Oh I'm a crap blogger, I'm sorry!

Yeah, yeah, I know it's been ages... again. I'm not very good at the whole regular blogging thing!

I can't really think of what I have been up to! My chest is a little blah, nothing awful though. I'm on some orals anyway and have started Itraconazole. I don't actually have ABPA but it has been decided that always growing aspergillus isn't a good thing and gunna try and kill it.

I really can't think what else I have been up to lately... it's not that I haven't been doing things but I just have a crap memory... hmmm... mostly going to McDonalds in my mates car, well general driving round in her car. I helped her clean it today, as she was bent over cleaning one of the wheels I 'accidently' dripped water from my sponge all down her back and which dripped down into her pants! She did try and get me back by chucking the whole bucket over me, she missed as I managed to run just out the way (massive coughing fit but so worth it for her to get wet and not me!)

Hmmm, I think I'm gunna go now, I'm actually very tired as it's just gone 2am, oops.

Hmmm... I don't have a title for tonight's blog!

Well, I know I haven't blogged for a lifetime... or it feels that way anyway! I'm probably going to regret this when my alarm goes off in the morning but I can't sleep! I'm back on the IV's, not really happy about this, has only been 8weeks between which for some might seem like a while but it's one of my shortest times, I've needed them for a few weeks but thought I would try and avoid them, didn't work though! My lung function was pretty much the same after last lot of them so I'm really surprised and I've been on a girly holiday to Zante as well! Was really good but I'm getting old, I went out 6nights out of 14 and didn't last til the end once! Well I kinda did one night when I went to see Judge Jules as we had planned to go the second he finished although was still 2hours before the club closed! Lost a lot of weight, some before due a mild stomach bug and more while I was there so none of the brand new shorts I brought fit me so first thing was to buy a belt lol! Typical that all my old shorts I left at home fit when I get home... I'll never be rich all the while my weight so up and down! Lol.

Saw an old friend, Sally-Anne, about 7 weeks ago I think it was. It was the first time I had seen her since before her transplant on March 17th 2009 and was just so nice to see her healthy and o2 free! The last time I had seen her was a week before xmas 2008 lying in the hospital bed stuck on oxygen so to see her at the riding stables riding a pony was just amazing, a true advert for the wonderfulness of transplant :)

I'm actually really sleepy now, my alarm is going to go off in a few hours, I still have a few things I wanted to say but it's not going to be tonight now, I may blog again tomorrow or I may forget for a few more months! LOL

The Good, The Sad and The Ugly!

The Good: Well it's great actually, Miss Tori got her call for transplant today and it was THE CALL not just another false alarm. Things are looking very good so far so hopefully all those false alarms were just keeping her busy whilst waiting for this perfect pair.

This is Tori's live journal which will be updated with all transplant news by her friend Jay until she is well enough to do it herself - http://tori-x.livejournal.com




The Sad: Sadly Nicola from the CF forum passed away this week. I'd never really spoken to her before but she always seemed to have an amazing inner strength. I was on a fellow CFers facebook page earlier and saw her name in their friend list and I clicked onto it and saw she had a photo album titled '2010 is gona be awesome!' which made me feel kinda sad. It's weird how just hearing about the death of another person with CF can make you sad, even if you didn't know them, just read posts they had wrote.

Breathe Easy Nicola x x





The Ugly: My liver, I actually saw the piece they took out, I'm not sure why but I asked after. It was very long but really thin, floating in some liquid, reddy brown, I thought it was going to be more brown but then I thought about it a bit and realised I was thinking of cooked liver! I nearly didn't have it done as they said they didn't have a nurse who could do the sedation, but lets rewind a little, got there Thursday night a little late as we always get lost on the way to the QE. Was put in a double room with a lady who was 72 and it was her first night in hospital in her life!! This is quite an alien concept to me! She was lovely though, very friendly. Next day they came to get us both at the same time and they wheeled me round the corridors and left me in the corridor outside the ultrasound room. I was there for 45mins!! A student nurse had been sent down with me and she was trying to make sure I was warm (anyone who has been in the old part of the QE will know that it is near impossible to be warm in a flimsy gown under a flimsy blanket in a corridor under a window!) Just as they were planning to take me back to the ward they came out to get me, first thing I said was I wanted sedation and they said I couldn't because they didn't have a nurse that could do it there and thats when I started freaking out. They told me they they would ask next door but if not I would either need to have it without or cancel, I think they thought I would say have it without but I said cancel. They started to do the ultrasound anyway and then in came a nurse with monitors and some sedation. They didn't give me much but it took the edge off and they gave me a little oxygen as well, I didn't actually need it as my SATs were 95% but my breathing was a bit all over the place so it helped me to get my breathing more regular and the in-out-in-out gave me something else to concentrate on which helped calm me alot!

