So I've decided to blog about my boring life once more.
Health things first, well wasn't on the intraconazole for very long, I've had a few problems with my renal function and so was decided to come of it just in case. Have been into Heartlands since last blogged, I just managed a year out the place, wasn't for IV's and I managed 4nights on home leave in 10days so not too bad :) The week before I went in I woke up with a very swollen face, looked like one of those pics you see of someone allergic to hair dye! Went to my walk in centre and was given antihistamines but they did nothing at all and kept waking up more and more swollen, go down over the day, swell up overnight, went back down hosp and they decided it wasn't an allergic reaction but likely a reaction to some of my drugs and advised me to go Heartlands and get my liver and kidneys checked out as well. Went there and they looked at my blood results from annual review and realised my kidney function was quite off... I don't really understand all the numbers on the screens but they said the one they were looking at mostly should be under 80, mine normally sat around 45-50 and was 149! Anyway make a long story shorter was brought in after the weekend for that and to try and work out why I was swelling up. 10 days later, they think my swelling was due to my port been kinked (since it was flushed on the 4th haven't swollen since!) still not sure why my renal function was so off but is getting better, last one was in the 90's, hoping the next results I get on 26th will be better again! I seem to be on 3weekly appointments now, I need to ask them if there is a reason for this or is it just when is available... I've just realised I'm just typing my thoughts not really thinking about writing a blog, fall asleep now if you want... anyway yeah I have appointment on 26th Nov and then again on 16th Dec, don't normally get more than one appointment at a time... oh well!
I'm going to see the port surgeon on the 22nd Dec, they tried to unkink my port and move the tip whilst I was in, by sticking a wire in my groin up the artery to where the point is but that was an epic fail! Don't know get whether the surgeon will try and reposition this port or give me a new one, I'm thinking a new one so if I can have it reposition I will be happy but if they can't I won't be disappointed! My Mum tells me I'm pessimistic about things like that, but I see it as realistic! I'm a very optimistic person generally but sometimes you need to be realistic!
Realised I've not mentioned the lungs yet, they aren't too bad, I've just hit 3months since IV's, I'm on orals at the moment and they seem to be holding a full blown infection at arms length! I'm hoping that whilst holding it at arms length they are all also swinging back a leg to kick it's arse into next year! LOL! In my annual review it was decided that I have too many orals and should prob be having more IV's so they have asked me to think about having regular IV's, 4 or 5 sets a year at regular intervals rather than reacting to infections (unless I need them sooner than scheduled) I'm doing this yet but I am thinking about it, most of me thinks it's a good idea but 2 things are putting me off, firstly my kidneys, if they aren't as happy as they used to be I'm not sure I want to piss them off with extra IV's (last year had 3 IV's and 9 sets of orals) and secondly I just don't like doing IV's, they are a pain in the bum and taking orals is lots easier!
Non health stuff, well not all of it I wanna put on here yet, but I've started my driving lessons back up again and I LOVE it, can not wait till I can drive, will feel so much more free! I've only actually done one lesson so far but I've already started driving round town and main roads which I wasn't doing till about lesson 5 when I did lessons at 18 so I feeling quite happy about it all :)
I'm trying my best to get all sorted early for xmas and I am getting there, my plan is to have it all done or very nearly before I go Heartlands on 26th, that way if I do need IV's then I won't be getting stressed that I'm not ready for xmas and can put that effort feeling well :)
Right anywhoo I'm rather shattered and can hear my bed seductively calling my name so goodnight... or good morning, or good whenever you are reading this! xx
Sunday 14 November 2010
Thursday 9 September 2010
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.
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.
Tuesday 3 August 2010
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
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
Sunday 16 May 2010
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!
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!
Thursday 13 May 2010
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!
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!
Thursday 29 April 2010
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.
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.
Thursday 8 April 2010
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!)
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!)
Tuesday 30 March 2010
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
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
Friday 26 March 2010
Uber-Fast Blog
This is a really fast blog because I need sleep, just quickly eating some toast before bed!
Anyhoo I have made up some party bags for my party and in them I have put some promotional stuff from the NHSBT website in them including forms to join the register. My cousin was round earlier and saw the fluffy bugs on the side and asked about them and I said what they where for and she asked about what been on the donor register meant (yes she is blonde! LOL) so I explained and straight away she asked how she could join the organ donor and I said that there was a form in her party bag so she said she will fill it in when she gets it and can't see why people wouldn't cus what's the point when you don't need it when your dead!
So I'm really happy, one more person to be soon be signed up... still way too many to go but every extra person is another step closer to getting that 96% signed up!!
