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!

4 Months Lucky

Oh dear, how can things go wrong so quickly?!

Last Thursday I started with a headache that decided it was going to stay until Sunday, so I was taking pain killers religiously to keep it under control. We took our nephew to LegoLand at the Trafford Centre on the Friday and had a great time, here are some pictures:

On Saturday night we went out for a meal with some friends we have made at Surrogacy UK which was really nice, we haven't seen anyone for awhile due to a lack of socials so it was nice to have a catch up. Then on Sunday Pete was as the cricket all day and I just had a relaxing day as I'd had a busy week and just wanted to get some rest!

On Monday morning I woke up and felt like someone had punched my face, my whole face was throbbing, my nose, around my eyes, the top of my head, it was horrible! I called the hospital and told the Doctor I thought it was my sinuses as I'd had a headache for 4 days and now my face was throbbing. He agreed to post me a prescription for Amoxicillin since my chest was OK for the minute but to call if my chest started to become a problem.

By Wednesday (prescription still hadn't arrived, they send them 2nd class!) I was not feeling good at all, chest aching, lack of energy, runny nose, coughing lots, sweating during the night, having problems sleeping, I've had to sleep propped up the last two nights just so that I can breathe properly and I've taken kalms to help me sleep. On Monday night I was hallucinating and hardly got any sleep, it was so scary! I saw a big dog on the bed, a spider dangling from the ceiling onto the bed, at one point I thought Pete was just laid there starring at me, he wasn't at all, he had his back to me! Another time I thought he had all rags in his hair, then I saw the room was full of leaves and at one point the light in the room was flashing. I've never experienced anything like it! I think its the Voriconazole, as I started that on Sunday and it says it is one of the side effects, I've never had it like that before though!

So surprise surprise I am starting IVs on Monday, its the earliest they could fit me in, wish I was starting earlier to be honest, Monday seems ages away! I've had to cancel my mentoring session this week that I volunteer as at Scope and I also had to cancel my meeting to start up the Scope Mentoring blog again. I'm just sat around not doing much, yesterday I had a bath instead of a shower as I felt too tired to shower, I wore my tracksuit bottoms, a sure sign I'm feeling bad! I had to go to Tesco to get some food and it was raining very heavily, no surprises that the disabled spaces were taken by people without stickers, always happens when it rains! Coughed my guts up walking around the shop, at least people get out of my way... was drenched by the time I got home. Bet I looked a right sight, never mind....!!

I've gone 4 months without needing IVs, so I've done well, my average is 3 months. So I can't complain, bring on the IVs!

PS - I have been having problems leaving comments on other peoples blogs, so if you are having the same problem, try unticking the 'save my details' box

The Festive Season

Dear Blog, I am sorry I have neglected you over the last month. What can I say? I have been busy and not had much to say! I promise to give you more attention from now on...

Happy New Year everyone! Lets hope that 2011 is going to be a good, happy and healthy one! My new years resolution is to learn how to knit! I am starting my lessons this months with a friend from Scope, so put your orders in for scarves etc haha!

Here's a run down on what I have got up to over the festive season...

On Christmas Eve we went to my Nana's like we do every year

My brother and his girlfriend


Two of my cousins


Christmas Day we went to my Dad's for breakfast, his heating has broken so we were kept warm by the smallest heater ever! Good job I got a new coat for Christmas! We then went to see my Nana then went home and waited for my brother to come and pick up us. He rang us after about an hour to inform us he had forgotten to come and pick us up! So we made our own way to my Mum's for Christmas lunch, then in the evening went to my Aunties for a party.





On boxing day we went to my aunties from my dads side and I finally got to meet his girlfriend and then on the Monday we went to another aunties from my mums side.

Then on Wednesday we made our way over to Stockport to see Pete's family, I am terrible at remembering to take photos, I have told Pete to get some off his Dad, but so far no luck! Pete's parents bought us lots of lovely bedding and some plane tickets to go on holiday with them on the sailing boat in May, wahoo! We met up with some friends in Stockport too, I actually remembered to take some photos here!





We came home on Friday for New Years Eve, had some friends around to ours and someone came up with the smart of idea of playing a drinking game , we then went to our local pub for midnight, karaoke was involved I'm afraid to say, then we came back to ours to eat our takeaways.















Since then we have both been recovering from our busy week, watched a few dvds, got a curry etc. We do not do sales shopping and stay as far away from the shops as possible!!

