Tuesday, 19 June 2018

CF Week 2018- Me and Cf

So CF week (Cystic Fibrosis) started today (Monday 18th June) and I feel the need to talk about it on my blog as this after all is part of my life and what my blog started off about! 


So cf in a nutshell... 
Cystic fibrosis (CF) is one of the UK's most common life-threatening inherited diseases. Cystic fibrosis is caused by a defective gene. As a result, the internal organs, especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food.
Yeah I did copy and paste that ha ha 

So how had this been for me! Well I think it’s safe to say I have covered it in my blog over the past 6 years! 
However if you are new to my blog or new to this cf stuff then let me try make this brief! 

I was diagnosed at the age of 18 months, not because I only just started getting  stymptons then, nope! Unfortunately back in 1990/1991 cf wasn’t on the radar and drs never tested at birth like they do these days! 

Nope I spent  months and months in and out of a&e and children’s wards being admitted for asthma, chest infections and an over protective mother! 

So thanks to a lovely nurse in a&e one day she asked my mum if there was any cf in the family, Mum had never heard of it, so off she went to library (yes no internet or google then) and read a book, she came back to the hospital licked the back of my hand which was mega salty and that’s it she knew I had cf. 

So after they done all the tests it came back positive for it and my mum was releaved, I could now get the right treatment to treat me! 

I did and I started to improve slowly! 

But for me cf hasn’t been a walk in the park, I’ve spent my whole life in and out of hospital every few months with repeated Chest infections! I mean getting to my age is a massive achievement! 

I was treated as normal as possible and it didn’t stop me having sleep overs or going to parties I wanted to be like every other child my age just with extra treatment to do, and hospitals stays were hard when I was young as my best friend one minute would have a new best friend by the time I had a two week admission in Hospital and came back to school. But that’s life and it made me while I am today, positive strong and outgoing person! 

Skip to my 20s that’s when the shit hit the fan shall we say! 

My lung collapsed two weeks before my 21sr birthday so that was my 21st partying hard in Hospital in london! My friends were great and all came up to Chelsea to celebrate with me! 

Then that’s when I was told I needed to go on the transplant list as I was left with little lung function and on constant oxygen and wheelchair bound! 

So was listed in the Nov 2011 waited for 8 months then Kalydeco came along and changed my life! 

And within 3 weeks I took myself off the list. 

Got married had a few holidays still needing oxygen but using my wheelchair a lot less! 

Then September 2014 came and the lungs just couldn’t cope anymore, they were giving up and so back on the list I went. 

Then loads of crap happened with my veins and some clots and a stent falling into my heart after being inserted into my vena cava vein. So then I became an emergency for Transplant and was stuck in Harefield with weeks to live. 

4 calls later and 11 months listed and I got my magical lungs August 2015 

Now life is different! And there is no cf in my lungs as they are not mine! Which is amazing! 

But transplants aren’t a cure and you swap one set of problems for a whole new set! But I won’t bore you with that tonight! 

Let’s just say i am Incredibly grateful to my donor Gill and her amazing family for agreeing to donate her organs and her lungs to me! She saved 5 people and I was the youngest! Just when I thought there was no more fight left she became my angel! 

So I’m dedicated this to Gill, my absolute angel who choose to leave a selfless legacy to me and the other recipients! 








Wednesday, 13 June 2018

Herbalife starts

So I’m buzzing for this! 
Yes I have jumped on the bandwagon but it’s working so fuck all of you judgemental people! 

Yes I’ve started using Herbalife to loose weight and feel better! And I feel very positive after my first 5 days! I’ve lost almost 1kg and I’ve had take away curry’s with all the nann bread and rice included with extra sauce. So almost 1kg is good and I’m happy with that! 




I’m so on it now though I need that thin sexy body back but with a few curves now to go with it! I’m trying to go to the gym more but feeling quite weak but still going! Trying to run but leg on one side fills with pressure not sure what that’s about but not giving up! 

So this Herbalife  is not only helping my weight but also my tummy issues to which have been a mess really since my transplant! But since having this no bloating and no bad tummy’s (unless I have a cheat day then I pay for it) 
So for this in the first week I’m so happy about it all, I just feel so good! 

Going to keep a record of it all and progress! Things needed to change and now is the time to kick my arse into gear! 

So I have a shake in the morning which is 300mls of cold water, 4 ice cubes then two scoops of vanilla protein drink mix on first, then 2 scoops of tropical flavour formula 1 meal replacement. 
Blend all together in my ninja, and then pour into a glass then that’s breakfast done. 

