My Lung trasnplant anniversary

Yesterday was a simple day, I went for lunch with Stu, Mum, Nan and my sister, We raised a glass to my donor and talked about this time last year.

Me and Stu went and watched a film together.

Then at 8:45 we all gathered on sidmouth beach with lanterns, There were my two best Friends, Julie and Emily, My Mum and Nan, Stuarts Parents, Stu (obviously) and my niece and nephew (my sister couldn't make it due to looking after her youngest) We all sat on the pebbles and wrote a message of thanks to my donor, Mine was simple,

Thank you for the chance to breathe,
to live,
to love,
to spend this extra time with my Friends and family.

My donor knows how I feel I am sure, I feel forever grateful and words cannot describe how I feel about them. It endless.

I read out the letter from there mother, which some of my close family had had the chance to read while others hadn't, my nan was taken away with the depth and detail in the letter and said she could not imagine how brave that women was to write such a beautiful thing, my mother often describes her as an extremely understanding and intelligent women. I think they know how much this letter means to me, I cherish it and keep it in a special box with all my other transplant stuff, but that is the most important. Reading the letter out loud you think I would cry, but no theres something about it that is so soothing and comforting, its has so many happy moments that I can only smile and also laugh in parts. I know my donor had a brilliant sense of humour, I can feel it lifting of the pages with the details about them.

We all said what our messages were and then we played a couple of special songs.

Then the hilarity came, we tried to light the lanterns, and then when we did to let them float in to the sky, this ended up in us spread across the beach chasing our lanterns as they went across the ground and tried to make there way to the sea. There was lots of laughing and screaming when we would finally get one to take off, It wasn't as planned, but to me it was so much more, the comical genius of our situation I pretty sure if my donor was watching would have been in hysterics. We managed to set 3 lanterns out on the wind and over the sea, at which I sat back and just felt great happiness wash over me. Content.

I was also on the tv yesterday heres the link ITV westcountry

Hullucinations and ecmo

I thought today I would tell you about some of the hallucinations whilst on Ecmo. I have been thinking a lot about my time on there a year ago now. Things that were real seem unreal and things that weren't seem more real.

To me ECMO was not just a tube in my neck and groin, ventilation was not a tube in my mouth or neck. I was in a huge fish bowl, it was gel like water, the nurses and doctors were mermaids. They would come into my fish bowl and one day they told me I had to come out and when I did I couldn’t rest anymore, I had to wake and breathe. If I would still breathe I could still get a transplant. Suddenly I was dropped from the fish bowl and I had to breathe. This was when I was being taken off the sedation and the ventilator was taken out in real like. I remember trying to breath but feeling like I was drowning, like the water form the fish bowl had seeped into my lungs this gel like stuff and I was suffocating. But I carried on, drowning but trying to breath, panicking and the doctors saying in a serene and echoed voice just breath, breath and the voice's were getting higher and higher, in what sounded like a song.

Another hallucination, I remember lots and lots of blood, I was sat bolt up right and there was blood fighting out my tracki, everyone was panicking, saying if I carried on bleeding I would die soon, there was to much blood everywhere, so I was moved, other patients were just staring at me and I looked at the pleading them to stop it as if they could. This was just a hallucination, but to me I swear there was blood everywhere, but at no time did I bleed out that profusely, although there was blood filling my tracki.

I had so many more hallucinations after transplant it was hard to know if were real or not. What was real and what wasn't. Some times the real seemed more unreal and the hallucinations more plausible, despite there ludicrously. For a long time I didn't know what ECMO was until my family explained it wasn't a fish bowl. The vulnerability when you’re that sick and the weakness of your own mind, understanding the simplest of things if impossible. I remember my family telling me the news of the world had shut down and I couldn't understand why they were telling me this and what significance it had to me, Had they printed something bad about me and about transplant? Stupid I know.

After transplant, I couldn't bare to watch TV for a while, I just wanted to stare into space, but as soon as I did, I was watching the news the whole time, waiting to see if they would talk about a car accident, someone being knocked on he head and never waking. I Was waiting to find out about my Angel, desperate to fit all the pieces together, if what to me was a very confusing and broken story. I understood nothing of what had and was happening to me and I myself was a distant ghost of myself.

Tomorrow, was the day I received the gift of life, where I had to learn to relive, to breathe, to understand, to grow.

It wasn't the easiest of journeys, but now, now I have to say I would never have expected my life to be as amazing as it is.

I've also been thinking about my friends on the transplant list, will they get there calls? Its so hard being friends with other CFers, its the most amazing thing being able to connect with people who understand you but when you are watching them die Its so scary and hard. I have broken my heart over many friends who didn't make it, but I wouldn't stop being friends with such amazing people, there lives and friendships mean so much to me. I just pray that there calls come and we can stop this happening, needless death, because others just don't think about organ donation. My wish for this week, for everyone to just think about it, to make there decision, let your family know, whatever it may be. I hope others get this opportunity I was so lucky to be given.

www.lltgl.org.uk/nhsbt to sign up

National transplant week

Today is the start of national transplant week. This time last year, I was on ECMO, I had had my tracki fitted today as I was struggling badly, i was begging to come off of the machinery the fight just seemed to much finally I wanted to just die. Its also my friends birthday who passed away when I was 10 from an unsuccessful transplant, This is the day I think Debbie came to tell me to keep going, to give me hope and let me know I would be ok. I don't know if it was the medication, a hallucination but well someone was there, someone no one could see and for me I want to believe it was her. I'm so glad I held on, Life could not be any better.

My family were all wondering If I would make it, but there was another family and It was becoming clear there loved one wasn't. I'm thinking of them today. I know this is a significant day for them, in other reasons and I want them to know, I'm thinking about them every second of the day and of my Angel. My thanks to them is beyond measure.

