Naughty Blogger!

Oh dear naughty blogger! *smacks hand*

In my defence I've had a rough start to the year with our first IVF cycle with our surrogate ending with a chemical pregnancy (see surrogacy blog for more details). So my head has been all over the place, one minute I thought I was going to be a mummy and the next minute I wasn't. Anyway we are going to be trying again very soon and I hope to have better news on that front next time!

So it has been my birthday and I'm very quickly heading towards the 30 marker! At least I'm an even number now, I'm slightly strange I know...!

Pete and I went for a short trip to the lakes after our bad news regarding the pregnancy, to spend some quality time together, alone and away from everything. I know i really needed it, I'm not sure about Pete. Amongst other things, one thing I hate about not working is the loneliness and troubles it brings. Sat in the same building day after day with only a dog and your thoughts for company. It's dangerous and I really, really want it to start getting warmer so I have the ability and will to get out of the house more often! It's simply too cold to venture out very often, its not worth it with the coughing and breathlessness it brings.

Last Monday I went to see Girls Aloud, yep, fourth time! I think I may possibly have seen them every time they have done a tour. I also booked tickets with my friends last night to go see The Big Reunion tour in May. If you haven't heard about this, it is bands from the 90's reuniting like 5ive, 911 and Atomic Kitten and putting on a massive cheesy concert, it's going to be great!

In CF news I have been told I need insulin treatment and then been told actually I might not do. It's all slightly confusing and annoying and has been dragging on since October! My gluclose tolerance test last October came back saying I have mild diabetes, so I monitored my blood sugars for a week and the dietician decided she wanted me to wear a constant monitor for five days. A small catheter is put in your stomach by using some kind of stapler device (really small needle) and then a small probe is attached which constantly monitors your sugars. You still have to prick your finger four times a day to check the monitor was working properly. You can still shower and even go swimming with this device attached to you so it's not too bad to have attached. I then removed it on my own and posted the probe back to the hospital. Here it is

 I then caught a cold and as usual started to get chest pains, was sleeping lots and had very little energy, after taking oral Ciprofloxacin for a week I went to the hospital for a check up. My lung function was slightly down to 40% so nothing major and the consultant decided to have a good look at my medical history and test results whilst I was there. He decided I could need insulin looking at my results and he wants to try me on a new nebulised antibiotic called Azli (nebulised Aztreonam) rather than having Tobi (nebulised or inhaled Tobramycin). He said I needed to be admitted to start the insulin and he wanted me to have IVs on the ward rather than home IVs to get some rest as I looked stressed (I was). So I was put in the waiting list and said to wait for them to call me. 

After a week of waiting I felt much better and decided I didn't actually need IVs afterall, looks like two weeks of Ciprofloxacin had done the trick for once, seriously, its a miracle! So I called to let them know and turns out my name wasn't even on the board, someone had forgotten to put me on! 

The dietician said I still needed to come in to start insulin as I needed to be monitored. Fast forward two more weeks and several phone calls later and I still didn't have a bed due to lots of emergency admittances and I was getting rather annoyed as I wanted to start the damn insulin and also the nebulised Azli.

The main CF dietician who was now back from her holidays decided she wants to retest me as the probe didn't collaborate very well with my own monitoring. She was very apologetic and explained it seems there has been a lack of communication and misunderstanding with what was happening with me. So yesterday I went for the monitor fitting again and to try the new Azli nebuliser.

She explained everything to me and I will try to explain in how I understood it however I do find the whole blood sugars thing very confusing..... I do get high sugars (over 10) but not really high and not in any clear pattern, I also get low sugars (under 4) so she is worried if I had insulin I would get even lower sugars which is dangerous. If I do need treatment they need to work out what type of insulin I'd need, I didn't even know you could get different types! My HbA1c (a measurement taken from your blood) is 48 which is above normal but a good number for someone with diabetes (apparently the aim is between 48-58). So once they get the results from this monitor they are going to decide what to do with me. 

Diabetes is something that many people with CF develop and is called CF related diabetes (surprisingly!). From what I've read it's a combination of type 1 and type 2 diabetes. Mucus in the pancreas damages the cells that produce insulin over time and the body becomes insulin resistant due to chronic infection.

