Thursday, 5 April 2012

back in hotel brompton..

Its taken me quite a while to blog! firstly its cause i couldnt be bothered and didnt feel like i had much to blog about and then emotionally i didnt feel in a good place to talk about how i felt as things werent good and sometimes its bad enough going through it but then writing about it can make you feel even worse, and my emotions have been everywhere so didnt wanna make things worse! anyways im in a good place now and very happy and back to george! and feeling on top of the world!! :)

Right so where to start. I have now been in the brompton a week today!! i was orginally doing home i.vs to clear up an infection, but never really improved at all in the 2 weeks, if anything i had dipped, i was indenial about it although everyone around me could see it, i just didnt want to admit it to myself, the weather was so beautiful and the thought of being cooped up in a hospital room staring at the 4 blank walls would kill me so i was just convincing myself i was fine!

anyways it was like someone was looking out for me and giving me no choice to go up to the hospital, cause last thursday my port decided to stop working, was weird i couldnt push anything into it yet blood was coming back...very odd, so i had no choice but to ring the hospital and go up as i couldnt get any of my iv drugs in me! my port is a little thing hidden under my skin/boob lol u cant see it, only when a needle goes into it so i always have something i can access for drugs and ivs etc
the round bit goes under the skin and the needle is only there when im having ivs etc.

i thought that the needle may have come out or been stuck, and was hoping that was the reason for it not to be working so i thought its ok il just get needle changed, it will be working ok, see dr get some new drugs to go home with as my 2 weeks were up, but obviously this wasnt the case......

they took the needle out and it was very swollen, and tried to re access it but it was so sore and they couldnt get it in and i was getting quite upset so it had to be left! and thats when i had to come in.

had x rays, bloods and had to wait around on lind ward for them to find me a bed on foulis. took ages, by that time i had come to terms with the fact i wasnt going home but was still hoping they wouldnt find a bed for me! - they couldnt find one but i get the impression they didnt want me leaving so i was put into a private room.

i think they were a bit worried about me, normally i just see an sho when im admitted but it was about 6-7 and i had two nurses in with me, on call physio came up, had consultant, reg and sho in with me, had lovely blood gases and cannulas done as port was out of use!
sats were dipping quite alot so had to stay on constant oxygen, but been use to that recently literally havent been able to come off it.

i had crackles everywhere, chest was completely full of crap, weight was only 35.4kg-bmi was 15.9 and has to be 18 for tx, temperature was high, crp (infection levels) were over 200 and chest felt so tight, and obviously sats were just low, but finding it weird at mo about sats im not aloud to make, them go above 94% on oxygen as carbon dioxide levels can be too high all a bit confusing!!? im still learning myself! lol

anyways i was put on a cocktail of drugs and i was willing to have everything as i felt so rubbish and just wanted to be able to breath again! i even agreed to steriods which i havent been on since oct 2010!!
Had everything thrown at me once they got a cannula in, i was put on aztreonam iv, colomycin iv, steriod iv, ciprofloxacin iv, and aminophylline drip. and all i kept saying to everyone is please ring harefield, ring harefield, have you rung harefield lol there not always pro active here with harefield stuff!! i just want them to no exactly how i am!! worrys me that they dont no im dipping a bit.

so friday they tried to access my port again, had lots of numbing cream on it for a good few hours before they attempted as it was still quite sore. and got one of my favourite nurses to do it as she calms me completely!!

needle went it straight away :) but as soon as she put it in blood came back without even pulling was odd, but then the same happened could hardly push anything through, we managed to get about 3 mls of heprin and left the needle in as i was convinced it would get working again. but thats the last time they would go near it untill i had a portagram....

the weekend was a horrible experiance! cannulas are so painful, its amazing how alien they had become to me, i have had a port since i was 9 years old so i just dont no how to handle cannulas. it was so painful having the drugs pushed through, i kept reacting to the cipro and i was on constant drip so it was always been used and they dont last long anyways.

