"My Block"

I think I should call this "my block" rather then "my blog". Everytime I try to write another post I suffer from severe mental block!!! I of course will blame the drugs!!

I haven't written a post since September which I suppose make me a crap blogger, but I always feel if I religiously wrote them they would become rather boring and repetitive!

So im back in hospital, but im ok! Trying a couple of new drugs which is fun! One of which they had to get sent over from Spain which took 5 weeks to arrive!! Its an interesting one put it that way. I feel rather spacey at the moment but hoping I get used to it. Not sure if its the new I.v antibiotic or a new tablet I started to try and prevent my stupid migraines which are causing me stroke like symptoms. I saw a neurologist about this a few months ago and was told he believes its a type of migraine called a Hemiplegic migraine. It always happens to me after I have a coughing fit when I wake up in the morning and then cant move for upto 20 mins which is a pain in the ass! Then i get tunnel vision and head pains, which seems to be lasting longer nowadays, so its taking at least a couple of days to recover from. So hopefully these tablets will work better then the previous ones but they do make me dopey! : (

So of course im still waiting for my transplant. It will be 2 years next month that I have been waiting. I had my latest review a few weeks ago which is getting rather repetitive now. My weight had dropped abit though due to having had a sickness bug all week but they werent too worried as long as I didnt loose anymore and put it back on. So back for another review in April, unless I get a call before then but I wont hold my breath!!(because i cant!! lol)

The past week and weekend has been pretty manic. After a couple of days being in hospital the woman who wrote my articles for the leicester mercury called me and said the Bbc have called wanting my number. Not having a clue why I gave permission for it to be passed on. So within literally a few minutes a woman from the bbc called saying she was the producer of a show called the big questions on bbc1. I was asked if i would be willing to appear on their show to talk about organ donation and was told all about the programme. After explaining my views on organ donation and finding out it would be filmed live on that coming sunday, i agreed to do it. I wasn't exactly keen on doing it but the more awareness for organ donation the better!

All my travel was organised to go to and from Cambridge and accommodation for the saturday night so I didn't have to get up at 5 in the morning, which I definitely didn't want to do!

So after sorting all my drugs and ivs out at the hospital I set off to Cambridge on the saturday afternoon and at that point i thought i would be starting to get nervous but strangely I didnt. Nor was I the following morning! After rushing around getting ready and throwing breakfast down my neck (due to only having 15 mins to eat it) I was picked up to go to the school where they were filming. I was checked by security (because obviously I looked like a threat) then was shown to the green room which was filled with lots of different drinks, biscuits and tiny blueberry muffins (no chocolate no!! bloody blueberry!). Everyone introduced themselves to me (well nearly everyone, bar a few) and they all knew who I was, which was odd because I had no idea who any of them were except Nicky Campbell who presents the show. He also knew who I was but apparently he had been given a photo of all the guests on the show. God knows what photo of me he had!!

After brief discussions with people we were taken to the set which they had put together in the school gym. Very weird and too much orange for my liking!! Each quest was individually introduced clapped onto the set which if anyone knows me would know how much I hated it! Then after having to sit down and getting "mike'd up" and discussing a few practise questions we were all set to go live....and of course shit myself!!

I was so glad that organ donation was being covered on the second half of the programme because it gave me a chance to calm down while trying not to fall asleep listening to the first half!

The organ donation part I thought went well although I did think they would ask me questions about my current situation, including my Cf or about waiting on the list itself. Although I wasn't bothered really because I think I would have been more embarrassed talking about that stuff. So after ignoring the bloke with dreadful man boobs (who seemed to stereotype all people needing lungs or a liver as smokers and alcoholics) then asking the Muslim woman opposite if she would let her child die rather then letting them take an organ, i actually learnt how naive people can be. Luckily the 2 men sitting either side of me were lovely and agreed with everything I said, otherwise I would have struggled to keep calm and "maintain my composure" as advised by father!! Although I did manage to accidentally rip the microphone off my top while live but i quickly managed to get it back on without any major panic!

So by 11am when the show had finished we were literally pushed out the building. Although they were all lovely people (besides a few of course) and made me feel very welcome. Then off home i went!!