I do the same for lunch. Depending if I’m in or out or I can take it with me. 

And then dinner il have chicken and broccoli sometimes with cous cous, rice or a few mini potatoes. 

Then I drink the aloe Vera drink throughout the day with lots of water to keep me hydrated as that’s my only fluids I have now as no fizzy drinks or juices. 

I also have a herbal tea But not a tea person but you can have it cold not tried it like that yet! 

And today I have brought oat apple fibre powder to mix either into my shakes or on its own with water to help cut out the fat I might eat. 

It’s all so exciting and love it! And I can’t wait to see how I look and feel in a few months time if I’m this happy after 5 days! 


Job hunting has been less successful! Got knocked down by not getting the last job at the gp but onwards and upwards and more applying tonight! 

That’s all update with more in a week or so! Wish me good luck oh and ascot next week whoop x

Tuesday, 5 June 2018

Job hunting and failing!

So I’ve been on the hunt for a “proper job” as in workin more than one day a week! 
It’s bloody hard! I’ve had a few interviews now and always been told I’m “liked” but don’t make the cut! It’s literally so hard to stay bloody positive when your not getting anywhere with it! 

I have another interview tomorrow so again fingers crossed, I’ve got not experience, no qualifications no wonder no1 wants me! 
I mean I have a personality- I think! But that only gets you so far aye! 

I’m not signing on for job seekers or anything like that I’m just rolling with it! And going with the flow! 

This is the problem with having cf well it has been for me. I’ve grown up not bothered about education because I just wanted to make the most of life and can honestly say I didn’t think I’d be here at this age. 

Then you fight to get a transplant so sick basically preparing to die and the worse, then you get a transplant and things are better but then your like fuck! I didn’t plan this far ahead what do I do with my life now!? 

I love social media, I love my blog (even though I neglect these days) But that whole online selling stuff is not for me! 

Just need to find myself and what I wanna do and what I was put on this planet to do! What is my purpose!? 

Ohhh deep talk! I won’t scare you too much! 

On another note... STILL no news from chador croaa or st Marys about my op date! And quite frankly I don’t want it now till after my birthday as I wanna be a fatty and eat lots on holiday and my birthday meal out! 

So yeah that’s all that’s going on in my life at the mo. 

Anyone reading this wanna give me a job I’d much appreciate it! 

Thanks love to ya all 

Sprog 

Friday, 11 May 2018

Happy George almost..

Yes that’s right you read it properly, happy george is back and it’s taken a while and more drugs but I feel almost like myself lately! Which is happy, positive and full of life! 




So my last blog was about my pre assessment the fundo op- still waiting for a date so no change there! 

So one thing which set me back a bit was about 4 weeks ago after having the best hen weekend away with new friends, I found out that I would no longer be getting DLA/Pip - which means no more Car for me and my £300 a month. 

I’ve had this since I was 9 years old and although I know my life is better now and I’ve had a transplant, you get so use to having the money and Car it’s a shock when it is taken from you! 

So now it’s car shopping for me! Bit of a snob I’m
Use to brand new cars so going to have to enter the real world and get a second hand Car! Also now I’m going to have to work! Which worry’s me a bit as I get so exhausted still post transplant, but on the flip side it should help with my depression and meeting new people etc (even though the people I already know are amazing enough) 

I want to go into reception Work, well that’s what I have been applying for! I’d love to work in the nhs (I know mad) but I’m so use to that environment it’s where I feel my strongest. 

Today I had a job interview with a dentist, should hear back next week but I’m not getting my hopes up at all, the hours are perfect though!  So fingers crossed! 

I also start a Saturday job in Putney at an estate agents tomorrow only 10-2 great hours with good pay! Thanks to my wonderful friend Sophie’s hubby for getting that for me! But nervous tonight about it but fuck it let’s see what happens and just going to enjoy every moment! 

Then after that tomorrow it’s my friend Sophie’s belated 30th so time to get boozey and celebrate! And my lovely friend Simon has escaped Harefield  Hospital after a really tough emotional 5 weeks! So cannot wait to celebrate that! 

Still fat if your wondering if I’ve lost weight recently...nope and given up on all diets, I just fucking love food! Skinny old me is hidden in this chubby body trying to reappear....then I see doughnuts and she’s a gonna haha 




Also so proud of my little sister passing her driving test today! Although I think il be avoiding her driving route for my own safety!! 

Also to add, after looking through some emails today I found out that I had been listed and I quote  

I would like to personally congratulate you as your blog The Sprog's Life has been selected by our panelist as one of the Top 75 Cystic Fibrosis Blogs on the web.” 



