, it's a blog I never expected to have to write because I always thought she would out live me.
On the day of my transplant assessment, she was hit by a car and immediately went to heaven.
It was a tragic accident and I'll try to explain exactly what happened.
Foxxy had outgrown her collar, so we intended to get her a new one for her 1st birthday which would have been the 7th December. So because we didn't want her to be on her own while we were at Harefield my Stepdad was going to pick her up and bring her back with him to their house. Obviously, as she didn't have a collar we decided he would use Fifi's which is their dog, she is only a westie/bichon frise, so she is small but the harness turned out to be too big for Foxxy. To start with he said it fit fine, then as she got to the car she stood up on her back legs and managed to wriggle out of the harness, she then ran out into the road and a car was coming, normally we live on a very quiet road where there is barely any traffic, so for a car to have been coming at that exact minute is what makes it so devestating. She was hit by the front of the car and it was obviously an instant death, she was only very tiny so any impact would have killed her, she was not crushed by the wheel or anything and we know she did not suffer any pain so I'm glad about that. Her last memories will be running, which she absolutely loved to do, she'd just run around the garden and run madly around the house, so she was free and running happily.
Foxxy was 11 months old, so she barely had time to live before she was taken. But we know she had the best life, even if it was short. We couldn't have possibly loved her anymore and she was spoiled rotten! She was cuddled daily, fed lots of food and special extras, she had tons of toys and she even got to sleep on our bed for the last few nights. She brought us so much joy and happiness, she gave us strength when times were tough or when I wasn't feeling great, a big cuddle with her and seeing her beautiful face made me feel I could get through anything. If me and Josh ever had an argument, she brought us back together and kept us strong.
I can't imagine life without her, it's so difficult I've never experienced hurt like this in my life and I am trying to stay strong because I know she would've wanted us to think of the good times we were so lucky to have with her. My baby girl will never be replaced and it will take time for this pain to heal, it will be particularly hard because we had such big plans for her birthday and Christmas.
At the moment, she is safe at the vets and she will be cremated on Saturday, we are going to put her ashes in the garden (her favourite place) and plant a rose bush where the ashes will be buried.
This way, she will still be a part of our house and if we ever feel she is not with us, she will be happy in the garden. Josh and I are also going to get memorial tattoos, I'm going to get a butterfly with an angel wing and Josh is getting a phrase.
I know she will be our little guardian angel and will be protecting us for the rest of our lives.
R.I.P my sweetheart, we miss you more than anyone can ever imagine and will love you forever, you were our baby and will never ever be forgotten.
xxx
This is the hardest blog I've ever had to write and to be honest, it's a blog I never expected to have to write because I always thought she would out live me.
On the day of my transplant assessment, she was hit by a car and immediately went to heaven.
It was a tragic accident and I'll try to explain exactly what happened.
Foxxy had outgrown her collar, so we intended to get her a new one for her 1st birthday which would have been the 7th December. So because we didn't want her to be on her own while we were at Harefield my Stepdad was going to pick her up and bring her back with him to their house. Obviously, as she didn't have a collar we decided he would use Fifi's which is their dog, she is only a westie/bichon frise, so she is small but the harness turned out to be too big for Foxxy. To start with he said it fit fine, then as she got to the car she stood up on her back legs and managed to wriggle out of the harness, she then ran out into the road and a car was coming, normally we live on a very quiet road where there is barely any traffic, so for a car to have been coming at that exact minute is what makes it so devestating. She was hit by the front of the car and it was obviously an instant death, she was only very tiny so any impact would have killed her, she was not crushed by the wheel or anything and we know she did not suffer any pain so I'm glad about that. Her last memories will be running, which she absolutely loved to do, she'd just run around the garden and run madly around the house, so she was free and running happily.
Foxxy was 11 months old, so she barely had time to live before she was taken. But we know she had the best life, even if it was short. We couldn't have possibly loved her anymore and she was spoiled rotten! She was cuddled daily, fed lots of food and special extras, she had tons of toys and she even got to sleep on our bed for the last few nights. She brought us so much joy and happiness, she gave us strength when times were tough or when I wasn't feeling great, a big cuddle with her and seeing her beautiful face made me feel I could get through anything. If me and Josh ever had an argument, she brought us back together and kept us strong.
I can't imagine life without her, it's so difficult I've never experienced hurt like this in my life and I am trying to stay strong because I know she would've wanted us to think of the good times we were so lucky to have with her. My baby girl will never be replaced and it will take time for this pain to heal, it will be particularly hard because we had such big plans for her birthday and Christmas.