So other then that nothing major has happened. Bella turned 3 in January which was nice but scary how fast shes growing up. Maybe its not necessarily a bad thing, if it happens quickly then more chance of me seeing it!

Im managing to keep myself maintained health wise to the best of my ability. Bella provides my extra physio which is keeping me mobile as much as possible. So fingers crossed I get my proper call soon. No more of this false alarm crap!!

If I dont blog/block for a while, its because I cant be assed!! Or I feel I have nothing interesting to say!

Heres the link for the show- 

http://www.bbc.co.uk/iplayer/episode/b01chykw/The_Big_Questions_Series_5_Episode_7/

oh and most importantly its kellys birthday today, happy birthday!!!

To be continued.....

A bit of an update!!

Well I realised this week that I haven't done a blog post in nearly 3 months, shocking!! So I thought I would do abit of an update. I guess I struggle to think of things to write about that I dont think are boring!
Of course I'm still waiting for my new lungs and I'm still being pretty patient with it. I have had 2 further false alarms since my last update. Both within the space of 4 days which was a fun week!! There was one on the Monday at 3am, after arriving at the hospital, having bloods done etc and alot of waiting I was told the lungs were too infected for transplant. So after getting home I was absolutely exhausted.  It wasn't as bad as my first false alarm but still very draining.
A few days passed so i finally managed to catch up on sleep and then I got another call on the Thursday at 9am. I was just waking up so I did miss the first couple of phone calls, so it was abit of a panic for Kierran who was at work and took the call for me! After rushing around like an idiot and getting family panicking also the ambulance service called and said they weren't collecting me till 11 ish. So there was no rush really. Once I was there I waited about 2 hours to find out it was another no, this time one of the lungs was suitable but the other wasn't. Which of course is no use to me!!  After that I was told I would more then likely get another call pretty quickly due to there only being a few people of my size and blood group on there list at the time. This of course didn't happen!
After being told that it took a long time to get my head straight. I wasn't sleeping well at all, and was paranoid my phone wpuld ring during the night. Its only been the past month or so I have got my sleeping pattern back to normal (which isn't brilliant but less paranoia for sure). I would have preferred for them not to have told me!
I am thankful to all my family and friends who pulled together through the stress of it all and made it that bit easier!
So since then I have tried to carry on best as possible. Changing I.v antibiotics every 2-4 weeks and regular pain killers to keep me going (among other things). I mainly have to keep on top of things for Bella, I want her to have as much of a normal life as possible (whatever normal is nowadays). I know me having a transplant will turn her life/routine upside down and confuse her while I'm not about for a month or so. Very difficult to keep a 2 year old entertained, especially when she seems to get bored after 5 minutes!! We took her to Blackpool last week which she seemed to enjoy (meeting relatives also), we went to Sutton on Sea for a mini trip away a few months ago, so among trips to farms (or anywhere they have animals!), adventure play grounds, picnics, starting ballet lessons etc and returning to playgroup after the summer hols she has been rather busy and somehow I just about kept up with her. Well slowly trailing behind somewhere!!

I'm hoping I don't have much longer to wait so I can get it out the way and get on with my life!

A Gift That's Priceless........