I came 25th out of 75 which I don’t think was too bad going! 
So I will be trying to add the little badge to my blog once I get onto a computer! 

And lastly will a deep heart I have decided to step away from the charity for a while, as much as I love my role in the charity, it’s time for a break, I haven’t had the heart to put in the time and effort for what is needed at the moment and need time to find myself and concentrate will what I need to do now, it was putting stress on me I didn’t need, I do hope to return In the future when I am in a better place, it doesn’t mean I won’t support the charity and other organisations and of course organ donation, it’s just time to look after me. They will always be my passion and will promote anyway I can still. 
And wanted to say thank to all the team pre post and present for helping me learn so much, meeting some fantastic, inspirational people and given me the opportunity to do things I’d never been able to before. 




Thanks all from me and blogging hopefully not for too long! 

Love to all 

Tuesday, 27 March 2018

Pre op

So today I visited Charing Cross Hospital ob my own for my ore op assessment for the fundo op I’m due to have soon. 
Was a bit confused as to why I was attending Charing Cross as all of it has been done at st Marys before but I believe the Hospital are partners so all the same team. 

It took FOREVER! so not use to how slow it all was! And I had to go through every inch of details with the nurse about my health, life, lungs etc she didn’t believe I knew all my drugs because I struggled to spell a few of them, even though she was googling the names. 

I just let her do her think, to be honest I didn’t have the energy to care or make a fuss over how she done anything or what she wrote to be fair. 

Then after about an hour talking to her in detail about my health history (of what I know) she then gave me the forms for bloods and and ecg which again I waited about 30/40 mins for each one. Everything takes so long in general hospitals compared to specialist ones! 

Or maybe I was just too tired today and wanted to get home! She then wanted me to see the Anaesthetist because my lung function is low (70%) not really low! But I remember arranged for a another day next week as had to get back for the dogs as it was already 1:30pm! Charing Cross isn’t that far from Putney Bridge so it’s a much easier journey than st Marys. 

So if I end up having it at Charing Cross I won’t complain! To be honest I would rather have it all down at Frimley or Harefield because they’re much nicer hospitals but that’s out of my control! 

I didn’t really get that much information today, the usual don’t eat 6 hours before the op, and I might be on for a couple of days after but didn’t say where I would have it, nor did she give me a date! 

Felt a bit of a pointless appointment to be honest but that’s how it’s done so just have to go with the flow. She’s given me a number to call to try book the op, I just want it over and done with now, it’s gna be so hard with the diet after, liquid diet and soups I just want it get going so it’s over before my holidays in the summer! 

I’m on the urgent list to it shouldn’t be a long wait and everything else has been fast tracked so been quite lucky shouldn’t complain. 

Will update more when I have news or the procedure is done! 

Xx

Tuesday, 27 February 2018

Back

I can’t believe I haven’t blogged since September last year! 

I use to update this blog weekly how life changes when you have a transplant! 

I always said I would be open and honest in my blogs. 

But I’m suffering with depression badly these days, I think a lot of it is due to my weight and my body imagine which may sound vein but it can effect woman of all ages! I’ve spent my life being a size 2/4/6 and now I’m 8/10/12 it’s not normal for me and yes I hate how I look. 

I constantly get comments like of your healthy now and you’d rather be like this than dead! These comments don’t help me, of course I don’t want to be dead but I want to be skinnier and have a good ass! Not rolls on my tummy saggy tits and far ass with no shape (yes my boobs have sagged) 

My whole life I have been sitting at 38kg which I know is low but that’s what I was now I still around 58kg! That’s 20kg more!t bmi is over 25 now, it’s crazy and I can’t stop eating! 

I’ve gone on about this in my blog before but it’s something I’m so unhappy about yet I’m the only one who can do anything about it, I’ve joined slimming world but I just can’t keep my head focused with it! 

I’ve tried cutting out carbs and sugar but I’m so addicted to redbull I can’t not have it! I tried two weeks without it and did so well lost 4lbs but now I’m
More addicted than ever! 

Also in more medical side of my life I’m
Currently waiting to have a fundoplication operation which basically they wrap the top of my stomach around my Oesophagus to stop any reflux coming back up and going into my lungs. 





So having this surgery will help stop reflux and damage my new lungs but also loose weight, I have to be on a strict diet post op, first week or two is just clear fluids! So I’m bound to loose a bit of weight and no redbull or fizzy drinks so this could help with my addiction! I have to have it either way so will see what happens. 

