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 😜
 
 

Saturday, 21 January 2017

BBC2 TV and NHSBT meetings

This week started off being so busy and continues to into next week!

As I work for the charity Live Life Give Life we regularly get media requests come through to my fellow trustee and friend sarah as she is the PR & Media Trustee. She had a request from the BBC the other day to which I gave them a call on behalf of the charity. As I was spending the day doing LLGL work I was available to sort this out and see what was needed! We all are volunteers for the charity so everyone has their full-time jobs they have to deal with as well.

On the show, they were featuring an incredible lady called Tracey Jolliffe who had very generously donated one of kidneys to a total stranger and plans to donate part of her liver! Not only that but she has also signed up to be a stem cell donor, she regularly gives blood and over 80 pints and has donated her eggs 3 times!

Alongside this story they were looking for people to join the panel who had received an organ from a total stranger. I expressed how I was happy to help as it was such short notice for the next day and that my fellow advocate for the charity Andrew could attend as well!


So the plan started going ahead. We were back and forth in contact all day, it was on then off then on and then off, they wanted a living donor, which lungs fr obvious reasons cannot come from a living donor! Then they wanted egg donors, and blood donors. It was a bit unclear.

By the end of the day, and when I say the end im talking like 8pm that night they had decided to stick with myself and Andrew they couldn’t get anyone else in the time frame they had! Last resort haha

However I believed this would be a great opportunity for our charity to be promoted along with organ donation so I am fully behind it, That’s why I do the things I do!

 

Here is a few  pictures of me on the the Victoria Derbyshire Show BBC2! 

 

Myself and Advocate Andrew Whitby 

 

In the green room.

 

Yeah I was there ha 

 

 


 

 


52 mins in, Was only a short snippet and typically I couldn't hear well, was so quite in the studio and everyone spoke to softly! 

http://www.bbc.co.uk/iplayer/episode/b088sfzc/victoria-derbyshire-17012017



It was a great experience and loved seeing the background of what happens in a studio. 


So that was a great and uplifting to do. 


The I went to work for the afternoon. And after the show the BBC radio wanted someone from our charity to do some radio interviews for drive time which are fabulous advocate Carla proudly took the honour of doing and done an amazing job as usual, all our advocates and team are fantastic!

So that was Tuesday...


Then Wednesday myself and fellow Trustee Sarah had a brilliant and successful meeting with the NSHBT. We met in london off oxford street at a blond donor centre. 

 

Firstly I was fascinated by that as I have never been to one as I unfortunately cannot donate, I'm a taker in this situation! 

I just wanted to go up to everyone waiting to be called to give blood and thank them for being amazing! 

Anyone who donates anything in my eyes are wonderful amazing selfless people! And it shows that humanity are still great despite some flakey people haha. 

 

So once I got over my overwhelming moment of wanting to hug everyone we were Called up and met 3 wonderful lovely members of the team and we spent hours chatting together Sharing information, and hoping to work closely together with our charity! So it's been a very positive week for Live Life Give Life in that sense! 


Been a busy old week, My tummy constantly keeps playing up but my diet change has helped! Lots more to that, I have visited Frimley hospital recently to do tests and book future tests to check for lots of things one I had a blood test for was celiac disease a genetic blood test they can do I'm told, so hopefully I don't have that! 

And further tests are being booked and should happen within the next 6 months! Going to be a productive year for that stuff now I'm settled after transplants need to get all the little bits sorted or helped at least that were irrelevant before! 


I've lost 12 pounds whoop go me!! No carbs is helping and lots of gyming with my gym buddy tor!! Bring on the summer body hopefully! I do miss potato though!! 


My next blog will be all about this weekend and spending time with my donor family again! Sharing our story!