Glowing Report!

I'm really happy to say that yesterday my lung function was 49%, my weight 55.8kg and my oxygen saturation (sats) levels were 99%! I can't remember the last time I saw figures like that, for months and months now my sats have sat at 93-95% and that was just normal for me, sometimes getting even lower when I felt unwell. So to see them at a normal number is great and for my lung function to be almost hitting 50% is amazing. My weight is back to pre pneumonia 2011 weight, it just shows how long it can take to put that weight back on once you lose it. I have started a 10 day course of IVs which sounds stupid given the numbers, but I have felt a bit iffy the past week or so with my energy levels and I started to develop a tickly cough and chest pains so decided I wanted to have some before we start fertility treatment again, rather than possibly end up needing them half way through.

So what I have been doing differently? Well I believe the main contributor is my new nebulised antibiotic Azli, also known as Cayston, also known as nebulised Aztreonam. I had high hopes for this nebuliser as lots of people have said how amazing it is and I believe them now! At first it made me really wheezy however that went after about 10 days, it does re appear every so often though. Then I started to be able to exercise more than usual and before I knew it I was going to the gym 3 times a week and doing 40 minute sessions involving about 25 minutes cardio and the rest doing weights. I'm feeling I can really push myself at the gym at the moment and I've noticed my heart rate has decreased too, my pulse at rest is in the 80s at the moment, I pretty sure it used to be about 100. I am still very breathless when exercising however I do have less mucus which is what the physio believes has helped bring my sats up and why I think I a finding the gym less hard work.

Then I have also started having insulin with lunch and tea and although I still need to learn how many units I need and not getting it right all the time, I'm getting there slowly. I'm having 2 units with lunch and 3-5 units with tea. I'm having lots of hypos (low sugars) which is not nice, basically every time I exercise and if I have breakfast early or tea late. It's easy to say, well eat your tea earlier or have breakfast later, but that isn't always possible!

So health wise I am doing well at the moment which makes me realise how important it is to be compliant with treatment and to be involved in your CF care. I know for a fact if I worked this would not be possible, I haven't worked for about 5 years now and I'm finally starting to feel I understand my CF and know what my body needs and I'm getting the balance right of rest and treatment. Some days I am so bored and fed up, I feel so useless and pathetic that all my day consists of is CF related activities and attempting to do household chores which mostly Pete ends up finishing off anyway!

I look back to when I first joined the CF community, my health was worsening and I was facing giving up work. I made lots of friends on-line who I felt understood me better than people around me, it was also when I started to take an interest in my health and ways to improve/stabilise it, can you believe I didn't even used to wash my nebuliser equipment?!

Lots of my friends have now either had lung transplants, need lung transplants, have passed away or their health has deteriorated. People that had the same lung function and health as me are now needing lung transplants which scares me but also makes me feel proud that I have managed to avoid this so far. CF is unforgiving, I work really hard to stay stable. I'm not admired or called brave, nobody calls me an inspiration, because in order to be those things you have to push yourself to work a full time job or go above and beyond what your body is capable of and I'm not willing to do that in order to end up dead or dying like lots of people with CF do. Lots of people probably think I'm lazy or one of those scrounges you read about in paper, on benefits, didn't you know the whole country hates people like me at the moment? Sometimes I feel guilty if I go out for a meal out as the papers make me feel like I shouldn't be able to afford my electricity and gas, never mind a meal out, because I am in receipt of benefits. However then I remember my husband does work, so we are not complete scrounges...!

Having CF at my level of CF is a job in itself, I have to do a hell of a lot to stay alive, some people with CF don't, they manage to get on OK with minimal extra effort. I'm not implying that people with CF who did push themselves are in the wrong, or that everyone who needs a lung transplant brought it on themselves. It's such a fine balance between having a life and looking after yourself, nobody gets it right and even if they do sometimes there is nothing anyone can do to prevent that downward spiral, I'm sure it will happen to me eventually. I just feel lucky that so far I'm doing OKish, I have a supportive husband to help me and I'm in a situation for the time being where I can concentrate on my health and not have to run myself in to the ground with work. This might all change through if I don't qualify for ESA though and that is why I am really scared of what may happen in the next few weeks. I really wish the government and society as a whole understood long term conditions more accurately.