Anyhoo I have made up some party bags for my party and in them I have put some promotional stuff from the NHSBT website in them including forms to join the register. My cousin was round earlier and saw the fluffy bugs on the side and asked about them and I said what they where for and she asked about what been on the donor register meant (yes she is blonde! LOL) so I explained and straight away she asked how she could join the organ donor and I said that there was a form in her party bag so she said she will fill it in when she gets it and can't see why people wouldn't cus what's the point when you don't need it when your dead!
So I'm really happy, one more person to be soon be signed up... still way too many to go but every extra person is another step closer to getting that 96% signed up!!
Thursday 25 March 2010
Weighty Issues
Well it is official, I'm overweight! My BMI is now 25.1. I received my letter from Heartlands reviewing my clinic last week and I realised that the weight gained was actually 4kg not 3 like I wrote a few posts ago, I then weighed myself again today and my scales say I've put on a further 3.4kg in NINE DAYS!!! This is a little scary, I know my lungs are better when I have weight on and it is better to be able to gain it easily rather than struggling to but it is definitely getting to a point where my female vanity is kicking in! And a good 70% off the weight seems to be going to my belly and boobs (I don't mind the boobs bit!) and I am totally sick of people thinking I'm pregnant (it would be an immaculate conception if I was) I even have people who have known me for ages and know I have a bit of a belly who think it now. 
Excuse the sexy PJ's but this is actually my 'sucking-in-slightly' belly! I wouldn't say I'm normally a confident person but I'm not someone who cries over a few rolls, but I just feel quite down about it right now and I really hate CF for making me need to keep a body shape I hate. Ha ha, maybe I just like moaning, when I first saw my body properly in underwear when I was 47kg I cried and now I'm 66.2kg and I want to cry again, never satisfied huh?
I also know a big part of my belly problem is because of all my muscle been cut with my transplant which makes me feel quite guilty because I know I should just be grateful because transplant is amazing but I just can't help hating this 'side effect' right now!
Anyway to end I would like to ask any CF women reading a few questions, how do you feel about gaining weight? How have you felt at your heaviest or most bloated? Have you ever wanted to lose weight? Did you? Did you try and fail? Did you not bother and is so was it to try and maintain lung function? Answers on a postcard please... Or maybe in the comments would be easier :-P
I also know a big part of my belly problem is because of all my muscle been cut with my transplant which makes me feel quite guilty because I know I should just be grateful because transplant is amazing but I just can't help hating this 'side effect' right now!
Anyway to end I would like to ask any CF women reading a few questions, how do you feel about gaining weight? How have you felt at your heaviest or most bloated? Have you ever wanted to lose weight? Did you? Did you try and fail? Did you not bother and is so was it to try and maintain lung function? Answers on a postcard please... Or maybe in the comments would be easier :-P
Wednesday 17 March 2010
Brain? Where are you?
So I do still plan on doing a blog about CF, weight and vanity and all that but I'm leaving it until I have a little more brain power.
Infact I'm not quite sure why I'm writing a blog right now, I don't really have anything to say, but then I don't really have loads to say most of the time but I still manage to write long rambling blog entries!
My phone is really playing up, it keeps deleting all my text's and my call log. It's been doing this for a while now but to start with it wasn't that often and now it does it within minutes of recieving a text or call, even if I haven't read them or realised I have a missed call. One of my friends works at The Carphone Warehouse and she said I need to link my phone up to the Blackberry webpage and do a software update but this will flash wipe my phone, AKA delete everything off it! My pics, songs and videos are mostly on my memory card and whats not I can transfer onto it but all my numbers will be gone, so I have to write them all down and then put them all back in when it's done! If that doesn't work then it's going out the window!
I should know next week if I passed my first module on my learndirect, I really hope that I have, I'm really enjoying it all and not looking forward to it finishing but at the same time can't wait to have the qualifacation. I really enjoy learning and knowing stuff, I always wish I'd put more effort into college instead of dicking around but hey!
Anyway I've really ran out of brain power/things to say so I'm off. Night all!
Infact I'm not quite sure why I'm writing a blog right now, I don't really have anything to say, but then I don't really have loads to say most of the time but I still manage to write long rambling blog entries!
My phone is really playing up, it keeps deleting all my text's and my call log. It's been doing this for a while now but to start with it wasn't that often and now it does it within minutes of recieving a text or call, even if I haven't read them or realised I have a missed call. One of my friends works at The Carphone Warehouse and she said I need to link my phone up to the Blackberry webpage and do a software update but this will flash wipe my phone, AKA delete everything off it! My pics, songs and videos are mostly on my memory card and whats not I can transfer onto it but all my numbers will be gone, so I have to write them all down and then put them all back in when it's done! If that doesn't work then it's going out the window!
