Even the sickest of us can donate, think about it.

So something I wanted to post about today was organ donation, despite obvious reason that i am hoping to receive a lung transplant if i am to get on the transplant list. I also wanted to post about it from another aspect. Me and my nurse were chatting away the other day and she asked me if i thought about donating, I said obviously I wouldn't be a very good advocate for organ donation if i wasn't willing to give. We discussed that with the way i was likely to die with CF, I would be a non beating donor and therefore would not be able to donate my heart, but possibly the valves, I would be able to donate my kidneys and many other things. Even the sickest of us have things we can donate. Despite this sounding like a morbid conversation, it wasn't. Death is a very likely prospect for me and if transplant can't save me then perhaps i can save someone else through it. That would make me very happy indeed.

So those of you who thing you can't donate, its a myth, there are very few reasons people can't donate. Those who have organ related disease there are still other organs that are transplant able. Those who smoke, you can even transplant a smokers lungs, vigorous tests are done on all organs, they won't transplant organs if there deemed not suitable. But this shouldn't hold you back from signing the organ donor register.

Those of you who have other reasons holding you back from signing the donor register, they won't try to save me if I'm an organ donor? Yes they will, no body's life is more valuable then anyone Else's. Every one is equal in a doctors eyes and they will try there hardest to save you, but in the tragic event of your death, you might be able to save someone, you might be able to give the greatest gift of all, the gift of life. There are many other myths of organ donation. please check out www.lltgl.org.uk to dispel them and if you wish to sign the organ donor register please go on to here. It takes 2 minutes.

Please just think about it. The gift of life is the greatest gift of all.

Blockage, IVs, ITV, Wedding

Well Saturday was an interesting day, My blockage did not fix its self, I had to wait around till 11:30 am rolling around in pain, till i could go to the hospital to get things sorted. I had to wait for my oxygen to be delivered and two different lots of IVs which came with two different delivery men, why i dont' know. In the mean time waiting around in pain with my nan, trying to ease my pain by rubbing my back, i decided to put an NG tube down and try and flush some movical and lactolose down as i couldn't tolerate swallowing as i felt so sick. I got the NG tube up my nose, down my throat and into me stomach no problem, which was surprising as i had to stop NG feeds a couple of months ago due to inflammation in my nose. But then my nose starting flooding out blood, dripping everywhere. I got the movicol and lactulose down but then 15mintues because the blockage was so bad i vomited everywhere. showing me it was getting really bad. I went into the hosp and they x-rayed me, gave me a paracetamol drip which is just as powerful as morphine but much nicer and less side affects. I then went on to have the gastrographin, awful tasting stuff and things started to clear. they wanted to keep me in Saturday night but i felt far better and had to sign discharge forms as it was against there advice. Things are now fine.

My breathing is far better, I'm hardly needing to use the 02 apart from today, a blip I'm sure, I'm now on amacacin once a day IV and cipro 3times a day IV. I had a home visit yesterday from the cf nurse which was really helpful as iv had to go to the hosp far to much recently, I had lung function done, which was 31%!! whoop whoop. I'm very happy with that. I also had my port bung changed  and bloods. We discussed how much longer I have to be on IVs for they want to do a full 2 weeks of the amacacin so i will have been on IVs 4 and a half weeks by the time i finish.

Today I had my interview with ITV, it should be aired mid next week, but i will update you all on that when i know. The interview went really well, some very hard questions asked, facing my own mortality and how i felt about it, but I'm all very at ease with these sorts of questions and simply said positive, because I'm going to get a transplant and I'm going to be OK, its the only way you can be right?

Also I HAVE A WEDDING DATE!! 16th of June. I cant wait, I'm going back Saturday with the females of the family so they can have a look round, but its all decided and booked. I'm so excited. I can really start going over the finer details. I will be Kirstie Tancock! ITV have asked to do a small bit of filming on the day as they think it will be nice to get that as an update. Iv agreed as it is More publicity for CF,transplant and organ donation and also the wedding venue will get lots of publicity and be inclined to give us more discount. which seeing as we lost £300 pounds from our Cyprus wedding, discount is very helpful!

