Celebration of Aisling's Life

Please feel welcome to attend the celebration of Aisling's life on Friday 6 January 2012

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Our Beautiful Daughter

Our beautiful daughter Aisling passed away in my arms at 11:15am on Friday 23 December 2011

Aged 20, her courageous battle with Cystic Fibrosis has now ended. If this has come to you as a shock please don't let it spoil your Christmas - Aisling is finally at peace and has taught us so much about true grit, tenacity, courage and determiniation. She even took control when she decided to let go and die, asking for me to hold her in my arms, remove her BiPap oxygen mask and take one last breath.

Here is a photo of Aisling with her American fiancée Chris.

Chris and Aisling

 Funeral arrangements will be posted on this blog

Rest is peace my darling xxx (Daddypoos)

Aisling is at Peace

This is Aisling's dad. Our beautiful daughter passed away quickly and peacefully in my arms at 11:15am this morning. She is at peace now...

Christmas Time

I was hoping to be able to go home for a few hours for Christmas dinner and presents. However, reality is, I'm just not strong enough. I'm still on the NIV most of the time.

I feel like my chest is good now, but i've lost so much muscle and strength. It's a long way up from here. Had another iron infusion to try and boost my red blood cells. Yesterday I got up loads, but today nothing! I started a new feed regime to try and get me more rest at night, doing bolus feeds in the day - so just quickly pushing it in with a syringe every few hours. Just made me not want to eat though, plus it's an extra thing to do. I'm going back to overnight feeds tonight. Phew :)

I have all the presents for my family here. No wrapping paper, so I just took prices off and delivery notes out and put them back in the box/bag they came in. I used some medical tape to put tags on them - sorted! Lol. Mum's bringing me Xmas dinner on the day and her, dad, Brendan, Robyn and Declan are all bringing the family presents so we can open them here. I'm excited.

Wonder if I'm ever going to get out of this place some times...sighh...

Bit brighter today!

Brendan and Robyn came to see me. Dad stayed in my room last night on the spare mattresses they had for relatives here. Robyn gave me a pedicure and because I can't bite my nails with the NIV on, they've grown, so she could give me a manicure too!

Aunty Heather has been to see me too. She's not a blood aunty, she's become known as aunty because she looked after us so much as babies. Someone at her work place make this giant Christmas cracker, but I'm not allowed to open it until Xmas! Makes me even more curious to see what's inside.

They've done most of the tests for the transplant assessment. They have to do a 24 hr urine collection and i can't walk to the toilet yet so they've had to put a catheter in. It stings every time I cough or sneeze ugh it's just so uncomfortable! Grr...at least it's just for 24 hrs anyway...phew!

I've been given a big thick book from harefield which tells you in detail about every aspect of the transplant. I'll be reading it tonight and note any questions I have. Hopefully I can sleep tonight with this catheter in...eww!

Tired now...

Sorry I haven't written a blog in a while.  I've felt so ridiculously exhausted.  My iron levels are low again so they're consulting with the 'blood doctors' what to do.  They can't give me a blood transfusion because then I wouldn't be allowed a transplant.  Hopefully they'll just give me another iron infusion.  I've literally slept the whole day.  Even when I was sitting up, I was finding it hard to keep my eyes open.  Constantly dosing off.  It means I haven't been able to do physio properly either because I just don't have the energy.  Now it's the weekend too, so I doubt anything significant will happen from the doctors side.

I switched back to my old mask because the newer one, nice as it is, it just too big.  the straps aren't short enough for me to tighten it properly so it kept leaking around the edges (making farting noises of course!).  Abbey, my maid-of-honour, and her boyfriend, Olly, came to see me.  I'd never met him before - shame that the first time I meet him I'm like really ill and stuff lol.  Always like to make a good impression on the best friend's boyfriend - ah well!  They brought me a whole wrapped up shoe box of goodies - soap, chocolate, teddy bear, photo album, candles etc.  Cheered me up and it was very well wrapped!  Looked like something you'd get in Lush - all wrapped up nice mm!