CF wise I haven't been great but not bad either. I think all the drinking dries out my chest and makes it difficult to shift the mucus, then obviously all our plans have tired me out. Also I seem to have had alot of tummy/toilet problems, I'm not sure if its the iron tablets or the fact its difficult to keep control of taking enzymes with food over Christmas. I find I am nibbling on things all the time, but not enough to warrant taking a tablet with! It's probably a combination of both.
On top of all this, even though I rang up before Christmas to get some more disks for my I-neb, they still haven't been delivered and now I have one cycle left on my disk and still no sign of any more been delivered. The company assure me some were sent out on the 29th (even though I called up before Christmas!), so royal mail have let me down big time.
I also ordered some more sachets for my nasal rinse before Christmas and they still haven't arrived and it hurts too much to just use salt, so my sinuses are starting to feel congested. I also dropped off my prescription for my tobi before Christmas and it still hasn't arrived at the chemist, not that I'd be able to do it anyway as I can't use my I-neb!
So even though I have been 100% compliant all the way through the festive season, and I've felt like all I've done is plan things around treatment and spent every spare minute doing them, I now can not do all my treatments, infact from tomorrow all I can do is physio and no nebs what so ever. Why are companies incapable of functioning throughout Christmas? I manage, other people manage it! Thanks to them I'm probably going to end up on IV's, I already feel like I am slipping. So thanks royal mail, respironics, chemist direct and the tobi suppliers for nothing...! God it makes me so mad!

Smooth 2 weeks

I finished my IV's yesterday and I think it's the first time since I can remember that I've had a smooth course of IV's and have managed to maintain a relatively normal life whilst on them!

My port hasn't itched or being sore, the only problem I had is when my needle was changed half way through, the area hurt for a day or two afterwards and towards the end, the muscle was starting to feel tender. The dressing came off yesterday and needle out and there were no lumps or bumps, weeping or crust, just abit of flaky skin and some redness from ripping off the dressing. Wahoo! So we have sorted that problem which is great!

I haven't felt particularly poorly whilst on the IV's, abit tired and groggy but nothing compared to usual. There a few things that may have contributed to this a) I have tried to stay well hydrated through drinking powerades, they also give you energy b) I have taken anti sickness tablets (ondansetron) before every dose of IVs c) I have 2gx3 a day ceftaz in the first week then upped to 3gx3 a day in the second week. Obviously there could be other factors such as what was making me require IVs in the first place, but I think the listed things have helped.

Pete said something like this the other night...
Pete: 'did they increase your IV to 3g?'
Me: 'yes why?'
Pete 'well why aren't you tired then? usually when you are on your IV's you are sleeping by now but instead you are jabbering on, I like getting the peace and quiet'

Charming...! But a perfect illustration of how much better these IVs have gone!

My weight has increased to 56kg which I am not surprised with, I can't stop eating lately, I'm going to turn into a right fattie!

So at the end of IV's my fev1 is 39% which I am disappointed with but hopefully by my next outpatients appointment it will have gone up abit more. I was hoping the hypertonic saline might have helped it increase as I've heard stories of it helping people get their lung function up by 10%!

Since I finished my IV's yesterday I have felt chesty already, sometimes I wonder if it's in my head! However I went to yoga this morning and was coughing whereas I did some more bulb planting on Wednesday and didn't cough at all. I also have gotten a headache yesterday and today and it feels like its my sinuses. It's almost like I've stopped the IVs and the mucus is building up already!

I'm going to see a scary film with my friend this evening, I watched the Grudge 3 the other night and it wasn't even that scary however when I went to the toilet in the night I saw something white out of the corner of my eye and ran back into bed! I get scared so easy, so maybe this isn't such a good idea.....

OK So Far!

Well I'm half way through my IV's now and it hasn't being too bad. That's why I haven't blogged because I have been quite busy and then couldn't be bothered the rest of the time!

The nurse called me earlier in the week to see if I wanted to increase my ceftaz dose to 3g three times a day for the second week, I had no idea they had put me on a lower dose of 2g, three times a day, which probably explains why I haven't felt so sluggish or got sore eyes! So I agreed and hopefully because my body has gotten used to the antibiotic, it won't hit me like a ton of bricks like it did last time I was on IVs!

My cold has gone, my nose is no longer runny, there is still gunk at the back of my nose/throat, however I get this all the time anyway so I'm not expecting it to go. I must admit my sinus rinse has been a godsend whilst I've had this cold, it has helped me to clear my nose and prevent headaches. Infact thinking about it, since I started doing the sinus rinse months ago, I have hardly had any headaches, it's great!

The hypertonic saline nebs are going well too. I'm coughing more up during my physio sessions, I've usually filled the bottom of my sputum pot just doing the nebuliser, before even moving onto physio! This means my chest feels clearer in between sessions and I'm not coughing as much. I've noticed that the hypertonic saline soon wears off, perhaps 15 minutes after doing it, which means that physio does get harder towards the end of a session which isn't great, however it also means the effects don't carry on once I have finished which is obviously a good thing. Don't want to spend the next three hours coughing my guts up, I don't think that would be very helpful!