At the moment, she is safe at the vets and she will be cremated on Saturday, we are going to put her ashes in the garden (her favourite place) and plant a rose bush where the ashes will be buried.
This way, she will still be a part of our house and if we ever feel she is not with us, she will be happy in the garden. Josh and I are also going to get memorial tattoos, I'm going to get a butterfly with an angel wing and Josh is getting a phrase.
I know she will be our little guardian angel and will be protecting us for the rest of our lives.
R.I.P my sweetheart, we miss you more than anyone can ever imagine and will love you forever, you were our baby and will never ever be forgotten.
xxx
Thursday, 17 November 2011
Not in a Very Good State! :(
I'm having some serious problems with my head, I've had a severe headache for about 3 weeks with this headache comes quite bad dizziness I feel like I am spinning, it's particularly worse when I close my eyes to try and sleep, also when I move my eyes from one thing to another it take a couple of seconds before my focus adjusts. I'm also feeling very faint, light headed, extremely tired, weak and sick. I also keep getting confused, I repeat things I've already said and the other day I completely forget what I'd done during that day which was quite scary.
People had suggested I got my carbon dioxide levels checked as when CF gets worse you can retain co2 and therefore your body does not get rid of it properly, which gives similar symptoms to what I'm having, but I had the levels checked yesterday and they were completely normal.
I also have developed a cold over the last few days, I'm coughing a lot which doesn't help my headache! I have a sore throat and runny nose, my temperature feels like it is all over the place because one minute I'm freezing, shivering even when in a hoodie, slippers, heating on - then the next I'm sweating.
&Now last night I started to get pains around my heart area, which feel like short stabbing pains which happen about every 3-5 minutes, it's not fun and it's very uncomfortable.
So basically, I'm a walking disaster at the moment! &There is no current solution or an answer as to what is causing these problems.
There is one bit of good news and that is that yesterday I reached my highest weight in 2.5 - 3 years 41.5kgs, I'm the highest weight I've ever been with Josh so he probably doesn't fancy me anymore because I've become a fatty lol!! :P
Thanks for reading, hopefully my next blog will include all the good news that I am fixed!
xxx
PS. Thank God for spell-checker because my brain is not working at the moment lol!!
People had suggested I got my carbon dioxide levels checked as when CF gets worse you can retain co2 and therefore your body does not get rid of it properly, which gives similar symptoms to what I'm having, but I had the levels checked yesterday and they were completely normal.
I also have developed a cold over the last few days, I'm coughing a lot which doesn't help my headache! I have a sore throat and runny nose, my temperature feels like it is all over the place because one minute I'm freezing, shivering even when in a hoodie, slippers, heating on - then the next I'm sweating.
&Now last night I started to get pains around my heart area, which feel like short stabbing pains which happen about every 3-5 minutes, it's not fun and it's very uncomfortable.
So basically, I'm a walking disaster at the moment! &There is no current solution or an answer as to what is causing these problems.
There is one bit of good news and that is that yesterday I reached my highest weight in 2.5 - 3 years 41.5kgs, I'm the highest weight I've ever been with Josh so he probably doesn't fancy me anymore because I've become a fatty lol!! :P
Thanks for reading, hopefully my next blog will include all the good news that I am fixed!
xxx
PS. Thank God for spell-checker because my brain is not working at the moment lol!!
Tuesday, 8 November 2011
What do you want for Christmas?
Now Halloween and Bonfire Night are out the way, it's time to start looking forward to the best holiday of the year - Christmas!!
Everything gets all festive, houses are decorated, you eat more than you do all year, you spend time with loved ones, you get to bring out the old christmas tunes and of course you get presents.
So, what do you want for Christmas this year? An iPad 2? A new mobile phone? Money?...
I know exactly what I want.
I want new lungs!! I want to be able to breathe without struggle or fear. I want to be free from oxygen. I want to be able to go on long walks. I want to look forward to things without the worry that I may not be here to enjoy them. I want to be able to walk up the stairs without difficulty. I want to be able to go somewhere and not have the car loaded up with a wheelchair and oxygen. I want to be able to chase my mental puppy around the house.
I just want to be able to have the most fantastic christmas!
But unfortunately, that sort of thing doesn't come wrapped up in a gift box with a pretty little bow on it (and I do need to be on the transplant list first, lol.)