I should know next week if I passed my first module on my learndirect, I really hope that I have, I'm really enjoying it all and not looking forward to it finishing but at the same time can't wait to have the qualifacation. I really enjoy learning and knowing stuff, I always wish I'd put more effort into college instead of dicking around but hey!
Anyway I've really ran out of brain power/things to say so I'm off. Night all!
Monday 15 March 2010
Quick Update
Going to try and keep this pretty short and sweet as I'm rather tired and can hear the calls of my bed!
Went to clinic today and things are rather good, FEV1/FVC back up to 67/68%, SATS -98%, weight up by nearly 3kg! Would have been a perfect clinic if it wasn't for a few diabetes and a few stomach issues. I have a CGMS (Constant Glucose Monitoring System) for the next few days to try and get a better picture with the blood sugars.
After I got home I popped to ASDA which is quite close to my house and got a few bits, nothing heavy and as I was walking home some bloke offered to carry my bags for me because his misses was due soon and he wouldn't let her struggle with bags. Firstly I wasn't struggling I was adjusting my handbag cus the strap was lying over my port and was uncomfortable after just been flushed, Secondly, 2 bags! Seriously a pregnant woman can carry 2 bags! Thirdly, oh yeah, I'M NOT BLOODY PREGNANT!!! Yeah I have a belly, but nothing too huge, and it just makes me feel quite self conscious. I think if my LF wasn't correlating so well with my weight I would defiantly be dieting, I am planning to start doing sit ups once my CGMS is out though, I wasn't really loving this weight gain much, my clothes are quite tight and this has made me hate it more. Anyway I'm hardly keeping my eyes open here so I'm going to go bed but I may write more about gaining weight/female perceptions of weight gain/LF's and all that!
Went to clinic today and things are rather good, FEV1/FVC back up to 67/68%, SATS -98%, weight up by nearly 3kg! Would have been a perfect clinic if it wasn't for a few diabetes and a few stomach issues. I have a CGMS (Constant Glucose Monitoring System) for the next few days to try and get a better picture with the blood sugars.
After I got home I popped to ASDA which is quite close to my house and got a few bits, nothing heavy and as I was walking home some bloke offered to carry my bags for me because his misses was due soon and he wouldn't let her struggle with bags. Firstly I wasn't struggling I was adjusting my handbag cus the strap was lying over my port and was uncomfortable after just been flushed, Secondly, 2 bags! Seriously a pregnant woman can carry 2 bags! Thirdly, oh yeah, I'M NOT BLOODY PREGNANT!!! Yeah I have a belly, but nothing too huge, and it just makes me feel quite self conscious. I think if my LF wasn't correlating so well with my weight I would defiantly be dieting, I am planning to start doing sit ups once my CGMS is out though, I wasn't really loving this weight gain much, my clothes are quite tight and this has made me hate it more. Anyway I'm hardly keeping my eyes open here so I'm going to go bed but I may write more about gaining weight/female perceptions of weight gain/LF's and all that!
Thursday 11 March 2010
Happier Me!!
So I took a little break from blogging, kind of intended and kind of not. Not really many reasons but I'm back now! LOL!
I'm a little sore because I'm not a good go-kart driver, I manage to bruise my abdomen, not badly but it's still quite sore so I'm best friends with paracetamol! Over all I don't feel bad, I dont think my lung function is back up to it's best but I don't think its down, so fingers crossed and I'll found out next Monday!
Went to my Dad's last week and loved it, the weather was OK but not amazing but just loved seeing the kids, everytime I see them I miss them more when I get home. Can't wait until the little man's 1st birthday cus they are coming over to England for a days for a party, talking of parties mine is coming along nicely, my flatmate has got the week off work and she wants to help with food and stuff! Things are alot better there and we had a chat, I kinda skirted around the edges of my issues but mentioned things about living donors and how unselfish it is and I think I got my point across and how important it is too me. I've ordered a few little bits off the NHSBT website to go in party bags, I have 22 people at my party, I know my Mum and Dad are already on the list and a few other people but hoping the rest of the people there will sign up too!
I still have a letter to write for my donor, I know he won't be able to read it but I still want to write it, to show how much I am thankful for what he did. This is actually proving harder to write that I first thought, I thought it would be easy because I know how much it means to me but the right words are proving hard to get onto paper!
