Friday 30 September 2011

My 22nd and A letter to Stu writted on 9th of March

I celebrated my 22nd yesterday and felt so happy to be alive. I went out the weekend before and celebrated in style, something I have been unable to do in a long while. Me and Stu have also been rock climbing, Go Ape and shopping over 3 days. I got lots of lovely presents.

 When I was very sick and on Ecmo and ventilation, heavily sedated my mum said 'you know what to do if you want a kiss from Stu, just pucker up' and we did, I though that was going to be my last ever kiss with my husband. A truly sad moment, I could feel the pain rip through my heart as all I wanted was to be wrapped up in his arms. We kiss every day and I don't take one kiss for granted.

Now here's the letter I wrote to Stu on 9th of march this year, in preparation of me not making it. Stu will be blogging on it in the next 2days, but is currently a little stuck for words.

To My Dear Stuart,
As I sit here, I'm in hospital it’s the week before we go to harefield for our 3day appointment. I say ours, because it will determine how our lives will be lived from now. We know my health is at a stage where I have a 50% chance of surviving. In writing this in case things didn’t go to plan sweetie. I'm not here. This doesn’t make me sad for me, I'm sad for you because I love you and worry how you will cope now. I'm not going to tell you how to grieve, this is your part to do, You can grieve for me as you like, Iv got to say though I'm glad I'm not the one grieving. I couldn’t cope if it were you leaving me. I hope in time it will become easier, that you will always have a place in your heart for me but maybe one day you will have a space for someone else to? I hope you are happy in life and that you live it to the full for me, take chances, risks, do all the things you thought you couldn’t, go on holidays, spend time with friends and family. I know my nan will probably look after kia, because of your work, but if that changes please look after our little girl. She loves her daddy and would love to live with you if she can. If not then make sure you still see her, she would be very sad if she thought you didn’t love her anymore.
Just know I never wanted to leave you, I love you to the end of the earth, you have been my rock so far and I don’t doubt you were right up until the end. I want you to know being with you has been the happiest days of my life, I wish we could have got to the other side of transplant and enjoyed that time together to but I'm just glad you were in my life for as long as you have been.
I don’t know if this letter helps in anyway.
Love now and forever,

This letter was written with the thought that I really wasn't going to make it, I did many things like this.

Thursday 22 September 2011

lung function, gym, job and future blogs

Things are going great, I went to clinic last week and my lung function was 74% fev1 and 67% fvc and that has improved each day since iv been home, I dont know what it is in percentages at home as I only have a little hand held spiro. My docs were very happy with evereything and even smiled when i told them I hadn't waited to go to the gym like they said and had been 4 times by that point. Each time I go I seem to improve massivly I did 65minutes on the bike none stop, It was pretty impressive, but me, my family, friends and some of my medical team are doign a 180 miles bike ride from exeter hospital to Harefield hospital. which will be 60 miles a day so i really am concentration on the bike. I also did 10minutes ont he treadmill and 30mintues on weights. I can't wait till I can swim, then I hope to be able to do 30mintues on top of that. From now Im concentrating on upping the levels on the bike, rather than doing more time otherwise ill be there all day. Im also upping my reps and weights ont he weight machines. I will be poling very soon Im sure of it.

I went for a job interview the other day with whiz-kidz a charity that raises money for wheelchairs for children to suit there disabiltiy and needs, it also trains them so they get the full potential out of it and help them socialize. I have got the job and should start in the next month or so. My job is to sign people up to a monthly donation, it sounds quite good and im really looking forward to it. I am still looking out for various other work, especially in a physio therapy centre helping with rehab, I think that would be really rewarding. The good thing about this job is If I want to do other things or find full time a bit to much I can just cut down to part time. But I don't forsee I will have any problems.

I have a few things lined up for this blog over the next few months, such as guest bloggers, which will include other peoples perspectives of my transplant, thsi will hopefully prepare friends and family for there loved on having a transplant. Im also hoping to have a few different bloggers, but cant say at the moment as i havnt had chance to ask them, but I think they will be really intresting to read.

Also the next blog will be the letter I wrote to Stuart in the event of my death, He has read it and said its up to me if i want to put it on here and I think It gives a really good in site to my feelings and worrries at the time. Hopefully stuart will write a blog alongside this, on how he felt reading it and how our lives are now were the other side.