I've had a CT scan, ECHO and ECG.  The CT was easy, just had to hold my breath for a few seconds and they scanned my lungs.  Mum saw it and said that all my mucus is right down the bottom of my lungs.  I have no idea how I'm going to get to that stuff!  The ECHO looked normal to me - my heart looked so cool on the screen pumping away with the little valves flickering.  The ECG is just a trace of my heart beat, boring but quick so no problems there.  I also had some blood tests for tissue typing.  They use these to match with the new lungs so very important!

Hopefully once I get my energy back, I can start walking again.  I've lost so much muscle.  I have no idea how I'm going to get it back - it's really hard to imagine being able to walk normally again because I've been sat in bed all this time.

So it begins...

Today was an okay day. Bit of a temperature and 130 heart rate due to loads of mucus again. I got up some of it but it's pretty hard to get up now it's all down the bottom. Mum's been here a lot and even just having her sit with me is comforting. Dad's been coming after work and bringing all his gadgets with him like nice headphones and iPhone speakers so I can listen to my music.

They've started the transplant assessment tests. They did my liver ultrasound and it's all normal and good :) I'm currently wearing a heart tape thing which traces your heart for 24 hours. They took a lot of blood from my port for more blood tests. So everything's underway which is awesome!!

Chris goes back home tomorrow for a couple of weeks :( I think he needs the time off lol. I'll still miss him everyday. They gave me a different mask for my NIV. It's a lot more comfortable. The old one had a strap around the forehead that i think was giving me tension headaches.

I haven't walked for a few days now. Honestly, I feel I've become dependent on the NIV. It's hard to have to use my muscles suddenly when the NIV has been doing all the work for me. The Physio has a plan to exercise me on the NIV and get me as fit as possible then I can walk better without it when it comes down to it.

Bad News vs Good News!

Yesterday, I woke up with a temperature of 38.9 and heart rate of 150 at rest.  Not good.  I wasn't feeling breathless and panicky with it like I have before though.  I just felt FULL of mucus.  It was coming up so easily though - I literally cleared half a cup of the gunk!  Felt so much better afterwards though.

Thursday is ward round day, which means the consultant, the dietician, the physio, the CF nurse specialist, the pharmacist and the doctors below the consultant all come to see how you're doing and decide on the next course of action.  So they came around yesterday and said that unfortunately with my spike in temperature today and high heart rate, they just can't risk putting me in the back of an ambulance and travelling to Harefield on Monday.  So the transplant assessment is off.  I wasn't surprised with how unfit I am generally anyway that they said I can't go.  Dad was though.  I think he was a bit shocked and Mark, the CF nurse specialist, said that he looked a bit deflated when they told us.  I just thought, well, feeling sorry for myself isn't going to acheive anything so on we battle!

This morning, Mark came in to have a chat.  They'd received an email from Harefield and my consultant had spoken to the transplant consultant.  They've decided to make an exception and are doing the transplant assessment tests here.  I then just have to arrange to go in for a half day appointment at Harefield for the psychological assessment and to meet the team and familiarise myself with the hospital.  Pretty damn good!  Everything's happening now - makes me excited for what I could do with new lungs again! EEEEEEEEE!

New Look Blog!!

Getting a bit bored in the evenings now.  Being on such a high dose of steroids definitely makes me restless.  Feel like I need to be doing something constructive all the time - really get my teeth in to something!  Good job Mum bought me a huge Sudoku book to do lol.

I've messed around with my blog layout a bit.  I hope it doesn't confuse anyone.  There's a drop down menu on the left so you can view it in different ways (Flipcard is my favourite).  I think it looks nicer anyways!

Today was an okay day.  I woke up at 4am with a really dry cough.  Caught the odd hour of sleep here and there since then.  Me and the doc decided to try doing my feed during the day instead of overnight.  Unfortunately, the insulin doses I'd been taking were for overnight when my sugars are usually really high.  So they told me to take my usual doses and I went hypo.

