A tunnel with no end

It seems at the moment my life is like I'm climbing up a dark tunnel with no end. It seems like my life is a huge maybe and the maybe is like a rope I'm holding onto keeping be from falling into the dark abyss below. Some of times I feel like letting go and let myself fall and just fade away, just give up I guess. Whilst other times I thing wait things could go right I could get a transplant this makes want to hold on with all my strength. Everybody seems to think I'm coping fabulous with everything. They only see what's on the outside. On the inside these uncertainties of what lies ahead are eating away at me, like some kind of monster!
over the past week I have fallen asleep in tears thinking what if I can't have a transplant? what do I do then? without one I won't have very long at all. If I try talking to people about it I get ahh you'll have ages you always seem to pull through. OK I have so far but every time I end up in hospital I seem to worse and never get back to what I was before the admission.
I feel as if I have to be that happy positive person all the time because its the image people are giving me. That I have a happy-go-lucky attitude towards everything. I come across that way because what else am I meant to do!
I get asked wow isn't it scary you maybe the first person to have a Lung transplant with Wegener's Granulomatosis?
Well duhhhhh, of course it is! But what am I meant to do! sit screaming that I'm scared!
I get the oh you are so brave, how do you cope? I cope because I have to! I don't know what it would be like to have life of a "normal" child my age, this the life I have. Yes I do get jealous, very jealous but hey you can't have everything. Don't get me wrong I am grateful for what I have and all that etc etc.
The more people say oh you are so brave and positive, you are such a fighter etc, the more I hide how I really feel and the more I put on happy face. but I've taken to sitting alone in my bedroom listening to music through my headphones as loud as possible usually depressing music to block out every other sound and just think about whats going to happen if I don't get listed and if I do what if I don't get a one in time and having a good old cry. This usually takes place when my sisters are at school and then before I go to bed, that sounds so sad it's become part of my routine.
It's like I'm two different people there is the me that everyone knows and sees happy clappy Ayesha, also a chatterbox to those that have me on msn/facebook. Then there is the me I know, the Ayesha riddled with worry, fear, paranoia.
And to top things off my appointment after my transplant assesment which I will proabably be given a decision as to wether I can be listed or not, well this appointment is on the worst day ever. I'd rather not mention the date on such a public blog. but yeh if it is a no, my word what a day that will be, I could change the date but that won't change the what is said in the appointment and I will most likely have to wait months for another.
so yeah this was basically a blog just to write what I'm feeling sometimes I wish I had a duplicate me to talk to. there isn't really many people I can talk to about it like anybody is even bothered anyway. They just say "aww""stay postive" really they are probably thinking "not my problem"
so this is a post from the Ayesha on the inside not the one everybody sees.
remember "When you breathe, you inspire, and when you do not breathe, you expire."
adios amigos
xx

What next?

Well since I last blogged not much has been happening, I managed to get to britans got talent which was fabulous! Just this week I finally got a date for my transplant assesmnet There is a approx 6 month wait but I been squeezed in for the 16th of march so not long! and Then I have got transplant clinic appointment for the 12th of april (which I need to change) It will be very unlikely that I will get decision after this assesment. I have also got an appt with the gastro surgeon he seeing me to make sure I have no reflux and am not aspirating into my lungs. so Hopefully everything is going in the right direction and I will have more answers and more of an idea if it will be possible for me to be listed for transplant.
On anothe note I now have a car! and my driving lessons are going well trying to get as much in as possible and get them over with and pass rather thank take it slow as I end uop in hospital don't drive for while then end up spedning a few lessons getting used to the road again!.
Also I'm looking forward to going to manchester tomorrow to see my good friend Rachael Wakefield will be a long day but well worth it!

Home

Well I'm home my CRP had started to come down and my temperature. The doctors still have no idea what caused it but I definatley had some sort of infection or virus. But all is well now and I'm looking forward to going to watch Britans got talent auditions tomorrow. thanks to robbie for updating my blog while I was in hospital.
Also on the transplant part of things, the transplant consultant rang and said he would like to carry on goign ahead but I need to go back in for another assesment and have more tests and would try and get me in asap but at the moment people who where reffered in september are being given dates for march. But they are trying to fit me when they have a space. It's all a waiting game!

that's all for now folks!

Ayesha Needs Some Positive Thoughts

Hi Everyone.

It's Robbie. I just wanted to update you all on how Ayesha is doing at the moment.

She was taken into hospital on the 23rd of January. She woke up with a temperature of 40 and she hadn't been able to stop vomiting.

She was given Paracetamol, Fluids and she was put on Gentamycin and Ceftazidime. Ayesha is certain that is is not her chest as her SATs and breathing are normal. She thinks it might be a stomach bug.

Her main concern is being able to go to Britain's Got Talent, Please send her positive thoughts and prayers. She really doesn't want to miss BGT.

Today she is still waiting for bloods to come back but she is certain it is not her chest. I will inform you all of any test results ASAP.