I really have no idea why I freaked out so badly, I don't remember been that bad when I had my transplant and I felt like a bit of a twat after! Even while I was still in the room looking at the tiny piece of liver I felt stupid but oh well it's done now! Recovered pretty well, blood pressure was a little low at times but nothing too bad and went home about 8hours later, a little sore and quite tired. Now it's just waiting for the results so fingers crossed I don't have any rejection and everything is good!

Anyway I'm hoping to be in Heartlands tomorrow, yep you heard that right I'm hoping to be going into hospital, firstly because I want to be finished my IV's before everyone comes over from Spain for Marcus's first birthday and secondly I have a stinking cold (which I'm pretty sure has something to do with that corridor) that has already headed to my chest so what was meant to be some get-me-to-my-very-best IV's has turned into I-need-you IV's but at least I'm getting straight on top of it!

Biopsy

My memory has desserted me and I can't remember wether I mentioned that the liver peeps want me to have a biopsy, well it's booked in for tomorrow, I have to be at Queen Elizabeth at 6pm tonight and to put it as politely as possible, I'm shitting myself, everytime I think about the needle I come out in cold sweats and think I'm going to throw up, so I'm doing my best to not think about, this approach however isn't getting me anywhere fast! I still haven' t got anything ready to go although thankfully it will just be an overnight stay (I hope!) but to add to the fun factor I'm in Heartlands on Monday for a few days while I start my IV's. I want to have my stuff ready for that before I go QE but I don't see that happening now! Oh well I'm not great with plans!

Once I'm into Heartlands I will try and do a proper big update or a few smaller updates to make it all a bit easier to read, I'm saying I have loads to say but I do have a few things!

Clinic

Hmm, I think I should update a little more often! Although to be honest I haven't had much to update, well much interesting anyway.

Anyhoo, went to clinic on Tuesday and was pretty good, lung function was better than I expected, had only dropped 2% although weirdly I had been feeling really crap last week, bleeding and certain it was IV time then on Monday I woke up feeling OK and still feel like this so I can't complain! I've been started on a new inhaler, Symbicort 2 puffs twice daily which so far I haven't noticed a real difference but like I said I feel well so I prob won't till I feel crap again. I might be going onto Itraconazole because all but one of my sputum samples in the last few months have shown Aspergillus at 'heavy growth' and although I don't suffer with ABPA the one sputum sample it didn't show up in was the one I gave 6weeks ago when my lung function had gone up 13% so they figure it is doing something bad down there. I just have to wait and see what the liver team say for it. Fingers crossed though!

I had a chest xray as well, partly because of the haemoptysis and partly because I haven't had one since Jan 09. Doctor also showed me my xray's from Oct 08 and Jan 09 and the difference was amazing, Oct 08 showed infection all over my lungs (lung function 45%ish) then Jan 09 infection mostly only in my lower right lung (lung function just over 50%) I found it kinda weird the difference in the two with only around 5% difference in LF and pretty cool is the fact I only had a little scarring in the bottom of my right lung! I'm wondering what this new xray will show as my lung function is now (when well) about 15% better than then.

I have changed my insulin and am nowing having 50units of Glargine once a day and Humulin S 2/3times a day depending on how many times I eat. Can't really say how thats going so far as I'm only on my second day but anything has to work better than the old way! Have been stopped on my fortisips now though as my BMI is high enough and they aren't helping my blood sugar control, trying to find something new to take tabs with in the morning that masks the disgusting taste is not going well so far although I have only tried one thing (milky way milkshake, not tasty and the highest in sugar on my things to try, tomorrow trying Crusha, No added sugar)


Generally life is about the same as before although I have had a good long chat with CF Guy and we are back to been good mates which is good, as much as it is cool to chat with other CF people around the UK having someone who knows me, knows my personality, knows my humour, knows my friends, knows my town and also knows CF as well, it's a pretty good and rare friend to have.