Love on the Transplant List

I'm sorry I haven't blogged much, i'm feeling really rough at the moment. I woke up with a cold last Tuesday and started Amoxicillin straight away to try stop it going any further however I don't think it has worked. Sunday was the worst day, I haven't felt so ill for a long time.

I'm at outpatients tomorrow so will find out if my chest has worsened but I'm almost sure it has, I am getting breathless lying down, talking and just walking around the house. I am coughing thick green sputum up all the time and taking a sputum pot with me everywhere, my chest aches and I've taken to not wearing a bra when possible as it feels too tight and restricts me. I am sleeping better than I was which is a positive, I'm not waking in pools of sweat but freezing anymore and I'm coughing less during the night. I'm just so pissed off (excuse my language!) I don't need this now, its December and I have lots coming up which I have been looking forward to. My appetite is poor although slightly improved today (I actually had some breakfast and attempting some lunch) and my skandishakes are a year out of date, they do not taste good!

I am so bored of just lying around and not doing much in order to try rest! I really do hate this time of the month!

There was an excellent programme on Monday called 'Love on the Transplant List' it is about a CF friend of mine called Kirstie and her journey to receive a transplant with her husband Stuart. It was really well put together and I think it reflects brilliantly how difficult every day tasks can be and how difficult it is to watch your other half dying in front of you. It makes me realise how amazing Pete is to know this could happen to me and not be fazed by it. Obviously my CF is not at this stage and hopefully will not be for a long, long time but it raises awareness of CF and makes people realise how important becoming an organ donor is. Please take the time to watch it on BBC IPlayer if you have not seen it. Kirstie and Stuart were great to let this difficult time be filmed and shared, I think they did a fantastic job! Below is a trailer and the link to watch the whole programme



Link for BBC IPlayer - click here

Transplant Programme

There was an excellent programme on last night about organ donation. It showed the points of view from the family of the donor, a 65 year old lady and the recipients who received her heart, liver and kidneys. I thought it was put together very well and explained the process great, it also showed how the donor is treated with respect and how important it is to let your family know of your wishes as it is them who have the final say.

It made me feel honoured to know people who have been part of this journey and how many people are involved to try and help save a persons life. It made me realise how difficult it is for the families who agree for their loved ones organs to be donated, but also how proud they felt when they received a letter telling them how many lives had been saved.

Its not an easy watch, but worth it.

Click here to watch

Sophie gets some new and improved lungs!

Sophie received her double lung transplant yesterday! She has being living in hospital for weeks and weeks as she was too ill to come home, I'm so happy she has got her call and got those new lungs. She wasn't waiting too long either which is also great! I hope everyone who needs a transplant doesn't have to wait years to get that chance at a better life, all it needs is more people to sign up to be organ donors. I'm thinking of her lots today with a big smile on my face, however there is also that worry as the new few days will be really important, I know she is strong enough to get through them though!

Organ Donation Awareness

I just wanted to blog about an event that is happening that some people might be interested in and is being organised by some of my friends!

Three lovely ladies have organised a ball to raise awareness of organ donation, they are only here today because they all have received a double lung transplant!

Here is the flyer for the event and a link to the facebook group, sadly I can't go as I could give them an infection and the same rule applies to anyone else with CF pre transplant, however anyone else is welcome to go, so if you fancy a trip to Glasgow then get your places booked!

For the facebook group click here

One of the three lovely ladies is Victoria who received her transplant quite recently. She has also been on TV lately with her boyfriend Gregg, to raise awareness of organ donation and CF of course. Here is the link to see them, skip to part 3! They were both great!! Remember they didn't know the questions in advance and were nervous!

Rollarcoaster Week

What a rollarcoaster of a week!

Pete and I have been making some important decisions regarding the surrogacy and I will discuss it on my blog in due time. However I have other things that I feel are more important today.

