Right I'm going to start this post by saying it is going to be very random and (as the title says) very jumbled! I'm kinda using this post like the pensive in 'Harry Potter', somewhere to put my thoughts, look back over and try to make sense of them!
I've been thinking about my transplant a lot lately, and that so many people don't get their transplant and after seeing that little Ethan Collins passed away so soon after his transplant (RIP), it's just made me feel so lucky about mine, I obviously knew I was so lucky to have mine so soon but it's just really seems to have hit me just how lucky I was. I was on the list just 4weeks!! Home with in 14days and apart from a problem 2months later (a reaction between my anti rejection and antibiotic) I haven't had major problems and not even a hint of rejection in over 9years! I just wish everyone would sign the donor list... in an ideal world hey!
Now a few weeks ago when I was on IV's the euro millions jackpot was really high John made a comment that if we won he would buy me some new lungs. The weirdest thing is without even thinking I said 'I wouldn't want them, I'm happy with these for now!' and it's really got me thinking, I never thought I would defend my little lungs but even though they offer a home to undesirables they do still push through and keep me going. They aren't the best but for CF lungs they definitely aren't the worst! I just felt like I had to defend them even though normal I slate them myself! I think I may post about this on the CF forum, see if others have stood up for their lungs no matter how crappy they are!
Really not happy about this chest infection, and there is no denying I have one now. It's kinda given me a love/hate relationship with my port, before I went in for it I felt pretty fab and was feeling loads better after just a few days of orals and didn't really need IV's other than for the fact of it been inserted! Even though it's probably not really to do with the port I just haven't felt as good since, I've been on orals for a week tomorrow and I feel no better and I'm finding work more tiring than when I started back last week. I'm so used to bouncing back from everything, hmmm... I really can't add up my feelings about this, what I should be feeling and what I am feeling. I don't know!
I looked after my 8 month old goddaughter today and picked up her older brother from school (at the end of the road) she was so good and sleep most of the time but it was still so exhausting and then having to go to work after was awful. I felt really shattered and made mistakes. It has (this might not make sense because I really can't think how to word it) put things into a kinda head over heart situation for me. Just lately we have been thinking, with my LF going up and stuff, maybe children in the future where a possibility and now today has made me realise that I wouldn't be able to cope. It just hurts, I know girls who just get pregnant for more benefits and I'm not saying they don't love their kids but they just seem to take having kids so much for granted and... I really can't find the words to finish this, my head won't match words to what I feel and what I'm trying to say :-(
Wednesday 20 May 2009
Thursday 14 May 2009
Urgh!
Went to clinic today, lung function was down by 0.01Litre but (and I don't quite understand it) something to do with my weight going down by 0.5kg (think I've lost fluid weight not proper weight) means that the FEV1 has gone up by 1%. All these figures confuse me! So some of the signs (increases in sputum which is lots stickier and greener, bit more rattlely in chest, general crappy and tired shitty feeling!) are pointing towards another chest infection but 0.01 down isn't much to cough at. Was really really productive this morning and cleared loads of crap of my chest, gets to hospital and... NOTHING!! Ended up doing a cough swab, walked out the hospital not even half way across carpark I coughed and up came huge lump of sputum, how typical? Have brought home a sample pot for next time to do in the morning! My last sample was apparently clear though but both me and my doc think there wasn't enough in the sample, mainly just spit rather than actually having bug free sputum! Anyway I have some Cipro and if i still feel like this in a few days to start taking it, think I prob will, wanna be as close to 100% as poss for my holiday and really don't want IV's when I get back! Not very happy about it though, only finished IV's on the 1st, normally manage 4-6weeks after IV's before I need orals so 2 is pretty pants.
Went to primark and got some really funky neon stuff for Sat night, it's a mates 21st and we are going out in compete neon overload, it should be pretty cool apart from a few people are planning on going out with water guns, now we did this a while ago, I got soaked, got an infection and needed IV's so if people do bring them out and they so much as point them at me I will stick the guns where the sun don't shine! I have been looking forward to this holiday since I found out Shelly was pregnant and nothing is going to ruin it! (God that makes me sound a bit spoilt and 'I want everything my way!' I'm not, Honestly!) Anyway as I was paying for my stuff I had a ickle coughing fit in the queue and the girls behind me stepped back and started talking about swine flu! Even said about me touching the rail after I'd covered my mouth with my hand! I nearly told them it was OK I didn't have swine flu so they where 'safe' but then one of them gave me a dirty look so I didn't, let them get all paranoid! I think people are really going stupid over the whole swine flu thing but on the plus side I have noticed people are thinking more, at work not one person coughed without at least covering their mouth (normally it's straight in my face!)