So I will leave you with that for now, please comment, I like comments!

Pain

It twists and turns, i roll in agony. It feels like some ones ripping my insides out, tearing away at my stomach. Tonight my lungs are taking a back seat and my stomach has decided to give me a beating. Another common cf problem is blockages. With the thick sticky mucus that lays in our intestines mixed with the fact we do not obsord fat without creon, when doses are sometimes off or your on regular high pain relief like me. Your stomach can become blocked.

Sometimes there are signs, a few stomach cramps and a drop in frequency to the loo. For me i always get stomach cramps so its difficult to decide wht ones are wht. I missed all signs and insteed woke in a sweaty, painful mess. Im only able to write this as iv taken lots of pain meds and the pain is discised for a while. I was in so much pain i couldnt really move, stu had to get me my various meds to help me. Movicol, lactalose, senna, tramadol, paracetamol and metacopamide. 3 different laxatives that im not sure will do anything, 2pain reliefe that are working as im not hullusinating with pain, altho i am unsure if this makes sense and anti sickness as tramadol makes me sick and the fact that nothings goin through but im still putting stuff in can make u feel rather sick and i have no chance of clearing this if i cnt keep the meds down.

Cf blockages can end up in surgery so i have to shift this, its not laughing matter. Mine have a tendency to escalate fairly quickly but iv avoided major bowl surgery so far apart from when i was born with micolium ileus.

The pain is still tearing away, i cnt cough as that hurts, but i need to as i cnt breath. I hoping that this clears, i here stu fart in the other room, im jelous, if only i could have some sort of bowl movement.

Well its now 4am. Nothing. All gurgling has stopped, pain barable.

I have to be up in the morning and drive my self to the hosp for my second dose of amacacin. It will be the first time iv driven in 4 weeks, i dnt like driving when i feel really weak. So i havnt but no ones around to drive me 2mz. They might have to if im still like this. Im also suppose to be goin for a coffee and catch up with my friend neil, hes in on culm and also has cf. Hes like a brother to me.

Nothings happening, im tired and may try and sleep through the pain,i know it will be worse later when i wake but im tired and the pain maybe barable enough to sleep.


When writting this blog i knew i would hold nothing back, so there are my pain filled ramblings, im not even sure it makes sense but its real, its honest. It sucks.

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Oxygen, wedding, R.I.P

Today has been such an exhaustion. Iv had complete highs and extreme lows. This morning I didn't feel awful, the night had been horrible, waking feeling myself gasping for breath and just feeling like i wasn't getting enough air in. I  just had no energy by the time it came to morning and my IV treatment means I have a very small window of time to sleep and then its interrupted with IVs, at least Stu does them for me alot of the time because he realises just how little energy I have now days and wants to reserve it for the nice things. I didn't have the energy to stand in a shower but had to make myself presentable to go and view a wedding venue. I slowly got my self ready and we set off, my lungs weren't great. We looked around the wedding venue and It was perfect i felt so happy and now I'm just getting more and more excited. Me and Stu shared a kiss out by the lake and that sealed it, it was our wedding venue and my smile was from ear to ear. But on the low note, i realised when walking around this relatively small venue and just in between when standing there, my lungs were struggling beyond belief and i really wasn't having a good time. It took me ages to recover from the small wondering around and standing. It really made me feel sad, it worried me as to what id be like on the actual a wedding day.