Firstly, on Friday another CF friend was devastatingly taken from us. Nicola was not on the transplant list but was having a terrible time and had become very ill over the past year or so. I don't really know why, it was very complicated and she didn't talk about it all the time, infact the news of her death was a great shock and even though I didn't know her that well I shed a tear for her. Because it was unexpected (to me anyway) and hit me with a big dose of reality, people with CF can go downhill quicker than you think and it take lives, it doesn't care how lovely, caring and beautiful that person was. It kills them, one minute they are here and you think they will hang in there, they have to - the next minute a family member informs you they are gone. You wish you had realised they were that ill, but then you realise it wouldn't have made a damn bit of difference and abit of normality is probably what they needed to try to keep fighting and feel like they were living and not dying.

Beautiful Nicola - 1983-2010

This sad news has been followed by extremely great news, although to be honest I am very worried at the moment! My favourite girl and best friend Victoria received her 'call' last night and is in theatre as I type getting new lungs! I will be thinking (and worrying) about her day and night until I know she is recovered and on with her new life, please keep her in your thoughts and prayers.

Please also spare a thought for the donor and their family (transplant is always a good news, bad news situation), without their kindness in such a difficult time, Victoria would not be getting this second chance at life.

Victoria doing what she does best ;o)

Feeling Sticky!

Last week I think I might have had a virus or cold or something, not really sure. I find it difficult to tell what is CF related and what is not. My nose was runny but not completely blocked so I don't know if that was sign of a cold or just my sinuses as I have been getting headaches almost everyday, but again this could be because of a cold. It's probably abit of both as one is bound to affect the other. This has been dripping down the back of my throat and it's made me more productive than normal and my sputum has been very sticky. Infact on Sunday when I woke up, I went to spit some in the sink and it was just hanging out of my mouth as it was so sticky it was still sticking to my throat. It started to make me gag and I thought I was going to be sick! I had to pull it out with my fingers, lovely! This could have been made worse because I went out the night before so was I probably dehydrated!

Anyway, all last week I have felt abit achy and tired, very lethargic and not felt bothered to do much. Saying all this though I haven't felt terrible and don't think it's anything major, like I said, not sure what it is really!

Going out on Saturday probably wasn't the best course of action to help with whatever I had but nevermind, I wasn't even planning to go out, we went for a meal then ended up going out after. Spontaneous nights are always the best, had a really good time and got in at 2.30am. I even did my tobi neb when I got in, I'm really am surprised it doesn't make me sick when I'm drunk as it does not taste good but guess I must be used to the damn thing!

I was able to dance alot more than last time which was really good and I drank rather alot. A beggars dog humped my leg which was interesting.... I then kicked up a fuss as when we got into the club there was no handwash or soap in the toilets for me to wash my hands after stroking the dog. No wonder germs get passed around when there are no handwashing facilities! God I am getting old aren't I?!

I hardly seemed to cough which was weird, perhaps the sputum is so sticky I'm not coughing at the moment, I know there is loads there but I'm not coughing as much as usual. Weird! When I do cough it's like a big beastly cough, I sound like a bear and my face feels all red and like my veins are popping out!

On Sunday I didn't get up until about 11.30am and didn't get dressed until about half 3. So my morning physio was quite a late one! I then didn't do my evening physio until about half 10 in the the evening as I went out for another meal (too many birthdays this month). I didn't want to do my physio before I went as I'd only done my morning physio a few hours before!

My friend and I also took Alfie for a walk in the afternoon, even managed to have the car roof down on the way there! Bring on summer!

My friend Tori had another transplant call this weekend but sadly the lungs were not suitable, this is her 7th false call. From discussing this with my friends I found out two people I know would want to donate their organs when they die, but haven't signed up. These aren't bad or selfish people, infact one said they thought organ donation should be opt out rather than in. It just proves that people do want to donate but just don't get around to doing it or don't know how to. It's so silly, I'm going to send them the link so hopefully they will sign up now.

Here are some pictures from Saturday night and a video

Me and the birthday boy!

I'm so cool.....!

Come on little brother, give your big sis a hug!
So childish, messing about with Helium

See the Difference!

