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!

Ruben!

I had my half way visit last Wednesday. My weight was 54kg and my sats were sitting at 93-94% so not great all in all really. A healthy persons sats should be 100% I think, its your blood saturation levels and I think below 90% is seen as a problem. I'm not an expert but I'm guessing from the things I have picked up along the way, feel free to correct me! Mine are usually 96-97%, so although they are not really low at the moment, they are lowish for me and even the nurse commented they were below my average.

I had my port needle changed, its much better now I have these new dressings, there are still a few nasty bits but overall its better. It is starting to slightly itch now after almost two weeks and driving me a tiny bit crazy but nothing compared to how it used to be. For some reason my port will not bleed back anymore which is rather annoying as most bloods can be taken from it, if it doesn't bleed back they have to try my hand and arms everytime which is not an easy task, my veins are rubbish, they are all tiny and squiggly from so much use!

I also had my tob levels done again which can't be taken from my port anyway, it was rather painful, the vein kept moving and she was wiggling the needle about in my hand, I don't like it when they do that! I had two nice bruises on my hand but they have nearly gone now.

I've not really been upto much because I've been feeling so rubbish, I did start to feel abit better at one point but seem to have gone downhill again. I feel so tired all the time and I'm just doing all the motions each day such as getting ready, eating etc but I don't really feel like me and I'm not all there. I started coughing up blood yesterday, at first it was bright red but now its more streaky in my sputum. The left of my chest also felt like it popped on Saturday, it was very weird and scared the hell out of me but it feels OK, I do keep getting pains at the bottom of my chest though. My chest feels all rattly (if that's a word!) and when I lie down I can hear it crackling and wheezing. The IVs also seem to be drying my eyes out and making them water alot so the skin around my eyes is sore and when they water it stings! I think it's something to do with all this weird crusty, sleep stuff that develops all around my eyes when I sleep so that when I wake in the morning I have to put some effort in to open them! I look amazing when I first wake up........

Anyway I am having an extra week of IVs, I have requested to come off the meropenem and try a different antibiotic. I am going to the hospital on Wednesday for another check up and get my needle changed. Can't believe I have requested another week of IVs! I'm really fed up to be honest and I feel like everyone expects me to get on with everything even though I feel like poorly, is poorly the right word? I don't think poorly sums it up really, poorly is when you have a bad cold or something that comes and goes. Anyway you know what I mean! I feel like I should be starting my Christmas shopping, but the though of having to walk around a shopping centre fills me with dread. I know I'll be walking around like a zombie and be tired after about 10 minutes!

My dad has bought a puppy! He is called Ruben, is a chihuahua and he's about 4 months old. Alfie hasn't met him yet, it could take several meetings before they get on as Alfie doesn't like other dogs, hopefully because Ruben is smaller Alfie might be nicer to him however we shall see! I didn't realise how grown up Alfie is now, until I saw Ruben bouncing around all young and clumsy!! This isn't a very good picture of him however he didn't stay still for me to get a better one!

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?!

Very Tired!

Sorry I am only just blogging, I am feeling really really rubbish because of these IVs and thinking about what to write is too much!

So we went to the wedding on Thursday, I was in such a rush in the morning even though I had 3 hours to get ready, that by the time we set off I was tired already. The nurse couldn't find a decent vein and it took her ages to take my blood and 2 attempts, then the guy delivered my IVs whilst Pete was out so that slowed down my progress. Then because the nurse had taken so long my hair had practically dried into a frizzy mess so that was a nightmare to sort out, I couldn't concentrate and kept getting my liquid eyeliner everywhere on my eye so then started crying which didn't help the situation, everything just felt so difficult. I couldn't even get my earrings in!! Anyway we set off an hour late but were still on track.

We got to Pete's parents and I did my second dose of Meropenem and then got a taxi to the the wedding. I took my last dose of IVs to the wedding in a big bag and put the tobramycin and heprins in a cool bag as they need to be kept refrigerated. There was a room for me to put them in when we got there.

The wedding was nice and everyone had a great time. It was in a restaurant and set our funny so we couldn't see much of what was going on. I'm not a big fan of civil weddings, it was over in 15 minutes, there isn't much to them! I have a feeling they may have got some ideas from the flowers at our wedding as theirs were very similar, the groom, best man etc had an orange cala lily as a button hole like we did and all the flowers were orange based. May just be a coincidence though...!

I didn't eat much food, my appetite stinks at the moment! I had a small glass of wine and some champagne for the toasts but that was it. I danced quite abit for the disco and did my IVs at about 8pm in a back room. I then had to leave them hid under a chair whilst my tobramycin went through as it takes an hour. I was paranoid everyone was looking at me but in the end tried not to think about it. I was also scared the staff would find my hidden IVs and take them away thinking they were a druggies stash! Luckily they didn't! A few people asked about my IVs, nothing wrong with that, better than just staring!