Just before I go (I've been writing this for alot longer than I planned) I just want to say a massive congratulations to Rachael Wakefield (Rachy) who had her lung transplant yesterday, last update I heard she was out of theathre and in ICU. Can't wait to hear how she enjoy her new lungs and also to hear that other people waiting have got their calls as well (and not false alarms!)
I'm a little sore because I'm not a good go-kart driver, I manage to bruise my abdomen, not badly but it's still quite sore so I'm best friends with paracetamol! Over all I don't feel bad, I dont think my lung function is back up to it's best but I don't think its down, so fingers crossed and I'll found out next Monday!
Went to my Dad's last week and loved it, the weather was OK but not amazing but just loved seeing the kids, everytime I see them I miss them more when I get home. Can't wait until the little man's 1st birthday cus they are coming over to England for a days for a party, talking of parties mine is coming along nicely, my flatmate has got the week off work and she wants to help with food and stuff! Things are alot better there and we had a chat, I kinda skirted around the edges of my issues but mentioned things about living donors and how unselfish it is and I think I got my point across and how important it is too me. I've ordered a few little bits off the NHSBT website to go in party bags, I have 22 people at my party, I know my Mum and Dad are already on the list and a few other people but hoping the rest of the people there will sign up too!
I still have a letter to write for my donor, I know he won't be able to read it but I still want to write it, to show how much I am thankful for what he did. This is actually proving harder to write that I first thought, I thought it would be easy because I know how much it means to me but the right words are proving hard to get onto paper!
Just before I go (I've been writing this for alot longer than I planned) I just want to say a massive congratulations to Rachael Wakefield (Rachy) who had her lung transplant yesterday, last update I heard she was out of theathre and in ICU. Can't wait to hear how she enjoy her new lungs and also to hear that other people waiting have got their calls as well (and not false alarms!)
Tuesday 23 February 2010
Lost and Confused
I don't really know how to write this blog, I know alot of this stuff is just in my head and I don't know how to make it go away. It all starts a few weeks ago when I was talking to a close friend (who is also a family member) about organ donation and she said that she wasn't keen on been an organ donor because she wanted to look pretty in her coffin. She is on the donor register but only to give her kidneys because aparently they are small enough to leave too big a dent in the body so won't make her body look ugly. Anyway I know everyone is entitled to their opinions about organ donation but after having someone so close to her go through a transplant I just didn't think her reasons would be so selfish and it quite upset me.
Like I said this was about 3-4weeks ago and it's starting to ruin my friendship with this person as I just seem to see pretty much everything this person does as selfish and narcissistic, she hasn't changed at all but I can't help it. I've probably always thought she could be a bit selfish at times but now I don't really even like spending time with her but it's complicated as we live together so I can't just drop her as a friend, and I wouldn't really want to because we used to have loads of fun. Maybe I'm just been stupid but I really don't know how get past this and it's really getting me down to the point where I've even thought about moving out. I understand this sounds mad but I've got to the point where I hardly talk to her, she said she will only come to my 'Liver Party' if there is birthday cake and I nearly punched her.
I'm hoping getting this down will get it out my system, with her being family and we share most of the same friends there isn't anyone I can talk to about this but I need to get it all out before it drives me totally crazy.
Like I said this was about 3-4weeks ago and it's starting to ruin my friendship with this person as I just seem to see pretty much everything this person does as selfish and narcissistic, she hasn't changed at all but I can't help it. I've probably always thought she could be a bit selfish at times but now I don't really even like spending time with her but it's complicated as we live together so I can't just drop her as a friend, and I wouldn't really want to because we used to have loads of fun. Maybe I'm just been stupid but I really don't know how get past this and it's really getting me down to the point where I've even thought about moving out. I understand this sounds mad but I've got to the point where I hardly talk to her, she said she will only come to my 'Liver Party' if there is birthday cake and I nearly punched her.
I'm hoping getting this down will get it out my system, with her being family and we share most of the same friends there isn't anyone I can talk to about this but I need to get it all out before it drives me totally crazy.
Sunday 21 February 2010
Let's Party!!!
Ooh I'm starting to get excited about my 10th Birthday!! Well it's not really my 10th Birthday but the 10 year anniverary of my transplant, it's in 5weeks and I've decided to have a party! Nothing huge, just a bit of a 'pick-at-what-you-want' dinner, hopefully with some liver in there! I want a cake from ASDA where you have a photo on and I know it sounds weird but I have a photo of me in ICU after so I want that on, only problem is that it's a poloroid and I don't know if you can use them on the cakes! Anyhoo, I'm going to get balloons and banners with '10' on them and have a game of pin the liver on the body! And to finish... party bags, although slight twist is I'm going to put forms to join the donor register in them along with the usual slice of cake, sweets and a jokey toy of some form! I know it's a bit silly and over the top but I feel so grateful to have got to this milestone with so few problems! The day before all this madness is going to be my 'donor day.' I haven't completely decided what I'm doing but I plan to do a few things to say 'Thank You' and remember the life of someone who although I never met became the most important person in my life.