we knew my cannula was going, so tried to get a new one in before it did but my body was having none of it, couldnt get anything my left arm, tried long lines aswell and when they did get it in it wouldnt flush so then they started thinking maybe i had a clot in that side as its same side as port! i couldnt stop crying (thats the steriods) im normally a pretty tough cookie takes alot to make me cry oh no not on saturday even the word cry made me cry! was ridicilous! and very embarassing! lol

eventually got one in my right arm, doctor was lovely and brought me some haribo for being so brave haha felt like a right little kid again!
sunday was a better day lee came up and helped me move from the private room into a normal room, funnily enough the one i was in last time so right next to kitchen! ;)
arm was seriously getting more and more painful and was crying everytime the drugs were pushed in!! just wanted the weekend out the way so they could get me that portagram and i was beggin them to try my port but no1 would go near it at all!

finally monday came and i woke up after having morning drugs and asked if a portagram had been booked and nurse hadnt heard anything so little me had a cunning plan to get there arses into gear!! i told my nurse to take out my line as it was too painful and refused to have a new one put back in until they sorted port, obviously if port was a no go then id have another cannula but there was no way i was going through pain if i didnt need to!!

plan worked and had drs come in and portagram was booked! although they also told me they had booked me in for something called a picc line, so if the port doesnt work and there was a clot id have to have a picc line! as far as im aware a picc line goes thru a deep vein, they do an ultra sound scan on ur arm to find where it is, give u a local anaesthetic and then with the scan thing go for the deeper vein, im not 100% its not a nice thing to have tho!!

i automatically went into panic mode! iv heard horrible things about them and the thought of having one shit me up basically! and then there was talk about if my port doesnt work il have to have a new one, and they wont put me under so il have to be awake to have all this, and back to the steriods i just couldnt handle all this info, i shouldnt moan, a good friend of mine has gone through so much crap with having clots, and has had a few ports put in awake now and had so many problems and cant even have a port now and for me to be bothered just made me feel gutted for her and how selfish and lucky iv been.

so i went for my portagram, laying on that bed i dont think my hearts ever gone that fast in my life was worrying so so much!! it was so cool tho how they did it, me n mum really wanted to take piccys to show but defo was a no go in there...they push the liquid dye into my port (which may i add worked straight away) and when they push it they have an xray machine like showing its amazing!! and u can see the dye liquid stuff pumping around the veins into the heart etc..anyways so the port was working perfectly was such a relieve i literally cud have kissed the lady who was doing it!! and so picc line was well and truely out of the equation WHOOP!!

so off i went back to the ward happy as larry and smuge like yep told u, and georges veins lived happily ever after!! POW :)

so stopped the amo drip, steriods have now been switched to tablets first was on 30mg which i blew up massive whole body was swollen and sore but now on 20mg and by weekend will be 15mg then monday 10mg so hopefully by time i leave il be on 5mg or off them :) im such a bitch on them, had a bad day yesterday and just snap at people...esp if i havent eaten! then i get days like today where im normal and lovely! my appetite is amazing!!! so weight is most def not an issue, chest feels so much better not on constant oxygen, although everytime i have my sats done there between 88-90 so should be on oxygen but then they go straight up to 92-94% so maybe need a lil blast now and then, lung function is amazing for me its 21% which it hasnt been for at least a year!! but steriods do have this fake affect so im not forcusing too much on that, but its better than 12%

they have spoken to me about having an niv at home, someones gonna come speak to me next week about it to go home on, not really sure what it is, but im sure il be able to inform you next time!!
so things have basically been crap and writing this actually doesnt seem that bad but omg it felt horrible and so dramatic!! haha but im on the mend 100% happy will be outta this place in no time!! got so much to look forward too!!

heres me on a steriods buying half of M&S lol

now for the none cf stuff before i came into hos i had a lovely trip to london as a treat from my auntie quat and uncle preps! and me and mum and them all went to see chicago in theatre!! was so good really enjoyed it and all that jazz!! ;) heres some piccys!!

and lastly this for my amazing friend Mickey!! hes done yet another run raising money for the Cf trust hes done so well and im so proud of him for doing them all!! 3 half marathons in 4 weeks!! so come on guys please please sponsor him he well deserves it!! and its obviously for such a great cause you click on this link!!! http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=MichaelPark  also the links on the side of my blog!! heres some piccys of the last one hes completed xx

thats me im sproggy ;)

his proud son reis showing off his dads medals!! :)

thats all for now love love

2,525 hours on the transplant list xx


  1. Hey George,

    I recently went into hospital to try the niv, and decided against it for now. u will have to let me no how u get on with it :) and if u have any questions about it ,write to me on fbook, mwah x

    Nicola Johnson.

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