Ambassador Kirstie

I had a weird moment yesterday of sitting there and thinking that call could come anytime now, It was a great thought that this nightmare could be over and i could gain my life and independence back. But the phone didn't ring and i know it will be like that most days, just thinking maybe the phone will ring, but it doesn't. But i hope and I'm positive it will, one day. If it doesn't then i hope I'm changing the world, like i always said i would. I hope all my work will mean no one else will have to wait in the uncertainty off transplant and waiting for a call that might never come, I hope one day it will be almost a guarantee that you will get a transplant. That everyone will consider and sign the organ donor register willingly and happily give people the gift of life.

Which brings me on to my happy news that live life and then give life charity which supports organ donation have made me a ambassador for there charity, i quit like the title, it almost sounds regal don't you think? You can call me ambassador Kirstie if you please, I'm waiting for my official robes in the post, i imagine long ones with stars on shoulders??? lol no that's all a bit of a joke, although they will be sending me a t-shirt with the slogan 'I'de give you one' on, as in an organ that is you filthy minded people...lol. My role is generally what I'm doing already, but i feel like I'm receiving recognition for it and part of a team. So Ill be raising more awareness and hopefully appear on your TV screens even more regularly :-D for those of you who may be sick of my face....tough. he he. I really am happy about this role and feel really humbled that they thought i was doing such a good job, so thank you lltgl and I hope I make you proud.

I'm now on 3 IVs, long lasting morphine, for pain control mostly, but as its also suitable to ease my breathing, which will help me sleep more comfortably. I'm virtually stuck on my oxygen 24/7 apart from when my nose has really had enough and i whip it off in frustration, I don't last long with it off and start to feel uncomfortable quickly. I'm also using my niv (non invasive ventilator) which i usually use for physio,  to have a rest on if I'm struggling, this means it will just give my lungs a bit of a rest when I'm really feeling tired with my breathing. I like the sound of this and I'm glad to have this option, just to rest every now and then when I'm really feeling awful as the simple act of breathing can feel so hard sometimes and that my lungs and muscles around are really not up to doing the massive job of moving theses sacks of crap. My home concentrator is now sorted as is my liquid oxygen.

I still cannot walk anywhere and yesterday I decided enough was enough and i should get a bath, this was like a military operation, my nurses had to sort all my stuff out and take it to the bath room for me, they had to run the bath and get all my washing stuff out the bag for me and then they even offered to stay and help me wash, i had to draw the line here, I'm not against my mum, sis or Stu helping me every now and then, but theres something about nursing staff having to help you wash that feel undignified and embarrassing, its not the fact that your naked, i have no issues with my body and often showered naked at the swimming pool, but it the fact that there helping you wash. It just feels wrong, like every last thing is being taken away from you and i can't quite do that yet. Once I was out of the bath they came in and tidy ed back up and got me back to my room in the wheel chair, this simple task was so draining and i proceeded to have a nap.

Were trying to sort out my home care at the moment, Iv got this big meeting Monday, discussing way they can help me at home, such as physio 3-4 times a week, helping me bath and shower, as in the build up to having a bath and afterward, drying your hair ect, which is all so tiring, washing and cleaning, cooking and any other things i might need doing which we can think of, which will help conserve energy and keep me well.

Well i hope I get home next week, my progress has been slow and I'm only starting to feel a little bit better over a week after restarting IVs, it has been a truly tough one this time and I don't think I will risk coming off IVs again. Its left me rattled to the core and scared that maybe I really won't make it to transplant and I have to do everything to keep myself as well as possible to preserve that chance. I will keep you updated on my progress, thanks for reading.

Yours sincerely
Ambassador Kirstie ;-)

Scared and alone

I feel the need to write, like some how it will erase my mind and the thoughts will stop. I don't feel brave tonight, I feel alone, I miss Stu and my Mum I wish one of them was here to cuddle me to sleep and tell me its all OK, that we will get through this, sometimes I can't always be Strong for everyone and tonight this is one of those night. I don't feel like I'm getting better, just plodding along in the mess and nothing will ever get better only worse. I hate that cf is at the for corner of my every thought and every status update is about how ill I feel. I hate that I have no good news, that i feel utterly rubbish and desperate. I can't write anymore. So totally alone in this hospital room. Don't get me wrong tomorrow I will wake and I will be ready to face the world again, strong and determined, but tonight I'm taking a break.

