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.

Münchausen by Internet

I am a member of a group on facebook for women with CF who are either mothers or are trying to become a mother. It's a secret group so you have to be invited to it and nobody else can see anything you have posted or that you are even in this group. Many women don't want people to know they are trying to conceive or their problems with being a mother, they express personal fears, upsets, details and anger at their difficult situations and they exchange tips and encouragement. Since people with CF can not meet up due to cross infection this group is the the only way for many to communicate with others in similar situations to themselves. It is a lovely supportive group where a person feels she can discuss anything on her mind and not be judged because everyone else on there has had similar thoughts and can give relevant and useful advice as they actually know what it's like and they know it will remain confidential.

I have found this group to be a great help when I have felt down about my own problems and I find it reassuring to read about mothers with CF coping well with parenthood and posting tips relevant to being a CF parent.

However today the administrators (who were brilliant to spot this and investigate) told us that they have had to remove two members as after much research they believe they do not even have CF and have posted lots of lies to gain attention. One of these people I had actually removed from my facebook friends list the day before as I suspected there was something strange about her. I have now gone through my facebook friends list and removed anyone I don't talk to much or know much about who claims to have CF.

It's shaken me up as that group was a safe haven to vent my frustrations and support others, to think that someone has sat there and read through posts and then made lies up for attention makes me feel vulnerable as you never know who people are online and what their intentions are. It then makes me doubt everything I do online, who knows how any people are doing this? Apparently it can be classed as some type of mental illness and I think it must be, why would you pretend to be sick?! It's horrible to think that the only way I can talk to others with CF is tainted by these people who join communities nothing to do with them and make up a whole life to try fit in. Why can't people leave these communities to support one another alone? Why do they have to ruin it by sticking their nose where is doesn't belong? I've had problems with posting things online before and I am much more careful where and what I post now. I have gone off the CFTrust forum as anyone can look at it, you don't even need log in details. I've even considered at times making this blog private because I have no idea who reads it, I try my best to not post too much confidential information on here. But on a forum that is private and on such sensitive topics, that's an all time low.

The Internet is great in some ways but it seems to attract all those strange people out there, please keep a look out for fakers!

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!

Back from Sunny Greece!

Hey Everyone!

We are back from our holidays greeted by the best news ever, my friend Chantelle got her double lung transplant on Monday after only been on the list for about 8 weeks! This is how it should be for everyone and I’m so happy for her. She has a little boy and husband and I am so thrilled that once she recovers she can be the mum and wife she has longed to be. Please pray she recovers well and will be home in no time!

So yes we are back from our holidays and we had a great time!

We stayed on Pete’s parents boat, it’s a different one from last time we went, this one is bigger and abit more luxurious, hurrah! We sailed around the Ionian Islands in Greece. At first the weather wasn't too great, I was sea sick on the first day and vomited up a load of sputum into a bucket, nice! On Wednesday (I think) there was a storm including thunder and lightening and then the weather was great afterwards. One day dolphins swam by the side of the boat which was fantastic; sadly I didn't manage to get a picture!

I'm glad we only went for a week though as I find it a very tiring holiday, living on a boat is hard work and although I didn't actually help with much of the sailing what I did do, tired me out! When I say its hard work its just little things like flushing the toilet is hard as it’s a pump, and getting in and out of bed as the bed is really high up or going below and top of deck as you are constantly going up and down some steps. Then staying on top of my physio was hard work as my stuff was packed away everywhere (you cant leave thing loose on a boat as it goes everywhere when you sail if you do!) and the cabin was warm to do my physio in, plus my nebulisers took longer as they seemed to get clogged up even though I rinsed them with boiled water or bottled water.

So although it’s a fun holiday, it tires you out and after a week I ready to come home! It took a day and a half to get rid of my land sickness; this is where when you go on land you feel like the room is rocking because you are so used to being on a boat!

Just so people can get an idea of how much medication people with CF take, this is a photo of everything I had to take on holiday with me for one week. This photo doesn't include my food tablets though.