So I guess for now, I'll go back to wishing for an iPad!
Obviously, I don't know how many Christmas' I could have left, I'm hoping I will have many many more years to enjoy it but I'm going to make sure this one is special just in case - I want to be surrounded by the people I love and care about, I want to make sure everyone is happy and we all have the best time, because after all it is 'the best time of the year!' :)
I hope all my lovely blog readers have a perfect christmas, full of happiness and laughter.
I also hope that everyone who is currently waiting for a transplant gets the greatest gift of all this Christmas (well, hopefully before xmas!)
:)
xxx
Everything gets all festive, houses are decorated, you eat more than you do all year, you spend time with loved ones, you get to bring out the old christmas tunes and of course you get presents.
So, what do you want for Christmas this year? An iPad 2? A new mobile phone? Money?...
I know exactly what I want.
I want new lungs!! I want to be able to breathe without struggle or fear. I want to be free from oxygen. I want to be able to go on long walks. I want to look forward to things without the worry that I may not be here to enjoy them. I want to be able to walk up the stairs without difficulty. I want to be able to go somewhere and not have the car loaded up with a wheelchair and oxygen. I want to be able to chase my mental puppy around the house.
I just want to be able to have the most fantastic christmas!
But unfortunately, that sort of thing doesn't come wrapped up in a gift box with a pretty little bow on it (and I do need to be on the transplant list first, lol.)
So I guess for now, I'll go back to wishing for an iPad!
Obviously, I don't know how many Christmas' I could have left, I'm hoping I will have many many more years to enjoy it but I'm going to make sure this one is special just in case - I want to be surrounded by the people I love and care about, I want to make sure everyone is happy and we all have the best time, because after all it is 'the best time of the year!' :)
I hope all my lovely blog readers have a perfect christmas, full of happiness and laughter.
I also hope that everyone who is currently waiting for a transplant gets the greatest gift of all this Christmas (well, hopefully before xmas!)
:)
xxx
Tuesday, 1 November 2011
Lots of Good News!!! :D
Once again this blog is going to be full of all good news, things have been going well lately!
Firstly, I got my highest lung function in ages yesterday which was 26%. A rise in lung function is rare when you are this ill, but I'm on an IV antibiotic that I've never had before and that seems to be making the difference, also the fact I've essentially had 4 weeks of IV's with a small break in the middle, have all contributed to my increase :) I'm not going to say I feel better, I haven't really noticed a difference, I'm still quite breathless and coughing but I feel I have more energy (which is not always a good thing when you are a hyperactive mad thing anyway!)
My appetite has gone through the roof lately, I'm eating pizza like it's going out of fashion, I'm snacking constantly and there is hardly ever a time when I'm not thinking about food, lol! Which is a very good thing. Also I'm starting steroids on Friday (ready for my bone strengthening infusion) and when I'm on steroids I get the munchies, also I'm going on quite a high dose so I will be eating like there is no tomorrow with the steroids + Megace lol!!
Last night a few of us from poker decided to go in fancy dress seeing as it was Halloween. I decided to be a very scary cat, I just don't do horror, I've been a bunny and a french maid at Halloween parties, so I kept up the tradition of not being scary, lol! Here are a few pictures:
The final piece of good news is that I'm being made an ambassador for the organ donation charity Live Life Then Give Life I will essentially be doing what I am now, which is raising awareness for organ donation, LLTGL and promoting the charity! I'm honoured to be part of the team and hope I do a good job in encouraging people to sign the donor register and do them all proud :)
Thanks for reading!
xxx
Firstly, I got my highest lung function in ages yesterday which was 26%. A rise in lung function is rare when you are this ill, but I'm on an IV antibiotic that I've never had before and that seems to be making the difference, also the fact I've essentially had 4 weeks of IV's with a small break in the middle, have all contributed to my increase :) I'm not going to say I feel better, I haven't really noticed a difference, I'm still quite breathless and coughing but I feel I have more energy (which is not always a good thing when you are a hyperactive mad thing anyway!)
My appetite has gone through the roof lately, I'm eating pizza like it's going out of fashion, I'm snacking constantly and there is hardly ever a time when I'm not thinking about food, lol! Which is a very good thing. Also I'm starting steroids on Friday (ready for my bone strengthening infusion) and when I'm on steroids I get the munchies, also I'm going on quite a high dose so I will be eating like there is no tomorrow with the steroids + Megace lol!!