Hope

For those of you who saw me on Russell Howard, I just wanted to say thanks for coming and having a read and all your positive messages and thanks to Russell Howard for putting me on the show, being on Good News means that my message has reached a whole different audience and getting many more people thinking and talking about organ donation, if you would like to sign the organ donor register then please click here it takes 2minutes to do, but you could be giving the gift of life. Also please tell your family your wishes! If you don't but have signed the register, it could all be a waste of time, if your family don't know your wishes they have the right to say no to organ donation.

My lungs are full, full to the brim of thick sticky mucus, as i breath i can feel the huge rattling effort of my lungs trying to expand. Things feel different this time. Just when you think you've got use to something things change. Every now and then i get up out of my bed to get something of the side and I'm sent rebounding back as iv forgotten about the nasal specs around my face and the drip stand attached to me 24/7. I'm scared to walk anywhere, scared to make my lungs work, I'm scared of the consequences and the feeling of gasping for breath and the panic that comes with it. So I haven't I haven't even tyred to walk to the canteen this time, the toilet and the shower room are as far as iv made it and even the shower room was a very reluctant effort as I'm not in my usual side room the shower room is quit far away. My oxygen saturation's are overall worse and i have been wearing the oxygen alot more. I feel like things have been deteriorating so quickly recently, I wish I could just freeze time, make it all stop, but i can't so I'm holding on to the one hope that will stop this all in its tracks, a transplant.

We'de like to offer you a place on the lung transplant waiting list

We'd like to offer you a place on the lung transplant waiting list, a sentence i have been waiting to hear and when it came i could feel the tears coming to the surface. Something I have been waiting for so long now, iv felt on edge and nervous, waiting to know. But now the decisions are over the verdict is in. I will be on the active list as of Monday once all the paper work is finished and from then, i shall try to forget that I'm waiting for a call.

On other news, I had an awful night last night, sky high temperates, racing heart of 140-160 and 02 levels of 90 on 02. I was gasping for breath and clearly in distress. I had bloods done, but that's all. I think times like these when i was clearly unwell i should have blood gases done. I felt so out of breath and ill. Once I cleared my lungs, my temp came down, my Sat's and heart rate started to settle and i felt i could breath. I think it was just my lungs were so full with Flem over night it sent my temp rocketing.

I'm hoping to get home earlie next week but I'm having a meeting with my team and a few other people to discuss ways I can stay at home and how they can make it easier for me. I hope this makes life easier. I also started filling out esa forms today, to claim some money as I can't work any more. Its impossible, i hate them and there driving me crazy. They don't make it easy for you to claim when you really need it. They also sent through a form for council tax benefit and housing benefit i don't know if I'm entitled to it but ill fill out the form and hope i get some money. I don't know how I'm going to live for the next couple of weeks, its going to take a while to get any money through. The last thing i need is money worries..

Hospital, daybreak and giving up work

Well 6 days off IVs and out of hospital and I am back in Exeter rd&e, my lungs well and truly got the better of me. Struggling to breath, I was unable to stand this morning when my delivery of IVs came and had to sit on the floor while the deliver man sorted through everything. I simply was so breathless I couldn't stand. Iv decided the stairs in my house are now my enemy and I am unsure what to do about it.

By the time I had got back to bed after the delivery I was in a complete state. I was shaking with breathlessness. Unable to even sort my tubing out for my oxygen as I fumbled around panicking. kia curled up next to me and after 20minutes I decided I would ring my mum. she made her way round straight away, there before 9am, telling me enough was enough, it was time to go back to hospital, it was no good that I was so scared to even be on my own and I needed to be in hospital. I eventually agreed after tears streamed down my face as I said kia wouldn't know who her mummy was, she would think my Nan was her mum as she stays there when I’m in here. My mum said that’s not true, I was he mummy and she knew that.
I’m on tobramycin and cipro IV. Were going to try a few new nebs while I’m in, just to see if they make a difference, meropenem neb was mentioned. My doc just wants to keep me at a reasonable level where I feel safe and comfy to be at home.

I really have to say I’m get scared of all this constant infection.