This is when there isn't enough sugar in the blood, so it makes me feel verrry drowsy.  It's very hard to stay conscious and you just have to focus on something or keep talking to someone so you don't drift off.  The normal range for blood sugars is 5 to 8.  Mine was 2.9 this morning, so it was pretty bad.  I was given a tube of glucose gel to swallow.  It's just pure glucose so doesn't taste bad.  I also sipped on a Dr Pepper. An hour later and I was still 2.9!  Had another tube of glucose and more Dr Pepper.  Another hour later 6.3 - FINALLY!  I then had a good sleep.

After my sleep, I texted the physio to say I'm ready when she is.  (Makes SUCH a difference that the team here all have mobiles for patients to contact them on.)  She came, we cleared a few bits and I went for a walk.  My calves were so tight!  We walked all the way to the end of the corridor and sat down.  She stretched and massaged my calves for me and we walked back a bit faster.  My chest muscles hardly hurt as well - I made sure I had paracetamol and ibuprofen before we did any walking.

Mum is being a star and organising my car MOT and test drove some new cars for me.  The physio says I can have a battery pack for the NIV that lasts 7 hours so I can go and sit in the cars and pick one.  Unfortunately one of them has a waiting list so I wouldn't be able to get it until March - NOT an option with being on the transplant list.

Mum's just being a star generally.  Dad's doing his best between work, which I completely understand.  He's being a star too!  The last thing I want is for them to start struggling financially - stress no one ever needs!  He gives me foot massages which really relax my breathing.  They both stayed Monday night and Mum stayed again Tuesday night.  She left this afternoon to sort out the whole car thing.

Sian, my usual masseuse, came to visit me briefly on Sunday.  She did some reflexology on me.  For anyone that hasn't had reflexology - you're missing out!  It's the most relaxing thing EVER.  Sian is amazing at back massage too - always finds the right spots and I always cough up loads after.  It's funny because I never realise how tense my chest muscles are until she's done her magic!  To see her website, click here.

Chris came to visit yesterday.  I miss him so much.  He does so much for me so in a way, it's a nice break for him with me in hospital.  I just want to be home with him in our big new bed playing my xbox and eating chinese!  I'm sure it'll happen eventually.  I am making progress - it's just very slow and I'm an impatient person!

Good Days vs. Bad Days

Yesterday started off bad. I woke up with a temperature and high heart rate again. Full of mucus and finding it hard to breathe.

My nurse call bell had dropped on the floor so I was stuck...began throwing things at my door window to try and get attention. No one came. I clamped my line so my machine would go off, then a nurse came in and started fussing over the line. I eventually explained to her that I'd done it on purpose because no one was coming. She said she thought she heard something but just thought it was something falling down so didn't bother to check...lol

I wrote to the nurse that I need a Physio NOW and to call mum. She got hold of the Physio and she was here by about 8am. She was annoying me because she kept asking me questions when I just needed to clear the mucus. We eventually got on to that and thankfully it was clearing really easily. I felt soo much better afterwards!

I did another Physio session later on and cleared even more. By the evening, I was off the NIV and on my normal oxygen eating halloumi cheese and toffee yoghurt!

Today, I've woken up feeling good and pretty clear in my chest. Just wonder where all that mucus came from. Hopefully it won't flare up again. On Friday, the consultant will make the final decision on whether I'm stable enough to go to Harefield for the 3 day transplant assessment on Monday. Fingers crossed...

Morning!

The last few days have been tough, mentally. I still need to be here but the tiniest things are really irritating me. I just want one day where noone comes in my room, but they have to so that's never going to happen.

Friday I managed a walk with the Physio half way down the corridor and back. Then again later on with Dad, I managed the same distance. My calves are aching from it but it's a good ache. The kind of ache that means your body's getting the message to work properly.

Yesterday I managed another little walk. I was in a lot of pain with my chest muscles. They stopped my regular paracetamol to check my temperatures weren't spiking without them knowing. I guess my body was used to it so once they took it away I was just in pain for hours. They gave me paracetamol, ibuprofen, diclofenac and they were all slowly taking the edge off. It wasn't until about 4pm that I felt ok and able to come off the NIV.

The doc said yesterday that my blood results are the best she's seen for me for a while. The infection markers are right down, so the antibiotics have really done the trick!

