Post transplant- my diary
Day 4 post op Sunday 15th 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 amber 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 peir 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 tlak 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 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 nd his girlfriend who had mpoved to Sheffield on our way home so we met them about 2pm and went for YUMMY LNCH. I forgot how lovely kim and andy are and lovd even more thay kim is a twilight fan so we sat discussing thwe inners of rwilight 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 there was 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 bvbit sweaty after that but after the almost a three hour drive we arrived at Newcastle. DOugie was worrying over the disabled parking tixket and I just wanted in. ~He carried my oxygen up. I met 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 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 made me giggle loads and 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 dais it was going ahead. Crazy crazy I cried a wee bit then we had 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 means 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.
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
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 about that on it. Over the next hour they reduced my ventilator and then they were about 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 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!!
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