I wanted to keep this post seperate to the below.
I'm not loving the winter right now, it's bloody cold and I have a chest infection! BOO! I also had my rentinal screening done on Tuesday, I have mild changes to my eyes due to diabetes but I was told not to worry and should change back once I get my diabetes back under better control.
On Monday night Tori had a call for transplant but sadly the lungs where badly damaged so thats her 6th false alarm under her belt, fingers crossed for number 7!
An old friend of mine is coming back from London tomorrow, just till Saturday, so I am meeting her for a few hours in the afternoon. I haven't seen her in over a year and I wasn't too well last time I saw her so I think she will be quite shocked to see me carrying some weight and not coughing every other word! I'm sure she will shock me some how, probably turn up and she will have a blonde bob (she had long dark hair last time I saw her!)
Getting really excited about Spain now... just 4 weeks til I go! YAY!!!
Thursday 26 November 2009
R.I.P. Jo x
This post is to say goodbye to Joanne Dowling, 20th July 1984- 24th November 2009.
Jo was a fighter, she fought C.F. with every breath she took. She was so looking forward to life with her new lungs but she never got that chance. I always thought she would fight her way through anything until she got her new lungs, but sadly this wasn't the case.
Jo will be sadly missed by many, she was friendly, bubbly woman. She wasn't afraid of expressing her opinion and always stood up for herself but she was always there with advice or just a friendly word when needed.
She loved cake and Betty Boop, so on the day of her funeral I'm gunna have a big slice of cake and drink out my Betty Boop mug. I'm sure where ever she is now, she will be touched to know how loved she was and I hope she is dancing, free from o2 and all the restrictions her CF put on her body, with a big smile and a slice of cake.
Breathe Easy now Jo, you fought so hard, now it's time to rest. x
Jo was a fighter, she fought C.F. with every breath she took. She was so looking forward to life with her new lungs but she never got that chance. I always thought she would fight her way through anything until she got her new lungs, but sadly this wasn't the case.
Jo will be sadly missed by many, she was friendly, bubbly woman. She wasn't afraid of expressing her opinion and always stood up for herself but she was always there with advice or just a friendly word when needed.
She loved cake and Betty Boop, so on the day of her funeral I'm gunna have a big slice of cake and drink out my Betty Boop mug. I'm sure where ever she is now, she will be touched to know how loved she was and I hope she is dancing, free from o2 and all the restrictions her CF put on her body, with a big smile and a slice of cake.
Breathe Easy now Jo, you fought so hard, now it's time to rest. x
Sunday 22 November 2009
Food Fears
Right so I said in my last blog I would explain a little more about my issues with food so here we are. To look at me you would think I didn't have any, I'm a very healthy weight, just over 24 on the BMI and I have a large appitite. But the dietian showed me a list of the foods I eat and there was only about 10things on it. I should go on that freaky eating show. My diet consists of toast, cereal, pasta, cheese, crisps, popcorn, pizza, yogurt drinks, choclate, tinned meatballs and wholemeal pitta breads... really not a lot else and the other stuff I do, it's not often. It's kind of repetitive and although it's all high calorie it's not very nutrious.
The worst thing is that I hate trying new things and things I don't like I'm actually kinda scared off, I hate banana, tomato, beans, mushroom, fish... there are lots of other things but they are the first 5 off the top of my head. Even just thinking about them is making my stomach turn. If my flatmate makes something with beans on and it's my turn to wash up I have to leave it, I know nothing will happen if I touch the juice or even a bean but it's a big like OCD, I get the feeling that something bad will happen, when I was working at the Co-op I could only touch banana's is when they where ripe and as soon as they had black spots on or if the skin was slightly split I just couldn't do it! If something is banana flavoured I will throw up or if I can smell it I start heaving. Weirdly I used to love beans and bananas when I was younger, bananas til about 6 and beans a bit longer. I don't mind tomato juice or puree but the lumps or chunks is what makes me cringe there, I can touch the lumps or chop up tomatoes those but I couldn't put them in my mouth same with mushrooms, I can touch them but not put them in my mouth. Fish is the the weirdest because mostly I feel the same way as beans or bananas but sometimes I will get a craving for it and have to eat some then about an hour after eating it the 'fear' thing will hit me in a wave and start throwing up loads and loads.