Thursday 18 February 2010
Silly lungs!
OK I'm not happy!
I blew my little lungs out on Monday and I got 1.67/1.98! 12weeks ago I had 2.13/2.something... (I'll look out the letter and edit it in later) I had FEV1 of 68% and my rough calculation for now is 54%, this is after 8weeks of oral antibiotics an 3weeks of IV's in these 12weeks. I do feel loads better, even the night time is a bit better so why is the spiro worse?
I saw the top doc in clinic, he has asked me to move my Dnase to the morning, and do it religiously and come back in 4weeks and if it's not up then... well I don't know... my lung function will be up!
On pluses my weight is up .2kg and I realised it has been rather a long time since I've had any blood in my sputum, just a bit post running in Spain over xmas so I'm thinking that's rather good.
Not a lot is happening in my life right now, well actually it is but it's all mundane crap, and stuff that's not really my crap to tell you about but still taking up my time! My nan's birthday went well, she seems very well at the moment, it's hard to explain but my Grandad was here whole life, she never went and did stuff socially because she just enjoyed been with him (and because she was a bit lazy as well.) Now she has to go out and have a social life or she is stuck in alone in a big house and it's doing her good, she looks well, healthier. She hates the nights though, going back home and being alone all night and waking up and making breakfast for one. We are hoping to take her to see 'The Phantom Of The Opera' soon as a late birthday treat. I'm really hoping it all comes together as I would really like to go myself. I remember making my ex taking me to see it at the cinema as a date and he wasn't impressed but I was really blown away with it, when I watched it on the small screen even though it was still really good it had lost a little sparkle which I think my have something to do with the 14" screen and no surround sound! LOL!
I HATE SNOW!
I blew my little lungs out on Monday and I got 1.67/1.98! 12weeks ago I had 2.13/2.something... (I'll look out the letter and edit it in later) I had FEV1 of 68% and my rough calculation for now is 54%, this is after 8weeks of oral antibiotics an 3weeks of IV's in these 12weeks. I do feel loads better, even the night time is a bit better so why is the spiro worse?
I saw the top doc in clinic, he has asked me to move my Dnase to the morning, and do it religiously and come back in 4weeks and if it's not up then... well I don't know... my lung function will be up!
On pluses my weight is up .2kg and I realised it has been rather a long time since I've had any blood in my sputum, just a bit post running in Spain over xmas so I'm thinking that's rather good.
Not a lot is happening in my life right now, well actually it is but it's all mundane crap, and stuff that's not really my crap to tell you about but still taking up my time! My nan's birthday went well, she seems very well at the moment, it's hard to explain but my Grandad was here whole life, she never went and did stuff socially because she just enjoyed been with him (and because she was a bit lazy as well.) Now she has to go out and have a social life or she is stuck in alone in a big house and it's doing her good, she looks well, healthier. She hates the nights though, going back home and being alone all night and waking up and making breakfast for one. We are hoping to take her to see 'The Phantom Of The Opera' soon as a late birthday treat. I'm really hoping it all comes together as I would really like to go myself. I remember making my ex taking me to see it at the cinema as a date and he wasn't impressed but I was really blown away with it, when I watched it on the small screen even though it was still really good it had lost a little sparkle which I think my have something to do with the 14" screen and no surround sound! LOL!
I HATE SNOW!
Saturday 13 February 2010
As different as Day and Night
So went yesterday to watch the filming of the How To Look Good Naked naked catwalk shows in the Bullring yesterday and it was amazing but such a long day and so far it feel like it's undone most of the good work of that final week of IV's. I'm hoping after a day of mostly rest today and a good night sleep I will feel good again.
Although I'm not holding my breathe on the good night sleep as I'm not sleeping well at the moment, my lungs wont let me, I feel quite well in the day but at night I just can't stop coughing, the really annoying sort of coughing where I have to fight to get the air in behind the sputum to move it. I can't work out why I feel fine in the day, tired but fine. It's like two different sets of lungs. Also I have this annoying pain that feels like my stomach is overfull and makes it painful to breath in past about half way. Not good with the coughing! Adding in the fact I'm waking up every few hours to go to the loo I'm really not getting much sleep. Did I mention my breathing is perfectly normal for me in the day? It's frustrating but what to do?