I had a problem at the airport for the first time ever with my medication. I always take all my medication in my hand luggage because if my suitcase got lost or delayed I'd be in trouble. Therefore I take all my nebuliser stuff in my bag which is liquid. I put them in a plastic bag like required, well two plastic bags as one wasn't enough and I wanted to keep them separate and the woman got funny with me saying they weren't labelled as medication and in future I needed to bring the labels for all my medication. I told her they came in big boxes and there wouldn't be room so she told me to cut the sticker off every box that the pharmacist sticks on. Have you heard anything so silly?! She then put them through a vapouriser I assume to check they weren't dangerous and insisted putting them all in one bag when I'd separated my tobi and pulmozyme from my nebusal as they needed to go back in the cool bag. As if I could keep all my medication in their original packaging, I'd need a bloody sack to carry it all! I have a letter from my doctor which she never even asked for, I know they have a job to do but its so frustrating when they are talking about something they don't know about.

If you remember I complained last year that I had some problems with suncream, well I tried banana boat and Hawaii tropic this time and they were lot better combined with my salty sweat so thanks for those suggestions!

Here is a video of photos we took. Warning! The song has ALOT of swearing in it, so if you are easily offended turn your sound down! I had to have this song though to accompany the video!

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!

Purpose

Sometimes people ask me why I do this blog, what is the purpose of it?

From other blogs I have established there tends to be two ends of the blog spectrum when it comes to CF. There is the attitude, CF is horrible and I'm going to use my blog as a way to release all my negative emotions and I don't care if it comes across as moaning alot of the time. The other attitude is that I am going to use my blog to show people with CF are just normal humans and we can still live full, happy lives and therefore I will be positive and omit alot of the negativity.

To be honest I don't think either is the right attitude really, both give a false perception of what it is like living with CF. Yes there are alot of negative times and emotions, however we also are normal and live lives like everyone else, its just tougher! To represent your life in any other way is a lie and whats the point in doing a blog that isn't honest? Obviously as the persons CF declines then the balance starts to become uneven and there is more and more distress and negativity, however even then they still do 'normal things', the trouble is when someone is well they don't want to spend time updating their blog, therefore the only time it gets updated is when they are stuck inside feeling down in the dumps and exhausted.

When I started this blog, it was to try and explain all the little ways CF can affect you that from the outside you wouldn't realise. I don't go around telling everyone every little discomfort I have, I don't want my CF to be the conversation topic all the time, I don't tell people that after meeting them I'm going to have to do 30 minutes of physio and a nebuliser before I go to bed or that whilst I'm talking to them I'm trying to keep down a big cough that is dying to be released. These type of things are things that are just part of me however that means people don't understand what someone with CF is having to deal with because I don't bring it up all the time. So I guess my blog was to try and explain these things, that people can read in their own time and I don't have to spend my whole day explaining to try help people understand. CF is not something you can explain in a paragraph, its something even I am still learning about, it effects everything.

I don't do this blog to be inspirational or perceived as brave. I am not a brave person, I do what I have to do to survive. I do it to try and suffer as least at possible and have a good quality of life. If I want anything from people its respect, respect that I get on with life and respect I deal with alot of medical treatments and tests on a regular basis. Respect and the understanding that even when I look well and say I am well, I'm still not as well as you and I'm still doing loads of treatments everyday to stay that well.

Over time this blog has developed however I have always tried to ensure it is balanced. It shows the CF side of things, however also the 'human' side of me. To display that you are not either sick and don't have a life or healthy and do have a life. It is possible to have both in the right circumstances and that is what people seem to find difficult to get their head around. Wow I can go out into town drinking, must mean I'm not sick, or wow I make myself look presentable everyday, can't be that sick. I hope this blog illustrates its not that simple!

I hope my blog also helps others with CF and lung conditions. I think the majority of people who read this blog actually have CF. You would think if you already have CF why on earth would you want to read about another CF life? Well having CF doesn't make you an expert in everything CF related, it only makes you an expert in CF things that you have to deal with. It's also nice to read about others experiences, meet others with CF (remember people with CF can not come into contact with each other due to cross infection) and learn you are not alone in your thoughts or little things you do. I have learnt so much since I joined the online CF community and made some great friends. Although my none-CF friends try hard to understand my life, they will never know what it is like to have CF.

