Day 9 - where's the . . .

Day 9 Friday:

My own special nurse came to see me again at the crack of dawn and we had to wash with my iv line in. No worries for Jules who likes to freak me out by spraying the water into my war wounds. I got onto the exercise machine again today and did 20 minutes which was awesome I had thought I’d do 6 but it gets ok after a while and my legs are the only thing that causes me grief. It’s so totally unimaginable the difference in me. And sometimes I just find myself catching a breath for one minute to realise how magical all this really is even with my shitty tummy.

Ben the doctor who had first seen me on tx night and said I would sail through met me again today and came in to say that this sluggish tummy isn’t anything to worry about and that we will get it kick started.

I had decided today not to moan about my tummy, it was a good tactic Julie as usual made me laugh lots and around 1pm dad came along too. They were heading back to Glasgow today as Dougie was coming to see me and gave them just one night at home with mum and Caitlin. I know they wouldn’t have left if Dougie hadn’t been coming so I had planned to say Dougie was arriving regardless of whether he came along on Friday or Saturday. I said my goodbyes to Julie and dad and felt a bit like it was the end of our first chapter. A wonderful chapter it has been.

Jenny one of the nurses was talking to me about the tx and we spoke about how thankful and grateful me and my family are to the family who gave permission for this to happen I said I would definitely want to get in touch with them and let them know how much it has changed my world.

Later I got a sambucca style enema which funnily enough even though I held it in for two hours didn’t make much difference.

Dougie arrived about 8pm, I went to meet him at the lifts but stood back beside the sterile room as the place had a couple of people walking about and I know Julie would give me into big trouble if she thought I was standing near folk. When Dougie got out the lift I cried, it was so nice to see him after my day. I had been missing Julie’s presence quite a bit. I couldn’t kiss him as he said he thought best not to in case bugs. I know he’s just freaking out. Anyway it was a bit weird at first mainly cos I was gutted the gastro griffin sambucca things hadn’t worked But he asked to see my scars and I warned him about my steroid acne which is situated all over my chest, he was pretty amazed by the scars as I had been when I first seen them, it’s basically just a clam shell scar. He left just before ten and I sent him some lovely wee texts. I always find it hard to see him when I’m in hospital cos it’s so different for me but doesn’t seem to be for him

I had a really rubbish night utterly bloated and feeling terrible. The nurse was lovely and kept asking if I wanted anything but other than a giant pin then nope.

Day 8 Post tx

Day 8 Thursday:

Still haven’t poo’d and now they have placed me back on iv anti rejection as I am not absorbing as much as they would like. Can’t be missing out on them!! The doctors don’t seem too bothered but it’s really starting to get to me, yesterday I was poo obsessesed but today I decided not to be and hoped that worked. Not really at all.

But Julie and I had a good day laughing and joking and it’s been a real opportunity to really get to know her again. She’s been absolutely amazing which I am sure I have said more than once but still it’s very true.

We went for a walk about the ward as the physio said she would be back before afternoon. She wasn’t so we did a 6 ½ minute bike ride and then Julie went back to the flat for a bit. The doctors came to see me and said that a surgeon would be over to feel my tummy and see what the next plan of action would be, it’s very annoying having never had tummy problems before to now be almost set back with them. Good thing is that there isn’t a total blockage but instead seems to be a bit compacted.

Anyway in the evening Julie was making me a heat pad to put on my tummy and said I should go on the bike again for three minutes. I complained a bit then got on, but after three minutes I wanted to see if I could do five then ten then fifteen then I just got into a rhythm listening to Julies shuffle and cycling for 45 minutes, the cranberries Linger came on and I began to cry. I can’t believe my new lungs are letting me do this. It’s amazing.

Helen the nurse popped in later and gave me a cuddle, she had seen me crying whilst I had been cycling and asked if they were tears of happiness.

I phoned dougies mum at night to say hello and a couple of other folk to fill them in. I just wish my tummy would kick start again!

Day 6 Tuesday

I only waited twenty minutes this morning before asking for my pain relief, having almost learnt my lesson yesterday. Big sis Jules came up to see me at 10am as usual. She’s such a rock right now and making this journey so much easier. Well the nurse said as I wasn’t bandaged anymore I would be able to have a shower. Julie thinks my scar looks like I've had a boob job, people will think it’s the worst waste of money ever or that I started as a -AAA lol!! I was a bit worried about getting it wet but its healing really well and I was very surprised how thin the scar is.