Last night a few of us from poker decided to go in fancy dress seeing as it was Halloween. I decided to be a very scary cat, I just don't do horror, I've been a bunny and a french maid at Halloween parties, so I kept up the tradition of not being scary, lol! Here are a few pictures:
 |
| Stepdad Matt, Mum, Auntie Hayley and me |
 |
| Matt, Josh and Uncle Justin |
 |
| Me and Hayley |
 |
| Me and my wonderful Mum :) |
 |
| Josh and I |
The final piece of good news is that I'm being made an ambassador for the organ donation charity Live Life Then Give Life I will essentially be doing what I am now, which is raising awareness for organ donation, LLTGL and promoting the charity! I'm honoured to be part of the team and hope I do a good job in encouraging people to sign the donor register and do them all proud :)
Thanks for reading!
xxx
Sunday, 30 October 2011
It's a Good Day to be Fat!
Today (Saturday) I feel I've had a fantastic day, food-wise.
I have had essentially 4 dinners, plus loads of snacks!
I had a portion of lasagne made with pro-cal powder - roughly 500/600 calories.
1 Domino's pizza (ham, pineapple, chicken and double cheese) - 700 calories.
3 Domino's cookies - 165 calories each.
A bowl of scrambled egg covered in ketchup also made with pro-cal powder - roughly 300 calories.
Supplements - 400 calories.
Add onto that, a few bags of crisps, two cans of coke and a pack of maltesers :)
&Now..... I'm starving again!!!! Yet I feel full, how can I feel so full but feel so hungry lol! I may just deal with having a hot chocolate or cup of tea or something, I don't think my stomach can hold anymore food, at least not right now, maybe in like 10 minutes or so ;)
Me and Megace are getting along very well, it has made my periods pretty irregular as I was warned but the benefit of the appetite absolutely landslides the not-so-good side of things!! So I'm a very happy (chubbier) girl at the moment and I'm very pleased with myself.
I hope that todays goodies will have a reflection on my weight on Monday when I attend Papworth for my day 7 check-up whilst on IV's, which seem to be helping might I add! I do have a headache still which is a very annoying pressure type headache where I do seem to find myself shutting my eyes quite a lot, but I'm hoping this is just the IV's and not the beginning of 'oxygen headaches' I used to wake up everyday with an awful headache which is when we then did tests to show my oxygen levels significantly dropped overnight, hence why I use my o2 when I sleep, this cleared the headaches up almost immediately, so I'm hoping it's just an IV headache and nothing else!
Time will tell I guess, but for now, my chest feels better, breathing is slightly easier and my chesty cough is back to a more dry, tickly type cough.
:)
So I'd say this is a pretty positive blog to be honest! Wooohoo, finally pretty much all good stuff to report!
xxx
I have had essentially 4 dinners, plus loads of snacks!
I had a portion of lasagne made with pro-cal powder - roughly 500/600 calories.
1 Domino's pizza (ham, pineapple, chicken and double cheese) - 700 calories.
3 Domino's cookies - 165 calories each.
A bowl of scrambled egg covered in ketchup also made with pro-cal powder - roughly 300 calories.
Supplements - 400 calories.
Add onto that, a few bags of crisps, two cans of coke and a pack of maltesers :)
&Now..... I'm starving again!!!! Yet I feel full, how can I feel so full but feel so hungry lol! I may just deal with having a hot chocolate or cup of tea or something, I don't think my stomach can hold anymore food, at least not right now, maybe in like 10 minutes or so ;)
Me and Megace are getting along very well, it has made my periods pretty irregular as I was warned but the benefit of the appetite absolutely landslides the not-so-good side of things!! So I'm a very happy (chubbier) girl at the moment and I'm very pleased with myself.
I hope that todays goodies will have a reflection on my weight on Monday when I attend Papworth for my day 7 check-up whilst on IV's, which seem to be helping might I add! I do have a headache still which is a very annoying pressure type headache where I do seem to find myself shutting my eyes quite a lot, but I'm hoping this is just the IV's and not the beginning of 'oxygen headaches' I used to wake up everyday with an awful headache which is when we then did tests to show my oxygen levels significantly dropped overnight, hence why I use my o2 when I sleep, this cleared the headaches up almost immediately, so I'm hoping it's just an IV headache and nothing else!
Time will tell I guess, but for now, my chest feels better, breathing is slightly easier and my chesty cough is back to a more dry, tickly type cough.