There has been quite a few things on TV about Organ Donation recently, so I thought I would share some of them to try help raise awareness of organ donation.

Rachael (who does not have CF but has a different lung condition) received a double lung transplant on the 10th March. All her family and friends are ecstatic and SO grateful as Rachael was seriously poorly and needed new lungs asap, these videos are before she received her transplant. She is an active campaigner to raise awareness of organ donation and has agreed for her journey to be filmed. I have also included a video of Victoria who is still waiting for a double lung transplant and appeared on GMTV this morning, also a video of Emily who received her double lung transplant in 2007; you can see how much of a difference becoming an organ donor can make.

PLEASE sign up and help save peoples lives like these three lovely ladies, click here to sign up

25th Jan 2010 - Discussing the future

Monday 25th January 2010

I had the CT scan before Christmas, its really simple, you just lay on a bed and a circle thing goes up and down your body. It takes about 10 minutes, if that.

I Pete and saw the doctor today to discuss pregnancy. It didn't go very well. He basically said I have a low lung function and if I were his daughter he wouldn't want me to get pregnant, he said the risks are high and people have died. He suggested we look at adoption, I asked about surrogacy but he didn't know much about it. He suggested we talk about it and get back to him if we want to go ahead, he will support our decision, but his advise is it is not a good idea.

I can't really remember what else he said because obviously I was very upset and trying to concentrate on not crying rather than anything else. He told us not to feel downhearted, well that easy for him to say isn't it? He will have gone home and had tea with his family and totally have forgotten about us, left with the prospect of never having the family we both want. It's easy to dish out advice, but alot harder to deal with the advice given.

To rub salt in the wound, as we left the hospital there was a pregnant woman stood by the hospital entrance stood under a sign saying no smoking, doing exactly that. Life is seriously unfair, if I got pregnant I would never do anything that could harm my baby.

Pete and I are not sure about adoption. I've already researched it and it doesn't exactly look great for us. For a start I'm not exactly a great candidate, so we might not even get accepted. Then if you want a baby the waiting list is years long as not many baby's need adopting unless they have special needs. I don't think I could cope looking after a baby with special needs, call me selfish but I just don't think I could do it. Then there are issues such as, would our families accept an adopted child? Would we be OK with it having contact with its birth parents and siblings? Overall it's not a route I really want to go down. We want our own baby, one we can name, I want to see what our child would look like! I want to experience pregnancy and my family to be proud of me, would they be proud of me if I adopted a child?

I really don't know what to do. I think I'm kind of in denial and think everything will be OK if I get pregnant, which it could be. There are many people with my lung function that have had successful pregnancies, but then there are those that haven't.

The doctor made it quite clear he didn't think I would ever get my lung function up to 60% and also said he thinks I will need a lung transplant at some point, he suggested I could get pregnant after. That's ages away (hopefully)! And wouldn't that be swapping one set of problems for another?

Pete says he's rather have me than have a baby and lose me, he also says if I died and he was left with a baby he would not have a clue what to do. These are all 'ifs', should I give up the one thing I want because of 'ifs'?

The doctor said fitness is an important factor so I'm going to try go to the gym more to get fit and prove to Pete I won't be going anywhere if we have a baby

Jess on the News

Dying for Breath

Well these IVs are actually going rather well, I don't feel horrible like usual and I think I might actually be feeling the benefits which I haven't done in years! I'm coughing less and not as breathless. It's a CF miracle!
The only complaint I have is that I keep feeling warm really easily and getting sweaty, I also seem to itch more than usual and I'm having a few digestive issues (I won't go into details!!). The nurse is coming out to visit me today, I hope I'm not feeling warm because I have a temperature because then she will make me come off the ceftaz, booo!!!
My port is okish, ok I lied. I actually itched it so much I made a hole in the dressing!! I've done well not to change the whole thing, because that's when I itch it properly and it gets sore because once I start I get carried away. So I have told Pete to not let me take my dressing off whatever the circumstances and I've just been adding extra bits over the bits peeling off (or getting holes in them!).