Sunday 18 September 2011

Blank application forms

Sitting staring at blank applications forms, trolling through job advert. What do I want to do with my life, now I have it back. Iv never been good at application forms, they fustrate me and overwhelm me. I have this feeling of going nowhere fast. I know im only 2months transplant, that im still healing, the amount I have achieved is enomous, but yet I hunger for more. I knew this would be an issue with me before I even had my transplant, Im such a driven person that even when I am doing loads I feel like im not doing enough. I want to work and I want to work now. I have a rough idea of what i want to do, but feel slightly lost in the fustration of it all. Who will employ me, when i worked I was self employed, so no ones going to want to hire me and there going take one look at my health  and think im not capable.

This week Iv been hitting the gym hard and its paying off, 40minutes of cardio on high intensity and all the weights machines with higher wieghts and more reps. But I still don't have the strength to pole.

Friday 9 September 2011

THe fun of life with new lungs

Well, Iv been a bizy bee, Throwing myself back in. I want to do everything and do it now. I have a sweet taste of life and I am gorging.

Catching up with many friends, my diary is packed. I have been into Exeter on the train with Kia a few times to meet Stu from work, I went out for a friends birthday, it was one of Stu's work colleagues so I was amongst the guys and the only girls were me and my sister in law. It was so much fun, standing around having a few drinks, toasting to our marriage, new lungs and mikes birthday, with tasty bubbly. But the night was over soon as Stu was off early to work the next day. But It was so fun now i can enjoy it like everyone else.

I walk Kia every day, for ages, through the fields near our house. We play in the kids play park, shes getting very good at agility going up and down the log beams they've set up in there, weaving in and out. I think I might take her to classes, she has a natural ability.

Iv been for meals with Stu, walking around the shops with my mum and mucking around trying hats on.
Then last night I had my niece sleep over! It was great, we took kia for a walk, I did her hair and make up.

Do you think she looks like me? Me and my sister think she could pass of as my child more then my sisters lol. Anyway we had great fun and I'm hoping it will be a weekly thing.

Iv also started gyming and did surprisingly well, 15 minutes of high intensity cardio split between the bike, treadmill and cross trainer and all the different sorts of weights, I'm now allowed to do this and I'm going to the gym and for a bike ride Sunday weather permitting. The only bad news is I have to wait 6-12months before I can swim although, If I'm healed my doc may allow me to do it early.


That's right I feel the need to be doing more, so my plan at the moment is to do some sort of volunteer work, maybe a charity shop, but to be honest I want to be more involved with the actual people who need help. I was discussing it today and I would really like to volunteer in a physio rehab centre for physical disability's, I obviously have to be careful what disability's I work with due to being imuno suppressed. But I feel physical disability's would be a safe area to volunteer in and something I can relate to due to my time rehabing and also my severe arthritis as a child, which i still suffer with on and off but not severely. So I'm on the scout out for something, If anyone has any advise or knowledge on how to get into this then please let me know. I am physical up to the challenge now and can't do nothing for much longer.

Long term I would like to do some paid work for a charity as well as all the free stuff I do. I want rewarding work, I want to feel like I'm helping people. I like the idea of still helping with rehab but possibly working in pr for a charity, as I'm very good at networking and causing media hype, I use to cause a stir in college in the papers and also now promoting Live life and give life as an ambassador and generally getting the word out about organ donation. Which I have been told I will hopefully be going over to advocate soon, similar role, but hopefully i can do a bit more and I'm allowed to take part in socials as theres no cross infection risks. I will always do my free charity work and fundraising. But I need to have some sort of income.

I'm also hoping to re start my business but on a smaller scale, just teaching privately at home to more advanced students, Iv had my time teaching from scratch but I enjoy the challenge of advanced pupils and I only wish to do that as one lesson a day in the evenings and have eventually my paid charity work and free charity work as my main job. Pole will have to be in at least 6months to a years time as I am just not strong enough to teach yet and that will take me a while to re train.

So lots of ideas lined up and a few more in the back of my brain, but I'm not ready to discuss them.

Hope somebody out there can give me a point in the right direction.