We then made our way home, I was in a bit of a state with my breathing, things only felt like they were getting worse, we had some lunch at a cafe and i couldn't eat because i felt like i couldn't breath and felt really ill. We then got home and Stu ordered me to bed, feed my paracetamol, tramadol, anti sickness, anti itching (because the tramadol makes me itch like mad) I sat there and i cried, not the loud crying, but the sort where you just let the tears drop down your face, Stu was so worried about me bless him and doted on me every second. For those who know nothing about my fiance, I just have to say he is amazing, he cares for me so much and iv never felt so loved my anyone as i do with him apart from my mum and nan. There are many who wouldn't do the things he does just to help me and for that I'm truly gratefully. Anyway he then went on to insist that i cancelled my lesson that evening as i was lying there still out of breath. I reluctantly agreed. I then text my mum letting her know how i was feeling, i only usually text her if I'm really feeling abit tearful and know talking out loud will make the situation more real, like now and i was just feeling awful. I said i felt so out of breath and I need oxygen, I need it at home. I can't cope without it. My mum then rung the CF nurse who then rung me and agreed that if i my symptoms were worse out of hosp and I was continuing to decline then she would arrange oxygen, I feel so relived to be getting this finally. Iv felt like iv needed it along time, but felt stupid to ask and when i have asked in the past they have always said i didn't need it even though they hadn't done a oximitry test in ages. I guess i feel like such a hypocondriact asking for it, even tho I'm not and i clearly do.

The team have also decided to change my IVs again as there just not doing anything and iv started getting temperatures again to. They did say about bringing me back in but i said i just couldn't, i couldn't do it yet, I want to be home, no that's wrong I need to be. I need to be with my family. If i carry on getting worse over the weekend iv been told not to let it get awful and to ring the ward as there is a cf doc on and they don't want me getting really ill again especially as having the home oxygen as it will make me feel better so make me not see my symptoms and not recognise when I'm getting ill er until I'm really bad again. There wasn't any indication of when i would finish the IVs which i don't mind staying on them as long as they actually start working.

So tomorrow I'm off to the hospital to get all these things sorted.

My worries another thing I'm really worried about and may have mentioned, is that I'm going to carry on getting ill er over a very short space of time and that no IVs are going to work and that I'm going to be stuck in hospital. I'm just so worried about this.

Some more sad news a fellow CFer has died, I didn't know Lauren but read her blog and always wondered how she was doing as she had been so ill and hadn't blogged in ages. She was only 19. She looks so young and she was 19 is no age. She hadn't had the chance she deserved and i hate CF so deeply for taking Lauren. So please just take a minute for Lauren and send her your prays and hope she is breathing easy in heaven. I'm not a deeply religious person, but i do believe in god in some form and know that Lauren is now out of pain and suffering.

BREATH EASY

Happy Post

World!!!!! I AM HOME! (that is if the world is reading) Yes I have made it home and words can not describe the sensation and happiness that i feel. Complete again. I walked in to my house, Kia had already been dropped home by my nan and all i could here was here scratching at the front room door crazily, wanting to charge us and hug us. I opened the door and she flew out to my arms and licked my face and wrapped her body around me as much as she could trying to crawl up my body to get into my arms, more like a cat then a dog could. Kia is not a big dog and some of her behaviour is rather cat like sometimes. I picked her up and she was still trying to climb my body so she was latched around me neck. Oh I felt to happy, to know she knew me still, that she loved me and that had been waiting patiently and excitedly for me to get home. She then realised her daddy was there, who she had only seen once in the two weeks and it was now Stu's turn to get hugs and licks, she tryed to squirm out of my hands and into his, you could see he missed her to. She looks so pretty at the moment, she had a hair cut last week and its just started to settle and she is looking fab. I will upload a family photo of us when i get one.

Me and Stu then proceeded to unpack, with kia cuddles in between, we had a lush valentines meal in, all 3 of us snuggled on the sofa watching the wallstreet films. Perfect.

Before I left hospital, it was decided that since my lung function had dropped from last week, that i would have another IV drug at home along with the one i was already having, Its a long shot as it doesn't usually make much difference but hopefully it will do something. I'm now on 5 antibiotics in total. No wonder my skin is an itchy mess (I'm allergic to lots of things these days and they cause horride exma) I do not have oxygen at home, I'm not sure if i need it at the moment, we will see how the next couple of weeks go and if i start to feel like i may need it we will do another 24 hour oximitry test. So that is all for now.