As next week is National Transplant week I thought I would have a little "rant" about that.
I am interested to see how many people I know (whether its family, friends, or an acquaintance) are actually registered as organ donors. To be honest, I dont think its that many.
I dont think I should preach about it but I can certainly say my opinion. Everyone has a different opinion on organ donation. I suppose some people would say im bias due to being connected closely with the subject currently and needing some new organs myself!
I was once having my hair done at a hairdressers not far from my home. It was the same day I was waiting for the call to say I was "active" on the transplant list. I was chatting with my hairdresser (lets call her Steph) about going on the list, my assessment, my illness and of course organ donation. I was speaking openly with her as I had met her a couple of time previously and I knew her mother (who treats me at the hospital I attend). Deep into the conversation one of Stephs colleagues listened in to our conversation and started voicing her opinion on organ donation. The tall blonde (lets call her Helen) started by saying "once you've had it, you've had it. That's it.People shouldnt get transplants." Me being me I of course laughed (nervously & shocked). I asked her if she heard all of our conversation or just part of it, because if she had heard all of it then that was a pretty harsh statement for me to hear. Steph then very swiftly informed her that I was waiting for a transplant. Then of course a lot of back peddling commensed!! To cut a long conversation short, this "Helen" had then carried on to say that she couldnt give any of her organs because she didnt want to be "cut up". I then told her that if she were to die of anything except natural causes then chances are she would have to be cut up anyway due to an autopsy. Which she didnt realise and then she was asked if she would give an organ to her partner, to which she said she would, with no hesitation!
So it seems many people arent on the organ donor list, but would give an organ to a loved one. So my question is......what if you were in that situation?? What if someone close to you needed an organ in order to live? Your child? Your friend? Your husband/wife? A family member? Or maybe even yourself? Would you then look at organ donation a whole different way? Is that fair?
Is it fair that some people would happily take an organ but would never even entertain giving one??
Why wouldnt you want to give the gift of life? You could live your life and then save 5 others by just taking 2 minutes out of your life to sign the donor list. You could keep a mother/fathers child alive, you could keep a childs mother/father alive, a friend who would be able to carry on fighting and give inspiration to others around them. Theres so many situations that people dont think about.
Then theres the people who wait and wait for a transplant and that day never comes for them. Its too late. Theres not enough donors to save everyone, which devatstates families and friends everyday. 3 people die every day waiting for a transplant due to the shortage of donors.
Maybe there should be an opt out system?
Your not going to need your organs when you have passed, (to put it abruptly) so I dont understand what some people are so against. Whether its religion or some other factors I dont know.
Statistically, you are more likely to need a transplant than to ever become a donor. So people really should stop and consider what if they needed a transplant!I think organ donation is one selfless good deed and the more people that support it the better. It has already saved and improved so many lifes over the years, so lets keep it going!!

Have you registered? If not then please take a minute and think what you would do if you or a loved one needed an organ??

For more info:-
http://www.lltgl.org.uk/ 



 To register:-
http://www.organdonation.nhs.uk/ukt/how_to_become_a_donor/how_to_become_a_donor.jsp

Post Transplant.....to do list (well sort of!)

I often wonder if my life is real. I have the "Truman show" thoughts swarming around my brain, this is usually when I'm on the toilet or in the shower because this always seems to be when i think most. Yes that's right!The toilet! I wonder if my life is a test, and with each obstacle that I have to leap over (or in my case drop and crawl under) I do think its some sort of plan which has been mapped out by someone. Now this transplant obstacle (I'm still heading towards) is the scariest one so far. Even though I have been waiting 14 months I still don't know if I have the courage to go through with it. Alot of people seem to think i do, maybe because I don't talk about it much and just get on with my life the best I can. But the truth of the matter is that if I hadn't of had Bella I don't think I would be doing it at all. Having a daughter makes it a no brainer,and I have to do it for her.

I have spoken to other Cf sufferers who have had transplants and read other blogs and I think in some ways it scares me more. I feel better for getting the facts but it all seems so real of how much of a gamble it is. All people with Cf are amazing but to go through having a lung/heart & lung transplant is something else. Fair enough I will be asleep for the operation (so that will be someone elses obstacle), but waking up with wires coming out of me from every direction, the pain and the recovery I don't think I can do it. It's at this point I start to think too much and have to stop myself before I talk myself out of it or worse cry!

So now that I have been waiting over a year i have been starting to wonder over the past couple of weeks if its actually going to happen. I have had one false alarm within this time....does that mean I could be waiting another year for another call which may or may not be a false alarm? If I do have to wait another year,will I manage to wait that long? Or maybe I could get a call in the next 10 minutes?

So the question I have been asking myself the past week is, after all the speculation, emotions and waiting, what will I do if i get my transplant. If I'm going to go through with all that then the time I have after i shouldn't waste really should I? Being told a new set of lungs won't necessarily extend my life but make it better quality then I should definitely at least try and make that time memorable.

