Clinic = amazing

Today I had clinic at harefield, I'm 5 months and 13 days post second double lung transplant. Me and stu turned up bright and early and got to spend most of the day with my friend Emily assin, her baby Sophia and sister Abbey. Emily and Sophia visited regularly when I was in rejection and Sophia would cuddle up with me while Emily made sure I was fed, watered, pain free and calm. So as you can tell already these visits were very special to me. Emily is 7 years post transplant and had her baby through surrogacy. Sophia is 8 months now.




Me and Emily.


Me and baby Sophia!

Clinic started with blood, an achievement in its self, my veins are now accessible and bleeding well after a well earned break. Yep 4 1/2 months free of un planned hospital admissions, iv only been in for a couple of days for planned bronchs! This feels amazing to me!

Then lung function, my fvc = total capacity = 88% and my fev1 = amount I can blow out in the first second showing how well your lungs are working = 96% so I can blow out 96% of 88% in the first second = 100% amazing!

I them had a 6 month exercise test, walking for 6 minutes I covered 570meters the most my physio had personally ever seen! Which again is amazing!

Also over the last month or so my blood sugars have been playing up first my insulin need went up dramatically, I tried incredibly hard to tackle this, which resulted in a fair few hypos and now after going back to the gym and trying to cut down my carbohydrate intake iv been off insulin for two days and still managed to have a hypo. Obviously a hypo isn't good but it's really something that I'm off insulin I now just have to get the right amount of carbs in to keep my blood sugar stable. So that's pretty.......amazing.

The only slight issue is my white cell count is to low and so are my neutrophils. I have stopped a medication and will have to keep an eye.

I'm really enjoying life and feeling like things are going in the right direction. I'm so happy and thankful it's positively sickly ;-) I'm now on my agents website and waiting for the work to come in, which will hopefully result in being able to leave my job at next and focus full time on public speaking, tv presenting and get back to teaching pole (once my garage is converted in to a studio).

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Flu, recovery and mini break

So sorry everyone for being a bit slack, my last post was after my bronch where I was told I had a fungal infection. It turned out i actually had flu! Which thinking back makes sense, chest pains, really struggling to walk anywhere or do anything on the Friday and my lung function was down 40%. So I was put on immuno globins, methyl pred, tammi flu, colomycin, tobramycin, posaconazole and put in isolation due to the methyl pred making me very immuno suppressed and also being on a transplant ward with the flu obviously I was highly contagious and risky.
The admission continued to be absolutely awful. The drugs gave me terrible side affects leaving me feeling awful. My joints became loose and would randomly pop out of place causing horrendous pain, my diabetes went from virtually none existent to making me feel physically sick due to high sugars that weren't controllable due to methyl pred. I felt bloated the whole time and ate loads. My skin seemed translucent and I felt just dreadful. The methyl pred made me feel like I was on edge and a group of people seemed like buzzing bees. Being in large crowed places when I had my face mask on was a no due to the sheer anxiety it brought. By the time it came to going home I was practically running out the door screaming even if my lungs weren't quite up to it yet. I'm pretty sure I had to check myself and make sure I didn't just start running.
I managed to escape last Tuesday which was a complete shambles. I was told I would be going home Monday to find out transport was not arranged, neither was any of the tests I needed before I left arranged. I spent Monday running around trying to sort it all and feeling extremely fragile. I did not go home Monday but I was moved to the family accommodation 'for my own benefit' in other words cutting costs and leaving me on my own with no one around when I was really not well enough because they wouldn't fork out a extra few quid for my mum to stay with me or to send me home that day. I can certainly say there was nothing about park wood that was for my benefit. So Tuesday I headed home on transport and proceeded to spend Wednesday and Thursday in my local having bloods done. My stomach stopped working and my kidney function was off but although I spent a length of time in the hospital I was glad to finally me home and back where I felt comfortable.
Friday finally I started to feel normal, my sugars were getting better my renal function picking up and the high dose steroid were coming down! Those things are toxic and possibly one of the worst drugs ever! I describe being on them as having a battery shoved where the sun doesn't shine and you spend the rest of the time having your body trying to vomit them out your mouth.
So feeling much better but due back in Harefield Monday me and stu took a mini break driving via the coast and then up to Harefield. Leisurely stopping where ever and having some us time. I cannot express how much I missed him so a little us time was needed. When I'm away from him I tend not to talk to him very much and when I do I make the conversations short. It's all part of my survival tactic. If I shut him out it doesn't hurt as much that I'm not with him. So we went to the cinema, bowling, shopping in various places and eating lots of food! (High dose steroids still affecting my appertiate).
So clinic Went well after over a week in Harefield and not seeing one consultant I actually saw the main man him self (never seen him in clinic before since having my tx) I panicked at first when I knew I was seeing him, I wondered if I had done something wrong or some results had come back but no I think it was just one of those occasions to catch up on how ide been since tx and that I was actually quite poorly when I left and the nurse who organises clinic realised I was struggling to stand due to being short of breath. Always a good reason to make sure everything's ok. But yes actually I was doing really well, the few days away had done me the world of good, my breathing is getting back to normal, I'm still not quit there but recovering quickly considering and all in all It was a good meeting to touch base on a few things and made some of the confidence come back I had perhaps lost in my health due to being so poorly this time.