The Glass

Well I am currently off my IVs! Yeay! I got a nice shower this morning, I think everyone should get a break inbetween their IVs to get a proper wash!

I have felt worse and worse since I last blogged, I'm not kidding, I thought I was at deaths door. I got in the bath on Monday and I was thinking about everything I needed to do in order to get dressed for the day, just little things like 'get out of bath' 'dry myself' 'brush teeth' 'moisturise face' etc and I just couldn't do it, I didn't have the energy to do those small things. I just sat in the bath and started crying because I didn't even know why i was making myself get dressed, it's not like I had the energy or will to do anything. I've been getting up at 6 to put my IV's on, going to bed about 11pm after my last dose of IV's, doing physio, tablets, eating and sleeping and that's it. It's all been CF related and it's been bloody hard work to make myself do it. Doing other stuff has not being possible, it was my mums birthday on Saturday so I went for a meal for that, and we went round to hers on Sunday for dinner and that's about the only times I've left the house.

Then on Monday I started to get out of breath really easily, just walking to the bathroom or talking was making me breathe funny and it was really worrying. So on Tuesday I called the hospital and went in to see them. The weird thing is, they couldn't find anything wrong with me (apart from the usual stuff), my fev1 was only down 3% and my fvc was down 12%, my stats were 96%. Oh apparently I have put on 2kg in 6 days, think there might be a dodgy set of scales on the ward.....! My throat swabs showed I had the rhonovirus which is the common cold but the doctor didn't think that was causing the problem. I went for an xray and that showed nothing unusual, so the conclusion was that the IVs were causing the problems.

Therefore I have come off the IV's and have to call them tomorrow to decide what to do. As I obviously still need to have IVs, I went on them for a reason! I'm feeling alot better today, my energy levels are alot higher and my breathing is better, but not 100% better, but like I say, I did go on IVs for a reason! So I will probably go back on them tomorrow and maybe go on colomycin and meropenum, if I do I am going to ask for some anti sickness tablets to try help the side effects. People have also put some tips on the CF Forum which I am going to try and do.

The good news is, that my port seems ok and isn't red or itchy! Must try and see the glass as half full!

The thing that has worried me about this drama is that one day I might feel like this all the time. Breathless, no energy and tired. Isn't that how it feels when you need a lung transplant? I don't know if I can do it! That's the crap thing about CF, you know it's going to happen one day, it's a disease that gets worse, it doesn't get better! OK maybe the glass is half empty, at least I tried to be positive..!

Incy Wincy Spider

Well what a lovely weekend we have had! People always ask me if the warm weather affects my chest, in short the answer is no. I think the humidity is the factor that affects it, but to be honest unless I am forced to do some exercise, it doesn't seem to bother me. I can't comment on whats happening inside as when I went to Thailand my chest felt great, but I was coughing up blood at times, so that doesn't make sense!
What the heat does do is make me tired, I think it probably makes everyone tired. I can't compare my rate of tiredness to another persons, so I have no idea if I get more tired, its not a competition anyway.

What is annoying when I get warm, is the salt factor. People with CF have more salt in their sweat, it can dry as crystals, which is real fun around your hairline. Also it makes your hands taste all salty, although to be honest I don't think my salt factor has ever being that bad compared to others with CF. Anyway it can be annoying, it makes you feel dirty and well ...salty! We have to take tablets to replace the lost salt when its warm, otherwise we can feel lightheaded and get cramps, I find if it's been a warm day and I haven't taken any salt tablets, my legs ache that night and it feels like they need a really good stretch. I learnt this could be related to loss of salt by a post on the CF forum, amazing the things you can find out on there.

On Sunday we went to collect a sofa we had won on ebay for £67, what a bargain! It's to go in the kitchen, my dad was going to give us his sofa but it was far too big and we couldn't really afford a new sofa, so ebay was the answer!

