Busy Few Weekends

Well I think a blog is overdue!

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 5am or having enough energy to take over the world. It's a shame really, I did enjoy it whilst it lasted!

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 Cambridge and stay over. We all went for meal on the Saturday night with my brother and his girlfriend (who we also went to Uni with) then on the Sunday we went to Sheffield to meet with some other Uni friends. It was nice to catch up and see how everyone is doing.

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!

Goodbye Steroids

Today is my last dose of steroids and I'm quite glad really as a few of the side effects starting now aren't that great. I really enjoy the energy they give me and 'the false sense of being well' , however I am not enjoying the indigestion problems (constipation and now the opposite!), mood swings, waking up at 5am and not being able to get back to sleep, greasy, spotty face, dry mouth/thirst and sweaty hands! Luckily my face doesn't seem to have gone all bloated, but I know it would if I stayed on them for longer as it has in the past.

As I have been reducing the dose I have felt more and more irritable so I am dreading the first few days of been off them completely. It doesn't help when people annoy me, like the woman who stormed out of her house on Monday to have a go at me for Alfie weeing on her plant when all he did was sniff it or the woman who when I asked her to recall her dog away from me and Alfie as it was jumping all over us and getting tangled in Alfie's lead and she was just ignoring it, told me 'he just wants to play' 'this is a park you know'! These type of situations do not help!

I am worried that I will start to feel unwell again though, I'm still coughing sputum up during the night and I keep getting this horrible rumbling in my chest and crackling day and night but then I don't really cough anything up! I tend to cough lots up in my morning physio but not much in my evening physio but then as soon as I'm in bed its crackle, rumble and then I sometimes wake up choking on sputum!

I am trying to go to the gym lots and I went four times last week so very impressed with myself! Will be interesting to see if I can keep this up once I'm off the steroids!

Weight wise I have no idea as one day I weigh 53kg another day I weigh 55kg, but I am eating more and having my supplements so trying my best!

I have a busy few weeks coming up so not really done much the past week. I did take Alfie to a dog class last Thursday, one of the tasks was to get your dog to sit on eight mats one after the other all in a row and Alfie managed it in 28 seconds, yeay!

I've got to have a filling next Monday and I'm scared, I've never had a filling in my life and no idea what they do, so wish me luck!

Things Are Looking Up

My check up on Tuesday went great, I knew my lung function was going to be better as I feel loads better, almost back to normal. It's a good job too as I could not get parked anywhere! I drove around for 45 minutes looking for a parking space and ended up having to park in the multi storey car park which is a 15 minute walk from the ward, even in this car park it took me 10 minutes to find a space! I have never seen the hospital so busy, there were just cars queuing everywhere. I nearly went home at one point and if I'd have felt as ill as I did the week before, I would have defiantly gone home, as there was no way I could have done that walk especially in this windy weather!

My lung function was 41% which is great as this is about my normal, hopefully I will be able to get it slightly higher. My sats were 94% which is my average however my weight had fallen to 52.5kg. This means my bmi is 19.3 and I was informed that it falls to 19 they will be suggesting I go on overnight feeds until my weight is back up again. I am not underweight, a bmi of 18 and over is healthy however because I have CF they like me to have reserve weight as if I become ill the weight just falls off me as seen over the past 6 weeks and it is very hard to keep or get back. If I became ill again now and my weight fell even more then my body would struggle even more than it was already doing. There is a strong correlation in CF with body weight and better lung function/health. Therefore I have to put weight back on even if I don't want to, because it's better for my body. My bmi was about 20.5 before I got this virus so I guess I need to get it back to there, it's so annoying though as I am quite enjoying having a nice flat stomach and I know as soon as I put weight back on it will all go on my stomach. I might have CF but I am still a woman and have body issues!