Next weird thing is even food I like if I decide that it won't taste nice or isn't prepared how I would like I can't bring my self to touch it, this poses the most problems with hospital food, I'm so glad just by Heartlands is a McDonalds, Subway, pizza place, chippy and there a few other I never been to, so I get some exercise and still eat in one hit.
Trying new foods, this is actually getting slightly easier, I have tried a few things at the chinese and have tried pidgeon meat (well tasty actually) and roasted butternut (not so tasty). Most of these things though I will only try once and even if I like them will never eat them again! Plus if I look at things and decide I don't like the look of something I won't be able to try it because... well it's like a fear thing, I think something bad will happen! It's crazy I know!
Last thing, well it's not but last I'm going to write about, (this is turning into a long blog!) is cravings, if I get a craving for something then I have to have it, if I don't then I will sit and obsess about it till I have it, I've known me crave thing for days before I've finally given in or I would have gone insane and needed the men in the white coats! This bit is the worst bit to my diabetes control because even if I craved a spoon of sugar I would go crazy if I didn't have it! I have never craved a spoon of sugar though, custard is one I crave quite a bit though and Twix bars.
I have been working with my dietians for a few months now to try and help this, to start with they were just trying to get the weight on me but now it's on and stable they want to address it as my nutricion is shocking and they are concerned about just how limited my diet is. Still however bad my diet is now it's definately a step up from before my transplant when I hardly ate at all and I never tried new stuff at all and anything I didn't like got projectile vomited across the room! Hopefully one day I will be able to eat normally and touch foods and stuff normally like normal people, although I doubt I will ever be normal though!
The worst thing is that I hate trying new things and things I don't like I'm actually kinda scared off, I hate banana, tomato, beans, mushroom, fish... there are lots of other things but they are the first 5 off the top of my head. Even just thinking about them is making my stomach turn. If my flatmate makes something with beans on and it's my turn to wash up I have to leave it, I know nothing will happen if I touch the juice or even a bean but it's a big like OCD, I get the feeling that something bad will happen, when I was working at the Co-op I could only touch banana's is when they where ripe and as soon as they had black spots on or if the skin was slightly split I just couldn't do it! If something is banana flavoured I will throw up or if I can smell it I start heaving. Weirdly I used to love beans and bananas when I was younger, bananas til about 6 and beans a bit longer. I don't mind tomato juice or puree but the lumps or chunks is what makes me cringe there, I can touch the lumps or chop up tomatoes those but I couldn't put them in my mouth same with mushrooms, I can touch them but not put them in my mouth. Fish is the the weirdest because mostly I feel the same way as beans or bananas but sometimes I will get a craving for it and have to eat some then about an hour after eating it the 'fear' thing will hit me in a wave and start throwing up loads and loads.
Next weird thing is even food I like if I decide that it won't taste nice or isn't prepared how I would like I can't bring my self to touch it, this poses the most problems with hospital food, I'm so glad just by Heartlands is a McDonalds, Subway, pizza place, chippy and there a few other I never been to, so I get some exercise and still eat in one hit.
Trying new foods, this is actually getting slightly easier, I have tried a few things at the chinese and have tried pidgeon meat (well tasty actually) and roasted butternut (not so tasty). Most of these things though I will only try once and even if I like them will never eat them again! Plus if I look at things and decide I don't like the look of something I won't be able to try it because... well it's like a fear thing, I think something bad will happen! It's crazy I know!
Last thing, well it's not but last I'm going to write about, (this is turning into a long blog!) is cravings, if I get a craving for something then I have to have it, if I don't then I will sit and obsess about it till I have it, I've known me crave thing for days before I've finally given in or I would have gone insane and needed the men in the white coats! This bit is the worst bit to my diabetes control because even if I craved a spoon of sugar I would go crazy if I didn't have it! I have never craved a spoon of sugar though, custard is one I crave quite a bit though and Twix bars.
I have been working with my dietians for a few months now to try and help this, to start with they were just trying to get the weight on me but now it's on and stable they want to address it as my nutricion is shocking and they are concerned about just how limited my diet is. Still however bad my diet is now it's definately a step up from before my transplant when I hardly ate at all and I never tried new stuff at all and anything I didn't like got projectile vomited across the room! Hopefully one day I will be able to eat normally and touch foods and stuff normally like normal people, although I doubt I will ever be normal though!