Work... now there is a subject, 26days off and 2days back and it's been a struggle so far, even though it's only 3hours per shift they have been really exhasting me! Now one of my problems is that when I'm on IV's I nap, normally one late-morning/noon and one about 7pm and I work 5-8pm so 2hours in and my body is wanting it's nap. I always have this when I go back to work and it sorts itself out after a week or so! But I have also been having a general tiredness and major probs concentrating, have made quite a few mistakes, prob more in 2days than I normally make in a few months. I'm really hoping it doesn't last long and I start feeling more normal soon!
Anyway talking of tiredness, I've had a long day and need my bed so goodnight!
xx mwah xx
Went to primark and got some really funky neon stuff for Sat night, it's a mates 21st and we are going out in compete neon overload, it should be pretty cool apart from a few people are planning on going out with water guns, now we did this a while ago, I got soaked, got an infection and needed IV's so if people do bring them out and they so much as point them at me I will stick the guns where the sun don't shine! I have been looking forward to this holiday since I found out Shelly was pregnant and nothing is going to ruin it! (God that makes me sound a bit spoilt and 'I want everything my way!' I'm not, Honestly!) Anyway as I was paying for my stuff I had a ickle coughing fit in the queue and the girls behind me stepped back and started talking about swine flu! Even said about me touching the rail after I'd covered my mouth with my hand! I nearly told them it was OK I didn't have swine flu so they where 'safe' but then one of them gave me a dirty look so I didn't, let them get all paranoid! I think people are really going stupid over the whole swine flu thing but on the plus side I have noticed people are thinking more, at work not one person coughed without at least covering their mouth (normally it's straight in my face!)
Work... now there is a subject, 26days off and 2days back and it's been a struggle so far, even though it's only 3hours per shift they have been really exhasting me! Now one of my problems is that when I'm on IV's I nap, normally one late-morning/noon and one about 7pm and I work 5-8pm so 2hours in and my body is wanting it's nap. I always have this when I go back to work and it sorts itself out after a week or so! But I have also been having a general tiredness and major probs concentrating, have made quite a few mistakes, prob more in 2days than I normally make in a few months. I'm really hoping it doesn't last long and I start feeling more normal soon!
Anyway talking of tiredness, I've had a long day and need my bed so goodnight!
xx mwah xx
Tuesday 12 May 2009
Port pics
Port a few hours after been put in...
Port now (3weeks later)...
Port now (3weeks later)...
I think it's healed really well and from a distance can't even see it!
And waiting! Lol!
Well still no Marcus... she has had a show (I only found out what that meant the other day!) and head is engaged but still not come out!
Went to the gym today to see the trainer, was meant to go last week but I was naughty and cancelled! Anyway it was to sort out a new routine because for a bit while port settles, I'm not allowed to do cross trainer, bike crunches, the plank, power plates or any cable weights which left me with bike and treadmill totalling 25mins! I do like my new routine although it is possible I will die of exhaustion half way through! Even my strengthening and toning floor exercises have an element of cardio-vascular!
Go back to work tomorrow, which lazy Kate doesn't want to do but bored Kate can't wait for... plus I miss the girls, anyway as of tomorrow I am Princess Dolly again! (although technically it's later today! I must go to bed soon.)
Saw a lovely doctor at my GP's today, can't really say what made her so lovely, she just was. Forgot to take my sharps bin with me though... again! It has been full for about a month now, will try and remember to take it with me to hosp on Thursday although I might get a few looks on the train, oh well if I add in a few sneezes and oinks I might get a carriage to myself! Lol!