:)
So I'd say this is a pretty positive blog to be honest! Wooohoo, finally pretty much all good stuff to report!
xxx
Tuesday, 25 October 2011
IV's, Weak Bones and an Update.
I have added some important websites over there ->
These include my new transplant group on facebook, how to become an organ donor and the CF Trust website :)
I went to emergency clinic Monday because I have been feeling very poorly and the infection in my peg needed to be treated. My weight was 40kgs again, but despite feeling so unwell and feeling sick from my peg infection, they were pleased I hadn't lost any weight, so although I was gutted I hadn't gained, I hadn't lost either.
It was pretty obvious I was going to be starting IV's and I've been put on Ceftazadime and Aztreonam, I've never had Aztreonam before so we thought trying something new may allow me to have a bit more of a break between IV's (2 and a half weeks I managed!)
I didn't want to go into hospital as although I feel unwell, I don't feel bad enough to admit myself. I feel I can cope okay, now I have Josh with me all day he can help with my IV's and it will ease the pressure.
I always suffer quite badly with IV side effects and these are no exception. I've been feeling very sick, dizzy, double vision, headache, body aches/pains and ear pain/popping. They usually only last a few days, but as I've never had Aztreonam before it could last the whole 2 weeks, I guess I will find out!
However, on my transplant referral letter it said I have osteoporosis (weak bones) and this could prevent me being listed. So I asked how can this be changed, (which they saw as very positive that I'm trying really hard to correct any problems!) I have had a bone strengthening IV before called Pamidronate which I was told could cause 'severe bone pain' if there is any infection in your body, so last time we tried to remove any infection with IV's and steroids - however, I had the worst pain I've ever experienced in my life and they said it was one of the worst cases they'd seen, I was having morphine, ibuprofen and paracetamol but even that barely touched the pain but it did allow me to fall asleep a bit easier. So I will be going into hospital on day 14 of IV's to have more of this evil stuff and at least if I am an inpatient they can control my pain better than I could at home, so I'm absolutely dreading it as I have never experienced pain like it, but these are the things I need to do to give me the best possible chance of being put on the transplant list.
Thank you for reading.
xxx
Sunday, 23 October 2011
Transplant Group
I've made a facebook group where people can get updates on the transplant situation - It will include any appointments, important information such as false alarms, but hopefully it will include the news that I have received my transplant!
You don't have to be friends with me on facebook to join, just click the link below! :)
Kerry's Transplant Group
Thank you!
xxx
You don't have to be friends with me on facebook to join, just click the link below! :)
Kerry's Transplant Group
Thank you!
xxx
Friday, 21 October 2011
Transplant Assessment Date!
You wait ages for a bus and two come along at once! Well that's whats happened with my blog, I've had nothing to write about for a while and then two big things happen within 2 days of each other! So here is yet another blog :)
I have received a letter from Harefield saying that my pre-transplant assessment is on the 23rd November. I will go there for 1 day, during the morning I will undergo various tests such as, lung function, blood tests, x-ray, ECG and ECHO (heart scan.) Then in the afternoon I will meet with the doctor to discuss lots of different things and see whether I'd be a good candidate for transplant. If they believe I am, I will then go back to Harefield for a 2-day assessment, which is 2 days of yet more tests where I will then be told whether I am going to be put on the list or not.
I am very scared as is to be expected as this is a major thing and the results could be the difference of whether I can have a transplant or not. So it is a pretty big thing. I am also slightly excited because I've been working so hard to get to this point and I was worried after my referral was sent off, that I wouldn't even get an appointment, I also thought they might have seen my weight and just completely ignored me and not even bothered seeing me. So that in itself is a positive :)
So now I really need to work super duper hard to get my weight as good as possible in preparation for the assessment, the higher my weight on the day the better my chance of being listed!
:)x
I have received a letter from Harefield saying that my pre-transplant assessment is on the 23rd November. I will go there for 1 day, during the morning I will undergo various tests such as, lung function, blood tests, x-ray, ECG and ECHO (heart scan.) Then in the afternoon I will meet with the doctor to discuss lots of different things and see whether I'd be a good candidate for transplant. If they believe I am, I will then go back to Harefield for a 2-day assessment, which is 2 days of yet more tests where I will then be told whether I am going to be put on the list or not.