Saturday 21 November 2009
Clinic
So clinic went well on Thursday. My FEV1 was up by 1% and my FVC was down by 5%. My chest sounded pretty good and weight was down by 0.3kg. I've been put on oral Trimethropin for 2weeks although I'm not 100% why, I only grew a light growth of Staph in my last sputum sample and no Psuedo or Aspergillus, I don't think I've ever seen Staph with light growth written next to it, I was happy when I saw moderate growth a few months ago! Still I'm not too bothered, anything to keep me well heading towards Christmas. I also have to email my dietitian everyday with what I eat, what creon I take and what bowel movements (sorry to mention poo in my blog again!) I have to see if I need to just adjust my creon or take something to erm... move things along! I also have a food fear thing to do (I will explain more about that in another blog, I'm too tired now) but she thinks it's really positive that I have tried some new foods!
One quick last thing before I go, I just found a spare filter in my eflow box and did a Combivent through it and I couldn't believe how quick it was, Mucoclear has seriously clogged up my filter and was making it take ages but I am keeping it just to do Mucoclear through so I don't ruin this one! I was ashamed to say that my compliance on nebs hasn't been amazing over the last few weeks because each one was taking at least 30mins! Anyway now I have my new filter will be doing them all again.
One quick last thing before I go, I just found a spare filter in my eflow box and did a Combivent through it and I couldn't believe how quick it was, Mucoclear has seriously clogged up my filter and was making it take ages but I am keeping it just to do Mucoclear through so I don't ruin this one! I was ashamed to say that my compliance on nebs hasn't been amazing over the last few weeks because each one was taking at least 30mins! Anyway now I have my new filter will be doing them all again.
Wednesday 18 November 2009
My 1st you-tube video!
Just a really quick blog. I've been putting this together for a few weeks now, my first ever you-tube video.
I have clinic tomorrow so will be blogging how all that goes then.
(quick edit to say that I got the idea for this video from Gemma (MissisGG) and 'The Secret Life of CF' http://www.youtube.com/watch?v=JxhP3zPMiDA )
I have clinic tomorrow so will be blogging how all that goes then.
(quick edit to say that I got the idea for this video from Gemma (MissisGG) and 'The Secret Life of CF' http://www.youtube.com/watch?v=JxhP3zPMiDA )
Sunday 15 November 2009
Issues and Tissues
I don't quite know how to explain this so bear with me... I've felt a bit weird these last few days, like my head is so full of thoughts it wants to explode. I don't feel the same now, it just seems to have melted away! I can't put it all down on paper (well laptop) because I can't really articulate whats swimming round my head that well, it's partially man things but that's not for this blog right now. Now something that I can give as a reason is people's attitude to life, I love my mates to death but sometimes their attitude drives me insane, I was talking to my flatmate (who is also my cousin) and we realised that even though we don't always see eye-to-eye we have the same life-is-too-short attitude. We share a lot of the same friends and they often hold grudges and the spend hours bitching over the same people and it's just like 'for god sake get over it!' I mean there is a lot of people I really don't like and I mean I really don't like them but day to day I don't even give them the time of day, if they piss me off I'll say what I have to say and then that's it! I just can't see where people have all this energy to be hating people, and the time, I'm not working at the moment and I couldn't find the time to dislike people this much, or maybe I could but I'd rather spend my non-CF treatment time doing better things! Next thing kinda sticking to the friend thing is that for some reason people think I'm agony aunt and that offloading all their problems on me is perfectly fine! Now I'm not been a grump here although it may sound it but I very rarely go to my mates when I have problems, probably less than once a month, but they always seem to be off loading their problems on me and although I do care it is hard to be caring when people are practically wanting me to live their lives for them and ringing me for advice on practically every decision bar what to use to wipe their arse with! Now I honestly can't see why they would want my advice for a start, I have a car wreck of a life and they just seem to call me at the wrong time, just as I'm about to start a neb or during physio. So the other day my head was so full of stuff swimming around and so when I woke up the other day with 5missed calls and had another 4 while doing my first neb I just turned my phone on silent and left it like that for a few days, my head was up my arse and I needed some space on my own to pull it out. That was a little bit of a rant but I needed to have it... sorry and I will breathe now! LOL
The other day as I was getting into the bath a wave of emotion hit me, I was thinking about different people who are waiting for transplants and how it's been nearly 10years since mine and a huge wave of tears hit me, tears of happiness for how lucky I was to be on the list for such a short amount of time and how well everything went after, tears of sadness for the fact that a family had to lose someone they loved so my family didn't, for the fact that there are so many people who never got the chance to have their transplant. Transplantation is such an emotive issue and I hope that most people never have to be on either side of the coin but at the same time I would hope that they would sign the organ donor register just in case the worst should ever happen!