I drew a picture of them the other day, I'm so proud of it, I feel Iv really caught them in the drawing, I was wondering whether to send them a copy. Its in my memory book of poems and drawings, some of my most personal stuff that not many get to see.



This week my plans, are ball organisation tomorrow, then Wednesday, the day I received my transplant my actual anniversary I will be going for meal with family, then in the evening we are going to sidmouth beach where we are letting off lanterns for my donor, were also playing a special song for them. My family have each bought a lantern to let off and I'm looking forward to showing my thanks.
Thursday and Friday will be organisation central for the ball and finally the grand finale of national transplant week My Ball The 2nd chance ball! So named after this blog.

Every day this week there will be a blog so please come back and have a read. On the week that my life was saved.

to sign up go to www.lltgl.org.uk/nhsbt

Me with my #passiton temp tattoe for national tx week x

Something on my mind (none transplant or CF related)

I feel so angry today, so hurt and wounded. This is going to be somewhat of a cryptic blog but it’s about my feeling from past events.

I feel angry, angry at the person who created this situation, who wounded my family. The deceit and damage it done, I wish we could all forget and move on. Its not something we dwell on but every now and then, the damage becomes apparent.

I want to scream at them, I wish I could hurt them so badly, in ways I guess people wouldn't think me capable. The destruction is devastating and something that I wonder if it will ever heal.

I’m ok, I can forget, I can escape, but I guess it wasn't me it mainly affected. But today it feels like the pain is piercing me through the heart again. As I was reminded of the hurt, when I realised someone else was still in pain over it all.

Sometimes wounds just don't heal; they close up and are ripped open ever now and then.
I don't know why I have reacted like this, the reminder of the pain was days ago and usually I’m very unaffected by them, cold and almost distant to the fact, its like I forgotten and it all happened to someone else, I guess maybe I thought things had changed and others had moved finally moved on. I just wish I could take there pain away but I can't and that’s the hardest thing.

Pinnacle

Pinnacle
11 days and counting to the ball, only 8 days to my one year transplant anniversary. I believe tomorrow would have been the day I was air lifted to harefield (days blurred a bit). It feels like everything I have been working toward for he last year has reached its pinnacle. I was working toward health, fitness, healthy mind and soul. Have I achieved this. YES. I am on my way to becoming the person I vision my self as. I feel healthy I feel fit. I feel like I have used this last year well, to discover me and my new body, to get answers about things that otherwise would have followed me forever. When I woke up from transplant, I didn't set myself these goals, I just hoped to make it through a day at a time, I never believed I could have done this. That I could survive this horrendous thing and still come out whole, well I didn't, I'm not ashamed to say it I got shattered into tiny pieces, my mind felt like it was fragmented and I didn't know who I was. When I thought I was back together this whole recovery threw other mental obstacles in my way, But now I guess I feel stronger than I ever could.

THE BALL
Well, Its ball central here! oh dear didn't mean the innuendo. I have been going crazy the last week, organising, finalising, selling I have to say this is actually the bit I enjoy right now, everything coming together, pieces are falling into place. If things were going wrong I would be a sleepless mess. But its not. I'm getting there!! I can't wait now, but at the same time I'm still trying to sell tickets, so I want time to slow down so I can sell more. I have until Monday to get my final numbers in, I would just like to sell 10more tickets then ill be happy. 10 more I can do it I'm sure.

Disney Paris our wedding anniversary

So again its a catch up by photos, Well Saturday was mine and stuart wedding anniversary and we jetted of to disney paris, a four star hotel, lots and lots of great food, the first time in ages I'v just allowed myself to eat what i want and when I want. It was totally indulgence, We spent 3 days in the disney parks and the evenings in disney villiage. Here are a few snap shots of our first holiday post transplant.

Waiting for the plane

On the coach to our hotel

With Mickey

Me with jennifer a friend who works over in disney





I love scarey rides, but apparently I dont look like i do lol.





Us posing before we go into the wildwest dinner and show amazing!!



I had sucha great time, it feels like everything I have been waiting for is coming together, Im not so worried now about post transplant complications and first year problems, everything is settling down, physically, mentally. Im where I want to be, Im on target. The ball is looming and life just seems good. Im also planning my next holiday to the elysium in cyprus where we were booked to get married, im hoping to go in september for my birthday.





Disney Paris

Well I had clinic on Thursday, previously I was told to wait and see about a holiday and that I possibly couldn't go until September as I'm sure most of you know, me and Stu didn't really get a honey moon, so to speak. We spend a few nights in Cornwall and it was a very grand hotel but dying on your 'honey moon' isn't much fun. So we were hoping to do away for a 2 week break on our first wedding anniversary. Which is next week 16th of June. I decided to see if we could go away for 4 days to Paris or Spain. I was desperate to get away and would just love to go anywhere for a short amount of time. I got the go ahead. We have just booked Disney Paris for 3 days!! I'm so excited I can't believe it, I can't even begin to tell everyone how excited I am, I went into the travel agents today and it just came out to expensive for us £1700+ but I got on the Internet tonight and have sorted out a deal that's less than half that!!! Still the most expensive 3 days of my life but for once when you've got to do something you've just got to do it and we have. I feel so highly emotional and grateful, I'm living and enjoying my life doing the things I've wanted to do, Holidays were such a big part of what I wanted to be able to do post TX, Just to enjoy every second and soak up all that life has to offer. I'm so grateful I feel like I could burst. So on the 16th we fly to paris and stay at the best disney hotel and go to the disney parks!

I'm going to leave it there, a short but sweet post.