Exercise bike!! The physio said we could try for five minutes and in the last minute we picked up pace. So I was to start slow. But I got a bit carried away and went a bit faster than I should have, after a min and a half Jules was laughing cos my legs were sore but obviously I haven’t done anything exercise in some time. The physio said lets aim for four minutes but no no no I did the five and even picked up pace at the end.

She also said a cf’r who had just left last week and by the end of her time she was doing 15mins on the bike. My first thought was I’ll do 20 then.

It’s weird I feel like I’m forgetting how hard it WAS to breathe, how strange it is not to cough or struggle or guinea pig head butt. Everyone keeps saying how well I am doing and not to expect it to always be like this which I am really trying to think, I think the key is to just take it daily. The doc said I will get a lung function test this week and not to expect too much but they will continue to keep getting better. My lf was about 0.78 lowest it had been was 0.64 so it will be interesting to see how I do.

Dougie has been great keeping everyone informed and I’ve made a few phone calls myself to folk just to say hi, I don’t want to phone too much cos I do feel like summit may hiccup and I think just thinking daily is better. When I speak to others it makes me think of all the wonderful things I may be able to do.

Like

Wear heels/ Dance again/ go for walks with missy/ go climbing/ get a bike/ go out without worrying about having sufficient oxygen/ go out for a night and not worry about staying over somewhere as I won’t need my niv/ go travelling/ run about with the girls and jman/ go on my trampoline/ think about a real future. Marriage, home, babies, just so many many things.

So Julie dad and I went for another walk and then I went downstairs for an x-ray. Only blip right now is that I haven’t had a proper jobby yet, I’ve been taking lots of stuff but nothing is properly shifting yet. One drink in particular tasted just like sambucca –yuck!! Julie and I were laughing our heads off as she had a horror story concerning the use of this stuff and a little old lady. Dad like the smell of the liquorice stuff so we figured we could just fed it to him. I gulped it down almost being sick a good fair times all 400mls of yuck then again later but not much happened. SO today we have tried a new one.

It’s called cleanprep but it hasn’t had any effect yet but I’m hopeful and I’m also not suffering from acid reflux today which I was badly yesterday.

I called my college and spoke to Donna who was so happy and surprised to be talking to me. She said the principal and everyone had been saying prayers for me and on Wednesday the day of the op they were all sitting thinking and hoping I’d be strong and fight through. She said that she knew I was exceptional anyway. And on work front she is going to make sure that I’m in the know and doesn’t see me not being able to do this year which is fabulous. I’m sitting here overwhelmed with wonder and hope and I know I shouldn’t think like this but it’s just so amazing the possibilities.

The doctor was just in and said that my absorption levels may be low because of bunged up as my levels are a little low. Hopefully it will sort itself out after a good jobbey but if not they will just start me on ivs again.

Julie had gone back to the flat whilst I went for an x-ray so she is soon to return. Honestly I don’t know what I would have done without her. She is amazing truly amazing person and I know everyone else is amazing but I have such eternal thankfulness that I have her with me. She is missing mark and Caitlin terribly.

Anyways hopefully tonight will be one full of shit lol!!

Day four Sunday

Epidural still in and everything seems good, Julie was up again at 10am and washed me, and dad arrived later on once I was presentable. I needed an abdominal x-ray to check there were no blockages but they said I would have to go downstairs.

Julie wasn’t happy about this as I am meant to be in isolation as my immune system is so low. She did air her concerns and I’m glad she did. I did go down to x-ray but it was empty and I was quickly in and out.

The final two chest drains came out and bandages placed on top, then my epidural started to buzz to say it was finishing. They got another doc who wasn’t my pain doc to put a new one in but he didn’t add the diamorphine, my sister asked if he was going to prescribe anything else to make sure I wasn’t in pain but he said I would be fine. Later another doc came along and lowered my epidural drip so I wasn’t getting as much. I was still feeling ok though so didn’t worry much.

I still haven’t poo’d properly so they gave me this drink they tasted like sambuca –utterly gross. I had to have two jugs worth and still nothing to write home about on the loo front.