Her temperature keeps shooting up after 4 hours post paracetamol. She is still vomiting non stop and she has not managed to eat or drink in the past two days as she cannot stop vomiting. She was given Ondansetron which has had no effect. She was then given Cyclizine IV and that has seems to be having some affect but she is getting blury vision as a result.

Her Cannula has now became unusable, this cannula took 3 attempts to get in and was accessed in the back of her wrist. She is now waiting for a Doctor to put another one in.

Ayesha really needs your thoughts and prayers now. Please send her some positive thoughts. You can leave any messages you have for her in the comments section on this blog post or you can send her a message on facebook by clicking here.

Get well soon Ayesha x

Transplant clinic

Well I have just been to transplant clinic, Unfortunately I am not listed... yet but I didn't expect to be, we discussed the things that posed added problems with my underlying condtion, they transplant team are willing to take a risk they said even if they are 80% sure that it is the right way to go they will take that risk if I am willing to. They said they obviously have some hope it could work out and could be listed as otherwise they wouldn't be assesing me. one the things they are worried about and they no means of finding out is will my wegener's granulomatosis attack my new lungs and in how long a week, a year 20 years but thats gamble they are willing to take again if I want to. The other major concern is, is the airway where they sew the new lungs on damaged if so then really there is no point in transplant as the new lungs won't heal and will just pull away which is the main cause of rejection in early days. They were also a tad confused at the damage in my lungs as it my disease doesn't usually present like that also what causes these sudden dips in health when it isnt caused my infection. I hope all this makes sense and no doubt it has lots of mistakes.
I would like to congratulate rachael wakefield on her media work recently which has so far resulted in 3000 people signing the organ donation register she literally is a lifesaver and can proudly say I am glad to know her and be her friend
I would also like to thank Rob skinner for being such a great friend and being there for me when I needed someone to talk to.
I had a fabulous christmas at home with my family, I managed to get home on christmas eve. I spent the day with my cousins and the evening with the rest of my cousins and aunts and uncles and grandparents it was lovely having three generations in one room. New year was good, I spent it talking to a very good friend on msn and watching fireworks from the window. I hope you all had a fabulous Christmas and New year.
Take care all xxx

been a long time

Hi all,
been a long time since I've blogged, well things where going pretty good I was out of hospital and stable managed to get to the Jonas brothers concert and meet them!! Also just spending time with the family and the usual stuff you learn to appreciate so much! I also won a bravehearts award!!
however since last week things took a down turn, and I ended up needing to go to A+E my normla ward I have open acces to was full so they informed A+E at the local hosiptal I was on my way and to have resus ready. I went in was seen staright away and settled overnight on my Bipap with 15l of oxygen I was managing on that untill midnight the next night where my O2 sats just didn't want to behave. So ITU it was where i went and stayed for a few days to be kept on eye on and was put on more poweful bipap machine called vision. before I went to ITU earlier that day I saw my consultant who was concerned and said he would get my transplant assesment sorted asap but freeman hospital had no beds so It was just a case of waiting for a bed. I am out of ITU know and back on the ward still not my regular but it is better than ITU I am slowly improving and having short periods off my bipap. my 3 day transplant assesment is all booked for monday hopefully there will be a bed. The transplant consultant came to see me briefly and said he would like to have good proper chat about transplant straight after the new year with me and my mum and consultant in clinic. I am hoping that after my asssesmnt I should be able to go home and atleast have christmas at home even if it means i am still using my biapa for most fo the day, It is something I feel I can ween at home.
Christmas shopping and buying presents for my sister has been put on hold, But i would like to thank postpals very much as my sisters and myself have recieved lots of lovely cards and gifts. It lovley of postpals to count siblings as they feel left out alot and obliged to to act grown up and sensible but after all they are just children.
well that is all for now hopefully I will update again soon!
Ayesha xx
P.S I have also made some very special friends recently, You know who you are xxxxxx

Also a great congrats to rachy for making onto the transplant list!!
The best present for some one at christmas would be for the phone to ring saying a match has been found! why not let something postive come out of death and pass your life onto some one else. give the gift of life and sign the organ donation register.

shortest hospital stay ever

well all my sister have had bug and i think I got it but beacuse of me being on chemo and having a low immune system means if i have temperature it can turn nasty very quick. so I was vomiting non stop all since i woke up on friday morning and felt terrible. Mum rang up the GP as i dint want to go to hospital he came home first time i've actually seen my GP its usually hospital!! anyway my temperature was 39.4 when he came so he said was best go into hospital espically as i was vomiting so much. so i went in wasn't ablt to keep any Paracetmol down so had some Iv was tested for swine flu but it unlikley i have it still wiating results started on tamiflu had chest xray and started on sum Iv antibiotics as the doctor said lokked like I had a bad infection. the nest morning i was fine tempertaure had settled kept some water and my tablets down the resoiratory consultant came who i know well and he said my xray looked fine for me better than it lokked when ive been sick with my chest the other doctor must not have know my history. so i cam home that afternoon I was in for 24 hours only hehe. still felling a bit run down but apart from that I'm fine.
oh and I passed my theory test on thursday!!!