So I go back in two weeks to get my results and pick up the Azli they have ordered for me as I tolerated it fine (I can't get if from the GP as it's too expensive).

Past Few Weeks

I've kind of been putting this blog off as I couldn't be bothered with it but I suppose I should post an update for anyone that still reads!

I ended up on IVs again as I caught a cold which it seems is my enemy! I called the hospital and they put me on septrin at first to try stop me needing IVs, I drove to Leeds and picked up the prescription, got the tablets from the chemist. I decided to flick through the leaflet quickly before I took it as I've never taken septrin before and like to know what lovely side effects I may experience, so I know its the tablets causing it. I didn't get past the first section of the leaflet as I discovered septrin contains trimethprim which I have on my notes as been allergic to. I have a memory of vomiting in my Beauty and the Beast slippers as a child, my mother cannot recall this. I was unimpressed to say the least so called the Doctor who said 'yes I remember reading it in your notes but I forgot', wow good to know. Anyway she suggested I take one anyway and see how it went as it was a long time ago and it wasn't a serious allergic reaction. There was no vomiting so that was a bit of good news.

The septrin failed me and four days later I felt like I was at deaths door, I was getting out of breath talking, was so tired and achy and my sputum was going really thick and dark green. On the Monday I waited until our cleaner had done the bedroom and and then crawled in to bed, I was fully clothed with slippers on and was under the duvet and still shivering. I had to take Alfie to the vets as he had been walking on three legs all weekend so dragged myself out of bed and somehow made it, luckily Alfie had just pulled a muscle, that dog is a serious whimp! I decided whilst in the vets I was indeed going to die and called the hospital to tell them I was feeling very unwell so they wanted me to go in and see them. I went to my mums where I proceeded to cry as I was fed up and could not face driving to the hospital and struggling to get a car parking space and walking from the car to the ward. So my mum took me thankfully and gave me some pringles to cheer me up, my mum had only just come back from holiday so was pretty tired herself bless her!

I had a temperature of 38 degrees (I think it was 39 degrees the next day) and since I'd only had IVs two weeks before and I confessed I would struggle to do home IVs they decided to admit me in to hospital. Except they there were no beds on the CF ward and they couldn't locate me one on the respiratory ward so I had to go back home and wait for them to call me. Which they did the next day so off I went with my lightly packed suitcase (I wasn't planning on staying long). They decided I might have the flu so started me on tamiflu, they also put me in isolation so I couldn't infect anyone else. 

I went in on the Tuesday and it was my sister in laws wedding on the Saturday, so as you can imagine I was extremely unhappy at this turn of events as I'd been looking forward to it for ages and I was also supposed to be a witness. I told everyone who came in to my room that I wanted to go to this wedding and could I go on home IVs or go out for two nights? (the wedding wasn't local). It turned out I did not have the flu, just rhino virus (the common cold) and my temperature was coming down slowly so they agreed to let me go on home IVs on the Friday as I was feeling a lot better and felt I could manage. I was going crazy anyway as I wasn't allowed out of my room, even to use the ward gym and there weren't even any windows in my room to spy on people! 

The wedding was great, I didn't exactly feel like partying and had lots of treatments to fit in but I managed it and I was there which was the main thing. I went to a wedding and fitted in three lots of physio, all my nebulisers, three lots of IVs and an afternoon kip so I was quite proud of myself! The hotel had a fridge they let me use thankfully and I had to use a jug to wash my hair as the shower wouldn't lift down, all these little things people don't realise you stress about!

The rest of the week I spent hidden under a sleeping bag on the sofa watching lots of ER, then I decided a few days before I was due to finish my IVs that I should get out and about. It's sometimes difficult to tell if you feel better when you are lying around all day, especially with all the side effects from the IVs.

When I went to finish my IVs my fev1 was 45% which is the best it has been in ages so I am really happy about that! I managed to keep on my weight through having supplements so I'm practically back to normal now. The only complain I have is that I keep getting mucus in my throat especially when I lie down and I keep waking up because I can't breathe! The physio thinks this might be coming from my sinuses, so hopefully will get better as my cold goes. I also had my flu jab when I finished my IVs, the earliest my GPs could fit me in was the 31st October and it's just easier to get it done whilst at the hospital.