Me and stu before clinic
So all in all I'm ready to get back to the gym and start kicking ass! I was gyming 5 days a week before this, pole training, aerial acrobatics training and yoga. I full expect to be back doing all of that over the space of two weeks and also to cut down the copious amounts I'm eating, which to be fair iv not gained any weight on the steroids but lost it, but I can't live eating this much!
So now I'm back home, teaching but I still have a week off from next which is great as it really gives me chance to get my strength back. So a bit of a long slog of a blog. I will update soon on my progress getting back into my hectic schedule!
P.s I did ask stu to prof read this but he protested saying he likes to read it when he's on the loo so sorry for any mistakes! Lol
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And so the ball just kept rolling

I know this is over a week late really but I'm here to update you all on how clinic at Harefield went on Monday last week.

Well it was a long old day to say the least, 6am knocking at my front door, tap tap, tap, I had forgotten to set the alarm. The first time ever I get hospital transport and I forget to actually get up. I ran down stairs in my dressing gown and told the driver I would be ready in 10 minutes, luckily I had indeed had a shower the night before got my clothes ready to put on and my food for the day packed. So running round getting dressed, I did my hair up in a slick donut Hun. Pristine and easy, make up in a bag, I would be putting make up on whilst in a moving vehicle! (I did not understand how hard this would in fact be!) and food thrown in so I wasn't quite 10 minutes but 15 isn't bad when you've just woke up!

So the journey was long, we went via Southampton for another pick up several hours later we arrived, I'm just glad the company in the car was good, otherwise it would have dragged!

I felt particularly nervous about this appointment, sometimes you can build things up in your head, bigger than they actually are. Possibly what iv done over this while fundoplication operation. But anyway my lung function has been a bit lets say squiffy and I had a heap of questions about this operation, in fact a huge sheet, not all for Harefield as there not the hospital doing the operation but they can certainly answer a lot of them. So I had bloods, lung function (which wasn't as bad as it had been(yay)), x-ray, then we lunch for a bit and go back, by this time tiredness was setting in and in the hot environment of the hospital I was falling asleep.

I was called in, a doctor I have never met before, although he assures me he knows me as he was at a talk I did on transplant and organ donation (humm I wonder whether he's another stalker(only joking)) we sit down and the first thing he asks is have I had it, had it, had what? Had a baby? Did I look pregnant? No the op, did I have the op, humm straight in there with that are we, interesting. So I fidget in my seat uncomfortably and tell him that I actually really don't want the op as the surgeon scared the living s*** out of me, I blurt out all my fears and uncontrollable thoughts and he steadily looks through all my information, with my one big question, do I really need it? Well he explained the risks, which I knew already, I wish doctor would ask that before explaining away, a simple, do you know the risk of not having the operation if you do indeed have reflux? I could say yes then 5 minutes wouldn't be wasted of me going yes I understand that. I sit and go through the reasons I'm worried about the op, such as open surgery being a big op, with huge recovery times, iv just got recovered from the last one, yes al be it slightly more major, I also said about affecting my career, well everything.

