Wednesday, 18 January 2012

How I Got Here!

Right so the story so far!

I’ve always had cystic fibrosis but was diagnosed at the age of 18 months, so being in and out of hospital has been nothing new to me! However this year (2011) has by far been the most challenging and dramatic life changing year so far!

End of 2010 I had my peg inserted to help with my weight gain as transplant was mentioned to me as a more convincing route to take as lung function had not improved and was still declining, but without my weight being higher, harefield would not consider me and the Brompton wouldn’t refer me!. I think I weighed around 38-39kg then, cut a long story short the peg was an

EPIC FAIL!

and I am now left with a bullet wound to remind me (my mini bum hole lol) so due to having the peg in, my sickness was at its all-time worse between oct 10-feb 11 when peg was removed but seemed to have brought the sickness problems still with me!

After peg was removed it actually had begun to make me feel quite depressed the way it looked as well as constantly making me feel crap from throwing up. The cosmetic side of things wouldn’t have bothered me so much if I knew the peg was doing the right thing and making me gain weight! Even after the peg was taken out I was still feeling a lot sicker than before struggling to eat 2 meals a day! Food intimidated me..and I love my food!

I agreed to start fortisp drinks as my weight was not improving and my bmi was quite low and this showed although the peg had not worked for me and demanded it was taken out, this was an alternative starting the drinks showing I was compliant and know how important it was to get my weight up for transplant!

Weight gain is such a big thing for tx at harefield the Brompton told me, harefield wouldn’t even see me if my bmi was below 18% so obviously this was my main priority!

So I was drinking 4 fortisps a day 125ml/ 300 calories per bottle, realistically I was doing 2-3 a day!

I had a lot of hospital admissions between jan-june 11 and the weight wasn’t getting better and nor was the sickness I was projectile vomiting!

My june admission- The one that changed my life!

I had been complaining of chest pains for about 3 weeks but for me this was unusual, I normally get them for a day or so, but il just do extra physio and whatever was stuck would move and pain would go- but this pain wasn’t going anywhere!

I saw my physio in clinic and we did the usual etc I don’t think we did my lung function because I was complaining of chest pains…. Due to the fact of having this pain I started to ask questions, things like would I actually know if my lung had collapsed etc was just curious….

Saw nick Simmonds and had x-ray, they all came back ok just had an infection and was admitted into foulis Room 19 on the 21st june (dads birthday)

Started ivs and after a few days I was given a tablet called co-codamol (BIG MISTAKE)  lol within 5-10 mins of taking it I was chatting with bianca at the time and she told me all of sudden I turned white, and got a weird pain/ache in my stomach then out of nowhere I was over whelmed with sickness, id eaten A LOT that day so I was determined not to be sick, I ran to the window to get some fresh air and try breathe through the nausea but every time I walked away I needed to go back, did this for about 15 mins and had to give up in the end I ran to the toilet but as soon as I opened the door my mouth was forced open and it was like something from the exorcist lol

I remember feeling so faint and my nurse walking in to nag me about blood sugars but I couldn’t register anything, managed to tell her id thrown up EVERYWHERE in the bathroom, got onto my bed and I just slept and slept and slept, I cant remember much but just remember nurses constantly coming in to check on me and doing my blood pressure etc but I was so tired and sleepy to acknowledge them! And slept all night and through until the next afternoon, the tablet had proper killed me! Lol

I couldn’t eat for a good week as much as I tried even fluids I found a struggle, I lost so much weight and became very weak, was put on iv fluids and then NG feeding was mentioned…I couldn’t say no I was so weak and knew I wouldn’t get better unless I got some food in me, so as much of a struggle it was I maned up and the nurses put it down me (after thousands of attempts) lol

So the weight started to go back on me and I began to feel stronger again which made me feel much happier…the pain was still there though that hadn’t disappeared and was beginning to get worse and worse each day, I was on iv paracetamol and Nerofen was too scared to try any other drugs as I didn’t want a repeat of the co codamol, but it wasn’t doing much and physio was so painful!

So were up to Friday 1st july! Lee had buggered off to Ibiza L I was still in hospital with this pain, so doctors decided to do a ct scan to make sure they weren’t missing anything. I remember having anal angel (my nurse) that day.

So I went for my ct scan around 3ish in the afternoon and remember laying under the giant polo and having to raise my arms above my head and the pain hurt so much in that position I felt like crying, didn’t last long- thank god and was sent back up to the ward…it was a bit of a blur getting back to my room, but got into bed and slept all afternoon!

I woke up around 6-7 hungry so me and Bianca ordered chinese, walked down when it was delivered got back to the TV room to eat it and jo was there too, for some reason I just couldn’t get comfy! Couldn’t eat but I was so hungry!!- the girls went for their ivs and I went to my room and was panicking the pain was unbelievable I rang my nurse and she rushed to get my paracetamol iv (which didn’t work) then had on-call doctor come, talked about pain, said I had my ct scan earlier that day but no one had come to tell me anything was wrong so I assumed it was ok- how wrong I was!! Had another x-ray from my bed and was told I had a slight collapsed lung!

She said it wasn’t anything to worry about, I was still scared and too scared to sleep in case I didn’t wake up, so much was going through my head and it was like mid night didn’t wanna call mum and panic her… lee kept me calm ringing me from Ibiza, all I wanted was him and mum with me!

I eventually fell asleep and remember waking up to oxygen on my face and two male doctors standing over me telling me I needed to have a drain put into my chest FML moment! So my mum got up asap and sally was on her way down….

Anyways missed out on all my plans for my 21st spent it in chelsea instead but was spoilt rotten by everyone!!...I got better as usual- not to the same state as before though which brings me to the reason for writing all this!

So 5 weeks later-

·        Ct scan

·        Lost count of how many x-rays

·        A missed 21st although spoilt!!

·        A chest drain in and out

·        Dropped to my lowest weight ever

·        Ng tube

·        And learnt to do my own ng tube

All in all it had been a very eventful admission!!
me and lee on 21st

my lung collapsed


my chest drain
my lung back up

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