My glucose tolerance test says I have mild diabetes so at the moment I ma having to monitor my blood sugars before I eat and an hour and half after I've eaten. I don't know much about diabetes or what the blood sugars mean, the lowest so far is 3.2 and the highest is 17.6, I know that is higher than they should be but no idea what my fate is going to be! I hope I don't have diabetes because my fingers are already sore and it's just another thing to make eating even more complicated than it already is with these stupid enzymes! I seriously don't know how much more treatments I can fit in to my day and still have some form of a decent life! I might actually cry if they tell me I have diabetes.

Pete managed to raise £200 for doing the Great North Run which we donated to my CF Ward last week, so thanks to all those that donated!

Here are some pictures from my sister in laws wedding, we didn't get many! She looked gorgeous anyway which is easy for her since she does all the time!

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.

Hypertonic Saline

Well as I said on Monday, I started IV's today.

At outpatients my fev1 was 39% so only down 3% from when I last finished my IV's, however my FVC is down by 15%. For those who don't know, Fev1 is how much you blow out in the first second, FVC is how much in total your lungs hold. My FVC was down to 55%, I don't know why there is such a large difference in the two, I think it's because they measure different airways and clearly there is a difference in my airways. If anyone can explain it to me, it would be great! Also anyone who doesn't understand the % stuff, its a % of how much a healthy person my age and height should get. So I think in my FEV1, I blew out 1.4 litres of air which is 39% of what it should be, obviously the amount I should get is an estimate, that's how people can get a FEV1 of 110% because they are blowing out more air than expected.
Fev1 is a more important indicator of how you are doing but obviously FVC is important too.

Anyway because my lung function was slightly down and this cold is making me feel tired and very chesty, plus the trip to London has tired out my poor little lungs, it was decided I should go on IV's. Also Pete and I are going away in September so I want to feel my best by then!

It wasn't a good start today, I only went and drove to the wrong bloody hospital! Outpatients is at Seacroft hospital whereas the ward is at St James, so I went to Seacroft on Monday and then today because I must have turned my brain off whilst driving I just went there on autopilot. St James is about 15 minutes from Seacroft so it wasn't too bad, but I did feel like a right muppet!

My Fev1 was 35% today, so a good job I am going on IV's, but also a good example of how much it can fluctuate day to day. I think I have to face facts that my lung function tends to sit in the 30% range these days rather than the 40%, which is scary to be honest, but i'm going to try my best to at least keep it in the high 30%-low 40% range.

I am going on tobramycin which is once a day and takes an hour to go through and ceftaz which is three times a day and takes about 30-40 minutes to go through. I also tried hypertonic saline today as I told the physio I felt like my physio just wasn't clearing my chest and she agreed an hour to hour and a half of physio a day is enough for any person. So I am now on hypertonic saline which I do before physio through my I-neb, so twice a day. It helps loosen the mucus by creating moisture or something or other, I didn't really listen to her! So now I am doing five nebulisers a day as I still have to do all my others, ekk! Everyone says it tastes horrible but I didn't think it was too bad, she said it's better through the I-neb as it only releases the mist when you breathe in, so it isn't swirling around in your mouth. It does make the back of your throat taste salty, because that's what it is, but it soon wears off afterwards, and it defiantly makes you cough! I'm on 7% rather than 6% as the research suggests 7% works better and I also get it in little nebules which apparently is quite new. I can do it upto 4 times a day if my chest feels really bad, but I think I'll stick to just before my physio sessions for now. I did my first dose at the hospital as they have to check it doesn't make you wheezy, she just checked my Fev1 before and after I'd nebulised it and my Fev1 only fell by 1% so it didn't make me particularly wheezy.

I saw a new doctor today and I didn't get a very good first impression of him. He looks quite young and he didn't even tell me who he was or anything. Then he just went straight into looking at my IVs and asked me if I was having my ceftaz 'TDS?', erm how do I know what that is! Then he referred to a prescription as a P something or other, erm hello I am a patient and don't know all your medical terms! Then he got my sputum pot I had by my side because I had been coughing after doing the hypertonic saline and just took the lid off and looked in! Now there are things you don't do and you don't look at someones sputum you have known for about 2 minutes without at least asking first. I just felt like it was an invasion of my privacy or something, no other doctor has ever done that. Maybe he was abit keen and I'm being harsh, he did seem very eager, I think this may have caused him to appear slightly rude. To be a doctor you have to good at the medical side obviously, but also at the communication with patients!