It became quit obvious to me last admission that I was not earning enough money to survive, with barely managing to teach any lessons and the ones I was teaching I feel I am sometimes seriously putting my health at danger as I’m pushing my body so hard, when I physically don't feel well enough. So I have officially closed my accounts and I’m trying to claim esa, if I do teach any lessons it will be with what I’m allowed to earn whilst on esa, but I don't think I will be teaching that much if at all, at the moment, I don’t feel I can.
I’m really sad about this, but I’m trying to think of it as a positive thing, a chance to rest, enjoy time with friends and family. I don't want to just sit around all day, so I may look into studying, or things I can do post transplant. I also really want to concentrate on raising awareness for organ donation.

Also this week I’m meeting with express and echo as I’m now the face of there organ donation campaign inspired by me and doing a follow up interview with ITV west country about going on the active transplant list on the 28th (as long as the surgeons give the a ok Thursday) For those of you who missed daybreak here’s the link daybreak Interview.

I can't wait till Thursday when ill know a 100% that I am going to be on the list Monday.

sick sick sick

Why does cereal make me so breathless? A random start to a blog i know, but i love 'start' cereal, but as soon as i start eating it it becomes a huge effort and i sit there and wonder why i ever liked it apart from the fact it is really yummy.

Ok so my whole blog wasn't going to be about cereal. I'm  sick sick sick, yes i know, its a bit tedious hearing those words, you probably all wonder when I'm not sick, well i wasn't sick for about 5 days while i was in harefield, on my reserve drug, I then decided after about 7-8 weeks IVs i needed a rest. Big mistake. I cant breath, I'm using the oxygen alot and getting rather annoyed as i have to restrict the amount i use as I'm scared it will run out and then if i need it desperately ill have none left. I went out today with my mum and ash her partner and took the oxygen but couldn't use it as it run out so earlie on in the day. This oxygen business is getting rather tricky. I'm going to ask about a concentrator and liquid 02 again, it seems i always run out over the weekend as well and can't ring up and order anymore. So i now have no more portable oxygen and it will take 3 days to order, does that mean i can't go out? I will still go out but will be forced to use the chair as i cant walk anywhere with out it, to be honest I'm struggling to walk any where with it either, my lungs are feeling that bad.

I used the wheelchair all of today, my lungs feel really weak, they feel like they have no strength in them, no strength to clear the flem I'm gagging on. There in alot of pain, iv been taking small amounts of oramorph to try and get by, but i woke up feeling like my lungs were about to give up on me, the pain was extreme and its always times like this i get scared they will just collapse on me, collapses can happen with CF lungs, iv never had one but never ever want to experience one, I think its one of my biggest fear.

I will be calling the hospital 2mz to start IVs again. It seems this permanent IVs thing is going to be a must, especially if i want to maintain what little lung function i have and stay well enough for a transplant.

Harefield

Arriving at harefield on Sunday evening, Instantly I wanted to turn back, all iv been working up to came down to these 3 days. This team of experts would scan me, xray me, measure my lung function, my exercise tolerance, take vials and vials of blood, blood gases and decide if I could go on the lung transplant list. What if the said no? I know I'm ill enough, I know my life styles changed dramatically over the last 2year, but how would they understand the gravity of my life in these few days, how would they know that I need this operation, I need this chance.I know there the experts but sometimes even the experts make mistakes right? what if I'm the mistake, what if they decide I didn't or couldn't have new lungs.

All these feelings running through your brain, everything has arrived at this pinnacle point in time and the rest of my life would be decided in these few days. Suddenly I felt very unsure I wanted to know, I wasn't ready to know whether i would get this opportunity, or whether it would be ripped out of my hands.

I was taken to my room, down a dark and dingy corridor, it wasn't exert RD&E i knew and loved, the rooms were great at harefield, despite the dingy first impressions. They were big and had all the things you could thing you would need.  But still it wasn't my hospital, I'm so used to exeter, the staff, the rooms, how everything worked inside and out. My first impressions of the staff was probably the most unfortunate experience ever, I couldn't understand a word she said and she didn't even seem to understand what she was telling me 'u put the pee pee in the bottle' sorry what?? how can I pee in that big dish and then pour it into that bottle!!!!! ahhhhh confusion and panic straight away. My faith was restored as the staff handed over for the night shift and I was introduced to fiazel, he was there for ever night shift until I left and any questions I had were answered promptly and reassuringly. and also I didn't have to put the pee pee in the bottle, they would do that for me. Panic over, all i could thing was I was going to get pee everywhere. lol

