Friday, 24 February 2012
End of IVs
Monday, 6 February 2012
Busy Few Weekends
The filling went fine, I only needed one in the end and that needle they use to put your local in is tiny and hardly hurts! The most annoying part of the whole process was having a numb mouth for about 4 hours afterwards! The dentist left my chair up a little so I wasn't flat on my back as that would have made me cough, not good when she is in the middle of drilling in to your tooth.
I am back to normal now off the steroids, so no getting up at
Three Saturdays ago we went to an engagement party at an Italian Restaurant which included a delicious buffet. The problem was that stupid moi forgot to take my nutrizym with me that I need to digest my food. Therefore I knew if I ate loads I would get a horrible, sore bloated belly and spend many smelly hours on the toilet the next day! So I ate some and then had to sit and watch everyone else stuff their faces with pizza and pasta, so unfair! It seems I drowned my sorrows by drinking too much and ended up going to this pub near where I live afterwards with my friend where I did lots of chair dancing. This is dancing whilst sat in a chair as you know if you do proper dancing you will get out of breath and cough loads which is very embarrassing.
The week after we had two of our friends from University come up from
On the Monday (last Monday) I was very tired and Tuesday morning hey presto I woke up with a cold which I still have. I went to Outpatients on Friday and my fev1 is still 41% so unchanged however my fvc has fallen, my weight is up a kg to 53.5kg and my sats were slightly low at 93%. They were ohhing and ahhing about if I should go on IVs, I said I felt I didn't need them yet so they flushed my port and took some blood to check my crp (infection) level and are supposed to be calling me today. I do feel rough (I hardly did anything last week, just stayed in and had lots of naps!) and I'm scared I will get ill again like before Christmas, so I think I am going to go on them, I'll see what they say when they call anyway.
Last Thursday was my Birthday! I got lots of money which I am saving to go on holiday, some clothes vouchers and some toms (shoes) from Pete. On Saturday we had a house party, lots of people didn't turn up because it just had to snow the day of my party, typical! Pete went to pick my brother up and got stuck at the bottom on a hill on his way there! I was seriously panicking nobody would turn up but thankfully they did and Pete managed to get out eventually and come back home! The theme was the 90's so it was all 90's music and I also did a 90's quiz, obviously fancy dress was a requirement too!
I said in my last blog I had a few busy weeks coming up and I did! I guess IVs was to be expected in a way so I'm not annoyed really, I think I was allowed to have a few fun weeks since I didn't really get to have fun over Christmas!
Wednesday, 18 January 2012
Goodbye Steroids
Friday, 6 January 2012
Things Are Looking Up
Friday, 30 December 2011
Christmas
Thursday, 22 December 2011
Home
However they decided to keep me in for the full 2 weeks to see if I could improve anymore, I was abit disappointed but agreed. By the end of the week I felt so ill again, my sats on the Friday were sitting at 89-90% when I was resting and they mentioned I might need extra oxygen, I was supposed to have 4 hourly observations to check this but it never happened. I needed oxygen when exercising again, my sputum was thick and dark, I was sweating again during the night and my lung function fell to 30%. My crp went up to 33 however my bacterial count was still going down which was good. I had an overnight oximeter as your sats tend to drop when you are asleep and since mine were low already they thought I might need overnight oxygen. My average sats overnight were about 89.6% so not low enough to need oxygen just borderline.
I was fully prepared to be told I would need to stay in or at least go on home IVs but to my surprise they said I could go home and return next Wednesday to be checked on. Apparently my Xray shows an improvement and they are please with my progress, I'm not sure how I feel about this. I told the Doctor I was concerned about my lung function and I am breathless just walking around, getting a shower etc but he was adamant I was to go home and see how I coped in my home environment. I had a walking test on Tuesday and my sats are dropping to 88% when I just walk, which is borderline again, so I have to have another one next week. They seem to think it's all viral and I will pick up once it has gone. I had a CT scan yesterday to look at my lungs in more detail and check there is nothing going on they don't know about.
So that's it, I have been shipped home and I feel like a bag of crap if I'm honest. I have nearly been sick twice already from coughing, I am getting out of breath just walking around the house and I'm so tired I just want to curl and disappear. On top of this its Christmas in 3 days and I still have shopping to do, a tree to put up and then obviously Christmas it's self is going to be exhausting.
My CF team said to call if I can't cope but what exactly are they going to do over Christmas? All my family were stressed when I was in hospital and I hate being in there. They are always bugging you and forgetting stuff or bring it like an hour after you ask, they ask you to pass them stuff and wake you up trying to put your IVs on. One night I woke up with a terrible headache pressed my buzzer, the nurse stood at the door shouting 'yes Gemma what do you want' (because I was in isolation they all had to put gloves and an apron on to come in my room so preferred to stand at the door and shout stuff to me and ask me to pass them stuff or take stuff from them.....lovely) and then when she brought my paracetamol she turned the light on! The food is horrible, I've lost 4kg whilst in there, a combination of a poor appetite and horrible food.