Not really got a lot else to say plus I'm running rather late as I want to get over to Cov and get some more boxes from Primark for my meds to go in as I am determined to stop their takeover of my flat! Hopefully will update sooner.

I got lonely and things got MESSY!

This might turn into a two part blog, lately when I'm on the laptop for more than an hour or so my fingers get a bit swollen and sore and as I have been on for more than an hour already it's almost switch off time!

Anyhoo... I can't quite pin point when it began but I've started to feel a bit lonely and not liking singleness, I really don't think singleness is a word, oh well, you get what I mean! It's going to be hard to explain this properly as some of it goes a bit deeper than I'm willing to put in a public blog but lets just say I have a low self esteem when it comes to men due to a past relationship, well two past relationships really, the first one fucked things up and just as I was picking things up the 2nd wrecked me up again.

After me and my ex John split I started hanging round with some old mates from the area I used to live in and bumped into an old CF mate from before the cross infection days! After a good old catch up the whole cross infection thing went totally out the window and we kind of had a fling which got complicated, I started to get the sense he was holding me at arms length so I did so back and then we both did things to justify why we was doing that and started arguing over fuck all. Went back to been mates and from the beginning of Dec we didn't see each other and only talked through texts and facebook, although things were flirty at times.

Also some point in Dec I bumped into a guy I knew by sight (Smithy, and not because he looks like James Corden!) and we swapped numbers but only texted a few times but nothing more, then few months ago he added me on facebook (god I think I hate that site sometimes, LOL) then I went out for first time in ages about 2weeks ago now and bumped into him and we got chatting, kissed, and started texting again. We was planning to meet up and go cinema but then I remembered my Dad was over so we said would leave it for a bit. Then I went out again on Bank Holiday Sunday (I'm being too sociable for me!) and walking through town I saw CF guy, looking pretty good now he put on some weight and got to 23 BMI, at the cashpoint with a friend of this Smithy (can you see where all this is heading?) then I got into the pub and the first person I see is Smithy! Anyway after a shit night (I really wish some of the pubs round here would invest in air conditioning, even healthy people struggle to breathe in the heat at times, or that my mates would realise Walkabout downstairs with air con is better than upstairs without air con!) both blokes had pissed me off over different things, not really over much but I was just really pissed off in general. Got home and wanted to get to sleep but as I had been drinking Red Bull that wasn't happening! Then just before 4am I get a random text from CF guy (he does have a name, honest, I'm just not writing it here) asking where his invite to mine was, I replied 'what invite?'... can't remember the whole convo (and my phone has deleted it, yeah it's still doing that!) but it went along the lines of he nearly got into a fight and some copper he knew decided to take him home to avoid shit kicking off but he would have rather came to mine. I'm shy, he's shy, I think I'm getting fat, he thinks he is getting fat, he thinks I looked good, I think he looked good... *both falls asleep* next morning he sends me something that requires a parental guidance sticker! We exchange a few texts in the day and then Smithy was texting me too.

This isn't really a new paragraph but I kind of thought it needed a new one to make it a bit easier to read! Smithy wanted to see me and invited me round his house on the Tuesday morn but I spend a lot of my morning doing my treatment, plus I also thought from the way he worded it he was only after one thing so I told him I was busy, then went out for a meal with my Dad and his mate, after we go to a local hotel for a chill out drink and whilst there CF guy texted me asking if I was OK, I replied yes, just with my Dad. he asked Where? I told he where and he said he was round the corner having a drink with his mate (who is also Smithy's mate) and did I wanna meet him so we went round and met him and we was flirting a bit then my Dad and his mate went home and me CF guy and his mate came back to mine and they was talking about this Smithy on the way back, turns out CF guy is mates with him as well! Gets back to mine and the mate slept on my sofa and so we shared a bed and I'm not going to spell it out what happened!