The first night I had all my bloods done along with blood gases. I settled down for a rather restless night, I was scared and totally unsure. I carried on my 24 urine collection. The next day, felt like not alot was happening, I meet one of the tx nurses and she talked through the next couple of days, I saw the doc briefly and had lung function and walk test, my lung function was the best it had been, 32% unfortunately I know this will drop instantly once I come off my reserve drug and would hover around 20% until I continued to get iller and then would go below 20%. But having these sort of figures when your hoping to be given a life changing operation, was actually more unsettling then anything else and just replaced the worry of will they not realise how ill I am? The walk test was still rather tragic, I managed 170meters in 6minutes, with lots of coughing and breathless ness. Stu told me he could do that in 30 secs :-/ I hate to think how far I can manage when my lung function does start to dip.

The second day was go go go, CT scan, abdo scan, reflux test, for the reflux test I had a ng put down which measured my acid reflux over night, I had the tx nurse, doc and some other lady there for this, I asked can I put it down my self? they all looked at my funny, but once I explained I was use to passing them as I had done ng night feed and was probably better at it than them. They then continued to watch in disbelief and I was rewarded with a caramel bunny :-D I also met with the tx coordinator, where we discussed every possible out come, from start to finish. I signed all the paper work, this was the most encouraging bit for me. I mentioned my fears that the docs would not realise how ill I was, he reassured me that they look over everything, including how you feel your life is.

The final day, I was up bright and early I knew id be escaping asap. mum and stu arrived late to pick me up, but I'm so glad they did, Dr carby and his team came in to chat, up to this point i had no idea whether I would be put on the list and knew I wouldn't know for over a week. He came in and he asked me what I wanted and I said I want to be put on the list and i would be devastated if they said I couldn't and he said OK well lets plan to put you on the list a week Monday 28th of march after all the team have met with the surgeons and they have a oked everything. So this is where I am now, I'm hoping the surgeons for see no problems and if not my 2nd chance at life is a step closer, I will be on the list, from then? Its just a waiting game.

BBC Radio devon

Hey guys heres me on BBC radio devon 1hour and 20minutes in. Radio Talking about CF, organ donation and transplant.

Comfortable

Finally I feel comfortable. The last few days I have felt like a bug is crawling under my skin, restless, tired. Unable to rest and sleep felt all wrong. My port a cath was sore and aching and longed to be needle free, I wanted to scratch the skin and feel the shower on it. Insteen of it being covered in clear sticky, itching  and unable to wash near it, I cant get the dressing wet as it becomes an infection risk. More bugs would not be good. So I had my needle out a while yesterday and then out a while today as it was having a few problems with strange leaking from the sight, im unsure why it does this every now and then, but the line o gram shows it is fine.

My lungs are comfortable, far less pain then normal, o2 use is down and im less breathless. I have seen the 02 nurse today, Im getting another cylinder for home, one for upstairs and one for downstairs, far more logical, im not getting a concentrator yet, but we will see how it goes. I'm also getting 4 portable 02 cylinders, not liquid oxygen but again see how it goes. Apparently im not to get excited when looking in the 02 booklet as theres a device that turns air in to 02 and its lovely and small. but i cant have this as they don't do it anymore. I may see about how i require one of these, as i feel it would be very usefull out and about.

We are planning for harefield, Im going up sunday, with mum and stu in the car. Having lunch at anne's a family friend, then off to harefield a day earlie as im still on ivs, so iv been 'transfered' technically. Then monday the tests begin. Once i finish at harefield, I will be going straight back home, prehaps a 3 day IV rest or carry them on, but im probably going to be on IVs permently from now on.

Lung function, I havn't done lung funciton since i came in and im not doing it as i go out either, they have decided its un nessicary, my treatment isn't based on my lung function anymore, its based on how i feel. it only makes me feel depressed, partly because its shit, partly because its not always an accurate measure of how my lungs feel. So as far as i know my lung functions anywhere between 18% my lowest ever and 30% my highest iv been able to achieve whilst semi stable.