I treated my self to some clothes the other day, I haven't brought clothes for ages, I suppose I have been disillusioned with clothes shopping lately, my weight has been so up and down (mostly up) for the last year that I just felt it wasn't worth getting nice stuff for it just not to fit soon after. I didn't go crazy, got a nice skirt from the last of Topshop sale for £3 and a dress for £12 and a few bits from Primark. Quite versatile stuff that feels quite summery but can be styled very easy for winter too, so if I do put on or lose weight I can just save it for later and I won't be wearing it in the wrong weather!
Not much else to say, I'm going to see my Nan tomorrow, it's her birthday on Monday so we are having a big meal for her tomorrow, going to be rather weird with out my Grandad there. Monday I'm back over at the hospital, fingers crossed for lung function been up, if not it's a stay in Costa Del Heartlands... maybe the Bullring yesterday wasn't the best idea... oh well, sometimes I need to do things just for me, fuck if they are going to make me ill, obviously there are limits but sometimes pushing myself too far or missing an odd treatment needs to be done to keep the life balance, can't let CF rule too much ;-)
Although I'm not holding my breathe on the good night sleep as I'm not sleeping well at the moment, my lungs wont let me, I feel quite well in the day but at night I just can't stop coughing, the really annoying sort of coughing where I have to fight to get the air in behind the sputum to move it. I can't work out why I feel fine in the day, tired but fine. It's like two different sets of lungs. Also I have this annoying pain that feels like my stomach is overfull and makes it painful to breath in past about half way. Not good with the coughing! Adding in the fact I'm waking up every few hours to go to the loo I'm really not getting much sleep. Did I mention my breathing is perfectly normal for me in the day? It's frustrating but what to do?
I treated my self to some clothes the other day, I haven't brought clothes for ages, I suppose I have been disillusioned with clothes shopping lately, my weight has been so up and down (mostly up) for the last year that I just felt it wasn't worth getting nice stuff for it just not to fit soon after. I didn't go crazy, got a nice skirt from the last of Topshop sale for £3 and a dress for £12 and a few bits from Primark. Quite versatile stuff that feels quite summery but can be styled very easy for winter too, so if I do put on or lose weight I can just save it for later and I won't be wearing it in the wrong weather!
Not much else to say, I'm going to see my Nan tomorrow, it's her birthday on Monday so we are having a big meal for her tomorrow, going to be rather weird with out my Grandad there. Monday I'm back over at the hospital, fingers crossed for lung function been up, if not it's a stay in Costa Del Heartlands... maybe the Bullring yesterday wasn't the best idea... oh well, sometimes I need to do things just for me, fuck if they are going to make me ill, obviously there are limits but sometimes pushing myself too far or missing an odd treatment needs to be done to keep the life balance, can't let CF rule too much ;-)
Thursday 11 February 2010
I hate dentists
Just going to skim over the gap between now and the last post... my Grandad's funeral went really well considering, it was a very beautiful service that summed up him perfectly, simple, heartfelt with a few things thrown in to make you chuckle. I spent most of the wake in a side room having problems with my port, next day got I got my 4th needle and a few days later I had some Urokinase put into it and that seemed to do the trick. I ended up having a third week of IV's and finished Monday just gone and go back to clinic on Monday so hopefully my lung function has travelled in a different direction to the last 3 clinics and I have made up at least some,if not all of the 10% I've been down. I do feel better if not 100%.
I went for my Liver ultrasound yesterday and everything seems OK, my spleen is 16cms which is a little bigger than when the doctor measured it about a year ago. I'm showing no signs of other liver damage on the scans, the doctor doing it said it doesn't always show so they may want to do a biopsy anyway or it could be that the blood tests have picked something up before it's showed up on my liver or it might be that the blood tests are a bit off but there is nothing wrong. I'm hoping for the latter!
I can't remember whether I mentioned my learn direct course on here but I'm starting to learn stuff on it now and really enjoying it. To start with I was just going over very basic word processing and I was a little bored but now I'm getting to learning new stuff I'm really enjoying it and hopefully it's a start on getting somewhere in the whole job scene.
I went to register with a dentist, the receptionist was a bit shocked when I said I hadn't been to a dentist in 5/6years especially been post transplant, I've kinda been shouted at by my hospital for not going to the dentist so I thought I should finally bite the bullet and be a good little girl and brave it! LOL!