So the first thing we looked at was my previous reflux test, he said it was positive, this is 2 years ago I had this test, when I was having severe symptoms, before my transplant, in which time my reflux has vastly improved, iv had some dodgy bout after my stomach bug but actually on the whole it's lots better. So we decided I needed to have a retest, also I would need a ct scan to see if I have any signs of chronic rejection from any possible reflux, then a lung biopsy to also check for rejection. He conversed with my consultant and came back at which my consultant had said they were surprised about the possibility of open surgery as they hadn't realised my former bowel surgeries and agree that they should retest first as open surgery poses many more risks, including infection due to weakened diaphragm and intercostal muscles.

So I heard what I wanted to hear, if the tests come back and If i need it then fine. Ill be straight In that operating theatre. The tests are all to be carried out immediately so that if there is reflux we won't be delaying the operation to much and no further damage will be done, iv also been prescribed higher doses of meds for reflux in which will prevent it as much as possible.

As for my lung function they weren't all that worried.

So that was it, the big appointment I was nervous about, I had no reason to be.


I will be writing a blog on a few other catch up things but just to let you all know I will be on itv west country today (Tuesday) at around 6pm it will be available on the Internet and ill post it here. It's for itvs 'from the heart' campaign supporting organ donation. It's an amazing step in the right direction and I'm glad to be a part of it and I even got to introduce and sign off my own piece a small step toward TV presenting.

So I will leave you all now, hoping all my readers are happy and well and if not I wish it for the future x

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Keep the ball rolling

So recently I feel my life is coming together in lots of different ways. I'm busy and I love being busy. Working at next, attending the gym with a new hard regime, training on pole, starting hoop regularly and teaching pole is really picking up nicely. The best thing tho is, yes, presenting might actually be getting some where, I'm doing a few pieces for BBC radio Devon on pause for thought in march and also I got asked to be interviewed for itv West Country as part of there 'from the heart' campaign for more donors, but a new twist has developed I'm presenting my own piece! Which will be used in my show reel! How awesome is that! I'm applying for workshops and experience with channel 4s 4talent to! I just love it when a plan comes together!
It's nice to feel the momentum of life picking me up and rolling with it. I just hope that health complications don't stop this ball from rolling. There's only so many times I can push it all to come back together. But hell ill keep trying every time because I know my healthy patch won't last forever and unfortunately I have been struggling the last few days with a lower than normal lung function, tackicardia and palpitations. I'm due up to Harefield Monday where I plan that my orals will have worked, I won't be kept in and will feel miraculously better! Come on my beautiful lungers we can do it. It turns out were a pretty awesome team after everything we've already faced in our short little relationship.
So wish me luck guys and hope I can keep this ball rolling
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Fundo operation anxiety and fear

I've talked about the fundo operation im suppose to be having Here

Well they rang up the other week and left a voice message saying I can have it as early as the next week, suddenly the fear that had been niggling inside me hit, I couldn't bring myself to ring and still haven't. Thoughts swimming around my head and an all mighty no just keeps screaming out over it all.

I guess you might think me pretty silly, it's just a little op right? well no, like I said in my previous blog mine may very well not be and this was again reiterated in the letter I received about the consultation and it really put across just how much they don't think this is going to be simple. Nothing in my life has ever been simple, from treatments, operations and obviously my transplant (not that in any case is it simple but you get what I mean). I just don't think I can face waking up and hearing them tell me it went wrong. I can't face that feeling of the unknown again. I don't want the new scars either dotted across my abdomen or sliced right through the middle, I may have lots and I'm fine with them, iv come to terms with them in time but I just don't want to have to. The recovery scares me so much, I know in comparison to learning to walk and talk it will be nothing but when you've just built everything back up to somewhere, where you feel strong healthy again, to have any incisions in my abs will also halt my pole progress and training. it feels pretty soul destroying to be knocked back down. How many times can I keep getting up? I know some people may think me silly but all these anxieties from my transplant flood back when I think about it and its something I'm just not sure I'm ready for?

