The journey starts

Its Friday 19 December a normal day , well Tahlia had just done three weeks in hospital. She was rough, spent the whole time being sick and weak and not able to get out of bed , however she always made the most if it and perked up when visitors came. Anyway she had been discharged the day before and was looking forward to her own bed and of course Christmas. Between us we had no cards wrote and no presents wrapped, we decided it would be a busy weekend. So to Friday, I went In to say good morning as usual before going to work and she said she would stay in bed until lunch time and get ready for card shopping with Reece when he finished work.( you all know who I mean). Well off to work I went. Took coat off,  phone went , the conversation on the other end Tahlias had a call, what, Tahlias had a call, what call! Transplant ! Oh s... I think I said it's Christmas. How I drove I don't know, bare in mind I should have been calmer as of a call previous, oh no just as shaky. I got Ethan from school and took him home to say goodbye to his sister. Marc and tahls in action mode and ready to go with help from my best mate who phoned me. Ethan and Tahlia had a big hug and kiss. Ethan said can I go back to school now it's play day, so we went off to harefield and he back to school. Well it takes 1hr and 40 mins approx to get there , no Marc took 1 hr 5mins and also stopped for petrol. Me and Tahlia chatted and sang all the way.we arrived at harefield to be met and the run up started. At this point the lungs still had not been seen by team and still at the other hospital. Now came bloods LOTS! Tests, paperwork along with laughs and smiles. Tahlia being her, making herself known. Tea time came and still no news (another false alarm went through our heads) in came a nurse with a pot of tablets don't touch them she said only if you go to theatre. The surgeon came and said he had still not got lungs but he will check them personally as he will not put any shit (his words) into such a pretty young lady and wants them to last a

Long time ( well!). At 6.45 finally we had the go ahead. Tahlia became quiet and spent most time on her phone. I French plaited her hair as always for theate, she always said she looked like a bald chicken.  At 7.30 she took those tablets and said that's it now no going back. On the trolley to theatre we went still smiling and keeping her calm. As with Tahlia nothing is straight forward they had lost her consent form so we spent the next half hour waiting for them to be found and in the end signed new ones. I was told I needed to go she have me a big hug and lots of tears love you momx I walked away so mixed up tears rolling down leaving her as usual with her dad. She always wanted him for theatre. There will never be a father and daughter bond like they had at this time. How many times she had been to theatre she still hated it. She hated being put to sleep and wanted her dad with her at that

Moment so he was the last person she saw. She told her dad I not sure I'm ready for this yet. However he knew she did not want to walk away. With reassurance we will be there the other side waiting for her all the way, she went to sleep telling him make sure we ate and I love you through tears down her face. Marc walked away not knowing. Now for the long wait and finding her little brown book explaining in her words who to contact and what she wanted to happen after if she got through or she didn't . Who knew then that it would be needed for both of those journeys. What a girl to think of it all at such a time. 

Tahlias transplant journey

I am not sure if I  doing this right as you can imagine I have never wrote a blog. By the way this Tahlias mom Tammy. When Tahlia recieved her call for transplant she told me and her dad that she wanted it all recorded so she understood what had happened whilst alseep and after so she could look back on her journey throughtout the time. Well I'm sure knowing her and finally getting to read her other blogs this is where some of it would have ended up. So I am going to try and please try to keep with me as I start to write about her journey. It may be short and sweet or long dark and through several tears but I will attempt to explain it once ready. I will start to post the beginning soon. So be ready to see it through mine and her dad's eyes those first days after transplant.

Thanks for reading Tammy x

lights, camera, cough...

Hey guys,
     You'll never guess what for once i have a full positive post, well most of it is you looking at pictures of me, how lucky are you?

A couple of weeks ago, me and Mais (if you have no idea who Mais is, where have you been!? She's my best friend) got approached by a worker of Adee Phelan's, and if you have no idea who Adee is, well shame on you! Adee is a very famous Hairdresser and is one of the most generous, kindest, funnest blokes in the whole world, I promise you! He's simply amazing! Anyway, carrying on, we were asked if we would like to go down to the Salon and have our hair, make up and nails done aswell as a photoshoot after, at a ridiculously discounted price, and with it being Adee's salon, how could we say no!