On a side note I am nearly 10years post transplant, just over 6weeks so I am trying to plan a few things. Something for my donor, to say thank you for giving me the gift of life and for a celebration of his life and something for me and family to mark the anniversary of my new start! Have a few ideas but not putting anything down just yet but will do something for my donor on the 28th March and something for my 10year on the 29th which is the day I actually had my transplant.
Anyway I'm off, I need sleep!
I went for my Liver ultrasound yesterday and everything seems OK, my spleen is 16cms which is a little bigger than when the doctor measured it about a year ago. I'm showing no signs of other liver damage on the scans, the doctor doing it said it doesn't always show so they may want to do a biopsy anyway or it could be that the blood tests have picked something up before it's showed up on my liver or it might be that the blood tests are a bit off but there is nothing wrong. I'm hoping for the latter!
I can't remember whether I mentioned my learn direct course on here but I'm starting to learn stuff on it now and really enjoying it. To start with I was just going over very basic word processing and I was a little bored but now I'm getting to learning new stuff I'm really enjoying it and hopefully it's a start on getting somewhere in the whole job scene.
I went to register with a dentist, the receptionist was a bit shocked when I said I hadn't been to a dentist in 5/6years especially been post transplant, I've kinda been shouted at by my hospital for not going to the dentist so I thought I should finally bite the bullet and be a good little girl and brave it! LOL!
On a side note I am nearly 10years post transplant, just over 6weeks so I am trying to plan a few things. Something for my donor, to say thank you for giving me the gift of life and for a celebration of his life and something for me and family to mark the anniversary of my new start! Have a few ideas but not putting anything down just yet but will do something for my donor on the 28th March and something for my 10year on the 29th which is the day I actually had my transplant.
Anyway I'm off, I need sleep!
Monday 25 January 2010
IV's and my Grandad
OK so I'm sure anyone with CF will know what I'm talking about when I say about some days just really knock the wind out your sails, you can have felt really healthy the day before and then BAM! Chest really hurts, extra coughing/coughing fit every few steps, just talking can make you breathless and all you want to do is skip to the next day, Thursday before last (14th) was one of those days although I hadn't felt healthy the day before. I had clinic and was pretty sure I needed IV's and was right, missed the first train coming back and then the next one was cancelled, I felt so tired that I kept just crying on the station and I really wanted to get home. Finally did after rather a while and then I wished I hadn't although it wouldn't have changed things. Earlier in the day my Grandad had suffered from a huge heart attack and passed away. I can't even begin to explain how hard those words were to hear, my Grandad was one of those people you expected to be around forever, despite been 77 he seemed to be the healthiest person in our family. He was very active and even though he was retired he still did odd building jobs for people, he was actually on his way to look at a job when he died. I still haven't got my head round the fact he is gone, silly little things like DIY jobs, I keep looking at little things and thinking 'ooh, I'll have to ask Grandad about that.' and then it hits me that I can't...
He was a short man, ab0ut 5", and my younger brother (6"3') used to jokingly lean on his head! Always worrying about something little but the big things used to go over his head. The best brickie in the town, not the fastest but got the job done to perfection. Always had a little invention, not the sort to make him rich but to make his jobs a whole load easier. Loved having a mobile phone but didn't have a clue how to use it, had to check with one of the grandkids if it was even charged. Wore clothes to bed (including trainers) cause he didn't like having the radiator on all night! Loved my Nan, wholely and unconditionally for over 50years and has left the biggest hole in her life, he was the biggest part of her life.
Life is so precious, so sacred, you never know when it is going to be taken from you... I really dont know what else to say right now...
He was a short man, ab0ut 5", and my younger brother (6"3') used to jokingly lean on his head! Always worrying about something little but the big things used to go over his head. The best brickie in the town, not the fastest but got the job done to perfection. Always had a little invention, not the sort to make him rich but to make his jobs a whole load easier. Loved having a mobile phone but didn't have a clue how to use it, had to check with one of the grandkids if it was even charged. Wore clothes to bed (including trainers) cause he didn't like having the radiator on all night! Loved my Nan, wholely and unconditionally for over 50years and has left the biggest hole in her life, he was the biggest part of her life.
Life is so precious, so sacred, you never know when it is going to be taken from you... I really dont know what else to say right now...
Friday 22 January 2010
Xmas, New Year and Jess.