I decided to mention it to my cf nurse the other day when I was up there and ended up in tears feeling very panicky and having to calm myself before I went into a panic attack. I asked to see the phycologist to see if I can put myself in a place where I'm ready and I also have an appointment at Harefield Monday, routine clinic, where I will discuss necessity and other options (if there are any) the last thing I want to do is risk my health, but while my reflux has calmed and not posing Immediate danger to my lungs, I want to weigh up all the options and prepare myself a little more if this is the only way.

I'm just hoping there is some other way. I tried to be strong and just get on with it but I couldn't.





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Harefield, fundo operation, Neil and thought for Kerry

I have been rather quiet everywhere, on Facebook, twitter and even here. I have needed some breathing space time to just be me. I have to say I think it's worked, I feel so much better inside myself. I have thought about my life inside and out. I started to think about what I actually wanted and what was stopping me, in conclusion I decided I didn't want to live this life where I'm struggling for money, bored out my brains. I came up with a ultimate career goal and smaller ones that will help me get there. I decided I love teaching pole and love pole but as a main career it's to stressful, people cancelling on you all the time, never knowing what your income is from one week to another, it was zapping all the fun out of it.

Thinking about what sort of lifestyle I want, what makes me happy and what I enjoy, I decided I would like to be a presenter, I think my background in media has prepared me for the highs and lows. I have contacts in this industry and thinking about all the different aspects of presenting there's not many areas I don't like. I mostly love public interest stories and journalism side. So to get to my main career goal I have lots of little goals, first being, get a part time job on top of pole to supplement my low wage, well done that, I start of Friday with a temporary contract with next in women's wear, which I'm looking forward to. Next goal, a portfolio and show real, both of these I'm organising. Then there's also contacting all my contacts which iv done and had some feed back from. I know this is going to happen over night but I know I can do it.

So other things I've been up to, Iv been up to London for Harefield check up where everything's all well, I was prescribed a drug for nerve pain that's been agony, but good to say that's all sorted. I also had a appointment at st Mary's for a operation I need, I have had bad reflux for years, before transplant and now after, so they have decided to do a fundoplication, basically wrapping the opening of my stomach with flesh from the stomach, by pulling it up and around.

This is a very common operation post transplant. It's done through key whole and is a minor op. unfortunately mine may not be so minor, it turns out that due to various stomach ops I have had micolium isleus and appendix, I may have a lot of scar tissue, they think this because of all the blockages I get that the scar tissue may be one of the reasons. If they can't do it through key whole they will make a scar from the bottom of my sternum to my belly button. A substantial scar. I was devastated to be honest, I take pride in my body and my looks, I don't think there's anything wrong with that, I have near 40 scars now, I get over them each time a new one appears but for some reason the idea of this one really upsets me. I hope that it doesn't come to this. It's strange though my transplant scar never bothered me.

While I was up there I took the time to catch up with friends and saw Neil who's doing amazingly and on the last day I said goodbye had the best smile on his face. Transplant is no easy journey but when you get to where your going its amazing.


This is a picture of the scrap book I made Neil, it's one of the hardest and best presents iv ever done for anyone, following his journey from his call to when he gets home, leaving him space to put other stuff in. There's spaces for firsts, first Christmas, golf game post transplant.

All my Christmas decs are up and I've been baking. Feeling festive.

I'de also like to leave you with one last thought, while your wishing
for those pair of jeans for Christmas, or new straighteners. My friend Kerry thorpe is wishing to make it to Christmas, she is wishing for her call to come. Without that call we don't know how long Kerry will survive, so when your making your lists for Santa please make sure you fill out the organ donor form and get all your family to, when your making your Christmas wishes, make one for Kerry. She is now suffering regular respiratory arrests, I went through many of these and I cannot express how scary they are because you are literally staring death in the face.

