Wednesday 3 March 2010

Day 10 - still no joy on J front

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’m 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. 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) he said that they would be a lot more worried if they hadn’t seen this many times before. Julie said she had one girl who took over two weeks, so I’ll probably be about three.

I decided to do something instead of sitting on my tod and feeling rubbish, so I wondered about getting on the bike, then as if it was meant to be the cleaner moved it up as she was going to clean the floor of the room it sits in so I just jumped onto it in front of my cubicle so I got on at 10.05am thinking that it would be nice for Doug’s to walk into the door and me to be sitting on the bike peddling away.

Then it got to 10.10 and the 10.20 and I was listening to Julies iPod shuffle and finding some great tracks so I just carried on cycling. The cleaner was talking about how she wouldn’t last a minute on the thing then I began to sing a wee bit and Julie said she should call Simon cowell, of course I was wearing earphones so I thought I was only singing in my head.

I kept on cycling, sore legs, kept on cycling, sore bum, Dougie still hadn’t arrived, kept on cycling, heartbreaker by will I am and Cheryl Cole came on and made me laugh cos Doug’s and I make fun of will I am appearance on GMTV doing that song half asleep.

Then I knew I had been on for some time, Julie went to make my bed and then gave me a wee pat on the shoulder when she was done as a wee reassurance that I was doing well and then Search for the hero by M people came on which reminds me of Julie G doing my parachute jump when I had to bail out due to ill health, so I carried on until that song was over.

And I did 50 minutes!!!!

I got off the bike steadily and took my time to get to my room but my legs weren’t nearly as shaky as they had been previously and I thought I would check to see what my sats were at.

Before my oxygen sats would sit around 85-87% with 2-2.5l of oxygen, once I climbed dougies stairs and checked them and they sat at 64%, but as I put the finger measure on the TV read 97% and after exercise!! I started to cry again from joy and amazement. What a gift, what a gift indeed.

Dougie as sods law would have it then arrived 2 minutes later as he had slept in and had sent me a text to tell me, I phoned mum, then dad, neither answered so then I phoned Julie who I told about my fifty minute bike ride and my 97% o2 levels who then told me to tell missi as she must have been out walking her. She said missi was so excited she tried to steal the phone in her mouth. HA ha.

Julie told Dougie time keeping was very important if he was my nurse, he was obviously very impressed by my amazing feat ;) I think he was a bit sad he missed it but he made up with it by taking Julies role for a weekend and doing my exercises with me which consist of twenty squats, twenty heel raises, ten sit to stands without using hands(bloody hard work for me and keeps Julie amused at my feeble attempts- though I do complete them just spectacularly pathetically). And now we have some arm weights to incorporate our triceps dips and curls.

Dougie came in and we sat looking at wallpaper for the house. I was meant to be getting my wallpapering done this weekend but due to this amazing surprise I never got to pick the stuff, I had tried this week to pick paint and mum would get Bobby the decorator to paint for me and do the walls and other time but after mum spent three hours with caity in B&Q and homebase I had to tell her to let Bobby know I couldn’t pick my paint. I felt horrible as she had been standing phoning me loads and trying to sort out which stuff to get. She said she was surprised the B&Q staff hadn’t reported her and her sidekick. Poor Caitlin.

A bit later the surgeons came to see me, had to get Doug’s to nip through to the other room. They had a wee feel of my tummy, I was in a much better frame of mind and told them that this was really tight and big for me but that I know I shouldn’t moan about it as I had been given such a wonderful gift, he had a feel and said that it didn’t feel nearly so bad to him, obviously because he has seen many very distended tummy’s. He said the best course of action would be enemas with me getting slanted right up the bed head down so that gravity could take effect. I asked him what his next plan would be if that didn’t work and he said he would hold out, there was no immediate need for me to undergo anything. He said he would keep an eye on me. He asked what age I was and I said 25 before correcting myself to say 26 and that my birthday had been the day before my call and what an amazing present it had been. He said I was clearly a very positive girl and that I was looking amazing having had a transplant just over a week ago. He said the lungs were doing fabulous and Julie told him I had been on the bike. As he left he said it would happen and I said when it would it would be the second greatest day of my life, the first being my transplant day.