I watched a programme last night on sky3 about a guy with CF getting a lung transplant, it was called Dying for Breath. It scared the hell out of me! Now I have always known how scary and hard a transplant would be. I also have realised I will probably need one at some point in my life, this was actually confirmed by the doctor last Monday when we were talking about things. He said looking at my lung function that he thinks I will need a transplant as some point in the future but it could be years and years away if I stay stable. So maybe I shouldn't have watched this programme, maybe I should have... I don't know.

The main things that scared me were - when he was going into theatre and knew he might not come out alive, I felt terrified for him so I can only imagine how he felt. It showed a few clips of the operation, cutting into his chest, I usually find things like that quite interesting but not when its something that could happen to me. Then when he came out he was on a ventilator, so had a big pipe down his throat helping him breathe, he was in a coma at first but then awake. I don't like the thought of that. Then he just looked in so much pain I could have cried, you could see the scar across his chest and I could just imagine how every movement was agony. Then he went to live in this house with other transplant patients where they have to exercise everyday etc to recover fully, he make friends with another CF guy who'd had a lung transplant too (not sure if this would happen in the UK). His friend then died 3 weeks later from a fungal infection. So he had gone through it all, thought he'd got through the worst, then passed away. How is that fair?

Eventually he went home and when he got an ear infection it infected his brain because when you have a transplant your immune system has to be lowered so your body doesn't reject the new lungs. He was ok but could easily not have been. Then to top it all off, the surgeon was saying that 50% of transplant patients will live one year, some upto 5-7 years. He also said lung transplants were one of the most risky transplants to do. So in conclusion after watching this programme I was rather taken aback and not really sure what to make of it. All I know is I have a new found respect for people who have had transplants! I guess I can look at it from a different perspective to people who will most likely never need a transplant, I just kept watching it and thinking that I wouldn't be tough enough to cope with it, others will look at it and think 'what a brave guy, glad its not me' or perhaps even 'he's used to stuff like this', well I don't think that's true.

I've had quite a busy weekend, on Saturday night I went out for a meal with three of my friends. I didn't get home until 10.30pm so evening IV's didn't finish until after 12 (they are taking an hour and half to go through each time, its difficult to fit them in three times a day!).
Sunday we went to my Nana's for lunch, we walked there as I have make a pact I am going to try walk Alfie everyday if possible, its about a 20 minute walk to my Nana's. I took my IV's with me and did them whilst having lunch. My dad then gave us a lift home. Then we went to the pub to meet up with some friends, I started to get some serious stomach problem though and we only stayed an hour, I'm sure I took enough tablets with the lunch, but the evidence suggested otherwise!

A Fighter to the End

I'm very sad to say that Jess who received her transplant between Christmas and New Year has passed away.

This is not the way her Christmas Miracle was supposed to go, yet she was so very poorly and weak, she had waited for her transplant for too long. If she had received it earlier who knows? Not all transplants are successful, it's a risky procedure. However I think that every single time it is still better to at least give someone the chance. Been on the list gives that person hope to continue fighting, a future to look forward to.

Jess was such a fighter, this is a picture from a sponsored walk she did in 2009. Even in her last days she was determined to raise awareness of organ donation. Hopefully her efforts were not in vain. Please click here to join the organ donation register.

I didn't know Jess that well, however I followed her progress and she helped me with my cf presentation last year. She was well known on the cf forums and was a major advocate for the Live Life Then Give Life charity, she will be greatly missed. RIP Jess xx

Christmas Miracle

I hope everyone had a Merry Christmas! I'm still in the middle of Christmas since we are going to see all Pete's family on Wednesday so I am not going to update on Christmas yet.

However I wanted to post a positive story, I just read the news and I am SO happy!

Jess is 20 years old and has been waiting for a lung transplant for 4 years, so since she was 16. (just think of all the teenage years she has missed out on). Her lung function is 9%, she was rushed to A&E before Christmas and spent Christmas in hospital, to be honest I think a lot of us thought she wasn't going to make it and finally lose her battle. Infact I said to Pete the other day I didn't think she had much time left.