The diabetes nurse is insisting on a weird insulin regime for my feeds. I have to take a long acting and short acting one at the start of the feed, then they check my blood sugars 5 hours in. I worked out a way around it - start the feed at 7pm lol then blood sugar at 12am then I'll at least get a good 7 hours sleep :)

In the mean time, back home, Chris is studying and cleaning and cooking. Sighh...I miss home!!

So Sick of Needles.

The last few days have been really good, chest wise. It's a lot clearer and I did manage to get some mucus up today from the bottoms of my lungs. It's really hard work so I just kept falling asleep after Physio sessions, but it's made me feel better overall.

The doctors gave me more diuretics today so the fluid in my legs and stomach has gone down considerably. Still lots there but that's to be expected with the amount of steroids I'm still on. I wake up every morning with my face swollen up with fluid - mum says I look like I've been in a boxing match lol.

I've been having blood tests everyday for about a week now and my veins are ruined. They're having to use veins that are already bruised and it's starting to hurt a lot! Having my fingers pricked for blood sugar levels about 6 times a day is annoying me too now. My fingers are all scarred and tough. And the insulin I have to inject in my thigh and stomach about 5 times a day...ugh. Bruised belly. I suppose it's a good sign I'm starting to moan about the little things.

I feel like it's only up from here though and I'm positive I'll make it to transplant. Mum left after staying 2 nights. She's been so good at looking after me - she deserves a good rest at home I think. Although, I know her and dad are constantly thinking about me.

The Power of Sleep!

So last night I hardly slept. I'm on so many infusions from 10pm they don't finish until about 1am, so the machines are constantly beeping. Then they fitted me with an adrenalin drip, which was a needle straight in my arm muscle. It just made my heart race though so I told them to take it out.

The diabetic nurse is insisting on a strict insulin routine which isn't even working. I have to wake up at 3am to have a blood sugar check and take more insulin. So yeah, hardly slept last night and have been trying to catch up all day.

Overall, my chest feels a lot clearer and relaxed. I haven't actually cleared hardly any mucus in the last few days but I think that just means these new antibiotics are working well.

Hopefully I'll get a better sleep tonight. Mum stayed in the nurses accommodation last night and tonight again. Dad came for a few hours after work and massaged my feet which was JUST what I needed with all the water retention in them. Chris came in the evening for a few hours and kept me company. I miss being home with him a lot. I miss our big comfortable bed and our Chinese takeaways :)

Today

I still didn't get much up in Physio. However, I think this is now because the new antibiotics have kicked in. I really think they're working. My oxygen levels are up to 98 on the NIV (compared to 93) and are 94 on 4 litres of normal oxygen. I feel better. I've eaten 2 meals today and feel a bit brighter. The only thing bothering me now is this fluid retention. Big feet and legs making it even harder to move around and a big stomach making it even harder to breathe. Hopefully the doctors will reduce my steroid dose tomorrow.

I know I've been up and down this last month, but I really feel positively about this change of antibiotics. My consultant can say what she likes about it being unlikely that I'm fit for transplant, but she can't feel what I feel inside me. This drive, this mini person keeping me going, telling me I WILL make it.

I'm really surprised people are actually following this blog. I'm flattered by all the lovely comments and encouragement I'm getting from you all. It's really appreciated and really helps keep me going :)

Positive

So I managed to come off the NIV for about 2.5 hours. Ate a waffle, that Pippa, my Uncle's girlfriend very kindly brought me. Am just back on it now for a rest before my parents get back with some KFC. It's a lot of effort to talk to people but my voice is actually back and my glands aren't up anymore.

Last night I just didn't get any sleep. With all the fluids they're giving me and IVs, I was needing the toilet a lot. Still don't feel like I've had a proper rest but hopefully tonight I will.

Time

So the doctors have a few more tricks up their sleeves, but ultimately they're running out of options. They're contacting Harefield to see what they can do transplant wise. Ultimately, I feel at peace with whatever happens now. If I get the transplant, then great, amazing - it'll give me a whole new life. If I don't, I want to let everyone know that I won't be going in a sad painful way, I'll be happy and my spirit will finally be free.

The docs are starting some new antibiotics and the good news is that my infection markers in my blood are down. I haven't been able to cough up anything since yesterday. The sputum's so sticky and I'm so lacking in energy to get it up.