Express and Echo and Im also in this weeks TAKE A BREAK

Thursday 1 September 2011

Transplant blog

Well I know its been a long time since I have blogged, but the words don't seem to come easily. Come around from a haze to be told I'd had a lung transplant and all my dreams had been answered wasn't as uplifting as you'd think, I had been through hell and back on ecmo in and out of sedation, ventilated and had a tracky fitted. I had come to peace with the idea of dying and I had prepared myself because transplant didn't seem realistic anymore. I was dying.
Ventilated through my mouth and on ecmo

Still on ecmo but ventilated through tracki. the red tube (blood) is the ecmo which went into my neck on the other side

I had 2 false alarms. Then on the 10/7 completely sedated with my family had preparing for the worse. I had hours left. Then everything changed, there were a set of lungs available Sunday night. My family waited for test after test to come back and right up until I was taken down no one knew If they were going to take the chance on my frail and dying body. 11/7 I received the gift of life.

Waking up confused, in pain and suffering from post traumatic stress from hallucinations and vague memories of my time on ecmo. The idea that id had a transplant confused and scared me. Why was I still being ventilated through my tracky? Why was I in so much pain? Why did I feel so ill and tired? I was scared. It took alot of people telling me I had new lungs for me to believe it. But still I felt so despondent and lost, fear had engulfed me and I still felt like death was lurking around. I didn't know how to get through this, how to build my strength, I was unable to tell everyone how scared I was as the tracky prevented me from talking. I was overwhelmed with the sense of guilt for my donor. I knew before transplant what organ donation ment and the idea was easier to deal with then, I had logic on my side. Someone had already been determined brain dead and there organs were there to save others because that's what they had wanted. But after my transplant logic was lost and all I felt was a deep grief for this brave person who had saved my life and I didn't feel worthy.

I had been ready to die, I had accepted that death was coming, I had even tried to communicate on ecmo that I'd had enough. I never wanted to die, I just didn't know how to do it anymore, I was suffering and I didn't like it. So having a transplant felt like maybe someone else deserved it more because I was so weak and so tired and I had given up for those brief moments. What kept me going? Stuart, My Mum and a visitor I had one day, I saw her in the corner of my eye, standing there, I tired to point her out to my mum and Stu and said 'whos that' there was no one there in there eyes, but the was to me, I don't think it was a hallucination, I think it was my angel Debbie and she was obviously willing me on, telling me to carry on fighting that little longer. Debbie was a CF friend of mine who died at the very young age of 16 after an unsuccessful transplant, I was only 10 at the time, I looked up to her, she was an inspiration.

In ICU after the transplant I struggled to grasp reality. What was real? The terrify things I remembered where they true or some terrifying hallucination. The reality and the hallucination, both were as terrifying as each other and they stopped me from sleeping, I begged to be sadated again just so I could rest.

The next thing the physios were at my door, already wanting me to start my rehab, the thought terrified me, my body felt like a dead weight, like nothing wanted to move and I didn't even have the strength to undo envelopes. What were they going to try and make me do. Sit on the edge of the bed. It sounds simple, but I was found it hard lifting my head how was i going to maintain holding my body up. I had two chest drains in, wires attached, tubes everywhere. this was going to be hard. I reluctantly agreed. they sat me up using the bed, moved drains and wires, slowly the moved me into position, I had to start using my stomach muscles to hold myself up as I Slumped forward. I started to nose dive off the bed, but I was pulled back by the physio behind me and pushed upright by the one in front. We tried again. My sats were still good, but I felt so breathless, I was working my new lungs. I think I was on just high flow at this time as they had weened me off the ventilator, on to cpap then high flow. So we tried again, I straightened up hand down on the bed and I held myself, with little to no support. I didn't feel that happy about it though, now I see it was such a big mile stone, but then it was just baby steps and I knew it would continue being baby steps for a long time.

I had restricted my visiting, I had been so overwhelmed the first day, all I wanted was my mum, I even stopped Stu coming up one day as I couldn't face him, I felt like such a disappointment, I should be happy, I should be pushing myself, but no all I wanted was to rest. I was suffering from being in icu, I had post traumatic stress and I was on diazepam for my anxiety and citilopram an anti depressant. I never thought I would need anti depressants but the trauma had truly shaken me. I felt fragmented and couldn't make sense of things. I finally had a voiceinator put on to my tracky once I was just using my nasal specs with very little oxygen. I talked a little, but then felt to tired to continue communicating, it was really hard just to get the words out. Eventually I talked more and more, but my silence was also because of my depression and despondency. I started to wade through my thought and fears, asking about my time on ecmo.