I am very scared as is to be expected as this is a major thing and the results could be the difference of whether I can have a transplant or not. So it is a pretty big thing. I am also slightly excited because I've been working so hard to get to this point and I was worried after my referral was sent off, that I wouldn't even get an appointment, I also thought they might have seen my weight and just completely ignored me and not even bothered seeing me. So that in itself is a positive :)
So now I really need to work super duper hard to get my weight as good as possible in preparation for the assessment, the higher my weight on the day the better my chance of being listed!
:)x
Wednesday, 19 October 2011
New Feeding Tube &My Weight Gain!!
My feeding tube somehow got very badly infected causing me severe stomach pain which has been going on for about a week now. At first I thought I'd pulled a muscle from coughing so much, but then my feeding tube started to become sore to touch. On Monday night I noticed it was starting to come out of my skin, for anyone who doesn't understand, my tube is held in on the inside by a small balloon type thing, which is inflated with 5ml of water and secures the tube so it does not fall out. The fact my tube was coming out told me immediately there was a problem, I tried to deflate the balloon but no water would come out then when I tried to put more water in, it was like being stabbed in the stomach. So I held it in place with plasters and hoped it wouldn't fall out. My CF team told me to wait until Wednesday (clinic) for them to have a look at it.
The pain has been some of the worst I've ever experienced and I've been through quite a few painful things in my time lol so that is saying something! Even very strong painkillers were barely touching the pain, so I knew something needed to be done.
I attended clinic today and was unable to do lung function, firstly due to the pain and secondly I was worried the force of blowing out really hard might have made the tube fall out completely which wouldn't have been good! To be honest I feel worse than I did last week, my 'pleurisy type pain' is the worst it's ever been, I'm coughing more again and feel I may have to admit defeat and have yet another course of IV's. This was also what my doctor suggested today, he had a feel of my stomach and there didn't seem to be any problems so we put the pain down to an infection in my peg.
I was sent straight to Addenbrookes where a specialist would have a look and hopefully change it to a new tube. When we pulled all the plasters off, you could clearly see it was very infected, it was red, oozing out what I'll just describe as gunk(!) and it was so sore to touch. She quickly removed the tube, took a swab of the 'gunk' so we can know for sure if it was an infection, then I received the brilliant news that the new tube I was getting would be a Mic-Key button!
Woooooo, here is a picture of the new little tube I have :)
As you can clearly see from the photo, I have a little bit of a belly going on. Well this is because today on Papworth's scales I was the highest weight I've been in 2 years!! I'm absolutely over the moon and feel the weight side of things are really going in the right direction, even if my silly lungs aren't!
So the plan is to call Papworth tomorrow to tell them I've had my tube changed. Then sort out a follow-up appointment depending on when IV's are necessary, it may be Friday if I get very bad tonight/tomorrow, hopefully it will be Wednesday. &To carry on eating eating eating and getting fatter and fatter! :):):)
Happy days.
xxx
Monday, 17 October 2011
Good News & This Time Last Year...
Well we'll start with the good news is, I got my flu jab :)
After not receiving it last year, it was quite a scary time, the doctors told me if I was to catch flu my chances of pulling through wouldn't be too high, so the fact I was unable to get the jab last year was a very frightening thing, so this year, woohoo, I'm all vaccinated and ready to face the evil winter months!
The next piece of good news is, it doesn't seem my 'cold' has developed into anything too serious, yes I have a tickly annoying cough, yes I keep blowing my nose and yes my glands are well and truely swollen, but it isn't too much that I feel worried and thus far it hasn't gone to my chest and hopefully I will be able to manage a bit more than 10 days between my IV courses this time!
The final piece of good news, is that Josh has officially left work now and has taken over the role from Mum and has become my full-time carer. My Mum has been amazing to me and has been so fantastic at not just being my general wonderful Mum, but also for looking after me so well for the last 20 years. I believe without my Mum keeping me so positive, I wouldn't be alive today, when I've felt down she's picked me up, she's kept me on the right path, she's had faith and belief in me that I can do anything that is put in front of me, she has fed me up when my weight was low, she's kept me optimistic but also realistic which is super important, she's been by my side when I'm unwell and she's always dancing beside me at a party, basically - I owe a lot to her and I love her to pieces.
This does mean that I can now live with Josh and Foxxy permanently without being between houses all the time :D yay!
I used to be frightened of being on my own, so particularly when I was very unwell, I'd try and always have someone with me so I didn't have to do too much for myself, or if things got really difficult for me (and as morbid as it sounds!) I didn't have to worry that I would die alone. So now I no longer have that worry, but it does create a few different worries, for example money! We are going to be worse off, but not to the point where we can't live, we'll just have to be a bit more money-wise and not spend it on unecessary things and will probably have a cheap christmas (so don't be expecting anything expensive if you receive gifts from us!)