Well I don't really want to jump out of a plane, swim with sharks, go on safari or travel the world, but there are certain things I would like to do and see. Alot of people write lists of things they would like to accomplish and sometimes it can be a rather long one! I don't think I could do the same as it wouldn't be very long.

The main event I want to see is my daughter grow up. I want to be there when she has her first day at school,  take her shopping for her first uniform, iron and lay it out for her. I want to carry on seeing her doing things for the first time. Like her first sports day, school play, riding a bike, or maybe the first time she's able to make me a cup of tea!! I hate the thought of not being there for her, or not making sure shes has everything she needs in the way I like it doing. I am a strange fussy sod! I also want to go on holiday abroad again. While on the transplant list its not appropriate to go, as it means coming off the list for that period of time away and sorting out oxygen and in my case I.V antibiotics to take with me, Its not impossible but it would be very difficult to do all that, get insurance and take a 2 year old. So a year after transplant I want to go somewhere nice with my little princess, as this will be a first for her. I would have to wait at least a year due to the anti rejection drugs I would have to take. You have to avoid the sun, as these drugs can make you prone to skin cancer, least I think that's the reason! So somewhere its not raining, with a beach would be fab! I have always wanted to go to Florida and swim with dolphins. Oh and of course go to Disney World! So to do that would be amazing as I have wanted to do that forever! So with that maybe a lottery win would come in handy!

I would like to be able to take my 2 crazy dogs out for a run/walk everyday and maybe if I'm daring enough, Bella too.

For the time being they are the main things I want to do. I don't want to have too many things just incase. So fingers crossed I get my transplant and people continue to join the Organ donation register!!
 

http://www.organdonation.nhs.uk/ukt/how_to_become_a_donor/how_to_become_a_donor.jsp

To be continued.....

Time flies when your screaming!!

So the past couple of weeks have been busy and exhausting. Typically Bella managed to get a chest infection and then a cold. It's tiring enough having one ill person in the house hold yet alone two. But I always think positive that I'm lucky to have a well child in general. 

So the past 8 days we have been having to give madam antibiotics. How on earth do doctors really think a child will consume this medicine. I know for a fact I would refuse it along with many other drugs I have refused over the years. "Banana flavour"?? yeah of course it is,spot on,that's exactly what it tastes like. In case you don't know me well,that is me being sarcastic. Even the smell makes me gag so how on earth am i meant to get a 2 year old to swallow that 3 times a day.Cobblers!! The first dose is easy- "oh yeah Bella look, Calpol,yum!!" and straight after the spoon goes into her mouth she looks at us like we have just pulled the legs off her woody doll or flushed her blanket down the toilet. That's it then. She knows. The secrets out,its not Calpol and she will suspect every medicine spoon that is bought close to her lips without inspecting it first and screaming!! If its not the lovely purple sweet tasting Calpol then there's no chance!

This resulted in doses being mixed into her yogurts and deserts. Mainly yogurts, and fruit/custard pots. It seemed to work for a day or two but she knew. This slowly resulted in us having to feed the yogurts to her rather then her doing it herself. Almost like she was punishing us and wanted us to feel bad with every mouthful she painfully had to swallow. Then it has evolved into her not even eating her yogurts. The one food in the world that she loves and is guaranteed to eat however she feels is now a no go. Big distractions are required to feed it to her. "Look Bella - a plant!! ooooooohhh lets just put it on your tray for you to slowly pull apart and kill while we feed you" and " Bella look a baby laughing and falling over on you tube". The best one was on Sunday when we had to get a 5 year old to feed it to her. This worked perfectly,almost to the point i considered adopting another child. Note to Dr's or medicine making people - make better tasting medicine you fools!!

Medicine ends tomorrow and she seems to be better - Thank God!! Hopefully she will be back on track in her relationship with her yogurts some time soon!

Its hard for any mum when a child is ill but it was rather exhausting last week. Impossible to get rest when shes feeling crappy and only wants mum or dad so its almost impossible to get a break. Now she seems to be back on track and easily amused for 5 minutes then moving onto something else. Back to playgroup next week, yeah!!