The nurses and docs are being brilliant. My parents are doing everything they can to help me with things. Deccies is 18 on Sunday and I found it so hard to write his card. To think this might be the last birthday he has with me. Sighh...one day at a time...

Really?!

Sorry I didn't write yesterday, but I simply had no energy.  I started sleeping without the NIV but I was up at 3am with a low blood sugar and had the munchies really bad.  Scoffed some Twiglets, Dr Pepper and Twirl Bites and that got it back up to normal levels.  The Gastrografin worked well and I was cleared out within a few hours.  I went back to sleep on the NIV for about an hour.  Woke up to go to the toilet and just couldn't get off it.  I was all breathless again.  Heart rate 163 and temperature 38.8.  I text mum at about 8am just saying 'Need u' and she came down as soon as she could =]

The physio came as soon as she could and her and a nurse helped me back in to bed.  Then began the long, painful and tiring process of getting the mucus up.  In total, I had about 4 physio sessions yesterday all about an hour long.  Sleeping in between.  I literally drip with sweat at the moment, so they have to keep changing my pillow cases.  We found the best way to do physio is lying on my side and them pushing down really hard to empty my lungs for me until something comes up.  Must have cleared a whole cup overall yesterday - there was a lot there.

I couldn't get off the NIV to eat, so they gave me a feed through my stomach tube and gave me what tablets they could as liquid through there too.  Dad turned up at...I can't remember what time.  I was so exhausted, I was struggling to support my own head.  They did another x-ray, more bloods, and a blood gas.  The blood gas was fine, so that means the transfer of the gases from my lungs to my blood is good and they don't need to worry about giving me too much oxygen.  The x-ray was worse and the infection markers were up again.  With all my symptoms, they really think it's a viral thing.  They took throat and nose swabs and put me back on Tamiflu.  They've also put me on regular paracetamol IV, which is keeping my temperature down and my heart rate down so that's really the only one I care about lol.  They've also changed my antibiotics to ones I've never had before.  So far so good, hopefully I don't react to them or anything.

Today was a bit better in that I'm more comfortable and have a bit more energy.  The physio hasn't been very successful though today.  My chest is all irritated so every time they push down, I just start dry coughing with nothing coming up.  Really annoying and not helping the whole throat situation.  My glands keep going up and down so it feels sore when I swallow.

It's been rough lately, but I'm just having to take it one day at a time.

Fresh

Today started well.  I was able to go straight off the NIV in the morning to my normal oxygen.  Last night, they x-rayed my stomach to see if there was any blockage in my bowels.  There is one very low down, so at some point I will be having Gastrografin, which will empty me out for sure.  Not looking forward to it, but it should help me feel a lot less bloated and make my breathing easier.

Mum came up at lunch time and washed me in the shower.  I remember looking at my legs and just above my knees are all small and weak again =[  Not looking forward to building those up again - such hard work.  Generally feel weak all over today and really withdrawn.  I was speaking to the Psychologist about things I'd normally cry my eyes out about, but I just don't have any emotion.  I can't smile or cry or do anything - just withdrawn.  Maybe I'm more exhausted than I realise and a good sleep will do me good.

Last night, they put a bag at the end of my stomach tube to drain out any air that I was swallowing from the NIV.  It helped a lot and I actually slept for a full night.  Tonight, the physio said to try sleeping without it because I don't feel like I need it anymore.  I was using it more for the fact it gives my body a rest from breathing so hard.  Hopefully it'll help - we'll see tomorrow.  They've also started cutting my steroid dose, so I'm on 30mg a day now rather than 40mg.  Should also help make me more comfortable.

I'm scared I'm not going to get home at all now.  The way my body's being so unpredictable, the doctor isn't happy for me to be home like that.  Maybe they can bump me up the transplant list once I'm on it?!  You have to have a dentist check over your mouth before you go on the list and I told them I haven't had a chance to because I've been in hospital the whole time.  They're seeing if someone from the dental hospital here will do it - it would be VERY helpful if they could!