So to my boobs 
My lovely perking breast implants well due to steroids they are now lower and Alot lower they have dropped as I said thanks to steroids! I need an uplift which I can’t afford at the moment! I’m so upset with them, they are better than they were before but no way near how I want them! But can’t have it all and should be thankful for being able to have one in the beginning. Lee thinks there fine and others but when your not happy yourself that’s all that matters 


There not this bad but how I imagine them 

Tuesday, 5 September 2017

Organ Donation Week 2017


So organ donation week started yesterday Monday the 4th September! 
As many of you who follow my blog know I am a trustee for the charity Live Life Give Life! So not only is the week special to me for my own personal reasons but our charity do a lot to be involved! We have  launched our new campaign "I can't live without you" which is based around the story of Paige who talks about her sister kayleigh who sadly died in a skiing accident and saved 3 people's lives! 

To find out more please visit www.livelifegivelife.org.uk 
To see the full video and the campaign! 

So yesterday I started organ donation week bright and early for a interview with BBC Surrey Radio at their studio in Guildford at 7am I feel the interview went well and hope it encouraged people to sign up and speak up to their families and loved ones about their wishes 

This year the theme is about talking to your next of kin! Last year 49% of families refused to donate although their loved ones where signed up because they didn't know what they wanted because they hadn't had the conversation! Imagine the lives they could have saved if only they had had that conversation before the traffic time came. 





Friday, 12 May 2017

Mental health 

So I've never been one to to talk about mental health, desperation or anything of that sort, before my transplant I didn't believe in depression as much, I thought it was more for people to overly use for having a bad day/week/month. 

But since my transplant a lot has changed, for me I understand it more! Leading up to my transplant I was fighting so hard to stay strong, alive and with it I refused all drugs that would "help" my mental state because I knew (thought) I could do it all on my own. 


But Suddenly you have a transplant and all of that is taken away from you! Like you have gone! Being strong isn't about staying alive anymore, it's about fighting the constant battle in your head, for me this is a life I have never known of nor do I still sometimes accept! But I've been talking about it more recently and it's become to my attention that yes I do feel a slight depression. Weather it is drugs related as most of my drugs side affects are depression, anxiety and becoming a fatty! Ha 


I've been on a drug called citalopram since a week post transplant due to panic attacks and anxiety through the roof! And my god did it help so I've been too afraid to come off, I have since upped my dose, and wonder if because of how low I have felt recently weather I need to talk to the Drs about upping it again although this is something I wouldn't want to jump too! 


It is also known now the more people are talking about it the better I feel, I am not alone. Everyone is assumed to have a transplant and your life be amazing again! Unfortunately that's what we all like to portray because in a glimpse we do! We have great lungs when willing! Freedom from hospitals a little more than before, but they are so right, your swapping one Sent of problems for another and depression is a big part of this! 

Yet we are made to feel guilty for talking about this now! And I feel we need more help, more support and the stigma to go for people to be content post transplant! There is a lot they don't prepare you for! 


Separation from relying on so many people around you was one of my first problems, although I jumped at the chance of people independent at first, it hits you after! 


Constantly feeling weak! Exhausted and fatigued! That doesn't go away! And feels a massive strain on you. 


Rejection worries, they are constantly on your mind despite what people do or say! I have seen too many friends slip away so quickly from it! 


And the guilt, two types, the one that you feel for your donor and their family, and then the one where your other friends or people you know who are waiting or don't get the chance! You shouldn't feel it but you do, and it can't be helped!


So as we end mental health awareness week I felt I wanted to share some hidden thoughts that do go through my mind and what I feel like I am constantly fighting against, some days I don't even want to get out of bed or wash, I feel like there is no point, but I've realised that it's ok to have day like this, as long as I fight back the next! Life is still and constant fight, just now with my feelings and emotions in my head! 


Wednesday, 3 May 2017

Thinking

As we all panic tonight as whatsapp is down, it's given me the time to give my head some thinking space, I use to always blog at night in bed when my lungs were so weak I couldn't rest to sleep so writing was my escape!

I often think back to those years living life, well not living but surviving, that's the best way to put it, I was always one to make out or make myself think I was living my life as best I can and I did well most of the time, but what I was really doing was surviving!

Recently I've had a cough, you'll prob laugh reading this, but post transplant this scares me, it's not a touch on life before but it's been chesty and productive and it scares me, all my results are good, bloods, lung function and x ray. Yet I still have this on going annoying chesty cough!