Big health update

Well 13 days of IVs and usually I should be feeling my best, but things just aren't going to plan, the IVs helped up to a certain point but then i developed this nasty cold and they stopped and as of today I have started to decline again, I had managed to pretty much get off 02 but now my heart rate is jumping up to 160 at resting and my oxygen saturation's are dropping into the 80ies or at least they have been today. I was thinking id need 02 at home but I didn't think id be needing it when I'm suppose to be at my best, toward the end of IVs. I'm worried, worried I have picked up a new bug, worried the IVs that i already knew I was resistant to have now just stopped working. My flem is thick and is making me feel like I am drowning at night, but to tired to clear, i let it carry on as I lay there gasping for breath and trying not to panic as I'm simply to tired. When I say to tired I mean the sort of tired where you can't even move, you can't even open your eyes, that's where I'm at. My body is exhausted again and my lungs are full to the brim.When I finally wake, i try to stay calm, not let myself go straight into a coughing fit, but i can feel all the flem choking away and it begins, usually i just hit the bathroom at this point, theres not point trying to catch the flem in tissues, its thick and flying out of my mouth when i finally manage to bring it up, my chest relentlessly aching away, my stomach starts to twist and turn as my muscles go into over drive, there squeezing on my stomach and I'm willing, begging, don't puke. As the flem comes up the gag reflex kicks in and sick is flying down the toilet, the sick is mixed with flem that i have swallowed in my sleep and this just makes me feel sicker. I try to stop, try to relax my stomach, but once its started its so hard to stop. My stomach is in pain now, its trying to stop but i don't know whether the trying not to vomit only makes you vomit more sometime and whether just going with it might make it easier. In between the vomiting I'm still coughing away trying to bring up the flem that is drowning me.

Its all just to much now, my legs are shaking trying to hold me up, I wish someone would come and hold me up now, rub my back, relax my body. I feel weak, my face is red. I collapse on the bath room floor and just stop for a second unable to really breath, stomach still in uproar. Just hold it in a second, then it starts again and now I'm trying not to pee, as my stomach muscles are holding in my bladder at one end as the relentless coughing is making them want to let go and trying to loosen on my stomach so it not squeezing and inducing sickness. These are often the mornings for me but it shouldn't be like this at the moment, I should have some respite from this daily on slaught. Eventually It stops and i collapse for a while back on the bed, feeling exhausted and that sleep has only made me feel more tired as the waking process is so brutal.

It worries me that i feel so chesty again and I'm not even off these powerful drugs. I wonder if maybe there is no rest anymore from this tiring effort.

The plan for going home, is tomorrow, I'm going home on home IVs. simple premade packs of IV antibiotics that i will carry on attaching to my Port(click to find out what a port is) 4 times a day and run into my blood stream filling me with the harsh drugs that don't even seem to work anymore. I'm worried that I may be back in here very soon, as the IVs seem to not be working, I'm worried things are going to start declining quicker, I'm worried that one day I will be at a point where I'm stuck in this place all the time, unable to leave until transplant or otherwise. I'm positive, I thing I will get a transplant hopefully fairly quickly and I will be OK but you can't help think what if it doesn't happen?

I have also depeloved the CF sinus problems, I haven't ever really suffered from this, but I seem to have developed them, first it was not being able to put my ng tube up my nose to receive my night feeds (to get my weight up) the passage had become swollen and to narrow to pass the tube, then about 3weeks ago I was getting what I call face ache, the parts of my face where my sinus passages sit under became painfull, coughing hurt my face because of the pressure. Then with the dryness of 02 it has dried up my passages which iv been told could have sinusitis so now there are clogged with thick musuc and finding it hard to breath, plus a bog standard cold on top has not left things in a good shape, so where I am with all that at the moment is constant nose bleeds, thick plastic, bloody lumps coming out of my nose, I feel like my nose is falling apart like some coke head!! Its rather frustrating and I'm waiting for the ear, nose and throat specialist to come and have a look and give me something, maybe some nasal spray and Wash's. I have to say this update is turning rather gross, I feel like a big mucus monster!! but that is CF, flemmy, sicky grossness. :-/

