Dougie and I at the apple ball
After the 10k speed walk 1hr 35mins
before the 10k speed walk
7th January 2010-01-07
It’s the new year and yes I haven’t written in some time!! Some time but here goes I’ll fill you in on what been happening. My last instalment Dougie and I ended up in a place called Holy Island and we went for a walk to a nearby castle. I had said it was too far at first but without even trying Dougie makes me feel bad and makes me push myself. So I did and we walked all the way to the castle. We then stopped off for tea and cakes at the same place mum and I had.
I got home on the Monday and since then I’ve been on high steroids. Main bad point being my face blew up. So after escaping the perils of moon face I now look like an extra from a moon pig advert. It’s a very trivial thing but pisses me off no end. Thankfully today I went down to 20mg of steroids so I’m hoping it may begin to go down. Between that and I’m also a little were wolf like.
When I first returned home my stomach was a problem, this time it was up the way, between constantly burping and farting and my tummy being utterly bloated with gas. Doug’s had moved in the day I returned home so not a great start me burping a lot. But as always he was great and rubbed my stomach for me which did help a lot. Over the weeks it has been getting better.
Mum and I went for a clinic appointment two weeks ago, the doc let me know that my tummy should get better and the acid reflux should go but if it doesn’t I may need to go into hospital for some further exploration as to the cause of it which may result in key hole surgery.
Christmas was great, apart from all this food and me trying to control my uncontrollable hunger!!! It really isn’t an easy task when you’re used to eating everything in sight to put on weight. I was spoiled rotten, it was a white Christmas and we had a ball. I was due to go to dougies on the 27th but he had a cold so I didn’t get there to visit him until the 30th. It was great to see his family,
Doug’s had told me I wouldn’t get his proper present till after Christmas as it would be about 100 squid cheaper. Unsure how to take that one and all the other folk thought it was terrible but on seeing my present it was worth waiting,. He gave me a bag which looked like a bowling bag. He told me I would know what my main present was once I seen the bag so here I was thinking we were now taking up bowling and he was going to buy me a bowls ball. Thankfully not, it was a slr digital camera bag.
I got him a watch, a unicycle and some other bits.
We headed to his mates Owen in Alyth-about a 2.5hours away for new year. It was just the four of us but I had a really good time, it was the first time I had got drunk. My stomach then decided to bloat up after but I was tipsy I didn’t mind so much, then my sugars went crazy so I stopped drinking after that and tried to control my 30 odd sugar reading.
Owen had awesome lanterns we lit after the bells, it was pretty great actually in total, we had planned to see the first sunrise of 2010 but alas the rest slept in whilst I was wide awake. I think I’ve mentioned the steroids do that.
On the Friday we went for a walk in the snow and it felt brilliant to not have to worry about breathing. Later we went to the cinema to see Sherlock Holmes; it too was great, although I wasn’t sure if I liked it even more as it was my first venture to the cinema. It wasn’t busy so I didn’t worry much. I’m getting better at moving away if I hear someone cough beside me.
So we headed back to Dougies parents and ended up with lots of stuff to take back with us furniture wise. His mum also bought us a new hoover which we desperately needed.
This moving in debacle caused a bit of friction at the beginning, seeing as I am just getting the house how I like it, its weird giving freedom to someone else to put stuff all over the place.
We returned on the Sunday 3rd and went to mum and dads for a curry. I haven’t tasted very well recently but it seems my taste buds are returning as the curry almost burnt my whole throat off lol.
So that’s us about there, I had to bleach the hair on my cheek, though supposedly it wasn’t very obvious but to me it was!!
Saturday 12th December
I didn’t sleep too well last night after having some awesome sleeps, mainly up peeing through the night, but it was probably more due to me being fit for bursting food wise. And it’s a bit chillier on this ward to the other.
I got my levels done this morning, so they can check my new levels of anti rejection.
I awoke this morning and already had dread about trying to take my pills, and again when I tried to take the omeprazole I was sick again. SO gross!! It reminds me of when I was younger and mum and dad having to break up my creon into yoghurts. EURGH!
Anyway I retook my antirejection and thankfully hadn’t taken my predisonale yet so they were safe. I got myself ready and did my makeup and felt a bit more alive. Proff Corr came along and he said I could stop taking the magnesium which is great as that’s one less drug which makes me gag to worry about and at home they have different ones at home for me to take.
SO I’m typing this and waiting for Doug’s to arrive though I told him to take his time, he was knackered yesterday. We’re going to go out for the day, not really caring where but to get out even in the car will be nice. Doc just said stay away from bogey nosed kids. But we’ll go somewhere quiet. I really want to go to the deli along the road for some yummy food.
Friday 11th December
Dad came up early to see the docs before he was headed home. He has gigs tonight and I’m so thankful that he is in the position that he can come and stay with me, I hope he realises how much him being with me and supporting me means to me. Just knowing that someone is nearby in case things go hay wire is comforting. Although I tell him the opposite so that he will go to work, I know that he will head back asap if I needed him to.
I was sick this morning trying to take my meds, had to retake my anti rejection drugs, the magnesium makes me gag and brought up all the others which is a pain as I absolutely hate being sick. Of course no one likes it but I would rather get jagged than be sick.
Jim the doctor came in and said I would be sent for lung function and x-ray today to check my progress and Professor Corrigan said all set for leaving on Monday if all went well with my levels as he has changed my anti rejection drugs on account that I’m dark haired and probably will grow some extra hair on the ciclosporin. I said I didn’t mind, I mean gosh I have new lungs, I can breathe but he replied with”Oh in time you’ll mind, you’re a young woman”. Later I had a little look closely at my face and seen that indeed I seem to be growing a nice little mossy. LOL! So it’s probably a very good thing Proff Corr knows his shizzle.