After they left in the morning, I texted CF guy and that was yesterday morning and he hasn't replied but Smithy had said he would text me and he hasn't... don't really know what's going on, don't know if he thinks because he isn't getting what he wants he doesn't want to know or whether CF guy or his mate has told him whats happened!

I know your prob thinking what a silly girl for been greedy but I do really like CF guy but I know deep down it would never work but I just can't seem to resist, Smithy is nice and on paper much better and I do like him but I'm just not quite sure. Anyway I feel a bit used by CF guy and it's not the first time but then when I look at it he has never promised me anything and not given it.



Hmm, anyway I'm confused.com and it seems I'm back to been completely on my own.



(I'm not sure all this makes sense but like I said I'm not putting some stuff on here, still I have tried to be as honest as I can and I realise I might not have come across in the best light but I am a nice person really! Also I have been typing for way too long and my fingers look like sausages and they really hurt!)

TEN YEARS!!!

Right sit down and get comfy this is going to be a long one!


I'm doing a ultra long physio as I type to make up for the quite pitiful 5 mins I did last night with my eyes closed! Before I get into the happy ten years post tx stuff I just want a little moan... diabetes can you just fu*k off now please? 3 hypo's in 24 hours isn't big or clever, it's annoying and ruined my much needed sleep last night.


Anyhoo... happy, happy, happy... I'm now 10years (and one day!) post liver transplant and it feels so totally amazing to be able to say that, 10 years!


On Sunday I got a helium balloon saying thank you and wrote a letter and attached it to the balloon, big problem was that the letter acted as a weight and it wouldn't fly off. So I got a CD pen and wrote directly on the balloon, I tried to write with a gold pen first but it was practically ran out so I had to write over it which didn't look as good as I hoped but it's more about the thoughts. I let that go in the late afternoon which I did video but I can't seem to put on here right now. I've got some pics too but I can't get them on at the bottom, only the top so I will do a seperate blog for the pics!


I had a chinese lantern to set off at the party so I wrote the letter for my donor out on that and let it off in my garden at 9pm, I may post the letter on here or I may not, I haven't decided yet... anyway it went off into the sky and looked beautiful in the dark sky. A filmed it for a short while and then when I stopped me and my flatmate just watched it in silence. Just before I lit the lantern I lit a candle which I left burning til it went out which quite strangely was around 8am the next morning, roughly the time I got the call, felt quite peaceful, can't quite explain.


That night I also made rice crispie cakes... lots of rice crispie cakes, I got a bit confused and thought I didn't have enough chocolate and put 3x 150g bars in! That was enough to make 37, mostly with mini marshmellows, Yummyness. I also made 12 fairy cakes from a kit but then next day remembered 25people were meant to be coming to the party so I brought 12more and decorated them.


Didn't sleep to well that night, woke late but just about managed to get all my meds done in time for my Mum picking me up to go get the food. I had got this skin glue for sticking things to your body and stuck diamonties on my scar and took a picture and then got this on a photo cake which I decorated with the same stuff I used for my fairy and rice crispie cakes. Managed to get a parking fine in ASDA for forgetting to get a ticket even though we spent way over £5, my mum was like 'Right I don't care, I'm not letting them ruin today!'


We kinda performed mini miracles and by 4pm I just wanted to go to sleep. Also whilst performing these miricles I was forgettign to eat, so that was hypo number one, the other two were not caused by my stupidity though!


Party time was at 6.30pm but my family are always fashionably late so got there about 6.45pm not going to go through everything that happened as went on til about 11pm! But we chatted about the transplant and the past in general, we ate lots, we planted a tree and we let off two more chinese lanterns. We thought the last one was going to set fire to the next door neighbours garden as it didn't want to get in the air to start with but made it up in the end!


Last thing I did before most people went was cut the cake (was meant have candles but forgot to get them!) and me and my great-auntie wrapped it up for everyone! Everyone loved their little party bags especially my great auntie as I had put a little diabetic choc bar in there and she thought it was really thoughtful.


Most us women shed a tear or two or ten whilst writing the messages for the donor on the chiniese lanterns, my Mum's was the one that set me off. I can't remember exactly what it said but it was just really simple.



All in all a really good day, lots of reflection and celebration, love and thanks.






R.I.P. To My Donor - 1937 ~ 2000