The weekend after harefield I have the lovely Elly coming down to stay, shes one of my besties, she also happens to have CF and although we arn't suppose to mix we do because our friendship is worth the risk of cross infection. But we are very carefull not to contaminate each other with our bugs. Which seeing as they arn't airborn as long as we don't cough on each other and stick our tongues down each others throats we shall be fine. Just to say, just because i mix with another cfers, does not mean i advise it.

Daybreak, yes, after my ITV westcountry feature, i have now been featured on daybreak this morning, they used the same footage as i have been far to ill to travel to london, my doctor was not keen on the idea at all. Here is the link to my ITV westcountry piece. I havnt got the link to the daybreak piece unfortunatly. Im also on BBC radio devon tomorrow morning at 7:20 am and 8:20 am I don't know if its the same interview repeated or split, so i suggested listening to both if you don't mind that hour in the morning. Its 103.4 fm or listen online.

On a somewhat emotionally note, Im so proud my message and story is getting out there and that so many people are starting to think about organ donation and what it actually means. Means to them and to those who would go on to recieve organs. It actaully brings a little tear to my eye. So thank you if you have signed the organ donor registar, thank you for all your lovely comments I read them all.

So i think my next blog will be whilst im in harefield or possibly after, I truely hope it will be good new imm typing on here and that i will be on the lung transplant waiting list or get a date for when im active on the list.

The shakes

The starch rubs on my skin, the pillow ruffles under my ear, Cough cough, sleep, cough, sleep, cough. Shakes, jitters, breath breath, cough cough. Close eye, try to relax, try to let the tension release. Breath breath.

Today I am in a shaky mess, as the fosformycin pumps through my body, its so strong, i feel sick and unable to focus. Are these side affects worth it i have to ask? I feel awful, i just want to bury my head in the bed and sleep but even in my sleep i feel jittery. Will this drug work? will it make me feel any better? If it does, it will only be for a few days after 2weeks of hell on it, is it worth it? I'm not sure.

Never ending circles under my eyes, They seem to be there all the time, this disease seems to be leaving a trail over my body of clues. skinny arms, getting skinnier and skinner legs, my weigh is fairly stable but I just seem to be losing muscle bulk. I hate this disease I hate what its doing to me. 

I'm back in side room 2 on culm ward, it seems to be my room. I always end up in this room. my room is re arranged for comfort, but i forgot my duvet, its being brought in today.

My mind is such a mess because of the drugs, I feel this post isn't making much sense

Hospital again

I am struggling, struggling beyond belief, walking a few meters, seems like running a marathon. It leaves me exhausted, breathless and my heart pounding to stop, i feel like im going to have a heart attack its going so fast. I managed to go shopping for a bridesmaid dress yesterday, from the comfort of my wheel chair with my sister Kerrie and friend Hayley. I'm so ill i cant even drive. I enjoyed the shopping wrapped up in a huge coat in my chair, but even sitting i felt hugely out of breath.

Sleeping feels terrifying, I'm gasping for air and feel my lungs are struggling to inflate them selves. I'm only suppose to use my oxygen for short periods of time and as its only a cylinder i cannot use it while I'm sleeping or when I'm out as there is only 18hours of oxygen in it when its full, it is nearly empty. Stuart has had to carry me up the stairs as i simply cannot make it. My chest is in agony, im worried about my left lung, its always in pain and i had a bleed last night as well.

 We managed to go out for half an hour today as its Stu's day of, we went to the beach and he pushed me along the sea front with kia. I'm not even able to shower at the moment, I have no energy. I have decided, tomorrow i am going back to hospital, I'm not sure what they can do, iv been off IVs one day since my last admission, so its clear IVs are not going to help me. Perhaps they will sort me out some more oxygen, some to perhaps sleep if i need it, on a concentrator that doesn't run out as it converts the air into oxygen and maybe some portable oxygen. I'm not really expecting them to be able to do anything to help me get better, I don't think anything will work. I just want them to make things a bit easier. I'm still waiting for an occupational therapist to come round an access me for some things to help day to day life a bit easier. A thing for the bed so i can sit up while I'm sleeping instead of using 5 pillows which don't really work, A bench for the bath so i can sit whilst showering and a stool for the kitchen so i can prepare food without standing. I'm hoping if i go in i can get all these things sorted. Maybe when i come out, life will be a little easier.