The sofa was in Sheffield which is about a 30-40 minute drive away from us. My brother has a van for work and agreed to help us out, although he was hungover so Pete had to drive there which was an experience for him. This is how much Pete knows about vans, he asked me if it would have air conditioning... (erm no).

The house we went to was abit random. The door bell was at the side of the gate so I rang it and waited. I was just about to assume it wasn't working, when a big sheet of metal which I had assumed was an ugly fence, started rolling up to let us in. Wonder why they need so much security....?!



I gave the sofa a good clean when we got back and then I went around spraying all the weeds with weed killer. I spent an hour on Friday digging up massive weeds, it was like 10% of all the weeds in our garden. So a long way to go yet! Pete washed the car, we have an outside tap now so who knows, it might become a regular thing, I won't hold my breath though haha!!

I got attacked by a massive spider today. I was sorting out the washing and it literally jumped at me, which resulted in me screaming very loud and then trying to get away from it to get a glass whilst having a coughing fit. I put the glass on it then danced around for a while to calm my nerves before putting some card under and releasing it back into the garden. Stay away Mr Spider because next time you might not be so lucky, I may get the help of my friend Mr Dyson!

We have booked our train tickets for when we go to London in August and we have also booked tickets to go look around the Houses of Parliament. So excited! Can't wait for our trip!

That's about it folks, the excitement that is my life! Just got IV's to look forward to now, wayhay!

How to represent CF?

Had outpatients today, my lung function is the same at 43% and my weight is 54.4kg. So all really stable which is a good thing. It annoys me when the doctors say my lung function is really good though, as I know its higher than it has been but it's not my best. So no I wouldn't say it was really good, I'd say it was OK, don't be celebrating quite yet...! Also, why can I not hit the 55kg mark for my weight??!! Weird!

Had my port flushed and some bloods taken from it to check my liver. I stopped taking voriconazole last week as I have been on it 3 months now, so now I am having a month off before I go back on it. My results from Bristol (to see which drugs would be most effective against the fungus on my lungs) have still not returned, it's been 6 weeks now so they are going to chase that up.

Some of the nurses saw me on TV! I hadn't told any of the staff but they still found me out! They said it was good anyway and asked how it had come about. I don't like to give too much away as I wouldn't like them to find this blog, I don't know why. Just wouldn't feel comfortable with it.

Most people said they liked my TV spot. I know it was abit short but I think they managed to get quite alot in, in two minutes. Some people with CF criticised it saying I didn't look ill enough and what was the point of it, that people would just think CF involved a few pills and physio and that was it, they were quite nasty and did apologise in the end. Then on the other side parents of children with CF were saying it was good that is showed me doing everyday things and was positive, one said they would have preferred to not have the average life expectancy bit.
So either way, however it was put across someone would not have being happy.

Firstly, I think it would be impossible to put across on TV how difficult it is to live with CF unless they followed you for months and had a TV programme just dedicated to CF. Even then I don't think it would be 100% successful. Some things just can not be put across, it's something you have to experience.
Secondly, I do not think the point of the programme was to make people feel sorry for me and donate money to the CF trust. If a person with CF had been on the programme that did need oxygen, was in a wheelchair etc, all that would have done was reinforce people's ideas of what a person with CF looks like. The majority of people with CF look perfectly healthy and normal even when very ill, I think that's what it showed.
What I think the two minutes achieved was to show abit about CF, what it involves, whats embarrassing about it (it was called embarrassing bodies after all) and like the doctor said (I didn't get there in time to record this bit), not all diseases can be cured and people have to learn to live with them, which is what I was doing in the footage.
People with CF need to remember, sputum, tablets, coughing and physio to them is perfectly normal. To healthy people watching, these things are not normal and therefore it has an impact on your average person.

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

Jo's Send Off

On Friday it was Jo's funeral, I wish I could have gone but it was a long way and I couldn't have gone on my own. I said a prayer for her at 11am which was the time of the service. Her friends on the CF forum (including me) put our money together to help give her a good send off. Jo loved cake (she ate a whole Victoria sponge every day to put weight on) and she loved Betty Boop, so here is what we sent her..... She would have loved it! We also sent her some flowers. I really miss her and still can't believe she is not here anymore, it's going to take some getting used toIn other news I have been busy... getting filmed! I'm not going to say anything else as it's not getting aired until Easter time, but watch this space!