With the fact that I am now unable to NG feed and have not been able to for several weeks, I feel my weight is going to become more of an issue, I was holding my own and feeling pretty proud of myself, but now my weight is dropping 52kg not a good wieght for my 5ft 8 height and the a gastric feeding tube is being mentioned (click to find out more about the different types of feeding methods NG and gastric) I'm not keen to say the least, iv put it off for ages but if i carry on dropping then i will have to just bite the bullet and do it, transplant is the way I want to go and with out a decent weight I won't be accepted on to the list

I heard back form harefield last week, my next assessment app is on the 14th of march, not long now, one month. Ill b up there for 3 days with hopefully Stu and mum as theres so much that will be said its best to have them both there to hear it all so i don't have to relay it and miss loads out. They said that when they got my bloods back they found antibodies, for those who know about transplants antibodies in your bloods are not the same as blood types, iv had many people confused over this, I have 25% antibodies, this is not a good thing and appaerently not all that common, it means it will only lower my statistics on receiving a transplant, as I cannot receive a transplant off of 25% of the population thats 1 in 4 people. Harefield said this is most likely to result in false alarms as they will match me to a donor and then find out after they have called me that I am not a match because of the antibodies. I know this is not great news, but with transplant I always expected there to be obstacles and although I'm not a match for 25% there is a whole 75% that are and that's a pretty good figure right? So although I was originally upset and confused by this, I am feeling OK about it now.

I believe that is all I have to say for now, apart from if you've read I would love to hear from you, I really like getting comments and it fills in the long hours where I sit here alone, I am alone alot, whittling down the hours, I sleep very badly in here and tend to stay awake for large parts of the night and when I get a comment I always get excited. So if you have commented thank you and if you haven't i hope to hear from you soon.

4:48am this is how I pass time

Well it is now 4:48 am and i am not asleep, I have been having sleeping tablets for the last 2 nights and had blissful sleeps with them, but i decided to give it a miss tonight and here i am wide awake, but hey, I have nothing to be up for in the morning, so while some of you are out there partying tonight, this is what I got up to in the earlie hours and I have to say It was fun.



Sadness

Today I feel so drained, emotionally physically. Things are not going how I want them to. I feel the weight of the world is sitting on my shoulders and even that feels like it would be enough to weigh down my breathing alone. Sleep is not smooth and doesn't bring the break from life that i need at the moment. There  is no down time, no calm. The struggle feels relentless. I feel.............scared, scared to go home, I feel it looming on me and it scares me, I'm worried I won't cope at home on my own, I know I have Stu there, but when hes working I'm alone, my mum is my carer but i feel guilty calling on her, so often, so i feel alone and theres no one to help me with the general day to day things. Like getting up, cleaning, cooking. If there is no-one there to help i feel simply to weak to. I feel so lost in this body of mine, when did the simple act of living become so hard. At the same time as wanting to stay here and let people help me, I feel so desperate for home. I want my home comforts, I want my Stu, I want my puppy dog. I crave a cuddle form my crinkle cut pup so much and miss her smell, its a a nice puppy smell, I always think she smells amazing apart from when she farts lol. Thinking about her is actually bringing me to tears. Its so silly, but shes with me so much of the time I feel rather lost without her, we know each other so well, she truly is the best companion. I worry she will forget where her home is, she stays with my nan and grandad when I'm in hosp. Will she forget me, will she want to stay there with them, what if she doesn't love me anymore.

Oh the sadness is coming to the surface now, I long for home, for the simple pleasures, I long to have a bath, to wash away the sadness. I somehow feel a good bath will sometimes do that. I may ask my nurse if theres a bath on the adjoining ward I can use. Perhaps a good soak will ease my mind tonight and let me drift off to sleep to a perfect world, where I am not ill, I am not in hospital, but I am with my amazing fiance and beautiful pup and my heart can stop aching for them.