It will be great though when I'm in hospital because on the days when Josh would visit, he would normally come straight from work and not arrive until 7.45ish which used to mean we didn't get too much time together, so at least now he'll be able to come earlier in the day and stay a bit longer :)
It will all hopefully work out for the best, if I can put up with him for 24 hours a day?! ..... I'm joking :)!
Now onto the main topic of this blog:
This time last year my consultant told me with the way my lungs had been declining (which was at quite a rapid rate) they didn't think I had more than a year or so to live.
Well I can safely say, it's now been a year since that day and I am still here, I'm still fighting, still living and breathing (sort of lol) I'm still just as much the Kerry I was before, just I now come with a few added extras like my 'cheelywhair' and my oxygen, for example have become my new best friends.
My lung function is around 12/13% worse than it was a year ago, which obviously has had a big impact on my quality of life, but it hasn't stopped me working really hard and trying to get on the transplant list, I'm still pigging out and doing everything I can to gain the much-needed weight!
So in summary of how things have gone during this year. My weight has gone up from a very low 32kgs (5 stone!!) to 40kgs (6 stone 4) which is really good! But my lung function has gone from 32% (in February 2011) to 19% (in October 2011) which is pretty bad, lol!
But as is always the case, you've got to take the good with the bad, I'm going to prove that my 'expiry date' is none other than a silly prediction and keep on working my butt off, so that my friends, is exactly what I plan to do :)!
Thank you for reading.
xxx
After not receiving it last year, it was quite a scary time, the doctors told me if I was to catch flu my chances of pulling through wouldn't be too high, so the fact I was unable to get the jab last year was a very frightening thing, so this year, woohoo, I'm all vaccinated and ready to face the evil winter months!
The next piece of good news is, it doesn't seem my 'cold' has developed into anything too serious, yes I have a tickly annoying cough, yes I keep blowing my nose and yes my glands are well and truely swollen, but it isn't too much that I feel worried and thus far it hasn't gone to my chest and hopefully I will be able to manage a bit more than 10 days between my IV courses this time!
The final piece of good news, is that Josh has officially left work now and has taken over the role from Mum and has become my full-time carer. My Mum has been amazing to me and has been so fantastic at not just being my general wonderful Mum, but also for looking after me so well for the last 20 years. I believe without my Mum keeping me so positive, I wouldn't be alive today, when I've felt down she's picked me up, she's kept me on the right path, she's had faith and belief in me that I can do anything that is put in front of me, she has fed me up when my weight was low, she's kept me optimistic but also realistic which is super important, she's been by my side when I'm unwell and she's always dancing beside me at a party, basically - I owe a lot to her and I love her to pieces.
This does mean that I can now live with Josh and Foxxy permanently without being between houses all the time :D yay!
I used to be frightened of being on my own, so particularly when I was very unwell, I'd try and always have someone with me so I didn't have to do too much for myself, or if things got really difficult for me (and as morbid as it sounds!) I didn't have to worry that I would die alone. So now I no longer have that worry, but it does create a few different worries, for example money! We are going to be worse off, but not to the point where we can't live, we'll just have to be a bit more money-wise and not spend it on unecessary things and will probably have a cheap christmas (so don't be expecting anything expensive if you receive gifts from us!)
It will be great though when I'm in hospital because on the days when Josh would visit, he would normally come straight from work and not arrive until 7.45ish which used to mean we didn't get too much time together, so at least now he'll be able to come earlier in the day and stay a bit longer :)
It will all hopefully work out for the best, if I can put up with him for 24 hours a day?! ..... I'm joking :)!
Now onto the main topic of this blog:
This time last year my consultant told me with the way my lungs had been declining (which was at quite a rapid rate) they didn't think I had more than a year or so to live.
Well I can safely say, it's now been a year since that day and I am still here, I'm still fighting, still living and breathing (sort of lol) I'm still just as much the Kerry I was before, just I now come with a few added extras like my 'cheelywhair' and my oxygen, for example have become my new best friends.
My lung function is around 12/13% worse than it was a year ago, which obviously has had a big impact on my quality of life, but it hasn't stopped me working really hard and trying to get on the transplant list, I'm still pigging out and doing everything I can to gain the much-needed weight!
