Sunday, 22 November 2015

First nights out out post tx!!

Had the best weekend! 
So Thursday got my nails done and hair extensions put in too give me a bit of thickness as my hair is so thin! I had this pre transplant so I don't actually think it's because of the drugs yet, God help me when it does, il have no hair left on my head haha! 

Friday got my lashes done and in the afternoon I was asked to do an interview for eagle radio, local radio station in Guildford about organ donation! I get so nervous doing stuff like this, and I haven't actually heard the recording yet, thankfully it wasn't live but I think I went on a bit and spoke rubbish! We will see! 
Then later that evening got myself all dressed up for my bestie and her twins birthday!

 We arranged to go to Richmond theatre to watch a burlesque show! 
Lots of boobs and nipple tassels and feather bowers which I mistakenly called feather dusters...not so sexy!! 

Haha we had a right laugh and it's made me want to get on eBay and order some sparkle nipple tassels, mentioned it back in the summer when I spent most of the time with my boobs out, maybe il do it for my next echo at Harefield! Spice it up a bit Hahahaha 

I woke up hanging Saturday morning! Not going to lie, I didn't keep to the "1 unit" of alcohol...come on now that is so unrealistic, I'm a Somerville after all! 

So Saturday was spent hanging feeling sorry for myself, felt like I'd been punched in the head! Plus my lashes had irritated my eyes and they were all blood shot, I looked a state! Lee was working so mum came to rescue me and was my little cleaning fairy as the house was a mess where I had been getting ready and I had my friends holly and Natalie staying over that night to do it all again as we meeting more of my friends for a night out in Guildford!! 

I can't tell you how many hours I spent looking at the photos in my hospital room after my transplant knowing these days would come that once I got over the first few months I could be out enjoying myself and life again, reliving my youth which I had been robbed of thanks to my shitty lungs! Haha I just wanted to fast forward the months and here I am now doing it all and it feels fantastic!! 
The saying "loving life" is literally what I am doing right now! Haha

So it's safe to say I was an absolute mess Saturday! Holly Natalie and I had a few pre drinks at mine first

Then we went to beccas for more pre drinks and I made everyone drunk these cheapo shots! Haha 

We then got a taxi to Guildford! Was good fun! We got a nice little table at bar thirteen, my little sister Hannah met us there with her friend too, first night out with my baby sister!! Well she's 19 so not really a baby! 

Apprantly when I got home I decided to eat everything in sight! Like a crazy lady, I also manage to forget about 3 times that I had cooked and eaten onion rings as I kept putting on the oven gloves and opening the oven looking for them! Even though the oven was off! What a weirdo! I have no recollection of this happening or even remember getting home! Drunk farrrrr too much, but I woke up this morning with skips in my bed that I had stolen from Natalie after she had left them in the bathroom haha 

So I have clinic tomorrow and hoping everything will be good haha I think I may keep quiet about how mad I went over the weekend! Just keep to the 1 unit of alcohol rule hahaha 
I know my lungs have had a good bit of exercising from walking in these heels and shouting and singing so much! Haha
Also I have to see the ENT people about my voice, still not back to normal, so high pitched although being hungover actually makes me sound more normal! Haha somehow I don't think they will advise to get smashed everyday to sound better haha so I think I'm having a camera down my nose and throat to see the vocal cords see what going on! 
Also Im meant to be seeing my surgeon Aron too if he's free, about my swelling and narrowing vein as I'm still getting a lot of pressure and vein sticks out now and then, I can't lean over to put my shoes on or clean the bath for example as my head hurts so much feels like it's going to pop! 
So see what happens! 
I've finally written my letter to my donor, 3 pages long but I'm really happy with it! I really hope my donors family want to receive the letter and ESP before Xmas but I won't be too gutted if they choose not to! It's not about me now it's about them and what and how they need to deal with it! 

Mucho loveo 

Thursday, 19 November 2015

Reflection- the anxiety and panics

So today is 3 months since my life was saved!
The last few weeks I have spoken a lot with my mum and others about this summer. I'm still learning about my journey through other people and often get random flashbacks from differcult times that I think naturally your brain makes you forget. Like woman who go through labour, they tend to forget months or years later how awful it was compared to how they coped and felt at the time! 

I'm often told that it may hit me soon as I am coping amazingly emotionally compared to others who have had a transplant. I've always been a very positive person to be honest though and when I get times where I feel low, or struggle I tend to voice them to those closest to me and it's my way of dealing with the problem, and getting over it, I process it all and then I feel so much better! 
But I have to say this didn't happen this summer. 
There were days before I got my transplant where I would just lay in bed on my bipap, staring at the wall in my hospital room, life was so differcult I didn't even have the energy to think anymore, I was numb from everything and I can honestly say I've never experienced "depression" and I've always been very skeptical about how easily people use that as an excuse for feeling a bit down or having a rough day, but in all my life I can honestly say if that was even a tiny bit of what it feels like to be depressed, I feel for people who struggle each day with it because it's a dark place to get into! 