Stay strong Kerry we are all thinking about you xxx


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Yearly clinic

So my annual review, One year on being back at hearfeild and seeing all the staff and telling them its been one year and this time last year I was only just coming on to E ward, 'no way' was the response. The sunny weather that has finally arrived really takes me back when your there, It was sweltering when I was in and all i did was have hot flushes and sweat.

I had bloods, Ecg, fitness test, lung function and xray.

 I have now had a chest infection for 3weeks, at first my lung function wasn't affected, It started to be affected over a week ago and I started Cipro oral antibiotics, but needless to say it didn't really help, I had 2 ashma attack while cycling, coughing continuous amounts and sleeping loads. I knew my year review wasn't going to be as successful as I would like. The fitness test, well I still kicked ass, they were extremely impressed and said I was above average of a normal person, that my lungs were very good and they were surprised at how smooth my lines were, indicating that the lungs were working at a normal capacity and didn't seem transplanted at all. Which is fantastic. They said my fitness level was well beyond average transplant patient. I'm so happy as I have worked hard. They did how ever stop me Earlie, they said they didn't want me to push myself due to the infection, I was so annoyed, I wanted to bust some records. They did however say I could repeat next time at which my result would be even better.

My lung function was down, a tad, but I knew that, I thought my consultant would want me in, i instantly got in there with 'I want home ivs' and she went 'ok' surprised and yay. It feels like they are suddenly aware that I know my body now and trust me. relief.

Kidneys are functioning very well, which is great.

Diabetes, Well my h1bc result is only slightly raised but very good as I'm diabetic and even better as I have been reducing my insulin for a while, at the same time altering my diet and exercising to make sure my sugars are stable, All my home readings have been below 10 which is great. I'm getting somewhere for the hard to manage diabetes that was having hissy fits all the time, to correcting it, Ill never be with out it, if i eat crap then my sugars are high, but as long as i eat like i have then it will remain good.

Everything else was pretty good, I need to reduce my tac slightly and will start home IV next week, I also need my sinus's looked at as they are highly infected and causing the infection in my lungs.

To see what else went on, on my day at clinic, please look at my last blog, Kimberly kneil's new lungs.

A reply

I went to clinic on Thursday. It was a great clinic I got to meet Sarah who's from Cornwall, so my neck of the woods and It was great just chatting about things with someone who's been through the same sort of thing. I have to say, I find I have such a connection with other transplant patient especially Lungs and heart. Something about your chest being cut open really brings you together. Which is why I eventually want to set up a Lung transplant Support group for the southwest. Its something I have though about and if theres one already out there, then well there not doing very well as I don't feel very supported. I know It could be a great deal of work as I want anyone in the southwest to know that the group exists and have regular get together, once a month. Iv decided It's my next project after Sept 9th the date I finish my bike ride, that is if I can hold off till then. I've got great ideas to make sure south west patients know we exists and I think It could be a really great thing. My Lung function was the highest yet.

Anyway, as I was in clinic waiting. Rob the transplant coordinator came up to me and asked to speak in private. I knew what it was about, My letter. He said there was a reply and that it was quite detailed and that my donors family also know who I am. I knew I would accept this letter and said yes. He went to go get it. I went back and sat with my mum and burst in to tears. I had been waiting and wondering and now the time was here, suddenly I felt great fear, would they like me? Have I done enough for them to be happy about there donation? What if they were disappointed or upset by anything I had done? Rob arrived back with he letter and saw I was very upset and asked again, 'are you sure?' I was, I knew I would be upset but I had to read, I had to know.

It was one of the loveliest letters I have read, So many beautiful memory's of my donor, things I could only wish to know. I feel so lucky to have been given this information, I already owe my donors family so much, but this was just that one step further. I can never say thank you enough to them. The letter was left open for me to write back. I'm sure I will, when I have had time to absorb the many facts.

