Saturday, 28 January 2012

End Of Life Plans?

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.

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.

Friday, 20 January 2012


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.

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.

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!