On Monday I went to yoga and it was like the teacher has read my mind. My back and shoulders have been hurting and feeling tense from coughing and getting out of breathe, and I've been hunching slightly as a result. I arrived at yoga and she told us we were going to work on our posture and spine through stretches, yipee! I'm not kididng you, some of the stretches felt amazing and by the end my back and shoulders felt so much better and I felt like my chest had just opened up. I really would recommend yoga to people with CF, its helps with your posture, your breathing, and some of it is quite hard work so gets some cardio in there! Then there is relaxation at the end which helps you de-stress and calm your mind, which I find can help me get rid of headaches. I've tried pilates and it's not the same, I didn't like that at all, he kept going on about my inner core and I didn't feel it helped me in anyway. But yoga is a big yes, go on, try it!

Poor Port!

I went for my port flushing yesterday, it has to be flushed every 4-6 weeks and my outpatients appointment isn't until the end of April.

I rang up on Tuesday and they booked me in for Wednesday at 5pm. I got there at 5pm and noticed they have put a nice smoking shelter right by the disabled spaces and hospital entrance, which I also noticed hardly anyone was using, it's obviously too hard to walk the extra metre. I was confused though, I'm sure there are signs saying no smoking on hospital grounds... anyway... enough smoker bashing for one day...

I had to wait 20 minutes in a room before anyone came to see me, then when she did it was a ward nurse I didn't know and she said she just needed to do someone elses port and then would be with me. Panic set in, someone new doing my port!!! All the memories flooded back of strangers doing my port before, jabbing me, using the wrong equipment, having a million goes determined to get it in. My palms started to sweat and my anxiety kicked in. If you know me, you will know I hate having my port touched as it is. I can't touch it myself, I scream inside my head when I have to touch it to put suncream on etc. I can touch around the area but not the actual bit where the port is. When the nurses are cleaning it and putting the needle in, I wiggle my toes and touch my face with my hands, I turn into a nervous freak. I actually wanted to run away, I can't even run!!!

She came in at about quarter to 6 and took ages to set up the stuff, whilst doing this she chatted to me about everything she could possibly think of. A chatty person, taking forever to set everything up. Not good signs, signs of nervousness! Seriously my hands were covered in a layer of swear and I think my forehead might have started too! She then asked me if they usually just flush it with hepflush or saline too, I said 'just hepflush I think but that really hurts if you miss' (it goes into your tissue and stinks really bad). She got some saline out whilst saying 'I do loads of ports and haven't missed for ages'. Yeah I'd feel abit more confident if you didn't get the saline out after my comment!

So she cleaned it etc and attempted to put the needle in. I say attempt because I have no idea what she did as I wasn't looking but it was not putting a needle in! She was too gentle, the nurses usually hold around the port or arm and stick it in, it takes about 2 seconds if that. I looked at it for a second and she had put the needle in at a weird angle and not all of it, then tried to straighten it up whilst it was half in the port! It wouldn't flush obviously so she took it out and then asked me to put pressure on the port with some gauze, erm hello I just told you i don't like touching it or it being touched!!!

I actually started to feel lightheaded because I was so anxious and she had another go, this time it seemed to be in. She said it had hit the back of the port and started to push some saline in, my arm stung and the port area started to swell slightly. I told her this and as I told her, the needle started to pop out, obviously because it wasn't in, the saline was going into my tissue, not the port and the pressure of the liquid having nowhere to go was pushing the needle out. I thought I was going to cry and had to tell myself in my head to grow up! She told me to put pressure on it again with some gauze and I was going to ask her to get someone else to have a go, but she had figured this out already and went to get someone.

The ward sister came in who I know and I instantly felt better, she got the needle in straight away and flushed it fine. She apologised about before and I got to leave at about 6.15pm with three holes in my arm and very sweaty palms.

Moral of this story.... I will always get my port flushed through the day by a liaison nurse who knows how to get a needle in my damn port! I shall be telling them this at my next outpatients appointment!