I also became very anxious and suffered a lot with panic attacks, another thing I never really had a problem with. I use to get my self in mini panic attacks if I would walk up my stairs, I would do it so quick to get it over and done with but after my heart would go crazy and my sats would drop and I couldn't get any air into my tiny barely working lungs, and would feel panicked, but I would always be able to get a grip of the situation and calm everything down quickly. 

Where as in hospital the weeks leading up to my call I was out of control. ESP if for any reason I would have to take my bipap off my face to eat or drink or take my tablets. I remember the psychologist Melissa saying I should start some tablets to help, but stubborn me refused as I didn't want to feel out of control and not me! You hear so many stories of certain tablets making you lifeless and have no emotion at all. I didn't want to not be in control of my emotions. ESP at this time of my life, I needed to be thinking straight and stay focused, focus on getting that call and keeping myself alive! 

However post transplant a week or so after being back on rowan ward and dealing with the struggles of recovery I needed help! I was waking up in the middle of the night panicking I couldn't breathe and needed oxygen, even though my sats would be 97 and I was totally fine! Other nights I would wake up having nightmares or fast dreams or people chasing me and I'd wake up in such a panic, I thought my heart would explode I couldn't calm myself. 
Every time I closed my eyes and drifted off I would just wake up in a mess. Another night I woke up breathing so fast I didn't think I could breathe properly and buzzed the nurse to turn oxygen up and get me a Ventolin neb because I was convinced my lungs weren't working. I was totally fine but my head was still in old cf lung mode and hadn't caught up with everything. It's the trauma from such a big operation too, these are the things no1 warns you about, yet so so common after speaking to others who have gone through the same thing! 
I gave in to the tablets, I started 10mg of citalopram and I can honestly say it was the best decision I have ever made!! 
I was told it would take a few weeks to kick in, and to be honest I wasn't expecting m much and was ready to just feel emotionless but calmer, but the complete opposite happened! 
I felt like George again! I was getting so down about being stuck in bed with all my tummy problems too, I was thinking the worse, I was convincing myself my new lungs wouldn't work and I physically couldn't do anything because I was so weak I couldn't stand on my own two feet, I couldn't barely sit up on my own without the bed helping me. All of the things that would normally be such simple easy tasks had been taken away from me. I was so weak I was a Skelton and I was mentally beaten. That's why I kept off social media for so long, I could t face people and everyone had built me up to be this big strong "inspirational" person who never let things get to me or moan. Yet I felt like that George had become lost in all this misery of recovery! 

But once I started the tablets, I had my strength mentally back, I had the fight, when the tummy situation even slightly improved so did everything else. I got up on my own two feet (very wobbly) but I did and it just got better and better. I got back on Twitter and Facebook. I started watching tv again. The panics of waking up in he night stopped, the nightmares stopped, I completely broke away from my oxygen. And everything just felt right! I started to embrace the fact I had new lungs and life was starting to get good! 

I think when we have a transplant we want to be this big strong persona who can get through it all and doesn't need help! But this isn't something little, we haven't just had something minor. We had an organ taken out of our body and replace by another one! Mentally that is going to fuck us up! And that's fine, it's nothing to be ashamed of and its not something we should feel disappointed or beaten down by because it's all part of the process. I get that now and once I accepted that I felt stronger too. We are also on steroids and emotionally that makes you slight depressed so having these tablets kinda stop the steroids from making you feel down. Maybe not for everyone but certainly has for me! 

I'm not ashamed of being on these tablets, you have to be strong mentally to get through this! And they make me feel like George on a happy day so that's a good thing for me! I'm happy and I know if I needed to stop them I would be more than happy too. But right now I feel this is all right and going well. Don't fix what isn't broken!! 

Anyway that's my little reflection and thoughts on that 

Mucho loveo 

Sprog xxx

Saturday, 14 November 2015

Busy bee!

Yoooo mofos!! 

So waking up to this miserable Saturday morning with the news covered with hatred in the world over the Paris attacks, after the scumbags did what they did! 
I woke up in a massive sneezing fit, and freaked out after coughing up some nasty green stuff! 
I'm not a worrier, I'm so chilled about stuff majority of the time but this sent me into a bit of a panic. I've spent my life coughing up lovely green bits from bug ridden, ruined CF lungs so I do feel highly dramatic when I panicked over the colour and quantity of this... But since transplant and being home this has only happened twice and within a few days! 
It's so unusually now to cough let alone cough and be productive! 
So there's me, that's it life is over I've got an infection, which is like OMG rejection that's it I'm dead!!.......
 And breathe...and get a grip a few seconds later I'm back to normal, less dramatic and calmer George mode!!