So since madam has been better we have been enjoying the sun and had a nice Easter weekend (mainly consisting of the normal family gatherings etc). My Iv antibiotics have been changed so hopefully I will have a little bit more energy to last the rest of the holidays. Since the false alarm a few weeks ago I seem to be appreciating things alot more. Little things mainly.  So I have enjoyed the extra time with Bella and I value every minute I spend with her. Even if its telling her off for drawing on the wall with my eyeliner, or gasping for breath as i have to carry/drag her away mid tantrum, watching the expression on her face as she learns something new, says something funny, trumps on the wooden floor like a sniper riffle, or just gives me a hug. Its amazing being a mum and I hope I carry on to be for a long time.

To be continued.......

Don't Judge A Book By Its Cover!!

So my next post topic has been abit of a challenge for my scattered brain. A few subjects spring to mind but making them worthy of a post is the problem.I'm one of those people who usually has something to say but on this blog it's easier said then done!!
 So I'm currently sat in the local pubs wacky warehouse slowly gaining a headache from very over exited,sweaty,static haired, screaming children. It seems to be a good way of burning my mini me out with minimum effort from me (due to her being chased and watched constantly by Kierran while i drink tea and type my blog).
 There's alot of mums here which all appear to be around the same age group and seem to all know each other. I always smile and where appropriate will say something but it's usually returned with a glare, fake smile, grunt and a swift look up and down. I seem to be an outsider or the enemy for some reason. Either they must speak some mummy's language I missed a class on or i suspect I'm being stereotyped the Classic "teenage mum". Is this necessarily a bad thing? Why is this worthy of a glare and pure ignorance?
 Alot of my family say I shouldn't care what other people think but deep down it annoys the hell out of me. I find myself even trying to buy clothes that would make me look older,which doesn't really seem to work out! On average with what people say I must look between 16 to 20, and have done for years!! when I'm older it would be great of course to look younger but currently it's not due to being treated different to another "well" 25 year old parent.I wonder what these mums think of me when they see me with my daughter and painfully change the expression on their faces. I know for a fact it's not "oh she must be a good mum" or "sometimes things aren't always as they seem". I dress my daughter nicely,have a nice home and I push my health to the limit everyday (and bank balance) to give my daughter everything she needs.

Bella (with her crazy bed hair) using my oxygen tubing as a skipping rope. Highly amusing and has multiple purpose!

With the glares, ignorance and judgement is it any wonder I find it hard to wear my oxygen in public?I even hate wearing it in the privacy of my own home,yet alone giving people the satisfaction to stare at the sick girl. The few occasions that I do wear it (in public) I have had rather rude responses. If I happened to see a person in a wheel chair, I look away immediately and get on with what I'm doing because I wouldn't want them to feel how I feel for one second. Why cant everyone do this? Rather then lock their eyes in your direction and usually catch flies with their mouths wide open.. This of course leads me to believe that some people are ass holes!
 I can't even park my car without getting grief.I park on disabled when I can and always display my badge. I often find people (on foot) will purposely walk past my Windscreen to see if I have a badge because obviously I need to be in a wheel chair to park there! I even pulled one man up about doing this.I told him I had a disabled badge so there was no need to check.to which he replied "disabled.......I'll make you ****ing disabled". Of course I very quickly locked myself in the car and laughed at him like I wasn't bothered.which of course I was,and unfortunately wasted my tears on the twit.I have had the odd person requesting to see my badge, like I have borrowed it off a relative or something.which is annoying but also quite satisfying to see their faces when I prove them wrong!
 If I went round wearing a t shirt saying "I have Cf, I'm 25, I have a daughter and am on the transplant list" would I be treated differently? Unfortunately.....I think so.
 I think getting asked for ID can be a problem for many people but being asked when buying paracetamol is ridiculous, although I did find that rather amusing. Apparently appearances don't matter and its whats on the inside that counts, but I beg to differ when my appearance seems to cause me so much grief!