Mais and myself went down to the salon today and had a great time! The staff were friendly and very welcoming and the photographer was absolutely lovely, she made us feel so comfortable infront of the camera and was full of compliments, which always helps when you feel nervous! The only downside was Adee himself wasn't there, but he was busy at Teenage Cancer Trust meetings, because he does alot for charities and other people, which is very sweet of him. So I guess I can forgive him for not being there!

We had such a laugh taking the photos and had some very needed 'Bezzie' time. Having our make up and hair done was really nice, having someone else do it for a change! Just wished I asked for a eyeliner lesson because it looked great! The pictures we're all great, we had such a laugh having them taken, even though we had to be serious in some, and once we seen the christmas stuff, we had to have Christmas photos, especially with it being so close! Everyone should expect a Christmas card with our faces on now!
 All in all we took 40+ photos, but we managed to cut it down to 20 that we liked! I really recommend it, and i'm not just saying that because I know class Adee as a friend!
I'm going to leave Adee's twitter and salon below, give him a follow! He's hilarious!
Adee's twitter
adee's Birmingham salon

I hope you like them and my face hasn't scared you too much

Till next time,

Vlogging?

Hi guys,
    This post is going to be short and sweet. Lately a few people have suggested to me that i make Youtube Videos along with my blog, which in the past I have thought about but i'm not too sure. I can be quite confident at times but something like this makes me very nervous. Plus, I don't even know if they will be watched, I mean its bad enough you have to read what I put then alone see my mush on your screens ever so often. So, really guys, I'm asking for your advice, should i or shouldn't i? I mean also, what would I speak about, what would you guys like me to talk about? Please let me know!

My friend Holly, who i've became very fond of the past year or so has an amazing youtube channel and blog that you should all go and watch/read and subscribe to. She's an amazing girl, who explains things so well. I adore her so much, and I have everything crossed that she soon gets her transplant.

Holly's youtube channel
Holly's blog

Last thing, if anybody who reads this is good with blogs, websites etc, would you please contact me, I think its time i revamped my blog, because for a Media student, I'm terrible!

Thanks guys, till next time.

False alarm

Hi again guys, how're you?
    Some of you that follow me on Facebook will already know but last week, I had a false alarm for Transplant.  You know what though, why do we call it a false alarm, because they're is nothing 'false' about it. The way you feel is so very real but at the same time it doesn't quite feel real, its a strange mix of feelings from getting the call to getting ready to the call to say it can no longer go ahead. This is going to sound strange to some people but others may get it, i was gutted when I got the call to say the lungs were no good, but at the same time weirdly relived, as I felt I wasn't quite ready. When I got off the phone, the first thing my dad said was ' Are you ready for this' and in return I replied ' I don't know'. In my head after my last appointment there, I was convinced I would be wait at the least another six months, so when I got the call at 3.30am Wednesday morning, I was in utter disbelief that it was actually my time, they had actually found me a pair of lungs a lot sooner than anyone ever thought. I had built myself up so much for the wait that when I got the call it felt too soon. It also felt too soon because, i had all these things I wanted to do before it happened, like little things like write my parents and brother a letter, plan my funeral if it came to that, and I hadn't done none of it except write everything I wanted to do in a little book. This all makes me sound ungrateful I got a call at all, and it isn't that I'm so grateful, it was the most surreal and relived feeling ever, its just in my head I just didn't feel ready. All i've thought about since my last appointment was, I could live longer if I didn't have a transplant than if I did, but Its a risk I have to take, but I keep thinking, am I sure I want to take it.
   I honestly don't think anybody can explain the feeling you get properly when you get that call, especially when you're woke up early hours of the morning, trying the listen to what they have to say on the phone while you're in a complete daze and once you slowly started to come to terms with it as you get ready, you get the call to say the lungs were no good, you just come crashing down. Looking back at it all now, it feels like a twisted dream or even nightmare, after running around the house trying to make sure you don't forget anything, to calling family and friends and worrying everyone. It's just so hard. How I see it now though, is I never felt a 100% ready and clearly it wasn't my turn, everything happens for reason. I do know now thought that I am top of the list and the call will come any second. Hopefully next time, I will be ready and it will be my time.
   I want to thank everybody for being so supportive, especially the family and friends that were called at just an early hour.
Till next time,

'running out of time' Birthday, surprises and Kitty!