Its leads me to a film I was watching earlier, based on a real story, I can't remember the title I was to absorbed in the story. I switched it on and little did I know It would lead to organ donation. A teenager had died in a car accident and the family were approached about organ donation. I burst into tears, thinking of what my donors family went through and the hurt they must of been feeling. The deep pain I felt watching this, just made me feel so grateful and thankful to them.

So I will leave my post there today.

Thank you for reading.

Honiton Community College ODR talk

Last Saturday I attended the speakers training with LLTGL session and it really helped me. I only realised how much when I came to do 2 talks yesterday to Honiton Community College 6form students. They sat and listened patiently as I went thought my ordeal and at the end bombarded me with lots of questions, which was great as it showed me they were interested. The questions were so varied some wanted to know things from a organ donation point of view then there were the scientific, cf and transplant related questions and the purely social and curiosity questions.

The younger 6forms were more curious on the whole. I guess youth are always more inquisitive.
My old science teacher who were there as head of teacher said how knowledgeable I was in a scientific sense but breaking down the information so it was easy for everyone to understand, this made me feel very happy. They also said that the students had said it was one of the most interesting and best talks they had had and that they felt I was better then most of the professional speaker they had had. I’m hoping to continue doing talks through to the rest of the school and im really looking forward to it.

I’m also hoping to get in touch with Exeter College and Exeter university and talk to there students.
Health wise im much better and I escaped clinic with no bronch yay. I have carried on the high intensity nebbing regime for now, but when I feel im al little bit more settled ill drop to one pulmozyne a day and leave the salbutamol nebs. But im being extra wary 2 infections in the space of 2months is not good and I need to preserve these lungs. Im hoping this is just the first year being the hardest like everyone says and it will all settle down. Don't get me wrong tho this is still amazing and im enjoying life every second I just don't want the constant threat of pseudomonas on my lungs.

Other things I have been teaching lots and I'm looking forward to a weekend away in london staying at a hotel and seeing Jersey Boys with Stuart. Second hotel weekend away for us since TX so looking forward to it. Were also going to go oxford street and hopfully go to a museum.

Clinic and gerneral update

Ok so Iv been having a few hiccup with my pseudo, but to be expected. I went to harefield on the 24th and started a course of Cipro, it sort of helped but as soon as i came off it, wham back to how I felt before. I don't feel ill, a bit tired but then I am doing alot, which ill get to later, my lung functions not been greatly affected it did a small drop but its back up now, its the persistent cough, which everyone says sounds like my cf cough, so you can see It got me worrying. I'm also productive but its small plugs of flem that just rattle there all day and are impossible to cough up and when I do they are disgusting. So I went to see my cf doc today, my lung function was 97% fv1 and 91% fev1 which is great, but he is slightly concerned about the sound of my upper airways and its quit obviously getting me down, he prescribed more Cipro and pulmozym a neb which will break up the flem. Iv already raised my mucodine myself, which also breaks up flem but its  a tablet. So hopefully this will knock it on the head. I'm starting the pulmozyn in clinic tuesday as i have to have a trial dose.

Another thing that my mum and Stu have mentioned and I have noticed to, Its hard not to. My memory, It has become really bad, substantially so, I used to know roughly what lessons, class's I had in a day most of the time id be able to tell you exactly know, now i have to make a real conscious effort and even then I forget, I have students randomly turning up and i check my diary and apparently its not so random. I talked about it with my Doc and he checked all my meds for symptoms of memory loss, there arnt any. So the other thing it could be is ecmo and bypass. They believe It may have caused the problem, I suppose you could call it v minor brain damage. Apparently its happens in older people with heart by pass surgery but he hasn't heard of it with young transplant patients, but he did advise me to ask my TX doc when I see them next, but hes going to relay with them anyway. The other thing he doesn't know is if it will get better, so apparently Iv got to get on the wii and do some brain training.