Declan is 18 on Sunday and I wish I could be home for that, but he knows I love him all the same.  Dinner soon...

Fear

This morning was rough.  I woke up feeling very breathless and bloated.  The NIV (non-invasive ventilation) I wear at night helps, but I swallow a lot of the air when I relax.  It makes me wake up every few hours and I burp and fart it all out!  This morning it just didn't seem to want to budge - something was pushing on my diaphragm.

I'll be honest, I was scared.  I didn't know how long this breathlessness was going to last.  I didn't know exactly why I was so breathless or what to do.  I just sat there on the NIV thinking, I've had enough of this.  I can't take much more.  My body is exhausted and now I'm exhausted.  I felt like I'd given up.  I just wanted to sleep and everyone to leave me alone.

The physio came at about 10.30am and I was sitting there struggling to breathe.  She helped keep me calm, did some relaxation techniques.  She then did some percussion on my back while I leaned forward, breathing on the NIV.  It was really hard, but I managed to start doing my usual AD (autogenic drainage) physio.  You basically have to use your stomach muscles to squeeze down on the breath out and the mucus makes crackly bubbly noises.  Then you gradually breathe higher and higher, bringing the mucus up till you can cough it out with as little effort as possible.  It's very tiring and with all the breathlessness, I'm surprised I managed to do it.

I tried to rest, but kept getting more wind from the NIV and having to sit up and burp it out.  I sat up and was suddenly sick everywhere.  It was all undigested feed from last night.  I didn't understand that because I'd taken extra enzymes but it just decided to come back up.  I felt a bit better after that, but still exhausted.

Mum and Dad then arrived and I was well and truly running on empty.  Mum helped me to the toilet and I rested for an hour, writing things on paper if I wanted to say something.  I started sipping Dr Pepper, then Dad bought me some tomato soup.  I came off the NIV and ate it and managed to stay off it since.  Just on my usual 4l of oxygen now.  The physio came back and we did more physio with the Vest.  It's like a life jacket that you wear and attach tubes to.  It then inflates and pumps air really fast to vibrate your chest.  It worked well and now I'm pretty much back to normal breathing!  I'm scared of waking up now though all breathless again.  Take each day as it comes I guess...

Family

Moving out of the family home is a difficult transition for anyone.  On one hand, you feel free and it's exciting to be out in the big wide world on your own.  On the other, there's so many things you don't understand yet like utility bills and exactly how to put a meal together!

Mum

My rock.  Don't know what I would do without her.  She's always there to help explain various letters and make phone calls for me when I'm not up to it.  She cleans and organises my flat every time she visits.  She understands how I feel when I'm on steroids.  She cooks a mean bacon and cabbage with new potatoes.  She always copes well in emergencies - keeping me calm and just getting whatever I need fast.  I can call her whenever I want and talk about anything I want.  She keeps me focused when things get hard.  She makes me laugh A LOT.  She just has a knack for saying the wrong thing at the wrong time - We've now labelled these as 'Carolisms'.  She's just so caring and loving and I think the world of her.

Dad

A bit mental sometimes, but can always talk to him about anything.  He's got a very open heart and mind, and I admire that.  He's a very hard worker and unfortunately that means I didn't see a lot of him growing up.  He started his own I.T company (Easykey) when I was a child, but it means that now he can take time off in emergencies.  He's very honest and wears his heart on his sleeve.

Brendan

My older brother.  Always up for anything - lives life to the full.  Very good with computers which comes in handy sometimes!  Not emotional at all, but I know he cares about me.  He'll drop me the odd text for an update on how I'm doing.  His girlfriend, Robyn (Dobby), is so genuine and lovely.  She gave me a pedicure in hospital and washed my hair for me at home.  They're always together and I miss the late night kitchen chats!

Declan (Deccies)

My younger brother.  The spark in the family that keeps us all going when we're all a bit down.  Always making me laugh with his irish accents and our inside jokes.  He's been key to me getting through some of my roughest times and he doesn't even know it.  He has feet as big as his personality (mens size 13).  He's a hard worker and a very talented music producer.  Take a look at some of his tunes here.  He reckons he's going to be famous one day and I don't doubt it.  I can talk to him about anything and he just gets me.  Gets what I mean when I say I'm feeling a certain way.  He means a lot to me and I wouldn't change him for the world!