I'm sat on my oxygen now and i know I'm not suppose to sit on it for hours, but i really can't breath with out it and my head starts to pound soon as I'm off it. I'm just hoping they can access my oxygen need properly.

I'm not really the type to go into hospital, so you know when i do things are really bad. I would go in today but going in on a weekend is more stress then needed. I will wait till my team is all in and hope they can sort me a bed on culm asap. There pretty good so im sure they can.

My ITV piece, I was so happy with it, it was amazing and want to thank ITV and Jacquie the journalist who interviewed me and created it. It was outstanding, everything I wanted to include was in it and iv had such great feed back. Lets hope it raises awarness and get people to sign the organ donor registar. I will be puting a video up of it as soon as i recieve it.

So wish me luck in hospital. Ill keep you updated from my hospital bed.

Thoughtfulness

Tonight my feature for ITV westcountry will be aired. It has interviews with my nurse and doctor and what i believe is a frank interview from myself. For those of you who can't tune in, I will put the video on here. I hope it includes everything, I tryed to be as honest as possible and hope i didn't erm and errr to much lol. Let me know what you think if you see it.

I'm also doing a interview with BBC radio Devon in the next couple of weeks.

Health wise, I'm not great, but then I'm not really sure when the last time I had a good day was. I'm always compromising something I planned to do, or cutting back. I have a terrible cold and its left me gasping for breath and having to sleep upright which is not comfortable.

The other day i read something brilliant.click to find out about  Spoons. I explained this theory to my physio and we talked about how I use my spoons, Sometimes I have to decide on weather to shower and then rest or not shower and teach lessons, ect. I find I'm often the sort of person that will trade in spoons just so I can have my few hours of normality teaching. But we did discuss the fact that one day I may not be able to teach at all whether it is just sitting there and would I be able to give that up? Iv been so determined through everything to maintain my lessons and keep my own income, but I know its coming to the fact that maybe I will not be able to do them at all, when my day is only left with a few spoons and perhaps I need to spend them enjoying a few simple things. I hope it won't come to that and that with each deterioration I can hold on to as much of it as possible. Its hard to thing that the busness I took my time and care to build up, is getting smaller and smaller and seems to be slowly closing in on its self. I worry that If i get a transplant that there will be nothing left of the business I took my time to build up and that I will have to start all over again. But then again, post transplant I plan to have a bit of time just for me, where I can enjoy my fiance, who will then be my husband and time with my pup. Catching up on holidays we have missed out and time alone together just enjoying eachothers company rather than having him having to look after me or worry that im gettting to tired.

I sit here under the realisation that my world is dramaticly getting smaller, I feel the deteriation in my illness is just to rapid for me sometimes and feel that if i were to blink to long i would open my eyes and everything will have dissapeared. Its a sad and scary thought, that all you knew and know is changing, that you simply cannot hold on. Me and my lessons is me holding on so tightly and in a way holding on to the world and my life in which i spent so much time to build, to get to where i am. I guess the only way do deal with that is for me to create new goals, new visions, things to buissy myself with, raising awarness, I am the sort of person that likes to feel useful.

Today seems to be a very thoughtful day, I have also been thinking about my second transplant appointment coming up, When I first went I was worried they would view me as to well, they told me i wasn't and im now under the realisation that im not and neither could they think that, but I have a new worry, for me there was always only 2 outcomes I was to well or they'de put me on the list. But I never thought for a second what if something else is wrong, what if I go for these tests on the 14th and they find out some other reason not to put me on the transplant list. This thought has invaded my mind and scared me to the bone. What would I do then? Would i simply have to admit defeat and say CF has won, when there is no way out but to sit and let CF take over my body. I know that without a transplant I will eventually die, but if I wasn't to be put on the list, if that chance was taken away from me. More If the hope was taken away, that I will be saved from this? I don't know how I could deal with that. I know I could go on the transplant list and never recieve a transplant and although that would anger and upset me, I would always have hope, hope that that call would come and that would get me through, even if it never did. But if i wasn't on the list there would be nothing. No hope, no nothing. Just waiting, waiting for the infection that could kill me and the painful deteriation that I know will take my life.

I MUST GET ON THAT LIST I MUST GET NEW LUNGS

I want to leave you with a picture, me and kia. My puppy Who is the sweetest pup ever and loves to hug, lick and let me know she loves me, she even knows when im not well and trys to help me.