I had outpatients on Friday and my lung function has fallen to 32% from 42% a month ago and my weight has fallen to about 55kg so not much but it still concerned the Doctor. So guess what? I have to go on IVs! I am actually past caring, I feel so ill I wouldn't have cared if they said I had to go in to hospital. This is the lowest my lung function has been for 2 years, to the date can you believe it! It was 31% the 2nd December 2009, I get the feeling December is not a good month for me!
I get breathless doing everything, I cough doing everything even during the night, my chest aches, my body aches, I am sweating buckets every night and sometimes sweaty during the day, my appetite is poor, I have little energy and just getting dressed is tiring me out. Its gotten worse over 2 weeks and I've had enough! I realised yesterday I haven't even considered when we are going to put the Christmas tree up, I always get excited about that and put it in my diary! I'm currently listening to Christmas songs to try get me in the mood, I get this from my mother, one memory I will always have of Christmas is my mum having the Christmas tunes on loudly whilst wrapping presents at the table and writing cards. I think I am one of the few people who loves Christmas songs!
So I am starting IVs tomorrow, I'm not having Ceftzadime, I'm having Aztreonam this time so have to have my second dose at the hospital as well to make sure I'm not allergic to it since I haven't had it in a long time. The nurse annoyed me a little as she said I could have my first dose then go Christmas shopping and then come back for my second dose, does she really think someone ill enough to need IVs would be able to do 6 hours worth of shopping?! I think I'll go home thanks....
Anyway I am excited about starting to feel better again and I will finish my IVs the Tuesday before Christmas, it could be worse, I could be on my IVs on Christmas. I remember once when I was a child I was in hospital over Christmas but I got to come home on Christmas Eve and go back in on Boxing Day, I don't ever plan for a repeat performance!
Showing posts with label sweating. Show all posts
Showing posts with label sweating. Show all posts
Monday, 5 December 2011
Thursday, 1 December 2011
Love on the Transplant List
I'm sorry I haven't blogged much, i'm feeling really rough at the moment. I woke up with a cold last Tuesday and started Amoxicillin straight away to try stop it going any further however I don't think it has worked. Sunday was the worst day, I haven't felt so ill for a long time.
I'm at outpatients tomorrow so will find out if my chest has worsened but I'm almost sure it has, I am getting breathless lying down, talking and just walking around the house. I am coughing thick green sputum up all the time and taking a sputum pot with me everywhere, my chest aches and I've taken to not wearing a bra when possible as it feels too tight and restricts me. I am sleeping better than I was which is a positive, I'm not waking in pools of sweat but freezing anymore and I'm coughing less during the night. I'm just so pissed off (excuse my language!) I don't need this now, its December and I have lots coming up which I have been looking forward to. My appetite is poor although slightly improved today (I actually had some breakfast and attempting some lunch) and my skandishakes are a year out of date, they do not taste good!
I am so bored of just lying around and not doing much in order to try rest! I really do hate this time of the month!
There was an excellent programme on Monday called 'Love on the Transplant List' it is about a CF friend of mine called Kirstie and her journey to receive a transplant with her husband Stuart. It was really well put together and I think it reflects brilliantly how difficult every day tasks can be and how difficult it is to watch your other half dying in front of you. It makes me realise how amazing Pete is to know this could happen to me and not be fazed by it. Obviously my CF is not at this stage and hopefully will not be for a long, long time but it raises awareness of CF and makes people realise how important becoming an organ donor is. Please take the time to watch it on BBC IPlayer if you have not seen it. Kirstie and Stuart were great to let this difficult time be filmed and shared, I think they did a fantastic job! Below is a trailer and the link to watch the whole programme
Link for BBC IPlayer - click here
I'm at outpatients tomorrow so will find out if my chest has worsened but I'm almost sure it has, I am getting breathless lying down, talking and just walking around the house. I am coughing thick green sputum up all the time and taking a sputum pot with me everywhere, my chest aches and I've taken to not wearing a bra when possible as it feels too tight and restricts me. I am sleeping better than I was which is a positive, I'm not waking in pools of sweat but freezing anymore and I'm coughing less during the night. I'm just so pissed off (excuse my language!) I don't need this now, its December and I have lots coming up which I have been looking forward to. My appetite is poor although slightly improved today (I actually had some breakfast and attempting some lunch) and my skandishakes are a year out of date, they do not taste good!
I am so bored of just lying around and not doing much in order to try rest! I really do hate this time of the month!