About 9pm onwards I was really feeling the effects of missing my evening physio and was coughing loads and since I was having to swallow the sputum it was making me feel sick. Plus I was so tired I just wanted to go to sleep so I sat down and just watched everyone else dancing. We left at 11pm so I thought I had done pretty well. Not according to a drunk Pete, apparently I'd had a face on all day and could have made and effort and I'd ruined his night by making him leave early. To make matters worse Pete snored all night and even though I am so tired I am finding it difficult to sleep, Pete refused to see if another bed was made up at his mum and dads for one of us to sleep in and he kept telling me to shut up. Eventually at 6am, yes 6am! I tried to find a bed myself and went to sleep in his sisters bed who is at university. Needless to say I was not happy and the next day I felt absolute sh!te (remember I had to get up again at 8am to do my first set of IVs), so much for your husband supposed to care about you! I cried all morning as I had no energy whatsoever and Pete had to help me get a bath, don't know if this was his way of saying sorry. Next time I am not going to bother, I will stay at home and let him go on his own!

We went out for Tea on the Friday and on Saturday Pete went to a party and I stayed at home. Yesterday I slept most of the day asleep and in the evening we went to see the film 2012, it was good but sooo American i.e one average guy saves the day and everyone is very altruistic. There is a little dog in it all the way through that I was hoping would survive, stuff the people! I won't tell you if he did or not!

I've spoken to the nurse today about my sleeping problem, Pete and I haven't shared a bed for the last 3 nights because any little noise he makes drives me crazy, especially when he snores and breathes heavily which he does ALL the time! She has suggested I try some calms and if that doesn't help then to call her back and she will speak to the doctor.

Here are some pictures from the wedding

Edit: If you were planning on buying this weeks 'pick me up' magazine because Tori and I are in it, then make sure you get the winter edition, there seems to be two issues out this week. We are on page 16.

Do Not Spit in the Sink..!

Well the start of my IVs has been abit of a farce! Calea who deliver everything didn't ring me yesterday to arrange delivery. No last time this happened they called me on the actual day of delivery and said 'we are delivering to your house in an hour' and I said 'well good luck with that because I am not in!'. So yesterday I assumed this may happen again. The nurse who comes out to take your blood for tobramycin levels rang me last night so I knew I was going on tobramycin but that was it!

So today arrived and still no word from calea so I called them and they had nothing on their files about receiving a prescription from the hospital. They said they would call the hospital and get back to me. After half an hour I rang the hospital to check something was been done, the nurse was apparently running around organising things because all the prescriptions that were supposed to be faxed to calea last Friday hadn't and I wasn't the only patient calling them.

So I went to start my IVs on the ward and had to have my tob through a pump syringe which is a first for me. Here is a picture of it,

It basically pushes the drug through really slowly over an hour. The meropenem is done by hand anyway and I get that supply from the ward so that wasn't a problem. They have given me some supplies to keep me going until tomorrow so I can have my meropenem. Tob is only once a day anyway so I have had my does for today now. Calea called me whilst I was at the hospital to confirm they were delivering my tobramycin and all the other equipment, saline, hepflush, sharps bins, syrienges etc tomorrow between 11am-1pm. Well that was no good as I setting off for the wedding at 11am! So they have rearranged to deliver for 10am, I am also having my tob levels done at 10am so I am going to be very rushed tomorrow morning!

For anyone that doesn't know, when you have tobramycin they have to take your blood about 16 hours later after your first dose and then again half way through IVs to make sure the does is not too strong or not damaging you. They can't take the blood out of your port as it would read the levels wrong, so they have to take it out of a vein in your hand/arm. I also had to have blood taken out of my hand today because my damn port wouldn't bleed back!

My weight is 55kg and my fev1 was lower than last time but I didn't bother asking what is was, I guess it's now in the 30% range. I also noticed my sats were only 94-95% which is abit lower than usual.

I noticed this sign at the sink which I found quite funny. Only on a cf ward would they need to put this above sinks! I said it should tell you to swallow it, the nurse said I was gross... haha

Love them or Hate them?

You know who I am talking about, two Irish twins with the big quiffs..... John and Edward aka Jedward from the X-Factor! Here I was, thinking X Factor was going to be boring this year...!

I had to post a blog on them because I think the whole thing is hilarious. People are getting so worked up because they keep managing to stay in, claiming it's a fix, its not about talent anymore etc etc.

Well I have news for you, only one person can win X Factor and up until then I'd rather watch the Twins bouncing around on stage than some boring singer that isn't going to win anyway. If they win will I be bothered? No! I haven't been voting so how can I claim its a fix, how many people have actually voted? If they win it doesn't mean the other singers won't get a contract, look at JLS or Laura White, they both now have singles out.

I don't think they will actually win because when push comes to shove and only the really decent ones are left in the final i.e. Olly and Stacey in my opinion, then people will take it more seriously and those that haven't been voting will vote, for example I always vote in the final but never before.

As for Simon fixing it last night by taking it to deadlock, that's his prerogative. He is a judge, he has that choice and he is the one making the money from the show so wants as many people to watch as possible and it is sure working! To be honest I think they put the Twins in on purpose for this reason, an idea probably sprung into Simon's head when he watched the last series of Dancing on Ice.