Flight Test

I had my flight test today, I was abit nervous because a) I didn't really know where to go and b) I was scared they would say I needed oxygen.

Turns out the thing I needed to be nervous about was actually having a bloody appointment! I asked ages ago about a flight test and was told they would book me one for June/July, I never heard anything so at my last appointment I asked about it again and someone rang me up to say she had booked me one for the 11th June. She then called back about 10 minutes later saying I already had one booked for the 20th July. I said I thought this was abit late to arrange oxygen if required, I will have alot of stuff to arrange in August so I don't want to add to the list!

I received 2 letters with both dates asking me to confirm the appointments so I called up and told a different lady that I was going to the one on the 11th. She was not happy, she had booked the other one for me and basically said I was having it too soon and why did I ask for another one? I explained noone had told me she had booked me one and it didn't leave me enough time anyway, I explained I was getting married bla bla. Anyway she said 'fine go on Thursday' and hung up on me!!!!! How rude!!

So I turned up today and they had no record of me apart from my appointment on the 20th July. The guy called the ward and spoke to the rude lady (I could tell it was her) and she denied she had anything to do with it! He didn't tell me this but I gathered it from his side of the conversation. He then spoke to the other lady who had changed it for me originally (who is very nice) and then she was passed through to someone else.
In the end they agreed they could fit me in, thank goodness!!!!

When you have a flight test they put some gel on your ear for 10 minutes and it heats up your ear so it bleeds more. They then cut it which yes it does hurt abit, and collect some blood from it, my ear bled like crazy and I got blood all down my neck and on my chest!! They put the blood in this machine, it sucks it out of the tube which is quite cool. It then gives them some numbers that I don't understand.
They then put a monitor on your finger to measure your stats and then attach you to some oxygen and you have to wear the mask for about 20 minutes. During this 20 minutes they deliver you lower %;s of oxygen as what would happen on a flight. My stats were 95% at the beginning and the lowest they dropped to were 89%.
After 20 minutes they cut your ear again and take some more blood and then remove the oxygen until your stats have returned to normal.
She said I won't need oxygen as stats falling to 85% is when they start recommending it. That's it for the test and yeay I passed!!

Dog Talk

We took the dogs to a training course on Wednesday night, it last for 7 weeks, an hour a week. It's at this place called my pet stop and they also have kennels for your dog to stay in if you want to spoil them. You can pay for them to have tv's and go to doggie day camp where they all play in a big pen together, not that Alfie would like that very much!

There were two other dogs in the class and Murphy who may I add barked at the other dogs more than Alfie which makes a change! We did basic things like sitting, sitting and staying, standing up, that kind of thing but only in short attempts. The trainer said Chihuahuas are very intelligent and can figure out quickly if you are tricking them (we did an exercise where we pointed at random stuff on the floor to get their attention, Alfie got bored after about two goes) and they won't do anything if they don't get a treat, other dogs will do it to impress you, not a chihuahua. She also said it is likely he will never get on with other dogs which disappointed me, but we can teach him to not growl etc at them. We have some homework to do for next week, I have to make him sit and stay before I let him out, give him his tea that kind of thing. To be honest he can do alot of it already, we always make him sit before he gets his tea anyway.

Alfie also went to the vets on Thursday morning. He tried to pick a fight with a massive curly haired dog just as we were going into the room. Alfie now weights 2.10kg, he has put 10 grams on the little fattie!!! Everything seems fine, his cough has gone apart from when we went to the dog training he was coughing alot but I thought perhaps it was nerves. We have to give him the prednisolone every other day now to wean him off and see if his cough returns. If it does they may need to put a camera down his throat to try locate the problem.

Went swimming today and remembered whilst swimming I had arranged to go for my port flushing at 3pm so I had to cut my swimming session short and rush around to get there in time. I feel like I haven't had my port accessed for ages, it has been 6 weeks which I suppose is the longest in awhile. When I got there, there was another cf patient at the desk and no staff around. I am never sure what to do because I feel rude keeping my distance, I hardly ever come into contact with other cf patients, the hospital staff are usually very good at ensuring this, as soon as they did see me they ushered me into a room like usual!