There was an excellent programme on Monday called 'Love on the Transplant List' it is about a CF friend of mine called Kirstie and her journey to receive a transplant with her husband Stuart. It was really well put together and I think it reflects brilliantly how difficult every day tasks can be and how difficult it is to watch your other half dying in front of you. It makes me realise how amazing Pete is to know this could happen to me and not be fazed by it. Obviously my CF is not at this stage and hopefully will not be for a long, long time but it raises awareness of CF and makes people realise how important becoming an organ donor is. Please take the time to watch it on BBC IPlayer if you have not seen it. Kirstie and Stuart were great to let this difficult time be filmed and shared, I think they did a fantastic job! Below is a trailer and the link to watch the whole programme
Link for BBC IPlayer - click here
Wednesday, 3 November 2010
Halloween Party
Well my nose is back to its normal self, wahoo! Although its very shiny so I'm going to give myself one of those mud facial things tonight to see if it helps!
On Saturday it was our Halloween party which went really well. No-one was a party pooper and didn't dress so that was good! We had seven people sleep over which was abit of a squeeze but we managed it! By the time I woke up the next morning Pete had made them all bacon sandwiches and tidied up alot of the mess, he's such a good husband! Although I do think he has learnt from the last party we had when I had a go at him for doing nothing...
I've been tired ever since the party though. You don't realise at the time how much energy you are using getting everything together and making the food, sorting people our etc, because of your adrenaline. But then once it's all over it catches up and even though I just laid around all day Sunday once we had put all the decorations away and cleaned up, I'm still feeling tired three days later. This weather isn't helping, I officially hate winter. The thing is, I quite like autumn because of the colours and also loads of good stuff is on the TV hehe, however every time I go outside it's 'cough cough', I feel so wheezy today after taking Alfie for a walk and coughing so much. I felt sick yesterday after coughing all the way to my car which was literally a five minute walk. It's not like I don't get wrapped up, it's just the change from warm to cold or vice versa, it's like it freaks my lungs out and they have a fit! It's also depends on how long ago I did my physio, like if I go our first thing after doing my morning physio it's not as bad as say if I went out at 5pm so due my evening physio in a few hours.
Another thing that's bugging me and I have no idea why it's happening, is that I keep waking up in cold sweats during the night. I'm not warm but I wake up and I'm dripping from head to toe and my pillow and sheets are all wet, it's totally gross and uncomfortable and I don't know what's causing it!
On Sunday we found out that my mums car has been stolen. They broke into her house whilst her, my brother and girlfriend were asleep upstairs. Luckily Murphy was in bed with my mum and not in the kitchen, because that's where the keys were, as who knows what they would have done to Murphy if he started barking at them. When my other brother came home with his girlfriend, the front door was wide open which is when it was discovered what had happened. It's scary to think that someone was in the house, one of my brothers could have come home whilst they were still in there or Murphy could have barked and my brother gone down to investigate. Some people are just scum!
Anyway here are some pictures from the party
On Saturday it was our Halloween party which went really well. No-one was a party pooper and didn't dress so that was good! We had seven people sleep over which was abit of a squeeze but we managed it! By the time I woke up the next morning Pete had made them all bacon sandwiches and tidied up alot of the mess, he's such a good husband! Although I do think he has learnt from the last party we had when I had a go at him for doing nothing...
I've been tired ever since the party though. You don't realise at the time how much energy you are using getting everything together and making the food, sorting people our etc, because of your adrenaline. But then once it's all over it catches up and even though I just laid around all day Sunday once we had put all the decorations away and cleaned up, I'm still feeling tired three days later. This weather isn't helping, I officially hate winter. The thing is, I quite like autumn because of the colours and also loads of good stuff is on the TV hehe, however every time I go outside it's 'cough cough', I feel so wheezy today after taking Alfie for a walk and coughing so much. I felt sick yesterday after coughing all the way to my car which was literally a five minute walk. It's not like I don't get wrapped up, it's just the change from warm to cold or vice versa, it's like it freaks my lungs out and they have a fit! It's also depends on how long ago I did my physio, like if I go our first thing after doing my morning physio it's not as bad as say if I went out at 5pm so due my evening physio in a few hours.
Another thing that's bugging me and I have no idea why it's happening, is that I keep waking up in cold sweats during the night. I'm not warm but I wake up and I'm dripping from head to toe and my pillow and sheets are all wet, it's totally gross and uncomfortable and I don't know what's causing it!
On Sunday we found out that my mums car has been stolen. They broke into her house whilst her, my brother and girlfriend were asleep upstairs. Luckily Murphy was in bed with my mum and not in the kitchen, because that's where the keys were, as who knows what they would have done to Murphy if he started barking at them. When my other brother came home with his girlfriend, the front door was wide open which is when it was discovered what had happened. It's scary to think that someone was in the house, one of my brothers could have come home whilst they were still in there or Murphy could have barked and my brother gone down to investigate. Some people are just scum!
Anyway here are some pictures from the party
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