Dad left around 11am and then I was transferred to Ward 26, I was a bit wary at first as I’ve always been in ward27a here but ward 27a is a high dependency unit and I don’t need high dependency. I have my own cubicle in 26 too.
I had a shower and it felt amazing, I blow dried my hair, shaved my legs –nicely cutting them in the process and got myself moisturised up. It’s the first time I have properly had a good nourishing wash and pamper since last week. I did have a shower on Monday morning but I was feeling terrible that Dougie had to blow dry my hair.
Doug’s was coming to see me this weekend as usual the pet that he is, but he was out last night so he went for a nap before hand and ended up arriving about 9.30pm. The nurses didn’t mind, I think because I am mainly self medicating and we were in a room so we sat and cuddled for an hour plus and I showed him my sporting new mossie.
I’m going to be on high level steroids for the next five weeks, but I need to curb my eating. 60mgs of steroids gives you an almost uncontrollable hunger; I keep eating so much I feel sick. Yesterday funnily enough was no different. So tomorrow will be a different day. No binge eating.
Tuesday 8th Dec
Not much in way of change, they tried to take me off Cpap but my sats dropped to 79% so still using Cpap, but have brought down the oxygen level to 10l and the professor hopes that after my second dose we will see a difference but if we don’t then it may be the only option to do a ventilator with a bronch. I’m not too worried about that, if it needs to be done to fix this problem I’ll happily get a tube down my throat. So dad left in the hope that tomorrow will be a better day even.
Thursday 10th Dec
We have some great developments, my lung x-ray looked better, my chest is souding better and I’m slowly be weaned off the amount of oxygen I’m on. I was put onto nasal grips and started on 7l which later dropped to 3l and my lungs continued to work. Not quite as well and I’m still feeling pretty breathless but that hopefully going to rectify itself. Professor Corrigan popped his head in and said, looks like I was right, looking better.
At night I was dropped to 1l of oxygen, and I slept through.
Monday 7th Dec
It was down to 36 in the morning but my lungs felt terrible, I felt like I had cf lungs again and had to ask Doug to go get me things which upset me as I kept saying this is meant to be in the past.
I phoned the Outpatients and told them that my night had been terrible and I felt breathless but unsure if I was panicking, though I did say that my nails were blue and they hadn’t been since tx. She said if I wanted to give myself peace of mind to go and contact my Cf unit who would check me over. I was doubtful as to whether to do this but Dougie talked me into it and I phoned the CF sisters. They got me up there for x-ray at 11am and Doug’s dropped me off on his way to get his van MOT’d. I didn’t contact mum or dad as I was hoping I was over exaggerating but when I tried to walk I felt I was back to how it was on my very worst days.
Turns out my sats were at 66% when I arrived post x-ray and soon enough Dr Ross was in seeing me, either it was infection or rejection. Either way I had to be transferred down to Newcastle in an ambulance. I was placed on 15% high flow oxygen which only managed to get my sats at 94%. I’ve never been on such high oxygen, even when I had my lung collapse.
Anyway about an hour later I was taken into an ambulance and thus began my new chapter. Dad was following me down. I arrived three plus hours later smiling but feeling terrible. The staff got me onto high flow and then later put me onto a Cpap machine which would push air into my lungs and help me breathe deeper. There was no way a bronch could be done to check what the cause was because of the high level of oxygen I was on, the only way it could be done would be using a ventilator so instead the Professors decided to start me on rejection therapy using iv steroids.
I know my dad is really worried, I can see it in his face, and he’s almost in tears which are not like my dad at all. I try to tell him that I have a great feeling I’m going to be fine, like before when I was blue and no one knew quite what to do but I knew I was going to be ok in Gartnavel.
Sunday 6th Dec
I awoke tired and went downstairs to see if I could sleep whilst watching the movie channels dad had got for me to enjoy while I was staying with them, however I ended up back in bed at 11am till 1 pm. I woke but was still pretty sleepy for the rest of the day and didn’t have energy to take missi out properly. I made mum and dad dinner and then Doug and fin came round and we headed to mine. Donna Rice came to visit me with amazing presents, a gorgeous new purse and socks and bracelet and then for my actual transplant she got me a Disney couture “Dreams come true” necklace. So appropriate, she said she had the lady at the counter crying. I love donna; she’s just such a breath of fresh air.
I had felt tired all day but my night temp was high so I checked it for the rest of the night and it seemed to be steadily rising, I phoned ward 27a and Helen said to phone the outpatient in the morning if it was still up.
11th December 2009 –One month later
So I got lazy, very lazy and I never gave the good news about getting home on Wednesday 2nd, it was great to be home, taking missy out and getting used to doing things for myself. Also trying to do some extra fitness stuff but the walking of missy mainly did that, then on Friday Dougie and I got to go back to mine and spend the night which was fab. On Saturday Doug spent the day tidying up the garage and I mainly lounged about putting my tiredness down to not having slept all that well lately since being in hospital. We went out on a bike ride, on dougies single speed bike which was blooming hard work. But fantastic to actually do it.
Doug went off on Saturday night to go climbing with FInly on Sunday; I had pushed him to go cos he’s been so good at weekends constantly visiting me that he needs some time to do what he loves too. So I went back to mum and dads.
Only pain right now is my uncontrollable eating due to my steroids, I eat myself so full that I can’t eat any more and end up feeling a bit ill. SO have to start putting a stop on my eating.
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 with which should be grand, we spent the rest of the day watching TV and then had curry and pizza for dinner. I have eaten so much today, so so much. Doug’s left at 8pm, it was sad to see him go but know I will see him again soon. Xxx