I'm so worried that this is it, I won't get my lung function back up, I'm terrified. I can't live like this, I really hope I feel better by next week.
Thursday, 8 December 2011
Hotal St James'

Yes I'm in hospital! A first for this blog so I haven't done bad,I think it's almost 5 years since I as last in! I went to start my IVs on Tuesday and really wasn't feeling good, I was sick when I got home from coughing so much and just lay down for the rest of the day, I had to go back to the hospital in the evening for my second dose of Aztreonam as I haven't had it for several years and they like to check you don't have a reaction to it.Later in the afternoon the nurse called me to say my blood results had come back and my crp was sky high at 160, its supposed to be under 10 and usually when I need IV's it's about 30-40, crp are your infection levels. She asked me if I wanted to come in to hospital or wait a few days and come in if I was no better, they had a bed for me and I could come in the next day. I decided to go in as I was feeling so rough and just wanted there to be people around to look after me so I don't have to do everything myself, I was upset though as I don't like being in hospital especially so close to Christmas when I have shopping to do and things planned! I still had to go that night for my second dose and got annoyed when some woman in the lift in a hospital for godsake decided to comment on my cough in front of everyone and told me I should have a mask on!
On Wednesday I went in to hospital, Pete managed to get some time off work to bring me in (he has just started a new job!) but he couldn't get parked as the CF spaces which are reserved for CF patients and have signs saying you need a permit were taken by people without CF, typical! Another guy with CF went up to one of the cars where a man was sat smoking in it and explained this to him and he told him he had a disabled sticker and wasn't moving! So instead of Pete being able to help me up to the ward with my bags he had to drop to me off at the entrance and go as he didn't have time to park somewhere miles away and walk over. Makes me so mad that people are so inconsiderate. So I dragged it all in myself and this time some idiot in the lift decided to ask me if I was going on holiday as it looked like it! The nurses said they would call security about the cars but I don't know if they did.
I had an xray in the afternoon, I got pushed there in a chair by a porter, I felt a right div but was glad of it as it's a long walk to Xray. There was then some problem returning me as the porter put I was completed even though I wasn't, something to do with how they had spelt my name wrong, can you believe it! So i was stuck in Xray for over 2 hours, luckily my brother has lent me his Nintendo DS and I'm addicted to Pokemon already!
My Xray revealed I have pneumonia in my left lung, its not too worrying, just explains the high infection markers. I think I did the right thing in coming in anyway and I'm already starting to feel better.
The CF ward is really good, we all have our own rooms with ensuite, fridge and kettle and we have a computer with free Internet access and a tv with blu ray dvd player that is free to use. The food has improved alot since last time I was in, it is freshly made and I get a fry up every morning! There is a patient kitchen we can use to make toast, drinks etc but I'm being barrier nursed at the minute as swabs showed I have rhino virus (common cold) so I'm not allowed in the kitchen at the moment as they don't want other patients to get it.
Monday, 5 December 2011
December - bittersweet month
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!
Thursday, 1 December 2011
Love on the Transplant List
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
Friday, 18 November 2011
My Little Munchkin
Sorry for lack of blogging, I know know....!
I finished my IVs two weeks ago and my lung function was 42% so back to normal and I felt alot better. The Doctor and I have agreed I am going to start one month on and one month off Tobi nebs again to see how I cope, its to do with costs and how toxic they are, plus the time they take. I must admit the last two weeks have been wonderful, only having three nebulisers to do rather than five! I am worried though that when I go back in December my chest may have suffered as a result, not good so close to the busy festive period!
The day after I finished my IVs I felt terrible, I was so tired and my whole body ached. The thought that my IVs hadn't worked made me so miserable I just curled in a ball and I slept most of the day because of the tiredness. Then the next day I felt great! As I was driving back from yoga I realised I'd had my flu jab when I finished my IVs and that is what has made me feel so tired and achy! I have never felt like that before with a flu jab, so it must just be this years vaccine for some reason.
Two weeks down the line and my chest isn't the best but I think most of it is down to the weather becoming colder, I took Alfie for a 40 minute walk yesterday and my chest hurt the rest of the evening, it felt like it was burning and I must have loosened lots of mucus as I coughed all evening. This doesn't help my shoulder and upper back situation, they've been sore for about 10 days and it hurts so much when I cough. I don't know if I have pulled something or what but if it hasn't gone by my next outpatient appointment I'm going to mention it.
The hole in our ceiling is finally fixed! However we decided to decorate the bedroom whilst it was empty, so we are still in the spare room until next week. My mum has done the wallpapering today and I've finished off the paint, half the glossing is done so we are nearly there, this week has been tiring and I haven't even done that much!
I don't know if I mentioned on here but we are doing some behavioural training with Alfie at the moment to try encourage him to be more sociable. We are doing BAT (behavioural adjustment training) with teaches him to think before he acts, easier said than done! We also have a sounds CD to desensitize him to sounds that scare him such as fireworks, traffic, children etc. Not really sure how well it is going but I'm trying my best! Here are some pictures of my little munchkin as requested, aw I love him so much!
On our walk yesterday

Catching some rays whilst he can!