I have just read that she has had her lung transplant this morning!!!! Please pray she gets through the first few days as they are going to be hard, she was very, very poorly for the operation and not out of danger yet. Also please spare a thought for the family and friends who have just lost a loved one and agreed to this organ donation, without them Jess would not have this extra chance of life.

Christmas miracles can happen!

An Alternative Ending

Once there was a young woman called Jo. She was beautiful, feisty and independent. The trouble was that she was stuck in an ill body that meant she couldn’t do the things she loved and instead felt isolated and an annoyance to her parents that had to help care for her.
Jo’s body was so ill that she needed a lung transplant, however she was underweight and needed to put a lot of weight on. It was difficult and sometimes she thought she would never put the weight on, she felt hopeless at times and had to remind herself of the bright future she could have if she got a new pair of lungs from a kind donor and their family. She would forever be grateful to them because in their time of sadness they would have saved Jo’s life.
Jo finally put the weight on after months of struggling and she was accepted on the list. All she had to do was wait and try to keep positive by thinking of the things she would be able to do free of her oxygen, aches and pains and wheelchair.
She finally got the call however the lungs were not suitable for transplant. This happened a few times. Each time Jo thought ‘this is it, I’m going to have a life’ and every time the lungs were not suitable her heart sank just abit more but she stayed determined at all times.
Eventually after waiting for over a year a pair of lungs were suitable and transplanted into her.
6 weeks later she was home, ready for this new life, quite scared because of all the things she would be able to do that she had never done before but also excited that death and illness would not be on her mind everyday, just the everyday worries like other people!
After a few months she decided to move out and live on her own, something she had never expected to be able to do. It was a challenge as she had always been looked after but it felt great. She couldn’t believe how much energy she had, so much to do and so much time now she had her new lungs!
She decided to start a course at her local college, to make new friends and finally get that education she never got because she was too ill to attend school full time. She met a guy on her course and for the first time fell in love, something she had never had the energy for before plus it’s hard to meet someone when you are at home or in hospital all the time.
Jo relished her new life, she didn’t take anything for granted and wrote to the donor family to thank them for the gift of life they had given her. She felt free, independent in mind and body for a change and purpose to her existence.

This story is the future I would have chosen for Jo. Sadly it will never happen because Jo passed away yesterday morning at 5.30am. She never got her transplant, she was on the transplant list a few months after gaining the weight and will never have the life she dreamt of. I feel useless, there was nothing I could do, I couldn’t even go down and visit her to alleviate some of her loneliness.

Jo I am so sorry you never got the life you deserved.

I am donating the money I usually spend on Christmas cards in memory of Jo this year. Please consider making a donation however small to help see off CF, and if you are not a registered organ donor then please, please register!

Its arrived....drums please!!

I've had a good weekend, probably like everyone due to the fabulous weather!

Saturday night Pete and I stayed in, we watched Seven pounds with Will Smith in (who I swear gets more hunky by the day). It made us both cry although Pete said he had hayfever and only cried because I did! I think they did quite well with the whole transplant issue, for a start I think it was good the way they portrayed the woman as needing a transplant but not looking like she is about the keel over any minute which is how people always expect people needing transplants to appear. I wasn't sure about the bit where they told her she was going on the list, they were kind of like 'here's a beeper, good luck'!!!, I would hope they give you abit more information than that! I won't say anymore anyway as don't want to ruin it for those of you that haven't seen it! I'll just mention that even though I have labelled this post with lung transplant the film is not actually about lung transplant, it just fits in with my categories thats all!

On Sunday we went over to a bbq Pete's parents were hosting, it was a nice day as you know! So we drove over with the roof down on the car. I put my cardigan over my hair like a scarf as it blows everywhere when the car goes fast! I looked an idiot but do I really care?!

Today I have done some weeding in the garden, those pesky buggers! I've sat indoors the rest of the time, I don't want to get sunburnt!

I am quite liking doing these videos on moviemaker, now I'm getting abit more skilled (if you can call it that). Here's a video I thought might tickle some of your fancies since I know you all like Alfie more than me!