Today we have been to look at five bungalows, yes five bungalows! We have seen one we LOVE! So watch this space too!

I'm starting to feel better I think, still getting tired easily and chest is still getting pains but it is starting to feel less tight. I don't think I have lost anymore weight but not put any on either, just keeping it steady now. I keep feeling lightheaded and like I can't see properly which is strange, I think it must be the voriconazole as it can cause visual disturbances. It feels like I'm in a daydream and not in my body, not good at times! I've been to the gym twice this week and walked Alfie so at least I am getting back to the exercising, it always goes on halt when I'm on my IV's as I never have the energy to go.

I am currently watching X Factor, so far I have voted three times for Olly. I knew he'd be in the final! Olly to win!!!! This is the first time I have watched the x-factor final in years, every year I'm always out! Yet another sign I'm getting old....!

CF Friends

I realised I never post about my cf friends unless they pass away..... which I don't like! So I'd like to introduce you to some of my living cf friends (and they better stay that way!), I have physically never met any of them due to cross infection rules however talk to them online on a regular basis and I find them very supportive and they probably know more about me than my 'real' mates. I'll show you an example of this, I bet that they all know I am on my IVs at the moment and having a rough time. Whereas my friend who I have known since I was a toddler asked me last night if I had a cold because I was coughing, even though I have told her at least three times in the past two weeks that I am not well and on my IVs and also informed her I am having an extra week of them. She then asked me how long I have IVs for and also kept prodding my arm for me to pass her the drink, I had to remind her my needle was there! She is a lovely friend but you have to laugh...! :o)

Anyway my friends... I have quite alot so if I don't include you I'm sorry with a cherry on top..!

Victoria - She is waiting for a lung transplant, had her 6TH false call on Monday night and is currently in hospital so send her some kisses!

Pete - Is super cool and a great laugh! He is a big fan of Alfie so gets my vote :o)

Chantelle - Is a mummy and she lends me lots of books, shes a very good library! hehe

Megan - likes to talk about spatulas (sorry, an inside joke)

Gemma - party animal !

Emma - Is going to be a mummy in a few weeks!

Jac - Has had a lung transplant and has a tiny cute doggie called Seb, she is also a psychologist which is pretty cool!

Sophie - Recently had to give up work so send her some hugs! I know what a difficult time it can be. She also lost one of her close cf friends today. RIP Anna (it's been a seriously sh!t week)

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!

Pick Me Up

Here is the article. Not sure if you will be able to read it but worth a go! Click here for a copy you can read properly! Its quite dramatic and cheesy but what did you expect?!

RIP Mobile Phone

Since I got back from our Honeymoon I have had a headache every day, not necessarily a full blown one but a definite ache there constantly. As you can imagine this is not very nice and I am getting annoyed at it. It's mainly on a morning and it gets worse when I have a coughing episode, for example last night I was doing my physio and the right side of my head felt like it was going to pop everytime I coughed.
I took some books back to the library the other day and the two second walk it took from the car to the library made me cough alot and then voila I got a splitting headache, all from retuning a few books!

Enough is enough, when 2 cocodamol and 2 ibuprofen are not shifting the pain, intervention is required! So I called the hospital on Monday, I had been putting it off as I don't want to end up on IV's which is my dread everytime I dial that number! I spoke to the nurse and asked her if she could send me a prescription for doxy... whatever its called (my medical vocabulary is amazing I tell you...!), surprisingly she said if the doctor said it was OK then that was fine. Wahoo! I didn't even have to go see them! So I am just waiting to receive that and then hopefully it will help stop the headaches as I am assuming it is infection and inflammation in my sinuses.