My temperature is fine only 36, my lung function is stable, I have stopped sneezing and I feel absolutely fine!! 
Obviously I have to be careful, I'm still a newbie to all this, but with all my figures good and it being a weekend there is no point in rushing around panicking like a loon! 
So I'm going to sit tight, wait for Monday contact them again and prob end up going to  have some bloods done to check everything! Obviously if I start feeling unwell or things change I won't be taking any chances- I'm in this for the long run!! 

So on some brighter news my cousin gave blood the other day!

 Very proud little cousin I was!! With all the transplant stuff and getting people to sign up to the register and be organ donors, it's very easy to forget how important giving blood really is and something you can do now to help people like myself and many thousands who need blood daily! 
For example earlier this year, my perfectly healthy sister, went to a&e after feeling really unwell and ended up having 4 blood transfusions!! So it really can happen to anyone and you might be in a position one day when you need it yourself!! 

So if you eligible to donate please please do go to your local blood bank!! If I could I 100% would!! 

Was at Harefield last week, all numbers back to normal. Tac was a teeny bit on low side so on 6mg twice a day now. All other drugs started back to normal! 
We had lunch with my auntie and cousins little one too which was lovely! They have some good pubs around her way!! 
Mums great photo skills haha

My gorgeous, annoying hubby Lee turned the big 30 last weekend! He's like and old man, didn't want to do anything, didn't want to go out for drinks, and the bastard didn't even want to go to watch fireworks! Haha so his actually birthday was on the Sunday. 
He's so fussy with food and trying new places Incase he doesn't like it so i arranged with a few friends to take him to good old Nandos on the Saturday evening as he was working the day, Then we enjoyed creams after! 

It was nice to see them too!! I'm a fatty now as you can see, the steroid cheeks are growing!! 

Really fun evening...for the bits I could hear!! The famous smile knod and agree at the right times, although lee likes to announce that I haven't got a fucking clue was going on! Haha 

So the next day, the birthday day, I had booked clay shooting for lee and I to do together! Lee and the boys had been terrorising me the night before saying I would take off after the gun goes off, so I was feeling a little apprehensive about it all! I was so excited at the same time and lee loves shooting, and now I'm well it nice to do something as a couple together! 
We had a wicked teacher called Trevor!

Was so much fun! And I did manage to hit some clays, lee smashed it though!! I had to let him win it was his birthday ;) 

I was such a good wifey too I made him a nice chocolate cake 

The in the evening we went to see Jimmy Carr at Woking theatre, was good fun, well I didn't hear most of ithaha but lee was laughing and I joined in to look like I wasn't being miserable! Bloody deaf fuck I am! Hahaha 
There was actually loads of people there, we just took a selfie before they all got to there seats! 

This week I've felt like a right little busy bee! Been planning birthday night for my friend, also been organising some organ donations stands at local Xmas markets etc that my friend and I will be doing on the 27th/28th Nov! 
Very exciting been picking up posters and stands and trying to get more bits sent out! 
I love how there pink! 
Also lee was great, he took some signing up leaflets into work and managed to get 7 people signed up to the register! :) happy wifey! 

Also had my first Chinese since leaving Harefield with my lovely friend Caroline, as soon as I picked up and she got in the car she was like omg you look so well and had a big massive smile on her face, was so great to see her and have a big catch up and tell her about it all, I also showed her the draft of my letter for my donor family and she burst into tears bless her, I looked like I was being horrible to her or something haha and then I visited her mum after and she burst into tears after seeing me looks so well, and they were saying how my breathing is so different, and that I use to make this funny breathing noise but not anymore and how healthy I look now! 

I hate to see people upset, but it still shocks me to hear how people felt whilst I was waiting and how unwell I got, it just doesn't sink into me! 
Anyways was so lovely to see them and got wait to spend more healthy times with her now I'm not luging oxygen around and fun nights out! 

My tummy problems are getting better, I'm not blocked anymore just had an enlarged stomach, stopped the gastrografin! And just trying to see what works best for me! I still get massively bloated! I've upped my domperidone to 20mg 3 times a day now! So just going to see what happens! 

Need to get exercising more, and I'm going to cut back on how much food I've been eating! Ha spent my life being told I need to put on weight! Now that's not even an issue but for myself I don't want to be a roley poley!! Haha 
Me and mason having a slob day and you can see Chubby cheeks! 

So yesterday I enjoyed a long awaited lunch with two of my favourite girls! 
We all have CF and all had Double lung transplants! Veronica on the left was 9months yesterday, me almost 3 and Sharon 2 years and 3 months!! 
So nice to have friends who just get it, know exactly what your going through, who also look out for you and guide you in the right path! The dos and donts! These two are like big sisters to me!! 

Mucho loveo 

Sprog xx