Yesterday we had a meeting to discuss the charity bike ride, we have preliminary dates, the Charity's chosen, LLTGL, EDCF/CFT and Harefield hosp. We have all of my CF team taking part, my doctor is arranging the route as he is a cycle enthusiast, from there we need to arrange stop points, food, accommodation, then from January were holding an open meeting at the RD&E where people who want to take part can find out more. Were going for the more the better and were informing the local authorities so they can sign post the route warning cars about us. So its going to be big!!! Anyone can get involved, if you live along the route you can join us, as long as you get sponsorship. When more has been organised I will update you all.

Tomorrow I'm off to London, Iv been asked to speak at a seminar for junior doctors explaining my journey through transplant and how my quality of life has changed. I'm so nervous, but really excited to.I 'going to write a few questions down to prompt myself but otherwise I'm thinking off the cuff, My director Mel is coming to film as we are starting to film for a second documentary.

Which brings me to Donor family network, They are holding a event where lots of donor family's come and remember there loved one, theres a point where transplant patient's poems ect about there donor are read out, I'm attending to read a poem and piece about my donor and how they saved my life. I think this is going to be extremely emotional but a brilliant event and Mel is filming there as well.

Other then that I have been working out hard, 5 fitness class's a week,  LBT, core stability, 2lots of Stretch and tone, Fitball next week I'm doing 2 lots of LBT, I must be crazy I also do an hour cardio before or after and then one day a week I do a full 2 hour work out. Its going really well, I feel fit and it makes me feel good.

I'm Also back teaching pole, but wanting to increase the lessons I'm doing as I didn't start the charity fundraising job in the end I simply have to much coming up with the doc and charity work, so I'm doing more pole lessons as there more flexible and i can simple ram a load of lessons in one or two days and have the rest of the week free for all the media stuff I'm doing. I'm hoping to do some work experience in PR with RD&E, CFT and a possibly a hospital nr Harefield and I also have some behind the camera work, which My director Mel is arranging. So bizy bizy

10th chat
14th Zest
Reveal date not know yet
bbc news
This morning
TV times I'm presuming the week of the doc

Finally the ball, I have started arranging a ball, for LLTGL The ball is hoping to have some celeb comedians and great bands.

So I'm going to leave it there, I'm still waiting on Stuarts blog, hes finding it a bit hard, but as soon as he writes it I'm posting it.

Wedding

In the run up to the wedding I'm finding myself increasingly bizy, there is always little things to do and you soon run out of time, being a not so healthy bride, doing all the little things is really hard. I'm worried It will get to the day and Ill have forgotten something, let alone the worry that I will be really sick. Not only am I attempting to walk down the aisle but I have to come down the stairs of the balcony next to my room and then make it to the aisle. Its a fair distance. If I can't make it Iv decided my dad might just have to literally give me away by carrying me up the aisle first. Lol a sight to see. Iv been told all brides virtually run down the aisle and its far to fast and not in time with the music, at least I won't have that problem. I am going to pace pace pace and before I attempt all this I will be resting on my bi pap for all of the morning.

Also in the run up to the wedding ITV and Documentary team are filming me, ITV west country are keeping updated with my story as they have followed me from the beginning when I went to Harefield for my assessment and hopefully after when I get my transplant. Also the Documentary team are really keen to film all wedding related stuff. Needless to say this is very hectic and I do wonder how I'm coping in doing it all. But It gives me purpose and drive and I feel that's so important at the moment. I just hope it all pays off and people sign the organ donor register.

No wedding related stuff, my peg looks like it will be going ahead, no weight gain at 50.6kg and I just can't keep food down between all coughing. I'm really finding the thought of food most of the time almost repulsive as the feeling of anything in my stomach leaves me bloated and struggling to breath as it pushes my lungs up and squashes them, which also leads to me vomiting. I sometimes get a hunger on and when I do its really nice especially if i manage to not feel sick and bloated. A rare thing. Also in clinic my resting heart rate was 150, i felt very shaky and I get this alot. I hate feeling shaky. Otherwise all conversation was on wedding related things and how to keep me as rested as possible as there worried I'm going to run off adrenaline and burn out in the days after, something I'm pretty sure will happen. Oh and benefits, well that has got no where, more forms and frustration.