I have had to buy a new mobile phone as mine decided to start dying on Saturday. It was teasing me and flashing on and off, my poor mobile, I'd hoped it would survive forever but alas its days are over. I had hoped I could buy the same one. This is a sign of me getting old! I can't be bothering learning new functions on a new mobile and my lovely Samsung D800 does everything I require of it. But no, they don't seem to do it anymore and somehow I have ended up buying a touchscreen mobile which I swore I wouldn't do as Pete has one and I can't use it! I know exactly what happened, it was pink, what more can I say...? So since last night I am the owner of a pink Samsung (I kept with the same make to make my transition easier) tocco lite. We will see how it goes, I can see it been a love - hate relationship!
Does anyone else hate having to transfer all your numbers, photos etc to the new phone? I do! I spent all last night doing it, this is part of the reason I put off getting a new phone for so long!

Alfie started his dog training classes again last week, he did very well. There are some massive dogs in this class, like one of those Akita's and a very bouncy Labrador. Despite been surrounded by giants... Alfie did well for his first session, we are starting clicker training this week. Apparently Chihuahua's don't always take to it (why am I not surprised), so we will see how it goes!
Alfie hurt his back leg again on Monday so I was the owner of a hopping, three legged dog for the day. I was going to video it but felt cruel! He is much improved now, he is not screaming anymore when I try touch the offending leg and he is walking normally again, so I think he just pulled or twisted a muscle. I did spend most of Monday holding one of those heat up rice bag thingys to his leg, that dog doesn't realise how lucky he is to have such a caring owner!

I've started back at the gym after a month of not going! I am planning to join yoga as someone on the CF forum said it can help with your lungs. So my plan is... gym on a Monday, swimming on a Wednesday and yoga on a Friday. We will see how I go!

Presentation

My presentation went really well, yeay!
I was scared I would get nervous and forget what I was going to stay but this didn't happen, once I got going I think it was rather hard to shut me up! The thing lasted for 3 hours!! (with a 10 minute break). Never knew I had that much to say! I hope people didn't get bored, I took some stuff like my acapella, I-neb etc to show them how it works. Then I just spoke through everything with the slideshow to prompt me.
People said it was good and said it had taught them alot, they also said I was good at presenting it. Hope they were been honest and not just trying to make me feel better!
I'm glad I did it now and can't believe how confident I was. Must be because it was on something I know quite alot about! lol.
Here is the slideshow, you might have to pause it if you want to read all of it. I based it around me which I explained to them, so if information doesn't apply to you then you don't need to point it out to me thanks! I am aware everyone with CF is different and emphasised this in my presentation.
Thanks to everyone who helped me out and provided me with the information and pictures, I couldn't have done it without you! Please don't tell me if I got any facts wrong..... lol, it's too late now!
The people on the slideshow are the ones I included in the presentation, I picked people who showed variation the most. If you are not on here but gave me information on yourself, don't worry, you were on the handout! If you want to see your slide let me know and I'll email it to you! If you want me to remove you off this slideshow let me know asap and I will do. Sorry no funky music with this one... :o)
Thanks!! xx



Edit - Sorry just watched this and it's not very good as so small but don't know how else to let everyone see it! Get your glasses out!

Youtube link is abit better - http://www.facebook.com/ext/share.php?sid=125520211354&h=29GIE&u=2x4ME&ref=mf

I am Invincible

Poor Vicky is still in hospital, I'm not going to go into all the details but things are really tough for her. It just seems to be one thing after another, she has been in there over 6 months now. Poor little lady, thinking of you Vicky!

Call me selfish but when these bad things happen to others with CF it makes you think about your own CF. I don't like to think of myself as having CF, I know I have it and jeez I'm reminded everyday from all the treatments and feeling like rubbish but I see that as just been me and not really fitting into a category. For me, not doing these things would be great but also abit weird!

When terrible things happen to others with CF it kind of doesn't sink in that this could happen to me, somehow I see myself as different. I don't see myself as special or better, I don't think it's denial as I don't deny I have CF and I know it's going to happen to me at some point, although I hope it's no time soon.