At night when they did the epidural numb test I was able to feel the ice a lot more than usual but I wasn’t too concerned. I didn’t sleep well at all, restless, full, bloated and then I awoke to real pain. The nurse Tracey came in and I asked her if I was on any other pain meds but she just gave me paracetomal and to see how that was. I didn’t want to complain so I just told myself to shut up and deal with it, if this was what I had to go through to experience new lungs it was a very small price to pay. However an hour later and I was really suffering, when Tracey came in again she asked how I was and I began to cry which hurt even more.

She got in touch with the pain doc (my one) and she came along and gave me tramadol, liquid morphine and another one, they took a while to work but then it eased. Julie had arrived and the pain doc said that she wouldn’t have taken me off diamorphine last night without adding summit else. But I learnt from that lesson, it’s much harder for them to control my pain if I leave it until I feel pain.

We then later took out the epidural and then the catheter which was brilliant!

The physio came along and I went for my first walk, it was then that I realised how much things have changed. I was able to walk at an ok pace and talk and talk and talk!! It was brilliant, so amazing to talk and not feel breathless in comparison to how I was in Brighton having to stop every 50yards to try and get some breath and energy.

Julie and dad spent the evening with me as usual and we ate a box of maltersers. Even though I can’t poo I’m still eating loads. I have 4 bacon buns in my tummy that need to be excavated.

Its day number three. . . .

Day three Saturday

My two lower chest drains were removed today, nice to not have any drains, now it’s just two to go.

Dougie arrived down on Saturday. I had said there was no use as he wouldn’t be able to get in but he wanted to just come down and wave from the window. He also brought me down my phone and some stuff from the house. Dad had gone to meet mum in Carlisle as she is staying at home at the moment. We were only allowed two visitors in so she is going to come down to visit when she can come in.

Dougie arrived and we tried to have a wee chat through the window, my lunch had arrived and being on steroids means it doesn’t stay around for long. Anyway the nurse asked if my mum was going to be visiting and when we said no she said Dougie could come in. This made Julie cry and although I never touched Doug’s or kissed him as he was unsure if his throat felt funny he was able to sit with me. Couldn’t hide the catheter but he seemed ok, surprised at how well I looked.

Julie and him went for some lunch and then they came back to see me. All doctors that have been coming in have been really happy with me so far.

Day number two . . .

On day two post op Friday

I got myself up out a chair and went to move my drains and then had myself a little panic attack. I think the drains reminded me of my lung collapse and I felt like the air was vanishing from me. The nurse walked in and sat with me whilst I apologised and started to breathe better again. The physio came in and got me up on my feet marching on the spot, nice and slow and then lifting my leg a bit further then I had another wee panic attack. The physio said I’ve been through a lot and how well I was doing but I’m just so aware that I have such an amazing opportunity with these lungs that I don’t want to ruin in any way.

And then I awoke

I awoke to Julie and dad sitting at either side of my bed and I became acutely aware of my mouth and the ventilator and trying to cough with it in. Dad told me the op took 7 hours and I had gotten outta surgery for 10am. It was now 7.30 AND THE Pair Of them couldn’t hide their surprise that I was awake and trying to talk.

I tried to tell them the op took longer because of the pleuradesis but my charades effort was shit and they were worse guessing at loads. Thankfully Julie had a wee pad and paper so I wrote on that. Over the next hour they reduced my ventilator and then they were going to take it out. Julie said don’t worry if they have to put it back in, as it may happen. I took a big breath out and then whoosh it came out. And I could breathe myself. My body was making these new gifts work, I’d love to say it was an instant amazing first proper breath but it did feel better.

Sitting with four drains in, a neck vein thing, a catheter and an epidural coming out of me with many more wires giving me ivs etc I must have looked awesome!!

The rest of the night was a bit hazy but my lovely ICU nurse Eileen had to keep doing checks for the epidural which meant her using an ice pole to check my sensations. But the best bit was that she gave me the ice pole after, she was lovely and was very surprised how well I was doing. But ever two hours I got an ice pole and I was very happy.

