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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