Julie and Ben were talking outside my cubicle with my door open about the plan of action the surgeon had said and Julie said he had said I was such a lovely girl, to which Ben replied, oh yeah you have wowed over everyone here, everyone praises you on how lovely you are. I told them that he’d been talking to compulsive liars.

The surgeon had also said stick to a liquid diet, which in hindsight makes a lot of sense, obviously, only wish I had gorged myself so much, Can’t help but feel me waking up day after op and eating three meals probably wasn’t the best plan but the whole team had been really pleased about it, even the tx co-ordinator had told someone who had been for tx assessment the next day about me having gotten up and eaten and sitting up(I know this as this person was on the cf site).

So Dougie spent the next part of the day with me resting against him whist rubbing my tummy, I had worried about my swollen body and the mess of me but he doesn’t look at that, well I’m sure he does but he doesn’t show it, he was just feeling bad for me for having such stretched skin.

Lunch came and I tried to eat some of my mustard chicken and creamy mash, thing is it’s a catch 22 I can’t poo but I’m so hungry due to steroids. I ate a tiny bit but felt terrible after. The nurses handed Dougie an extra portion of chips that had been ordered.

After lunch Julie came to do the enema, she did two in one go and she was feeling bad but like I said to Jenny who also had the great work of doing them I felt bad for them having to do it. Doug’s came and joined me after and we watched a wire as he rubbed my tummy whilst I was positioned head down on the bed slanted, lying on my left. I then got my neck dressing changed and then I got my stitches out YAY!! All whilst I lay in this funny position. I even swapped sides to makes sure that the stuff got dispersed a little more which was Julie’s idea.

After two hours I got up and tried on the loo after giving Doug’s his marching orders for the next five minutes, he came back to see my little sad face and I had a wee cry. Just a tiny one, maybe only two tears but still I’m not a crier with stuff like this, I never feel like it helps to have a good cry with Cf stuff, not really I always like to attack it from the opposite angle with humour.

We had some dinner, Doug’s had my lasagne and chips and I had a scadishake that Julie made for me which was rather tasty. We then went for a wee walk about the hospital, making sure we didn’t venture through any corridors with people around and stopped at the shop as it was closing and empty. I know Julie you’ll kick my ass but it was empty and the nurses said that would be ok, I didn’t even buy anything but it was nice to walk that far, I did freak myself out a couple of times and have to tell myself off for my erratic breathing.

We got back and I got another enema near 7pm. Again I lay on the bed up angled and even more so this time but we watched another wire and then Xfactor, my night nurse came in to see and was surprised. She said I had put everything into getting this working, I said it’ll happen, and if it doesn’t they’ll have a plan for me.

It was actually really lovely to spend the day with Doug’s, I have had a couple of cries but told him that he had to take Julies offence and tell me to shut it when I moan.

I can’t actually believe I’m talking toilet to my boyfriend or that I’m sitting with an enema in whilst he rubs my tummy but it just shows you what an amazing man he is. I am truly gifted and thankful for the support I have around me. He also spent a lot of time looking at wallpaper as bobby is going to do my walls on the 12th 13th Dec and choosing our favourites and we ended our night with watching Tenacious T Pic of destiny. Doug was here till almost 11pm but the nurses didn’t mind, she had come in to do my ivs. And then he made me do my exercises one last time. We said night night and I got settled into bed which is still tilted as I find it nicer on my tummy and legs which are still swelling but to be expected.

And then I tried to sleep but thought that today had been such a good day that I should document it before I forgot anything.

I forgot to mention the nurses are letting me do my own meds now, so I’m getting closer to outside life with these magical new members of my body. xx

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