Although I do use looking younger to my advantage on some occasions. If a sales person, or a Jehovah's witness (for example) annoyingly knocks at the door I innocently tell them my parents are not at home and swiftly shut the door. Also for a long time I managed to get away with buying a child's train ticket or bus ticket for a good few years past the normal age.
 It's the one good thing yet bad about Cf, is that we can look like any other person without Cf. People with Cystic fibrosis (sometimes called an invisible illness) have bad absorption which causes poor growth.
So on a Me update, after last week the days have been abit of a muddle but all back to normal just about. Although I'm rather jumpy everytime the phone rings again.Just like i was when i first went on the list a year ago. My chest is abit more "fruity" then usual so I'm struggling abit more. Lots of bed rest where i can of course and drugs to avoid the dreaded hospital admission!! Took Bella to a speech therapist yesterday which was interesting. So have been taught the best ways of getting her to start saying proper words, which is needed with a big dose of patience.
Now i just have to figure out what we are going to do to keep her occupied for two and a half weeks due to no playgroup or nursery. Will and Kate's wedding is costing me an extra £26 of nursery fees on top of good Friday which will be closed!! Any ideas people,let me know!!

To be continued......

Ready.....Steady......No!!

Well after doing all my pages first I thought i might struggle with my first post on here. But after the day i had on Monday I should have something i can talk about!!

In the words of my daughter Bella - "Ready...Steady...No!!" pretty much sums that day up!

The thought of doing a blog had crossed my mind a few times over the past year or so but I always managed to put myself off the idea. I thought people wouldn't read it or might think its silly but after a slight push from a friend i thought sod it, I will do it! Hopefully it might help someone who needs a question answering maybe. But bearing in mind I'm not a person to moan about my health, i just get on with it so it was rather odd writing about it with the thought of people possibly reading it.

So basically I'm 25, have a 2 year old daughter, have Cystic Fibrosis and am on the transplant list waiting for either a lung transplant or heart and lung.

Yesterday i got my first "call" as such from the transplant team at 5.30am. I didn't answer the phone at first, due to being half asleep and confused as to why i was being blinded by my phone at half 5 in the sodding morning! I called the number back and was told there was a donor available for me. Like a spare car part or something. I cried and starting typically coughing at the same time, not easy when your trying to have a conversation on the phone! I was told to get ready and there would be a car outside my house to take me to the hospital at 6.15. I told Kierran (my partner) and he quickly rang his mum who then got sorted to come and look after Bella. After obviously panicking I got my things together and gave Bella lots of hug before leaving in the ambulance. I was told we didn't need to rush yet so it would just be a steady drive. Until we hit 3 lots of traffic, then the lights and sirens were put on which i did enjoy (just a tad!).

On arrival I was greeted and shown to my bed. Then bloods were taken and various other tests were done, all of which came back fine. I was then told that the tests were being done on the organs to see if they were suitable for transplant and it was just a case of waiting to hear back.

Kierran finally turned up at that point as he was about half hour behind due to him waiting for his mum to arrive. We were told there had been some delays in the testing, and once one person makes a delay then it backs the whole process up. They thought it would be around midday till we would have an answer if the lungs were suitable.

So I waited and waited then waited a bit more. They were very confident it would be a good outcome. My Dr came and signed consent forms and an anaesthetist was sent to see me so I was ready to be taken to theatre straightaway if the lungs were good stock!

At 2pm I was finally told I would be going home. The lungs on final review weren't good enough due to some damage at the bottom, so they were not given the go ahead. I was upset and annoyed. I was also shocked that i was upset and annoyed. All i wanted, the whole time I was there was to go home to my little girl and get some sleep. I was physically and mentally exhausted. Waiting that long had made me get my head around it (just about) so it was mixed emotions when they said no.

So it was back home and back to waiting again. At least I had a test run in some respect and i got further then i thought I would. I didn't think if I got a call I would be able to go through with it.

So by the end of it the day was pretty crappy, but got to carry on and keep my fingers crossed that next time it would be a better outcome. I'm not quite sure i could cope mentally going through that over and over!

The past couple of days i have been totally out of sync so I'm now trying to get back on track. So on that note i will finish this post for the time being.

To be continued........