Next day the lots of visitors of hospital staff who were amazed that I was eating and doing so well, the physio came and said “Your my first lung transplant patient, but I’ve been told your an exemption to the usual patients” Pretty awesome to hear that, then I met Dr Sholler my surgeon who came to say hello and tell me he was very happy at my good progress and that they were very good lungs. The ICU folk said I was too well to be there so I was moved on the Thursday to HDU High dependency unit. It’s pretty hard to get about with all the wires and drains etc but I was so happy that I was able to sit up and I wasn’t in too much pain at all. Before leaving the Intensive care unit Simmy(my nurse) removed my lower chest drains. YAY two down only 4 to go!

Let me start at the begining

Day 4 post op Sunday 15^th November 2009 09:32 am

Oh my goodness it actually happened, after a weekend in Brighton to celebrate my birthday – paid for by the cystic fibrosis young holiday fund Dougie and I headed back home. We had stayed in a gorgeous boutique hotel and had a full English every morning for our four night stay. We arrived on the Friday night and watched some of our favourite show – the wire. On Saturday we had breakfast at then headed back to have a nap before heading out for the day and meeting mark down at the cobbled beach. The sun was glorious but the wind was icy and to be honest I probably didn’t pack very well but I wore my cystic fibrosis holiday fund jumper with pride and got some photos taken to send back to the lovely people who had made my holiday possible.

It was great to see mark and Dougie carried my oxygen cylinder around on his back. It’s like we’re attached with a lead but he beautiful and always does anything to help me. We stopped off at a few pubs and bought some muffins- my carrot cake one however wasn’t a scratch on Ellens dads ones.

I was going to get my hair done by keifer but his last client ran over so that didn’t happen. Probably a good hing as we spent Saturday night in Mark and keifers house watching xfactor and enjoying a rather scrumptious Indian. The flat they have is gorgeous, a lot to be said for that guru that is keifer and his interior ideas.

We headed back to the hotel, I had stopped drinking after about my third blue wknd as my breathing doesn’t really go well with alcohol anymore. Dougs had continued and I know he would have been up for a late one if anyone else had. I felt a tad bad but hey it’s my birthday holiday ;)

Mark was working early doors on Sunday so Dougs and I had a full breakfast and walked along to the lanes via some shops but my walking was laboured and my breathing so we and I ended up watching my first ever football match- Chelsea vrs man u in the same pub as yesterday. It was pretty good, I was busy eating baked camembergh with bread and then we headed back to the hotel a walk which seemed to take a lot longer than I had hoped. I had to stop a lot along the way. I then told Dougie that I was never keen on using a wheelchair and thought the best course of action when the time came would be for him to piggy back me everywhere. I told him I’d lose some weight to make it easier on him and as far as I’m concerned we made a deal.

Back at the hotel we got out the mango vodka from the car – that doug had brought back from turkey and mark headed over after work. I had hoped for wild night of pubs and keareoke but I wasn’t up for much so instead I made mark drink lambrini and I had a good few mango vodkas and lemonades with Dougs whilst we watched Hot Rod. Still makes me giggle lots when he falls off the cliff!

It was great and come 12am I was 26!!! 26! Awesome!

Mark left about 1.30 and I stayed up a bit taking photos of Dougs sleeping and funnily enough filling up a magners bottle with coca cola – weird I don’t remember that bit. Whilst I’ve been away I had been reading the twilight books which I absolutely love. Sharing the love with Amanda at 2am with a very drunken phone call. She sent a text the next day saying she missed drunken kirsty. HA ha.

Monday and it’s my birthday and yet another breakfast followed by a drive to the pier – i wasn’t up for walking one awota but after Sunday being A RAINY DRIZZLY DAY THE SUN WAS OUT AGAIN for my bday which was excellent. I almost forgot that I also got Dougs present, a tiffany dragonfly charm and Michael Macintyre tickets. He also got me the knife silent shout album and Fever rain album with a note to say if i liked her work he would get me two tickets for her London show in December. I did amazingly well.

We parked near the pier and went for a walk along it, puggie machines!!! 2p ones and Dougs is even worse than me on them. He did however win me a keyring YA dancer! Lol

We got some pictures and tried hard to make my head look small, then we collected mark and keifer and headed out to devils dyke where the paragliders jump. It was a brilliant sight, seeing these majestic flowing parachutes in the air. We had a gorgeous lunch/dinner in the pub beside and looked out the window at the folk paragliding seeing one dude almost get whisked away. It was lovely to sit and talk to the guys however we were all a it worse for wear, keifer had had his work night out the night before and I was till hungover.