Tomorrow I hope to wake and feel less sad, I wont wake and feel magically better but the sadness is only temporary.

Press

Well i am definitely getting better, slowly, slowly this time. You always wonder after a bad bout if things will quit be the same afterwards. I think I can probably safely say no, but things seem to be changing so rapidly these day, sometime change comes with out a batter of an eyelid. I believe the new addition to my life will be oxygen at home, I have been heavily dependent upon it this admission and even before I thought its presence in my life was possibly needed. How do i feel about oxygen at home. Possibly relieved, I struggle so much with walking around, extreme breathlessness and stupidly high heart rate that sometimes makes me feel as though my chest is to explode. I hope that oxygen will help.

Slowing down the recovery rate is the nasty cold I have managed to pick up which leaves me in a right state when I wake, very bad blocked sinus's and I end up having chucked my nasal specs across the room as there making my blocked nose feel alot worse. It is a tricky business keeping these things on at night.

Also this week i have had a fair bit of media attention surrounding this blog, I have had a article in the express and echo which has led to ITV contacting me wanting to do an interview, I think this is really exciting, iv featured on the news before and I think it did alot for cf awareness. They also want to interview my doc who came in here asking me what id got him into, with a little smile on his face. He a great doc and a good sport so hes quit happy to help, he also volunteered my cf nurses, one of who was there and said she best have plenty of notice so she can sort her lippy out, lol.  Being ill is always made alot easier when you have a reliable health team by your side, having known them all for so long as well it also makes it easier to talk in a frank way when your perhaps not so happy about things, something I'm very good at.

Also with regards to the ITV interview the hospital communications had to be contacted to let them know of the possibility of filming in the hospital and the whether it was ok to interview my doc, with regards to privacy and whether it would interfere with my treatment, my doc said he realises its very important to me and gives me something to focus on which is very good. The communications people said i could be letting myself in for alot more than i realise and it could be a great intrusions on my life. I understand this, but if I'm not to let you all in then how will you ever understand what my life is like with cystic fibrosis and trying to get on the transplant list and then waiting for those all important lungs. I cannot simply expect people to understand if I'm not willing to show them and that would be a great contradiction on my part. So here i am writing my blog letting the world in, if the world doesn't like it  i can then blame it for its ignorance.

Other things on my mind, Iv started to get the itch feet, sitting around in hospital is not my cup of tea and I have to say I haven't seen much of the outside world but today we ventured out to Stu's parents, its nice just having the homely and its made me feel alot more sane. I'm basically planning for home for Monday the 14 valentines day. The team thing another week of IVs on top, which is fine with me, I'm so used to home IVs and the only time i feel half decent is toward the 2nd week of IVs so another week of them mean possibly a whole week of feeling reasonably OK.

Urge to Blog

Rushing the laptop on just to get to this page as i feel the sudden urge to blog. A rush of words coming to my mind and feelings I feel I need to write.

Today I am sick, I escaped the hospital for a few hours with my gorgeous fiance to go view a wedding venue, 02 at the ready, make up and hair done. An achievement for me as the last few weeks have been truly make up free. i wanted to look nice, these people could potential be hosting our wedding and i wanted them to think we were nice people. You know a wholesome couple (chuckles and sighs to self). The wedding venue just wasn't right, but then when your original plans are taken away from you i wonder whether anything will be right in comparison. But no it wasn't Cyprus, i knew that, I'm not daft. But it just wasn't right either.

We then stopped off in eggesford forest and chomped on some rather tasty pastys. I was starting to feel unwell at this point, getting cold and my head started to feel blurry as i like to describe it. I turned the oxygen up a notch and felt my head ease and my breathing. The drive back i sat in a haze not really wanting to talk, feeling very tired and poorly at this point. Finally we made it back to which we cuddled up on the bed and feel asleep, make up removed, hair slung back, joggers on and Stuie cuddles to ease my chest pain and temperature. Stuie does make an awesome pillow and always makes me feel safe and less stressed.