Anyway now this post is going to take a complete turn around to Christmas! I am so excited already, my dad wants to spend it in Spain so he is paying for me to fly over on Xmas Eve and back here just after New Year. The past few years I have felt like crap at Christmas and been in Heartlands long after, mostly just into January, last year was on 29th Dec. This year I feel the best going into winter I have done for years though so I feel this is a good start!
Anyway I am so tired I can barely keep my eyes open so this post ends here
Night!
The other day as I was getting into the bath a wave of emotion hit me, I was thinking about different people who are waiting for transplants and how it's been nearly 10years since mine and a huge wave of tears hit me, tears of happiness for how lucky I was to be on the list for such a short amount of time and how well everything went after, tears of sadness for the fact that a family had to lose someone they loved so my family didn't, for the fact that there are so many people who never got the chance to have their transplant. Transplantation is such an emotive issue and I hope that most people never have to be on either side of the coin but at the same time I would hope that they would sign the organ donor register just in case the worst should ever happen!
Anyway now this post is going to take a complete turn around to Christmas! I am so excited already, my dad wants to spend it in Spain so he is paying for me to fly over on Xmas Eve and back here just after New Year. The past few years I have felt like crap at Christmas and been in Heartlands long after, mostly just into January, last year was on 29th Dec. This year I feel the best going into winter I have done for years though so I feel this is a good start!
Anyway I am so tired I can barely keep my eyes open so this post ends here
Night!
Monday 9 November 2009
No title, Just bits of my life!
Evening all,
So firstly I'm gunna send some love to my little brother Marcus, he is poorly with a chest infection, he doesn't have CF but Shelly still took him to the hospital and he has some antibiotics so hopefully he be feeling better soon. Was on the phone to my dad earlier and he said is was really weird because it brought back memories of when I was little and having chest infections, he said he was expecting the same antibiotics that I used to have!
I have my first coldsore of the winter but it's almost inside my mouth so I won't be able to stick on a compeed patch (I love those things) but it isn't really visable so not too bothered at the moment. Need to find something to treat it with though so it doesn't spread. But still this is very, very good, I had my first one in September last year! After I had my transplant I had a big outbreak of viral herpes which covered my lips and about half a cm around them. I really hated it, was a big scabby, bloody and puss filled mess, and I was actually glad I couldn't go into school or shops! I was told that the infection would lie dormant in my body and flair up whenever I was ill or rundown. Luckily it's never been as bad as that since but I do get quite a few, normally in the winter, but I did have one in May this year. Weirdly this one I don't feel ill or rundown, in fact I feel pretty damn good!
Yeah feeling good, I was doing my physio yesterday and beforehand I did a deep breath in and out (just to see if I could feel where my sputum was) and as I was breathing in it just seemed to go deeper and deeper, as I reached where I felt I would usually be 'full' I just carried on and felt like I got about a quarter more again in! It felt AMAZING!!!
Of course my body does like to put it's own little dampner on things so my belly decided to play up and cause me a lot of pain that night. All because I ate some cheesestrings! To be fair I did eat them a bit late but still I took creon so don't know why it had to kick up such a fuss but I was awake til 6.30am with cramps and a sicky feeling, NOT HAPPY!
I have been trying to grow my nails, I have bitten them since I was little but I do find it a little disgusting so am trying to stop, haven't bitten them for 3days now and the pics below where taken after 2days, and this IS an improvement on before even though they are stupidly short, they are a bit longer again now though. The thing is that the longer I don't bite them for the more disgusting I find the idea of biting them as I have to continuously clean dirt from under them! If I keep it up I plan on treating myself to a manicure just before xmas!