I haven't had this since transplant, I barely cough these days only out of old habit, so it worries me, the first thing I think of is are they missing something, could it be rejection, and I try to tell myself to get a grip and stop being so dramatic but I can't help it, I feel like life is on precious time for me now, even more so than before which makes no sense! I think because these aren't my lungs I have no control over them as I use to with my deadly old ones!

My head is not rational at all at the moment, im constantly sleeping which doctors don't know why that is either, i feel so tired and fatigued all the time, yet thankfully everything is perfect results wise! But then why do I still feel something is not right!?
I try my best to not make a fuss unless it's something I know is a big deal but I'm stuck with this one, do I trust that the results are fine and listen to the Drs or do I continue to bag them and go with my gut instinct that there is something not 100%

I'm rambling on but that's tonight's thoughts oh also I've been diagnosed with osteoporosis and recently had an infusion to help with that! Just another thing to add to my list! :)

Tuesday, 18 April 2017

New boobs 

I feel the need to blog as it has been forever and I'm hoping by sharing this part of my journey/life that people will understand and won't judge me on vanity! To be honest even if you do, I done what I did for me and to make me happy, because let's face it that's the most important thing in life is to be happy! 


I also want to help others in my situation! 


So 4 weeks ago I underwent breast augmentation! 


Now automatically people will think, so shallow, wants to get her boobs out show off etc etc! And don't get me wrong I love them and love showing them off now!

But to get to this point I spent the last 15 months being so unhappy with my boobs! 


Now I'm not one to blow my own trumpet but before my transplant I had great boobs! Perky! Great size for my little frame! In the right position! It was one of the things I was proud of! 


But not so much post transplant. I'm not sure what happened! The most important thing was my life was saved of course, but they were left a completely different shape, size, position most importantly! And quite frankly once I recovered,I was devastated by it! I felt so unattractive, my little perky perfect boobs had turned in to old granny's boobs which had somehow had an argument with each other and majorly gone south!


Now there's lots of issues post transplant that I feel and find we cannot openly express or people feel they can't talk about them without being judged! I don't give two fucks, it's life these are real issues and yes they bother us woman! We have dodgy boobs and get fat after tx! 

The only good thing body wise is I have a bum now but even that needs to be worked on or I get something called cellulite which I've managed to escape 25 years of my life until transplant. 


People reading this must think what a brat, you have new lungs you can breathe be thankful, and my god! I wouldn't change any of this for my life before because yes I can breathe I'm alive and my life is incredible, but why be penalised for feeling like this! If I was a normal woman with issues no1 would think twice! But because I've had a transplant I shouldn't be able to complain and the comments are always "just be thankful your alive" but what be alive and feel miserable...NO! 


so I'm proud to say yes I got my boobs done, and yeah I will show them off because I can breathe and I can feel or try feel sexy again! 


And I want to help others. Just because you've had this second chance it's doesn't mean you shouldn't feel bad about complaining, also I found it so hard to find a surgeon willing to perform the op on me! But after a few consultations, I found a man! Well he found me after I put a plea out on a plastic surgeons forum! And I had it done at Spire Portsmouth Hospital! 

Thanks to harefield both my consultants were so supportive and gave them all the information they needed and the hospital was great! 


So if anyone feels the same and is having the same issue don't hesitate to contact me! 


The only thing was I did have to pay! I could have tried to get it done on Nhs but you don't know what it will be like and it's not easy and I'd spent so long feeling like this I just wanted them done quickly! 


So the surgery itself was easy! I mean I've had a transplant so a few silicone boobs whacked inside me is nothing! And it really was, I came down after the op smiling!


So the plan was, to have teardrop implants to make them look natural, have a size 415cc however, as it's me nothing goes to plan in surgery! 


I was told the day after, during surgery where he would make pockets to fill the implants into, I already had pockets from my transplant, so he had to make a decision to give me round implants a slightly bigger size to fill the space, also because of that I couldn't have the teardrops as more likely to turn!! (Wouldn't be a good look!) I was happy they made me feel better and anything was better than before! 


Anyways so I'm really happy now with them, just need to work on my weight and stop eating everything in sight and get back to the gym as since boob job I've been out but time to get my arse back into gear... literally!!


Here's so pre and post transplant pics! There still healing now but I think Ive gone from a 32C to a 32G 



Monday, 13 February 2017

Me And Donor Family Video....


So instead of writing a bg long blog ive just done a little video to sum it all up however I am going to add some photos f the lovely hotel we stayed in down in hatherleigh and some of the studios on tv!






So here's some pics! 


 
 
 
 
 



sarah and I at the NHSBt meeting for LLGL
    

 


 

 
       
Such beauts ha 😜