The last few days have been good, not in the sense of health, things health wise are continually up and down and i know i am getting better but then i seem to take a few steps back like today. But i mean mentally, the appointment coming and going has put me in a really good place. I realise now, that I'm not going to slip through the net because i always look so well, something that is certainly not true. But i have a really good chance at my second chance, so for that i feel utter relief, I have had some truly big smiles on my face, i know where I'm going now and i am determined i am going to get there. Its only now that i can see how stressed i was about the appointment, now that its over and i have the answers i wanted.

Also I have been receiving some amazing feed back from this blog, people being truly supportive, I started writing this blog more for you, the reader than for me, to help you understand things you may not have otherwise, about cf, transplant and organ donation. But now i realise I can draw strength from everyone out there sending there support and love. So thank you for that. Iv also managed to reconnect with people who i used to know from my old centre in Hillingdon, now nicknamed Killingdon (yikes) I am also having an article in the express and echo on me and this blog and there to print my blog every now and then in the paper although we are unsure on frequency yet, but i find this very exciting.

So although i feel very poorly, I'm feeling very positive as well.

Good candidate

Waking up at 6 in the morning, 4 hours sleep. My lungs were grumpy to say the least, sats were 90 on 3 litres and i felt like shit. The journey was pretty good, the ambulance guys were a great laugh and I soon forgot about my nerves. Arriving at Harefield 11 o'clock, fear and nerves flooded me again. I had bloods, ecg, echo, xray and lung function. My lung function came out at 22% I prefer there lung function machines as the technique got me to relax my lungs first so i was able to get more air out.

I then had some food with my mum and our friend Anne who lives near Harefield and popped up to say hello. We then went back and they did my IVs it was 3pm by this point and i was knackered and had a nap. Then i went in to see one of the docs, he talked through everything transplant related, Ups and Downs, pros and cons. I Knew i still wanted it. Mum was looking a little green if I'm honest. He said I was a good candidate, that i fit the criteria for ill enough, that i am also well enough although there are some things i need to target, my weight is a little low, but this wasn't a big issue, my steroids need to come down as there to high and effect how wounds heal and infection surrounding them, this was something i had not thought about and do not look forward to coming down from these, I feel alot worse trying lower my dose. Also they did mention that my heart seemed to be working very hard, but I hope this will not affect anything.

So the plan from here is to go back in march for 3days and have lots of tests and then is all is ok I will be on the active transplant list. Which i have to say I'm so excited and happy about. I came out of the room beaming, feeling relief and happiness. It seems so real now i can almost touch it. Just imagine what it would be like if i actually got that call.

So now im back on culm in exeter, really tired, but totally starving, there is not alot of food options at 10pm in hosp and im fussy when im not feeling great, the nurses don't seem all that bothered that iv not eaten alot, so i will have to sort something out, maybe a takeaway delivered, before all this hard tryed for weight disappear and then the transplant team will have a big issue.

Id just like to say thank you to my new followers, new comments and all the support from my friends, family and especially Mum and Stu,

Me on way to Harefield this morning A very good night from a sleepy Kirstie.

Hospital

Well i know i said i probably wouldnt blog till after my app but alot has changed. I am in hospital on oxygen, i got brought in yesterday by my nan and grandad, very poorly. I was struggling to breath, heart rate was extremly high 160 at resting sats in 70ies on popping to the loo resting at 86% temp 39.5 after paracatamol. So i guess i left it to long. I feel really stupid for not starting IVs sooner and rung my cf nurse in tears yesterday worried harefield would not assess me in this state. Iv had lots of phiysio, nebs and the 02 has made the world of difference. Im still goin to my app but will be ambulanced up 2mz morning with my mum, they said i prehaps shoud wait till im well bit my team said, i have such a short window of time when im well i could end up waiting a long time and missing my window of oppertunity.


So thats all for now.

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