I had a few more visitors but kept it to my Mum in the morning, Stu in the afternoon and My dad and Step Mum in the Evening. I was still in and out of sleep, tired by doing simple things. I was hungry and I wanted to eat, I'd watch food adverts longingly. We started to introduce water, I tried a sip whilst sat on the edge of the bed, It was ok, It went down the right whole, but my tracky made me feel uneasy and after every time I drank I felt like I had to be suctioned through my tracky, I was worried It was going into my lungs, It wasn't, but I was still very confused.

I started drinking squash, then eating ice lollies. Slowly I was persuaded to try yogurt and soup. Then more solid but still mushy food.

I also stood and marched, I used a zimmer frame, then I was sitting out of the bed, they were all still baby steps, which left me knackered. I needed help to stand and supporting the whole time.

Rehab, i had to learn to feed myself, sit up,
use my arms and legs, walk with the zimmer

They had me on the bike quickly but this smile was a little bit forced,
I hated it.

yes very exhausting, 1minute in with no Resistance, i was very weak. Some of my fav people here. I didn't like my physio to begin with but i wouldn't be anywhere with out her, fantastic nurse as well. helped me through things emotionally as she had had a brain tumour and knew some of what i was dealing with.

My mood was picking up for short periods of time. But I had a catheter and what I describe as a poo bag, these made me very uncomfortable. I developed C diff from the amount of antibiotics I was on. My stomach swelled till I looked 12 months pregnant, if there was such a thing. It was very painful. Making me more uncomfortable.

A week and a half post transplant I was moved to E ward and it was like a weight had been lifted, my tracky was removed, my lungs were cleared a few times by bronch and my breathing was getting easier. The nasal specs were taken away from me and I was breathing on my own with sats of 98-100 something I had never known! I started a slow walk up the corridor and just kept going till the end slow and steady and with my zimmer frame. My catheter and poo bag gone, but the two chest drains stayed with me. I then went outside for the first time in weeks and weeks.


Feeding myself



I then started to move around my room, with out the zimmer until I just decided actually I don't think I need it. walking anywhere got me very tired but once I was rid of the zimmer frame I felt like I was gaining far more energy. Then I decided it was time for stairs 2 days earlier then I was suppose to. Me and Stu went and tackled the stairs.

It took alot for me to get rid of my depression but having a shower and knowing I was going to be out of hosp really lifted me, having my chest drains taken out after 4 and half weeks was amazing, the day before I was suppose to go home, the shower the next morning the first in 6 weeks. I was on cloud nine.

But that day I had a blip about a liter of fluid was sitting between the lung cavity and squashing my right lung. I was devastated. I would have to have another chest drain put in under local no sedation and it was going to hurt, i was shaken like a leaf as they inserted the tiniest pigtail drain, but right into my back. Sleep that night was horrible, I was in agony and unimpressed.

The next day I waited, trying not to get excited, finally I was allowed home. Amazing!!

Stuart drove me out of the hospital, with the documentary team filming. I stayed at my dad for 2weeks with appointments at harefield twice a week.I walked everywhere, building up my muscles, shopping, cinema, seeing family who live in London. It Felt amazing, my breathing just got better and better, the more I walked the better I felt. The aches of rebuilding my muscles killed but I had to push on. The first few week were important I knew that. My reluctance of the first few week was gone and now I was ready, ready to re engage in life, plan what I wanted to do next and think about my list of things to do.

Im now home home, back with my kia and i haven't stopped all week, I even went canoeing. I can't wait to go swimming and start building up my for my charity cycle ride, which I think will be in september next year. From exeter to harefield over 3 days.
Finally to some up the big update, I'm so happy to receive this gift of life, I can never explain how amazing it is each day. It was hard to begin with, but when you get to where I am today you know you'd do it all again if you had to just to get this ounce of freedom, sense of life, I'm so happy happy happy.

Me canoeing with friends and kia.