Here it is..... drums please!!!!

They say that dogs become like their owners...!

Alfie went to the vets today about his cough and wheezing, he was very brave, he had to have a thermometer shoved up his bum which he didn't like very much! He is terrified of the vets, I can't blame him, everytime he goes something is done to him that he doesn't like. He always tries to climb up me to get away from the vet, bless him! His temperature was fine, it was a tiny bit high but that was probably because he was stressed out from the experience, his chest also sounded fine and his windpipe felt fine. The vet thinks it is some trapped mucus and it has perhaps caused some inflammation, that's right my dog is having problems like me, can you believe this??!! She has put him on a mucolytic called Bisolvon to aid respiratory problems where mucus is a complicating factor and also 1mg of prednisolone a day (to reduce inflammation)! I really can't believe my dog is having the same problems as me and the same steroids I sometimes have! I have to take him back in a week to see if he is improving. She thinks it might be allergy related or something, nothing serious as everything seems OK, he is not losing weight or anything and seems fine in himself. Might give him some physio! hehe.

Check out Salli's blog, she recently had a transplant and there are some really good pictures on there, warning! not for the faint hearted! http://ablazingstar.blogspot.com/2009/04/hi-im-back.html

Also check out this story of this woman who has had four organ transplants! Just amazing!! http://www.dailymail.co.uk/health/article-1169269/Ive-FOUR-transplants---Im-donor-myself.html

More Sad News

Suzy (aka Poozie) you were very popular on the cf forum, we are all going to miss you so much and never forget you. Poor Alfie is going to miss his mummy, you loved that dog so much. You were so positive and strong, I'm so angry you didn't get your new lungs in time. You were so determined, making bracelets for cf even when you were so poorly. I admired you for your outlook on life and I hope you knew this because I remember I once told you. You wouldn't want any of us to be angry and negative however I can't help but have this empty feeling in my stomach at your passing and I feel scared for what lies ahead for me and everyone else who is fighting this cruel illness.

Please register to donate your organs if you haven't already done so, every person can make a difference to help save lives, Suzy had been waiting for over a year.
http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/how_to_become_a_donor.jsp

I was thinking about taking a break from the cf forums but Victoria has talked me out of it. I have also told her that if she leaves me I am going to come up to heaven and kick her arse because I don't think I could handle it. That applies to everyone by the way!

A tiny bit emotional

On Saturday Pete and I were supposed to be going to the cinema to see the Young Victoria, instead we ended up dog sitting and watching The Departed on dvd. Why? Because both the stupid cinemas have decided they are only showing the Young Victoria on Mondays and Tuesdays and the other film we were willing to go see instead (Knowing) was on at either 7pm which was too early or 9.30pm which is too late, at both the cineworlds close to us. The 7pm was too early as I worked at my mums shop and so didn't get home till about 5pm and I needed to have a little rest, get a bath, have physio, do tea etc. Helping out at my mums shop is going to become a regular thing as I can manage a few hours, I'm allowed to do it and still get my incapacity benefit, I won't get bored just sitting at home and going out of my mind and of course my mummy is flexible and won't be like a proper boss :o)

So anyway I was annoyed about the cinema thing as I was really looking forward to it and I wanted to keep my mind busy with Louis passing away. It's not like I knew him really well or anything, but it's abit scary when someone you have spoken to suddenly dies, it reminds you how it can just happen, it's upsetting and you have no control over it and it's just heartbreaking to know a nice, young person has passed away. It could have been so different if he had got his transplant! So anyway I was miserable and fed up and I started crying for no reason and once I started I couldn't stop, I'm abit emotional at the moment, that time of the month and everything... Sometimes you just got to let it out! Pete asked me a few times what was wrong and I said I didn't know so then he just left it and stroked me because he knows I like it :o)

On Sunday we went to this warehouse place called JTF and we put the roof down on the car because it was sunny. However not sunny enough, I was freezing my arse off when we were on the motorway! We looked in the wedding bit for ideas and bought some stuff for Alfie, including a new box thing for him to sit in, in the car and a travel water bowl (70p, bargain!). We also bought a new mop incase your interested....
My cousin and friend came around in the evening to arrange the hen nights, remember I am having two! Booked travelodge for both of them, bargains!