Does it bother me? No not atall! In fact Pete and I were shouting at the TV for Simon to take it to the public vote as it is so funny! I admit not for Lucy however it's a TV show and not just all about talent as everyone tries to claim.

There are probably alot of things that are set up in X Factor, like the first auditions when they show the terrible people. It is decided who will go infront of the judges, not everyone does. Do you think the 'behind the scene' judges actually think these people are good? No, its for entertainment. I bet they even tell them to make it even worse and be cheeky to make it even more entertaining. Anything to get on TV right?

So my verdict on the matter is LOVE them! However I won't be voting for them anytime soon...!

IV Time

I've given in and phoned the hospital to start some IV's, I hate feeling tired and been useless. I did nothing yesterday and haven't done much today really, I am not sleeping very well and my appetite is seriously not good. I weighed myself yesterday and I am now 55.3kg so I really do think I need some IV's before it starts becoming a problem. Therefore I am starting some IV's next Wednesday, which means I will be on them for the wedding we are going to. Not that happy about it, but what can you do? I'm still going to have a few drinks at the wedding, you have to celebrate!

The night out on Saturday as been cancelled, hardly anyone could go and both my friend and i don't feel great so we were going to drive back instead of stay over and leave abit earlier. So in the end my other friend cancelled it and we are going to rearrange it another night. So it has worked out for the best really. I'm just going to go out for a meal instead now, somewhere nice so I will actually eat something!

To give you an idea of what my eating habit is like at the moment I'll tell you what I have had today. It's quarter past 5 in the evening and so far I have had a small bowl of coco pops, a cup of hot chocolate, pack of chipsticks and 2 hob nobs. I have no inspiration of what to cook for tea, if it was just me and I didn't have Pete to think about, I probably wouldn't have any tea to be honest!

It turns out the mortgage advise we were given was incorrect, I knew it didn't make sense and thought I was the stupid one. Turns out the mortgage advisor is stupid and I am good for realising this! We can still get one but just not as much as she had told us.

I went to pick up the wedding photo package today, we have to pick 50 photographs out of 800!!! Best go anyway as I have to take Alfie to his training class, byeee! x

PS- My friend Tori who also has a blog and myself are going to be in Pick Me Up Magazine, the 13th November Issue which I think comes out next Thursday. So make sure you buy yourself a copy!

Funny Little Incident

I totally forgot about this but was reminded yesterday and it was quite funny..

So last Tuesday I was in the closest city to where I live, ok maybe it's not... I'm not sure. There is another maybe a tiny bit quicker to get to.

So back to the story... I was walking from the carpark down the road and its abit like a ginnel opps I mean alleyway, apparently other people don't know what a ginnel is! Anyway there was this guy sat on the floor even though the floor was wet as it was raining. Not too unusual, there are all kinds of strange people around. He was just staring at me so I assumed he was a beggar but he didn't look like a beggar and didn't have a cup or anything and he kept staring and staring. So I tried to ignore him, what exactly can you do when you are getting stared at by a guy sat on the wet floor?
As I walked past him I yawned, it was morning and I was tired... Then the weirdest part happens, the guy shouts at me in a threatening tone 'what are you yawning at?!' as if he is starting on me! I didn't realise yawning was so offensive! Needless to say I picked up my pace and got away from him! So abit of advice, yawning is now an offensive gesture and must be avoided at all times!!

That's it really, I thought it was funny anyway!

Halloween

Hello!

I don't seem to have blogged in over a week which is abit unlike me! I don't think I have had anything interesting to say really! I'm trying to think what I have been upto and my mind is blank!

Firstly I have been feeling abit fed up because I am starting to feel tired and achy which is a sign to me that I need to go on IVs, I'm really annoyed as i have a few things coming up that I don't want to be on IVs for. Firstly I went to a Halloween party on Saturday then next Saturday I am staying at my friends in Sheffield to go on a night out and then next Thursday we are going to a wedding. So I am not sure what to do, on the IVs or off the IVs I am not going to feel great, I'll probably feel worse on the IVs and won't be able to stay at my friends but I could still go over for the fireworks etc. Anyway I'll see how it goes.

I met someone at the Halloween party on Saturday who 'used to have a friend that have cf', the 'used' to word is always nice to hear..... not! Anyway it was nice to talk to someone who actually knows what cf is, I had a little joke that Pete married me because he doesn't like commitment and knows I won't be around forever, which we found quite funny hehe. Pete admitted it wasn't for the money..!

We also played this game where you pass a grapefruit to each other without using your hands, I was absolutely rubbish at it and had to sit out in the end because it was making me laugh too much and I was coughing to death!

Here are some pictures from the night, Pete is the Zombie and the second picture is playing pass the grapefruit (should have been a pumpkin!)

Pete and I went to see a mortgage advisor on Saturday. They can take my benefits into account which is good because it means we can actually get a mortgage (with some help from the in-laws)! yeay! We are going to start looking at bungalows. We have decided a bungalow would be better because I get out of breath carrying washing etc from one room to another so stairs would make it even more difficult. In addition we have to think about the future as my health gradually declines, when stairs will become even more of a problem.