I know I promised my next post to be happier but this one is going to be half and half, ok?

Firstly, a few of you have noticed lately, I haven't been quite myself. Well, two Wednesdays ago, I had an Harefield appointment and to say it didn't go according to plan is an understatement. As soon as i walked in my transplant consultant, told me he didn't recognise me, as I looked a lot iller this time than i did back in January/February last time i seen him. He continued by asking me why I hadn't signed the Lobar transplant papers, I hadn't because the other times I had been there it was only briefly mentioned. This is where things started to get serious. He told me straight, which I always appreciate, I hate when Doctors try and sugar coat things, I mean I know they do it to be nice but I'd rather them be blunt with me. He told me, I was running out of time and that he didn't think I would get a 'normal' transplant in time. I'd die on the list or i'll be too ill to receive one, he gave me 6 - 12 months to wait for a transplant and 6 - 18 months left to live. I didn't really know what to say, and to stop myself crying, i pretended to cough, which then actually made me have a coughing fit, well at least I could hide my tears. He carried on to tell me, that he thinks my only hope would be a 'Lobar' transplant, which means the team will receive lungs that are too big for me and cut the lower lobes off and just transplant them. Having a Lobar transplant, would give me a higher chance of getting a transplant, but it is a longer more complicated surgery, a longer and harder recovery, and obviously a higher risk. It is also a very rare op to have! He also told me that he would try and get me on the paediatric Lung Transplant list, although there is a high chance they will say no, and Great Ormand Street would prioritise if it came down to me and a child, which at the end of the day they're a child of course they should prioritise over an adult.   He then asked me if I had any questions, but as you can imagine, I was in such a state of shock that I couldn't think of anything. I mean I knew sooner or later I would be given my life expectancy, but it doesn't make it any easier.

After, a very very hard conversation with my parents, and giving myself some much needed time to myself, I called Harefield with a bunch of questions, I agreed to go ahead and sign the paper work for the Lobar transplant. I mean if i was willing to take the risk of a 'normal' transplant I may aswell take the risk for a Lobar one. I also found out that after my consultant had pleaded my cases to go on the Paediatric list, they did allow me on. So now hopefully I have some more options.

I just want to thank the small amount of people I did tell, for being so supportive and waiting until i was ready to talk, because for a while i didn't to talk to anybody about it, i didn't even really speak to my parents about it, until I kind of didn't have a choice, and if i'm honest, I don't think I'm still 100% ready to talk about it.

On a better note, I turned 20 last week! My god, did I not want to turn 20! I cried at the fact I was no longer a teenager, I feel so old! However, considering I was looking forward to my birthday and I was stuck in hospital, I actually had such a lovely day! I woke up to my physio and nurses decorating my door with balloons and banners (even though i'm petrified of blow up balloons, I know I'm a baby) to my mom bringing up breakfast and helium balloons! Whilst my mom and I ate our breakfast and I opened my cards the nurses and my physio came through the door singing Happy Birthday with a cake, (first cake of the day!) They then laughed as I couldn't blow my candles out, damn shitty lung capacity!

My 3 birthday cakes

Then early afternoon, my best friend came up with lunch and a naughty amount of presents. She spoils me way too much! Plus, she made cake, and for you's that don't know my best friend, she can't cook to save her life! So when she told me she was making me a cake, I was a little scared, but OMG it was amazing, also my favourite chocolate salted caramel! Mmmm, now I want cake!