A girl called Laura from the CF forums passed away the other day, I didn't even know she was that ill. Is that because she didn't know herself? Was she like me and though it would work out? I'm always quite positive and think I'd push through if my health went downhill. Although I am an ill person I don't actually see myself as ill, I see myself as me with a few (well alot) of extra needs and problems :o)

I don't feel scared or worried, I feel like everything will be OK for me. How can I feel like this when people I know pass away and are poorly? I think I would be scared if one of my very close CF friends passed away as I think they see things like I do, think they are invincible. But thinking that doesn't mean that you are, and that might hit me if one of them left me.

Sometimes my attitude scares me, people keep saying maybe I shouldn't get pregnant as it could seriously make me ill or even kill me, even the doctor has warned me. However these comments seem to go unnoticed in my mind and I think to myself, I'll be OK, it will be worth it. Don't worry I'm not trying to get pregnant at this moment in time, don't want my mother ringing me up! Come on people I shall do it properly and be married first!! haha.

So to conclude, I think I am invincible, I will be OK. This is how I go about my daily business without crumpling into a ball and crying. When I do die I shall remind myself of this blog entry and it will make me laugh!!!


I have started attempting to do my physio three times a day, this is easier said than done! I am coughing up so much sputum and its really sticky and thick, I feel so full of the stuff its the only option I can think of. But like I say easier said than done, it's hard to fit it in if you have things planned and it's hard to force yourself to do it because as you can imagine it is not the most enjoyable of activities I can do on a daily basis!!

I went swimming on Monday night, first time in three weeks. Yes yes I know I am naughty! Pete has now joined the gym too and he was watching me as the treadmills over look the swimming pool. Therefore I had to look cool and like I knew what I was doing, this must have brought out a competitive streak in me and I was racing other swimmers. Yes you read that correctly. Needless to say my legs felt like jelly by the end, I still managed 30 lengths though so I was pretty impressed. I did manage to leave my swimming cap there so I'll have to buy a new one as I assume someone will have nicked it, goodbye rainbow coloured swimming cap! I'll miss you!

As well as discovering I can swim faster than about 2 other people (haha) I have discovered I can still run, but only for about 5 seconds before collapsing. The dogs on their walk decided to run to the car in the carpark across the field so I panicked as it is close to the road and legged it after them. I suspected that they may have seen another dog which is code red situation with a road close by! They are evil dogs that want to kill me, however when I got there they were both sat by the car waiting to get in. Evil for making me run.... but good and clever doggies for sitting by the car :o)

Avoided IV's!

I had Outpatients today, I was expecting to be put on IV's but I have managed to escape!
I discussed how I think I may have picked up a virus. I've been sweating buckets during the night, waking up with soaked hair, since we got back from the lakes I have been sleeping nearly all the time and I have a pain in my throat/ear. In addition to this I have developed about four cold sores on my bottom lip which is an indication I'm not feeling great.

My lung function was has stayed stable and my exercise tolerance is fine as displayed when I went to the lakes, the cough I had also seems to have calmed down. I was coughing some thick, dark green mucus up when we were at the lakes but now it is bright green and thinner but increased in volume, not sure what this means. My weight is stable at 56.3 kg, my appetite has been abit funny the last few days so good to see I have lost no weight atall.
The doctor felt my throat and he says it feels swollen, he has put me on aciclovir which is an anti viral for cold sores i.e. herpes as he thinks that is what may be making me feel ill. If I don't feel better in a few days I have to start some ciprofloxcin (and make sure I stay out of the sun!), if still no improvement then IV's will be the way to go. He doubts it will get to that though and thinks I will get rid of the virus myself. I also had my port flushed and they took some blood from it to measure my crp levels.

It's my mum's birthday today so my brother and I are taking her out for a meal later, we got her a vintage mannequin for her birthday present. She wanted one to hang her clothes on and they look good in your room if you're lucky enough to have the space!

My bridal shoes arrived today, they are beautiful! They are champagne colour, lace, peep toe with a bow at the front. I'm getting so excited now!

On the CF forum we wanted to make some videos to put on youtube that were positive about CF for parents of children with CF and younger people with CF. Here's mine I put together

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!