Very close to holiday now, really can't wait now, so much crap has been going on which I won't bore you with on here but 10days away will really help me relax and sort my head out while away from all the shit. Still gotta come back to it though :-(
Went to the gym today to see the trainer, was meant to go last week but I was naughty and cancelled! Anyway it was to sort out a new routine because for a bit while port settles, I'm not allowed to do cross trainer, bike crunches, the plank, power plates or any cable weights which left me with bike and treadmill totalling 25mins! I do like my new routine although it is possible I will die of exhaustion half way through! Even my strengthening and toning floor exercises have an element of cardio-vascular!
Go back to work tomorrow, which lazy Kate doesn't want to do but bored Kate can't wait for... plus I miss the girls, anyway as of tomorrow I am Princess Dolly again! (although technically it's later today! I must go to bed soon.)
Saw a lovely doctor at my GP's today, can't really say what made her so lovely, she just was. Forgot to take my sharps bin with me though... again! It has been full for about a month now, will try and remember to take it with me to hosp on Thursday although I might get a few looks on the train, oh well if I add in a few sneezes and oinks I might get a carriage to myself! Lol!
Very close to holiday now, really can't wait now, so much crap has been going on which I won't bore you with on here but 10days away will really help me relax and sort my head out while away from all the shit. Still gotta come back to it though :-(
Friday 8 May 2009
And still waiting...
There is still no sign of Marcus... Shelly's waters still haven't broke and she is still having contractions every 5 mins! This has been going on for a week now! She isn't very happy at the moment!
Come on little man, hurry up!
Come on little man, hurry up!
Monday 4 May 2009
Waiting and waiting!
So on Thursday afternoon I got a call from my Auntie saying that my dad's girlfriend, Shelly, was having contractions every 5mins but her waters hadn't broke. So we were all hoping that she would have the baby on Friday as it would have been my Grandma's birthday (1st May) and would have been nice as it is the only grandchild she didn't get to meet (well Sofia as well but she is my dad's step daughter) but anyway baby Marcus seemspretty laid back and comfy in there still but wants to be a bit of a pain in the arse! LOL! So just waiting for a phonecall from Espania to say that things are 'moving along!'
Got discharged on Friday, FEV1 was 2.08 which was 65% not my usual post IV increase but better than nothing and it's still going in the right direction! Anyway my liver tests are even better now so hopefully at my next outpatients appointment they will be back to normal. Am starting to get a bit worried about two lumps I have on my stomach though, both where I have recently injected my insulin, and they are quite sore, I noticed the first one Friday around 6pm and the other one this morning. Going to ring my diabetes nurse tomorrow, naturally though it had to happen on bank holiday when she was off for the long weekend!
Went to the Spring Fair today and it was kind of cool in a pretty crappy way! Went on a few rides but after been knocked around on them my shoulder was a little sore where my port was so went a had a few goes on the CF tombola and had a chat with the people running the stall, turns out they know my dad's cousin and her son who also has CF.
Anyway I am ending this post with a RIP to Kevin Wright who was stabbed to death last May Day bank holiday aged 20. (I can't legally put that he was murdered despite the fact he was stabbed 5times! Hmm thats the UK justice system!) Anyway I didn't personally know Kevin but I know his brother (who was also stabbed that night along with his uncle) and we have alot of mutual friends and he is very sorely missed.
Rest In Peace Kev.
Got discharged on Friday, FEV1 was 2.08 which was 65% not my usual post IV increase but better than nothing and it's still going in the right direction! Anyway my liver tests are even better now so hopefully at my next outpatients appointment they will be back to normal. Am starting to get a bit worried about two lumps I have on my stomach though, both where I have recently injected my insulin, and they are quite sore, I noticed the first one Friday around 6pm and the other one this morning. Going to ring my diabetes nurse tomorrow, naturally though it had to happen on bank holiday when she was off for the long weekend!
Went to the Spring Fair today and it was kind of cool in a pretty crappy way! Went on a few rides but after been knocked around on them my shoulder was a little sore where my port was so went a had a few goes on the CF tombola and had a chat with the people running the stall, turns out they know my dad's cousin and her son who also has CF.
Anyway I am ending this post with a RIP to Kevin Wright who was stabbed to death last May Day bank holiday aged 20. (I can't legally put that he was murdered despite the fact he was stabbed 5times! Hmm thats the UK justice system!) Anyway I didn't personally know Kevin but I know his brother (who was also stabbed that night along with his uncle) and we have alot of mutual friends and he is very sorely missed.
Rest In Peace Kev.
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