Come play my game

Saturday Day 18: I woke at 8am and did my drugs and colomycin before heading back to bed and I slept in till 10.30am. I was so happy to be still in bed at such a late time, it’s the best sleep I’ve had ion ages. We watched another wire and stayed in bed for most of the day. Then Doug’s jumped over to lie beside me and knocked my knee where it dislocated. I lay for about 3 minutes trying to put it back in whilst trying to not pass out. It eventually went back in but Doug wanted to call the hospital. Mum is coming to join me this week as I can’t stay in the flat myself. We have a clinic appointment on Tuesday morning, so mum arrived about 2pm today and we had some lunch. At 3.30pm Doug’s and I went for a walk and braved the Newcastle winds and rain. As we walked Dougie said he hadn’t ever walked as fast for as long with me before We took a walk around the park and pond and back to the flat but it was a 50minute walk and my legs were killing me. My mum has brought stuff for me to exercise

Day 16: Friday I went down for a lung function test today and from what I could tell the results were good, I’m already double my lung function and once I start regular exercise it will only improve. The doctors are happy with me going to the flats so Julie took my stuff over and later on we both headed to Beechwood flat 4. It’s basic but it’s great to get away from the hospital. Julie’s man mark was heading up tonight, after returning from Afghanistan, he is such a nice guy I hope he treats Julie well. He was arriving about 2am.I woke about 4.30am, and went for a wee poo yay! Then I couldn’t sleep so I put on my iPod and danced about my room. I then sent everyone a wee text to say: “It’s 5am and I hope this doesn’t wake you all but just been Dancing about my room and wanted to send a text to every one of you makes this journey all the sweeter. I’m such, such a lucky girl to have the most amazing support network around me. You guys make every bit of pain worthwhile, you make every laug

THURSDAY I took a sleeping aid on Wednesday night in the hope that I would get a kip however I fell asleep at 11.30pm and awoke at 1am. I thought the nurse had given me the minimum dose so I asked for more but she said it was probably not a good idea as I would be a zombie in the morning. After I had a little cry she went to check how much I had been given and sure enough I had been given the full dosage. Julie had warned me that the sleeping pill would only be an aid and would not work if I worried all the time. The nurse asked me if I had an iPod and why not try listening to that. I gave it a try and lay listening to mogwai MR Beast very softly and I dozed off. I probably woke about 4/5 times again and went to the loo but every time I replayed the album I drifted off again after a while, I woke at 7.30am and felt much better for it. Mum came to visit me today, it was lovely seeing her and I am sure she noticed a huge difference. I’ve kind of gotten used to not coughing and feeling go

Day 17 Saturday Yep I’m naughty and I skipped a couple of days but in all honesty last week was one of the hardest weeks in my life and not because I was in pain but because I let my mental state get the better of me. I don’t know where I would be right now if it wasn’t for Julie. You can tell from the email I was going to send above that I was pretty sure that my bowels were never going to start again. I had an impending feeling of dread when I thought about it and pretty soon my every waking moment was spent urging my tummy to work, which of course is putting undue stress onto my body and probably making the possibility of it working even less. I spoke to the ward sister on Wednesday morning stating that I wasn’t in a good place mentally sand that this truly wasn’t like me at all. I never let this happen, my whole life I have been optimistic and positive but somewhere in my gut it seemed it was telling me things were not going to be ok. The psychologist was coming to see everyone on

Day 14: Wednesday early morning Face book message I was going to send back to mark but thought better not to. I think it’s more serious than that honey though the docs are saying else wise; I've had about 10 enemas with no effect, lots and lots of laxatives and that stuff. I think I’m being paranoid but there are little to no sounds from my stomach or bowel, the stomach ended up full and not clearing sufficiently so I have poo within my whole region there, they are going to keep trying enemas etc and say that my bowel just needs to wake up and once it does the stomach should follow suit but I have a feeling neither is going to happen. I'm sorry for sending this to you, Julie is with me and staying at the flats and she would kill me if I was having these thoughts. I know I’m para just after an op but it just seems like there isn't much else that can be done, except a pill which will cause the peristalsis but then I don’t think it will kick start it. The lungs are amazing tho

Day 11: Sunday The farts never led to anything, instead they led to another two enemas and I’m still in need of a poo. Docs will be round tomoz but being on a liquid diet means I’m not getting too bloated. I need to stop obsessing but its mighty hard not to. I’m self medicating now and going over my teaching notes so it’s only a matter of time before I would be able to go to the flats if I do a poo. But they’ll do summit if I don’t I’m sure they will. Lots of stinking poo in me that going to reek when it finally gets loose. Blooming cf poo’s! On another note Julie is back, minus dad. She’s brilliant. She leaves next Friday so it’ll be nice to have her around with me for the next five days. Dougie was here today and we watched the wire whilst I sat again head down with an enema in. Then we went for a walk and also did some exercise on the bike, it was sad to say goodbye and I cried a good bit saying bye to him but I know that this op has given us hopeful years together. He got a flat ti

Day 10 Saturday: I got up about 7 and did my morning drugs to be checked by Julie the ward sister. I then spent a lot of time pottering about feeling bad for myself and my tummy and being a bit of a crap bag in all honesty. I sat in bed and had a wee cry and tried to stop myself crying whilst Julie hooked me up to the machine. I’ not used to the basics in my mechanics i.e. doing a poo, not to be working. I got hooked up to my iv about 9am which meant I’d be hooked up till about 12, I watched corrie Norrie and Emerdale and felt a bit shittier. Mum phoned and I did the worst thing ever to my poor wee mum, I cried down the phone about feeling so rubbish with my tummy, I was seriously bloated and felt like I was being stretched, I told her not to tell Julie but she said her face gave it away. Julie said to ask the doc if I could get gastro in the front and back end. And mum told me to speak to the nurse about my worries. I went to see the nurses and the doc was there at the same time (Ben

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 obsesses but today I decided not to be and hope it 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 tot

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 pick

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. 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

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

So I type this from room 24 in ward 6C gartnavel. I’ve been in for a week now and in comparison to how I felt on my arrival I feel great. SO where to start, I leave it so long between entries but this is only a guide for me to ho[pefully view post transplant. I finished another set of Iv’s three weeks ago and didn’t really feel any better for them. I was also started on a NIV, which is a non invasive respirator at night as I was told that my lungs were no longer getting rid of carbon dioxide effectively. Getting told that was a bit of a downer, only another let down of these rubbish lungs I kept thinking but on another note I had hoped the NIV would give me back the ability to do a task without being totally out of breathe. The NIV works by making you take big breaths as you breathe through the night- a time when generally you breathe at a shorter lower rate. By taking bigger breaths you are allowing the lungs time to exchange the co2 and O2. I also started oxygen throughout the day al

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