Spain was wicked, loved waking up everyday and not having snow all around and having the kids there. Seeing Sofia face at the chocolate coins 'Santa' had left her leading from her room to her presents, and boy was there presents! Me and my dad had taken almost two full suitcases over from all my family. Marucs didn't understand the whole presents thing but he did love playing with his toys! Me being so clever managed to break my eflow as soon as I first went to use it... oh this reminds me of when I went to Corfu a few years ago and I was in hosp within a few days of been back, this time was 5days before I was put on IV's. I did buy an air compressor over there which was a blast from the past, slow and noisy, after 3days with no combivent it felt like heaven in my lungs!
As my Dad has a gym in his house I decided to try and run a bit (as no-one there to see me making a twat of my self) and was quite a good job as first time I fell off the back, I did get better in the time I was there and was running for 4mins by the end but OMG it hurt!! Anyway when I got back it my lung function was only down a further 1% so it must have done some good.
Whilst I was there the wonderful Jessica Wales finally got her transplant after more than 4years on the list. I had only spoken to Jessica a handful of times but she was one off those people who you couldn't help but admire, a real fighter, the sort of person who you expected to fight through everything, sadly after so long waiting her body was too weak to recover from such a huge operation and she passed away just a few weeks later. This hit me like a tonne of bricks, I never thought I would feel this way about someone I never met and hardly spoken to but it really did. Just a few days before I was talking to my flatmate about organ donation, I knew she wasn't on the donor list but I never pushed it, I know she isn't against been an organ donor but still... she is filling in her drivers license form at the moment and I said to her 'you are going to tick the box to be an organ donor aren't you? It's the quickest way to do it.' and she just sort of mumbled that she didn't want to think about dying, this did kind of annoy me a little but I just said to her 'Yeah but you spending two minutes thinking about it means someone could stop thinking about it' another mumble, I could see she was uncomfortable but pushed on telling her that not joining the list wouldn't mean she would live forever or that she wouldn't have a fatal accident just that it could mean potentionally two people could die. Anyway she has ticked the box but it got me thinking about people's perpectives about things, why would people think about stuff like that if they didn't have to? And how can we make people think about things? How can peoples perspectives be changed so more lives be changed?
As my Dad has a gym in his house I decided to try and run a bit (as no-one there to see me making a twat of my self) and was quite a good job as first time I fell off the back, I did get better in the time I was there and was running for 4mins by the end but OMG it hurt!! Anyway when I got back it my lung function was only down a further 1% so it must have done some good.
Whilst I was there the wonderful Jessica Wales finally got her transplant after more than 4years on the list. I had only spoken to Jessica a handful of times but she was one off those people who you couldn't help but admire, a real fighter, the sort of person who you expected to fight through everything, sadly after so long waiting her body was too weak to recover from such a huge operation and she passed away just a few weeks later. This hit me like a tonne of bricks, I never thought I would feel this way about someone I never met and hardly spoken to but it really did. Just a few days before I was talking to my flatmate about organ donation, I knew she wasn't on the donor list but I never pushed it, I know she isn't against been an organ donor but still... she is filling in her drivers license form at the moment and I said to her 'you are going to tick the box to be an organ donor aren't you? It's the quickest way to do it.' and she just sort of mumbled that she didn't want to think about dying, this did kind of annoy me a little but I just said to her 'Yeah but you spending two minutes thinking about it means someone could stop thinking about it' another mumble, I could see she was uncomfortable but pushed on telling her that not joining the list wouldn't mean she would live forever or that she wouldn't have a fatal accident just that it could mean potentionally two people could die. Anyway she has ticked the box but it got me thinking about people's perpectives about things, why would people think about stuff like that if they didn't have to? And how can we make people think about things? How can peoples perspectives be changed so more lives be changed?
I'm back
I finally have internet access! I have been looking at netbook/dongle combo's for quite a while now and yesterday I just went for it and am now the owner of a Samsung N140 netbook and a dongle from 3.
I have so much stuff I need to blog about, it's been a long, hard few weeks and I have a lot in my head, I will do a few update blogs over the next few days rather than stick everything in one long blog and I'll try and write these how I felt at the time rather than with hindsight. I don't know how well I will be able to do this but I'll try, it's weird how hindsight changes your perspectives. Perspective is kind of a buzz word for me right now but I will explain more about that later.
Anyway I have to go right now but I will try and do the first of these update blogs later.
I have so much stuff I need to blog about, it's been a long, hard few weeks and I have a lot in my head, I will do a few update blogs over the next few days rather than stick everything in one long blog and I'll try and write these how I felt at the time rather than with hindsight. I don't know how well I will be able to do this but I'll try, it's weird how hindsight changes your perspectives. Perspective is kind of a buzz word for me right now but I will explain more about that later.
Anyway I have to go right now but I will try and do the first of these update blogs later.
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