So in summary of how things have gone during this year. My weight has gone up from a very low 32kgs (5 stone!!) to 40kgs (6 stone 4) which is really good! But my lung function has gone from 32% (in February 2011) to 19% (in October 2011) which is pretty bad, lol!
But as is always the case, you've got to take the good with the bad, I'm going to prove that my 'expiry date' is none other than a silly prediction and keep on working my butt off, so that my friends, is exactly what I plan to do :)!
Thank you for reading.
xxx
Thursday, 13 October 2011
General Stuff
I finished IV's last Wednesday and my lung function had come down from 24% to 19% which is not ideal at all, IV's are at least supposed to try and sustain my lung function, but the fact it had come down by 5% meant we decided to stop the IV's, my infection levels had come down and I was feeling a little better. So it wasn't worth carrying on and risking another drop. This means my lungs can hold 500ml of air, which is pretty rubbish - 1 and a half cans of coke basically!
Since finishing IV's, I now feel like I've picked up a cold, which is just typical. I have my flu jab on Saturday and if I'm unwell they won't do it, so I'm hoping it's not a cold and I will get my flu jab this year (last year, due to a huge mix-up at my GP, I didn't get the jab at all!)
I don't really have much to say, just wanted to update on my situation at the moment!
I will do a proper blog when I have something to talk about :)
xxx
Since finishing IV's, I now feel like I've picked up a cold, which is just typical. I have my flu jab on Saturday and if I'm unwell they won't do it, so I'm hoping it's not a cold and I will get my flu jab this year (last year, due to a huge mix-up at my GP, I didn't get the jab at all!)
I don't really have much to say, just wanted to update on my situation at the moment!
I will do a proper blog when I have something to talk about :)
xxx
Tuesday, 4 October 2011
The Campaign and Other Media Stuff.
I am the face of a national campaign for organ donation, here are the posters:
I was in the Daily Mail newspaper, here is the link - Daily Mail Article
I've also been on my local news programme, BBC Look East, regarding the posters but this is no longer available to watch (it was available for 24 hours only) which I'm very disappointed about!
I've also been on my local news programme, BBC Look East, regarding the posters but this is no longer available to watch (it was available for 24 hours only) which I'm very disappointed about!
So I have been very busy, I've had press contacting me left, right and centre. It's been a bit manic and I'm also still on IV's so I'm trying to juggle my health with my new found stardom - Lol!!!
It's been a bit overwhelming, I never had any idea doing this campaign would get so much media attention, not only has it raised awareness for organ donation, but it's also raised awareness for Live Life Then Give Life, which is the charity I've worked with on this campaign. The article has also gone global, including Spain! So the word is well and truely being spread about organ donation and LLTGL.
But of course with all good attention comes bad attention, I've had a few negative comments, some people believe the slogan to be degrading to women and being the face of it, I've had to take the brunt of a few rude remarks, including people saying I'm not worth 'giving one to' because I'm ugly - Yes I'm not a model but I am a real person, they could have taken a gorgeous model and stuck some oxygen tubing on them and claimed they need an organ, but it's the fact that it is real for me, I really do require oxygen, I do actually need a transplant, which makes the campaign so much more real.
The tongue-in-cheek slogan shows that despite being very unwell, I can still have a laugh and a joke, my life is not all miserable. I feel the slogan captures the readers eye and will make them question what it could be advertising, it is the world we live in where we are sold by innuendos.
If the slogan had just said 'this girl needs a transplant' would that really make you think, would you really stop and take notice? That is why I am fully behind the campaign, anything which gets people talking, be it in a bad or a good way, is still raising the issue of organ donation and getting people thinking about it.
So yes, I've had more positive comments than negative and I am just a normal girl, so to begin with I found it difficult people slating me for trying to raise awareness for organ donation, but now I am just hoping that the campaign really will make a difference and people will become donors.
I think I deserve a medal for the abuse but there we go ;) lol, joking!
I have a few more media-related things coming up over the next few days and then I'm back to clinic on Wednesday, my weight is still good, I've had a change in IV's which has helped as I'm starting to feel better. I may continue and do a 3rd week of IV's which will hopefully really kick the infection so it doesn't come back so quickly this time! It all depends on what my numbers say on Wednesday.
I have to go to bed now as I'm completely exhausted!
Thank you for reading and if you have supported the campaign or given positive feedback, I am very thankful :)
xxx
Subscribe to:
Posts (Atom)