So firstly I'm gunna send some love to my little brother Marcus, he is poorly with a chest infection, he doesn't have CF but Shelly still took him to the hospital and he has some antibiotics so hopefully he be feeling better soon. Was on the phone to my dad earlier and he said is was really weird because it brought back memories of when I was little and having chest infections, he said he was expecting the same antibiotics that I used to have!
I have my first coldsore of the winter but it's almost inside my mouth so I won't be able to stick on a compeed patch (I love those things) but it isn't really visable so not too bothered at the moment. Need to find something to treat it with though so it doesn't spread. But still this is very, very good, I had my first one in September last year! After I had my transplant I had a big outbreak of viral herpes which covered my lips and about half a cm around them. I really hated it, was a big scabby, bloody and puss filled mess, and I was actually glad I couldn't go into school or shops! I was told that the infection would lie dormant in my body and flair up whenever I was ill or rundown. Luckily it's never been as bad as that since but I do get quite a few, normally in the winter, but I did have one in May this year. Weirdly this one I don't feel ill or rundown, in fact I feel pretty damn good!
Yeah feeling good, I was doing my physio yesterday and beforehand I did a deep breath in and out (just to see if I could feel where my sputum was) and as I was breathing in it just seemed to go deeper and deeper, as I reached where I felt I would usually be 'full' I just carried on and felt like I got about a quarter more again in! It felt AMAZING!!!
Of course my body does like to put it's own little dampner on things so my belly decided to play up and cause me a lot of pain that night. All because I ate some cheesestrings! To be fair I did eat them a bit late but still I took creon so don't know why it had to kick up such a fuss but I was awake til 6.30am with cramps and a sicky feeling, NOT HAPPY!
I have been trying to grow my nails, I have bitten them since I was little but I do find it a little disgusting so am trying to stop, haven't bitten them for 3days now and the pics below where taken after 2days, and this IS an improvement on before even though they are stupidly short, they are a bit longer again now though. The thing is that the longer I don't bite them for the more disgusting I find the idea of biting them as I have to continuously clean dirt from under them! If I keep it up I plan on treating myself to a manicure just before xmas!
Hmmm I do have some others things I want to post about but they are going to have to wait till tomorrow as I am knackered and can hear my bed calling 'Kate, come here Kate, lie down on me Kate and pull that duvet over you!' LOL.
Night all x
Tuesday 3 November 2009
Still Un-named!
I have realised after how many months of having this blog I still haven't got a name for it! I'm thinking I should really think of one before the end of this month now, any suggestions in the comments box please (and thank you!)
Sunday 1 November 2009
Good times!
So I had a really good clinic on Monday, my lung function is the highest it has been since 'the big drop' I had last year. Last year I lost just under a litre of lung function in a short amount of time and I've really struggled to get it back, well I haven't completely but this is the closest I have been so really pushing for that extra 0.19litre now! It has made all the hard work really worthwhile, I will definately be keeping up all the extra physio now I've seen the results! Oh and my weight is the highest it has ever been, BMI of 24.3 now, so I'm aiming for over 25 so I can say I'm overweight!
Went out for Halloween last night, was quite good, I was sober and most of my mates were really drunk which was funny but at times got a bit annoying cus they was all trying to kick off. I saw John and we had a little chat, was a little weird but he was sober (not like him at a weekend!) so I know it wasn't just beer talk which was nice.
My friend Kirsty is in town for the weekend, she moved to Grimsby about 5years ago an I haven't seen her for nearly two years even though we always talking on facebook and MSN so I am waiting for her to text me and let me know they are ready and then going to go meet her and her brother, well they are coming to pick me up!
Went out for Halloween last night, was quite good, I was sober and most of my mates were really drunk which was funny but at times got a bit annoying cus they was all trying to kick off. I saw John and we had a little chat, was a little weird but he was sober (not like him at a weekend!) so I know it wasn't just beer talk which was nice.
My friend Kirsty is in town for the weekend, she moved to Grimsby about 5years ago an I haven't seen her for nearly two years even though we always talking on facebook and MSN so I am waiting for her to text me and let me know they are ready and then going to go meet her and her brother, well they are coming to pick me up!
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