Later that day/night they let me off my Aminophylline drip to go out for a meal with my family and Mais. After discussing where to go for a week, we decided to go Bar Estilo, which is a tapas bar, right up my street! We ordered so much food, but it was so good! If you have one by you, I 100% recommend it! We then ended the meal with another cake (which my mom made). I'd lost 5kilos while I was in, I think its safe to say after all that cake I must of put it back on! I had an amazing birthday and i was so spoilt by everyone, seriously I can not thank people enough, thank you so so so much! I love you all!

Mais, Eth, Momma, Daddy 

A few days later, I got another amazing surprise! For months my mom and I have been speaking about Adee Phelan's new salon opening in Birmingham the Custard Factory! I entered competitions and tried countless times to get an appointment, but nothing! So, when he turned up in my hospital room on Friday, I couldn't believe my eyes, I think all i said for a good 60 seconds, was omg! How was this even possible!? Well my sneaky and amazing friend Kelly, has set the whole thing up for a birthday surprise and to cheer me up! I mean I couldn't thank her enough, I owe her big time! Adee, cut my hair for me and gave me a shit ton of products, and invited me to his Salon! I was just in complete shock! He was one of the loveliest, caring, funniest person I have ever met! He truly is a very amazing, special man! And Kelly, well I can't even begin to explain how much i love her, she is a very very special person and means a hell of a lot to me. Oh, Btw if any of you have a spare couple of pound, would you sponsor Kel for me, she's doing a zip wire for CF, the adrenaline junkie! I would love to join her but unfortunately I am no longer well enough to be able to do things like that! She has £150 to raise in a small amount of time, it would truly mean the world to both of us   http://uk.virginmoneygiving.com/KellySercombe

me and Adee x

me and Kels x

Last but not least, my mommy and daddy and my mommys best mate, brought me a kitty! After nagging and nagging for so so long, my mom and dad finally gave it, which i never thought would happen. My dad hates cats, so him giving in came a complete shock to me! We got her Saturday and she truly is my little bundle of happiness, I love and adore her so much, she's so beautiful and tiny! Everybody meet Princess ( I wanted to name her a Disney character, but none suited her and she thinks she's a little Princess, the little madam)

If you have made it this far you deserve a pat on the back, because this was a long ass blog post, which probably bored the living day lights out of you! But Thank you if you made it this far!
I just want to say again, Thank you everyone for the support, it really means so much! Love you all!
Till next time...

moods and 1 Year on the Transplant list

Wow, I cant believe I have now been on list a whole year, it has gone so scarily fast and still doesn't feel real at all. This post isn't going to be the happiest, so If you don't want to hear me 'moan' then i give you permission to leave.

When you go on the transplant list, one of the most important things they want you to do is to stay positive, and what they don't tell you is how hard it is to actually stay positive. Nobody really knows, except immediate family and like two friends, but two years ago I was diagnosed with quite bad depression and unfortunately its still on going. Wow, I cant believe i've just wrote that, I still may take it out yet. Its still something I don't want to come to terms with, or actually admit because actually, I'm quite embarrassed by the fact. People always say to me, that i'm brave and that its amazing I don't let it all get to me, when actually they couldn't be more wrong. I know with my illness, I shouldn't take my life for granted and I should live life to the full because I never know whats going to happen to me, but what do you do when actually all you want to do is stay in bed and hide away from the world. Don't get me wrong, not every day is like that, some days I think 'fuck it, i'ma live life and have fun' unfortunately, the days where i want to hide in a dark room and sleep away everything come more often. 

So while I feel like this, do I deserve to get a transplant? There are other CFers out there, that live life to the full everyday, who deserve this second chance of life and will make it count. I want to make it count, but all my motivation has been taken from me and I hate it. I miss the days where I could just go out and do whatever and not lug a oxygen bottle around, or have to say no to something because I don't feel well, because its all a cycle, i need to do things to get me out of this rut, but then I feel like I cant do them because I feel so shitty, or I think if I do, do that, I will feel shitty. 

I know these days should go once I've had my transplant, but what happens if they don't, what happens if they stay, I've wasted my second chance.

I'm sorry this post has been so dark If you've actually read it and I promise my next post will be happier.  Thank you to everyone that has supported me, I love you all. 

Happy one year on the transplant list.