First Post

Hi there,

This is my first post, so I guess I should tell you a little bit about me and why I started this blog.  I'm 20 years old and have Cystic Fibrosis.  I moved out of home in September this year to live with my fiancee, Chris.  He used to be in the US Army as an Information Communication Specialist - he maintained all their networks and satellites.  He's been to Iraq twice, and on the second tour got a message from me on Facebook.  He visited for 2 weeks over Christmas 2009 and we've been a couple ever since.  I met all of his family in America in July 2010 and we got engaged.  Everything was perfect.

My health was declining but I was still able to do everything I wanted to just with a little breathlessness.  I was only on oxygen 2l overnight.  We travelled back and forth when we could.  I got to see California (his home town) and Texas (his base) and it was beautiful.  Winter 2010, my health had declined pretty badly and we both decided that I shouldn't fly anymore to America.  He came over for Christmas and I had a PEG feeding tube inserted in to my stomach.  I had one as a child, so knew it would do it's job!  My weight is now a lot more stable.  By this time, my lung function was hovering around 30% FEV1 (the amount of air you can blow out as fast as you can in one second).

I transferred hospitals from The Royal Brompton to The London Chest just because it was closer to home and to where we were planning to live.  My first admission was in February 2011 and I left at 26% FEV1.  Then the numbers just started going down and down each admission.  At my second admission, the CF team told me that I should get on the lung transplant list.  At the time, I wasn't surprised.  I was so breathless doing the simplest of things that I knew it had come to that point.  I completely felt like now was the time to do this and felt like the rest of me was strong enough to cope with this huge operation.

Three weeks ago, Chris had to call the ambulance.  I'd woken up and just couldn't catch my breath.  He rang mum and told her what was going on and rang the CF Nurse.  The ambulance crew brought all their equipment in - heart rate 180-220 at rest and o2 levels of 90% despite being on 3 litres of oxygen.  They gave me bronchodilators through a mask and more oxygen then wheeled me to the ambulance.  In the ambulance they hooked me up to a heart monitor as well and I sat forward because this is the only way I could breathe.  Chris hopped in one of the chairs and off we went.

10 minutes later and I was pushed in to Resuscitation unit in A & E.  Chris wasn't allowed in until they'd stabilised me and all I wanted was for him to be with me!  They stuck a canula in me, gave me fluids, IV paracetamol and started me on IV Colomycin and Meropenam - two antibiotics I'd had before.  Once stable, I was put in a side room on the respiratory ward for a few days until The London Chest had a bed.

Oh it was SUCH a relief to get to The London Chest.  Days of people not understanding my condition or what to do had worn me out.  I went straight on the NIV (Non-invasive ventilation) and fell asleep.  After a few days of intense physiotherapy and antibiotics, I started to improve.  I walked all the way down the corridor to another ward and back.  I felt like this would take a few weeks, but I'd be back home in no time.  The next day, that all changed.

I woke up again not able to breathe.  160 heart rate, temperature 39.  This worried my CF Team and they gave me any extra drugs they could think of to help.  Tamiflu, in case it was flu, extra antibiotics, in case there was some infection somewhere else in my body, antifungal, in case I was reacting to the fungus in my lungs, steroids to open up my airways.  Something worked.  A few days later and I was back on the mend, walking down that long corridor on oxygen.

Yesterday, I read a blog that inspired me to start mine.  You can read it here.

She's been through a lot and explains the medical stuff a lot better than I do!  I look forward to watching her documentary on BBC Three at 9pm on November 28th.

My transplant assessment is on 12th December 2011 so by the 14th, I should be on the list.  I hope that people read this and get themselves on the donor list.  It's the only statistic that scares me...only 50% of people on the list even get new lungs.  It shouldn't be that way, but it is.  Life is far from what Chris and I had planned.  Yes we're living together, but I can't wash myself or clean or cook like I want to for him and we hardly ever go out.  I'm so determined that I'll make it to transplant.

To sign up for organ donation, click here!

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