After lunch we headed to a wee old style pub with a fire and had a drink- a coke for me. Then we dropped mark and keifer off and said our goodbyes. Back at the flat I had a spa bath and then we watched a couple of episodes of the wire.

Tuesday morning and we had our last breakfast I knew I would be sad to not awake to these every morning. Doug had organised to meet up with his mate Andy and his girlfriend Kim who had moved to Sheffield on our way home so we met them about 2pm and went for YUMMY lunch.

I forgot how lovely kim and andy are and lovde even more thay kim is a twilight fan so we sat discussing the inners of Twilight and how amazing it was.

We were back on the road for about 4pm and at 6.15pm I got a call from Anne the tx coordinator to say there may be a possibility of lungs but that I was going to be back up. Once again as with the previous time the call was completely out the blue. I know that sounds stupid and you think it would always be but really more often these days I would be thinking god if only the call came today etc etc.

So we were 2 ½ hours from Newcastle if we headed east at Carlisle. I drove the rest of the way as Dougie had been driving up to then and was due a swap. I was calm, thinking it wasn’t going to happen but I called Dad and Julie anyway who said they were going to make their way there incase.

Dad was in birminghham having not long arrived and Julie and Mark were going to make there way. We then got a call which Dougie answered to let me know that I was no longer the back up. My hands got a bit sweaty after that but after the almost a three hour drive we arrived at Newcastle. Dougie was worrying over the disabled parking ticket and wether we were able to use it and I just wanted in, I was getting pretty anxious and adgitated and poor Dougie was the only one in sight. ~

He carried my oxygen up the stairs to the Tx unit. I met my co-ordinator Anne who said that the lungs so far were looking ok but nothing sure yet and obviously lots of bloods etc to do to ensure they would be going into a good recipient.

The doctor came in and had a listen to my chest then asked me “Have you ever heard your chest” I answered that I had some time ago and his reply was “well they sound a mess we need some good new ones”. Blunt, straight to the point and funny - I liked that.

He ended his once over with, "This is going to go ahead and next week I’ll see you, your nice and strong and I’ll be your best friend cos I’ll be prescribing your pain relief. "

X-ray then an echo cardiogram which you have to sit very still for but on first attempt I heard my dad enter the ward so my heart must have jumped about cos we had to redo that one ha ha.

Once Julie, Mark and Dad and Dougs and I were all sat in the room it was great to have some banter. Julie and Dad are fab, making us all laugh with their act whilst mark was gutted that when Anne asked me if I had any questions about anything at all I hadn’t asked “Why are fire engines red or where are baby pigeons?? Why do we never see them” We made him ask that one later though.

Anne said it wasn’t probably going t be until nearer 12/1 before we knew anything about the lungs, she did say they seemed very good and that if there was any niggles they would attach them to the rig to thoroughly checking any queries they may have.

We sat and watched HOT Rod , again it made me giggle loads and we had to be asked to keep the noise down which Julie had some replies too. We moved through to the visitor’s room and sat there so as to not annoy our cubicle neighbours.

At around 1am Anne came in and said it was going ahead. Crazy crazy I cried a wee bit then, I'm not sure now whether it was relief or sheer nervousness or maybe a bit of both, we took some photos. Dougie with the jigsaw that he was working very hard on and me with Julie and dad.

It didn’t seem long until they came to take me down. Julie had asked if Dougs and I needed some time alone but I was content that he is more than aware how much he meant to me. I had typed out a few notes on this to let him know if it went bad.

I got up on my bed, pretty scared or nervous or both and Julie and I cried a lot kissing goodbye.She did leave me by saying"If you see a white light at any point you run the hell away from it".

We made the coordinator cry and then dad and Dougs came down to the op room. I gave dad a big kiss and he told me how much mummy and him loved me and then I said goodbye to Dougie. I gave him a big kiss and told him a loved him and that we’d be climbing soon.

One I was in the anaesthetic room I stopped crying and told Anne about being in Brighton and the last thing I remember saying was that I told Dougie that I wasn’t ready for a wheelchair but he had agreed to piggy back me everywhere when that time came.

AND THEN IT WENT DARK . . . . . . . .