I have been asked to do some training on cf at Scope where I volunteer, I feel quite proud I've been asked and appreciate the opportunity however.... I'm still thinking about whether I am brave enough to do it, as I'm abit of a wuss when it comes to speaking to a group of people! I don't know why, because when I was at uni I did it all the time for the law part of my degree, we had to moot, where you stand up and put your case forward for your client etc. Telling people about cf is way more scarier though! I've been thinking about what I could do and so far I have thought I could (not in this order):

-Get people to say what they think know about cf, more out of interest for me lol, but also to show it is an unseen disability and so people tend to know little about it
-Do a day in the life of me kind of thing with acapella to show etc
-Display the variations in cf (if you know one person with cf you don't know us all!) by showing different examples of people I know with cf (if you guys would let me obviously!)
-A picture of me with arrows showing all the ways cf can affect a person
-Explain the genetic side of cf
-Abit about transplant
-Go through problems/obstacles people with cf may have and how a mentor may be able to help them (afterall this is training for people who want to mentor others)

Speaking of Scope, I saw my mentee this morning and we had abit of beauty session. I did her hair, make up and nails, it was good fun! I don't really say much about my mentee or voluntary work as it is all confidential but I think I'm allowed to disclose we had a fun pampering morning. I never use my ghd's so it's nice to actually put them to some use!

Welcome 2009!

Well tomorrow it is New Years Eve, so Happy New Years and hope you all have a healthy and happy 2009, and those of you waiting for new lungs I hope and pray you get them! ;o)

My friend Victoria (I have a link to both her blogs, bottom right) got her call today for her lung transplant. I swear there were tears rolling down my face, I was so happy for her. Only to discover at the last minute, just as they were going to put her to sleep, the lungs were not suitable. This is her 2nd false call, third time lucky springs to mind?! First thing she says? 'well at least I can still go out for New Years and pursue the boys', you are one positive girl Victoria, you are fabulous and I love you to bits and wish I was like you! She goes out all the time (see her blog, she likes to dress up alot!), still works part-time and does voluntary work, how amazing?! So next time you want to have a winge about something silly, just remember how fabulous this girl is, she never ever moans and is positive all the time (but if you ever do want to have a winge hun don't worry I think your allowed!!). I'll stop singing her praises now...!

So what I have been upto? Well Monday we went to Pete's parents again as the grandparents were over, Pete had already gone over on the Sunday to see some friends and then I drove over on the Monday. Sunday night I watched Stardust, I just love that film. if you want to watch a really feel good film you should watch this, they even put a funny spin on people dying but not in a sick way or anything. You just feel great at the end, I love it, a lovely fairytale love story!

Lunch was good, I had to have a veggie pie because his mum did a lamb hotpot and I don't eat red meat as already said. Pete's sister is a veggie so I just had one of her pies, I didn't cause any trouble or anything. There were kidneys and everything in this hotpot, totally gross! I didn't eat all mine, my appetite is abit hit and miss at the moment, I only eat stuff if I really like it, I haven't really touched any of my chocolate, what's going on?! Anyway I hope Pete's mum wasn't offended, I'm sure she didn't even notice! Alfie was abit naughty and kept barking at people when they left or entered the room, I think it's because there were so many people but that's no excuse!

I'm feeling better but I'm so productive it's unreal I can feel it bubbling in my chest, and when i do my physio or cough I get chest pains. When I wake up on a morning my mucus sat in my throat tastes gross and I have to do physio immediately but it's so stuck it makes me feel sick to cough up! Anyway enough mucus information, I have outpatients next Monday so we will see what my lung functions are like. I didn't go to the gym last week and haven't been this week either yet so I don't think I've helped myself, but I've been so busy and tired!

Pete and I took Alfie for a walk today, was bloody freezing! I got Alfie a hoodie for Christmas (although gave it to him about 3 weeks ago!), here he is wearing it!