I know whats best for me though and I am aiming to have 3 ensure plus' a day which is an extra 900 calories on top of food, or 2 ensure plus' and one skandishake which is an extra 1200 calories a day. My favourites so far are strawberry and caramel ensure plus', in fact I am enjoying them a little too much now my appetite has returned and worried I'm going to become a right fatty!

I also have to reduce my steroid dose by 5mg every 5 days until I am on 10mg, then stop them. So fingers crossed I won't be getting a bloated face and my sleeping pattern will be back to normal soon! I am continuing on the voriconazole for a month and then hopefully coming off it, I've already noticed my hair seems more dry and thin, sigh.

My CRP last week was 56 so still quite high as it should be under 10 and it was 33 when I came out of hospital, however I had my blood taken again on Tuesday and nobody has called me, so I assume it has fallen!

I'm starting to go to the gym again and walk Alfie, so things are finally getting back to normal. I took Alfie for a 20 minute walk on Wednesday in the windy weather, then did 10 minutes on the treadmill and 10 minutes on the bike. I am not starting up yoga again yet as I feel I need to increase my fitness slightly before I do an hours class, so I think I will just go to the gym again today and perhaps do some sit ups too!

So overall things are looking up, I just need to work on the weight and get fit again!

PS - If you read my surrogacy blog don't forget to keep checking it as hopefully it will be full of lots of updates this year!

Christmas

I hope everyone had a wonderful Christmas and Happy New year for tomorrow night!

I am typing my blog on my new laptop, yes I have a new laptop! So hopefully no more waiting half an hour for things to load, I did just have my brother around sorting it out for me though as my Internet was playing up. I'm now on Google chrome apparently which is better.

I was very spoilt this Christmas, I also got a new phone, so now I can go on the Internet on my phone and it's not touch screen so I can actually text again without getting very annoyed at my phone! I got three charms for my Pandora bracelet, DVDs, PJ's, dressing gown, clock and mega drive games you can play on the x-box along with many other gifts! So I have been playing on Sonic, Sonic 2, Sonic and Knuckles and Golden Axe all week, I'm not as good as I remember! I have so many memories of playing on these games with my brothers, writing down what to do on each level, such geeks!

I felt really guilty actually as I only had four presents for Pete, there was supposed to be five but one got lost in the post! I wasn't well enough to go shopping once I got out of hospital so my pile for Pete was rather small. Pete finished my Christmas shopping off for me and wrapped everything, but I can't obviously get him to do his own! We managed to get the Christmas tree up on the Thursday before Christmas, but only the 6ft one and not many other trimmings, but at least there was something on the day to make us feel the part!

I didn't have the best Christmas, just because I felt so terrible. The food, people and presents were great, just my body that wasn't. However I tried my best but to be honest I was dreading Christmas Eve-Boxing Day as we had so much planned and I had no idea how I was going to do it. When you get so breathless so easy everything is such hard work, even going to the toilet, every action takes so much effort. Last Thursday I practically stayed in bed all day and even turning over in bed was making me breathless and cough terribly. It's so hard to describe and until now I don't think I've ever experienced it and could not imagine what it could be like. I couldn't cook anything as I couldn't face walking in to the kitchen, I most defiantly could not shower or bathe on my own, I had a shower one day and ended up sat on the the bath floor because I tried to wash my hair. I was obsessing over things I was going to have to do which would make me worse, like at Pete's parents I knew I'd have to walk up the stairs to go to the toilet and I had to think of clothes I could wear without a bra as bra's just make me feel constricted.

Anyway I managed to get through the festivities and did start to feel slightly better on Boxing day, however the day after I felt terrible again. It's disappointing because anyone who knows me knows I love Christmas and I still had a good time, I'm just angry at my body for making a fun time of year even more hard work and worrying for me.

I went to the ward on Wednesday and the good news is that my sats were 96% so that's an improvement, my fev1 was 33% and my weight was 52.9kg so I'm 5kg down. They are now becoming anxious about my weight so I have lots of supplements to try and I'm trying to have 900 calories a day in supplements. I'm having a ensure plus which is 300 calories to sip on in the afternoon and a skandishake in the evening which mixed with full fat milk is 600 calories. There are all sorts of supplements, some come made up and are like a milkshake like the ensure plus, some are like a fruit juice (they are horrible but okish if mixed with lemonade). Then skandishakes and build ups are a powder you mix with milk so more difficult to make but taste slightly better.

I have also been put on Prednisolone 30mg (steroids) and damn Voriconazole again! My CF team do not like to use steroids unless really needed, they have alot of nasty side effects such as thinning bones, upsetting blood sugars and other things I don't really know about. Two things I do know they cause which I dislike is a moon face (although only usually if on them for awhile) and insomnia. I only had 4 hours sleep last night! The good thing about steroids is I already feel loads better, its amazing! They make you have lots of energy and my appetite is already better too! The Voriconazole I know all about, no doubt I shall feel like a vampire soon because they make you sensitive to light and my hair will start to thin again. Hopefully I won't hallucinate this time!

So I am feeling so much better already its unreal, I can do things again! I am at the hospital again next week but fingers crossed my lung function and weight will be up and this will be the end of the silly cold that ruined Christmas!

Home

At the start of last week everything seemed to be going well, my crp went down to 20, my lung function went back up to 42%, my headaches had gone and I didn't need oxygen when exercising anymore. I can't remember if I mentioned this, but for the first few days my sats were dropping below 90% when I did exercise in the gym so I needed some extra oxygen. Ideally a persons sats should be over 95% but anything under 90% is not good.

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.

Hotal St James'

Well this is going to be my home for awhile....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.

December - bittersweet month

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!

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

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

All snuggled up in my blanket, he likes the cold weather about as much as I do!

Catching some rays whilst he can!

Fantasies

I want to thank everyone that commented on my last blog post, I think I've had writers block for a few months and felt my blog was getting slightly boring, but I guess that's CF in a nutshell and relates to my previous blog, CF is boring and is very repetitive!

The post wasn't a cry for help, it was just thoughts I had that I wanted to put down in writing and sort out in my head. Sometimes once I start to write them, it starts to make sense why it is how it is and I can apply some logic to how I'm feeling. I know my family and friends love me, that's why I hate it when I have these panicked moments where I think nobody gives a damn about me. The world and relationships aren't perfect and sometimes you have to learn to deal with it along with everything else.

Today I'm stuck inside with not much to do as our house has stuff everywhere, I am going to go crazy! Our bedroom ceiling is finally being fixed so we had to empty the room out completely, which means there is a dressing table and drawers in the kitchen and an extra bed and other junk in the spare room. I had to get up at 7 today (after getting up at 6.20 to put IVs on and going back to bed) to try to be ready for when they arrived which I failed at miserably, the electrician arrived at 8.15, I mean who works that early?! Luckily Pete was still here as I was about to get in the bath. The electrician left and so did Pete and then I frantically tried to be ready for when the plasterers arrived in 10-15 minutes. Not easy when everything is dotted around your house! I'm happy to say I was dressed and even had some makeup on by the time they arrived. So now my home is taken over by men and I'm hiding in the living room trying to stop Alfie barking every 5 minutes, I think we shall escape at some point to go for a nice walk!

I am so excited about finishing my IVs on Wednesday, I fantasize about getting my dressing off my arm and my eyes looking normal again. They won't stop weeping and are all red like I've being crying, they are dry and I want to itch them all the time. It's driving me insane! My skin near my armpit has gone all sore so I've had to sort out my dressing for my needle so there are no sticky bits on the sore part, this means I have loads of padding going all the way under my armpit. Again, driving me crazy... want to itch, want to itch, ohhh I can't wait to rub some moisturiser on it! I woke up Friday night and I'd ripped some of my dressing off in my sleep, oh hello top of needle poking out and hello having to try sort own dressing out at 3am with one hand, how fun! SO yes very excited for Wednesday!