Since I am on my IV's at the moment I have not been doing my tobi neb, so it will be interesting to see how I cope doing five nebulisers a day, I'm sure it will be fine, it just means i'll have to get up even earlier on a morning if I need to be ready by a certain time! It does get ridiculous how long it takes me to get everything done on a morning!

I've been thinking about how I would cope if Pete and I were to have a baby and how much help I would need. I've discussed with Pete that he wouldn't be able to stay at work so late everynight and then I was thinking about ways that my family would be able to help me. It's hard to plan for something that A) you don't know is even going to happen and B) you have no experience of! The things I'm mainly worried about are: lack of sleep and it resulting in me having the energy to do nothing and arguing with Pete because I am grumpy and also not having the time (and energy) or ability because I have a child jumping on me etc, to do my physio and nebulisers etc. Also, how would I have time to watch all my TV shows?! Important things need to be considered!

I went to Ikea this week with my friend, oh the joys of following arrows around the WHOLE shop when all you wanted were a few bits and bobs... I really do hate that place! I have also planted some bulbs in the garden, tulips, daffodils etc. So hopefully next spring we will have a nice colourful garden! I walked Alfie with my dad and his dog this morning, Alfie hates my dads dog and now I think my dads dog hates Alfie too! Alfie did calm down throughout the walk, he stopped trying to attack him and even sniffed him abit, but that was as far as it got. A few more meetings are required I think!

Sinus Rinse

I received the sinus rinse in the post yesterday and both Pete and I have had a go with it. So far we both think it is quite good! You fill it up with boiled water (obviously you let it cool down first!) and mix it with a sachet of the saline granules (you get 60 sachets in the pack and then can buy them on their own).

Then you gently squirt it up one nostril until half of the solution has been used (120ml per nostril). As you squirt it up, you continue to breathe through your mouth and then the solution starts the come out of your other nostril and even your mouth. With the solution comes out snot and anything else you have stored up there, it's ace! You give your nose a blow and then do the other nostril.

I haven't woken up with a headache this morning and my nose does feel clearer, Pete said the same. If once a day isn't enough, it can be done twice a day too.

Obviously we need to use it longer to see if it helps long term, but so far so good!

Click here for a link to the product

Happy Easter!

Happy Easter everyone!

Pete and I went to church today so I'm feeling all Eastery (if that's a word?), it was a good service and feels good to celebrate Jesus' resurrection. We then took Alfie for a walk which was nice if not abit cold and then I have had a little kip this afternoon.

I have been very naughty and have run out of Tobi, I knew it was running low yet still did not go to the chemist to pick up my supply as I am lazy. I went to get some out of the fridge and the fridge was bare. A little smile did appear on my face as it means I don't have to do it today and perhaps tomorrow too if the chemist is not open. Two days with only one nebuliser to do and totally not my fault....yeah yeah I know it is really but there is nothing I can do about it now!

I started back on my voriconazole as I am doing one month on and one month off, took my first lot yesterday and last night I had some seriously crazy dreams! I can't really remember them now but I know they were weird!

I've ordered a nasal sinus wash to try help clear my sinuses as I keep getting headaches again, my head just feels tense and full up all the time. Its a wash that someone recommended to me so lets hope it works, I'm still struggling with the dripping down the back of my throat, it's getting better but not gone completely. I am going to let Pete use it too and if it helps him I will buy him his own. He has a runny nose all the time and breathes through his mouth, it makes him snore and breathe heavily and he is blowing his nose all the time. Allergy tablets don't seem to help, anti congestion tablets/sprays etc don't work. The GP said it was allergies, but like I say the tablets don't seem to work. Pete being a man would rather put up with it than go to the doctors again and hence I have to put up with sleepless nights and have to wear ear plugs that make my ears hurt, although they are pretty good, they are called bio ears and I'd recommend them. He has now also started to twitch in his sleep, not little twitches but big ones that make the whole bed move. I think I can see why I am tired all the time! It's getting to the stage that once we move I'm going to banish him to the spare room, we don't have one at the moment! So hopefully this nasal wash might help out!

We are not moving until the 16th April now, the vendors can't complete until then because of work commitments! Not very impressed but not much we can do really!

Feeling Sticky!

Last week I think I might have had a virus or cold or something, not really sure. I find it difficult to tell what is CF related and what is not. My nose was runny but not completely blocked so I don't know if that was sign of a cold or just my sinuses as I have been getting headaches almost everyday, but again this could be because of a cold. It's probably abit of both as one is bound to affect the other. This has been dripping down the back of my throat and it's made me more productive than normal and my sputum has been very sticky. Infact on Sunday when I woke up, I went to spit some in the sink and it was just hanging out of my mouth as it was so sticky it was still sticking to my throat. It started to make me gag and I thought I was going to be sick! I had to pull it out with my fingers, lovely! This could have been made worse because I went out the night before so was I probably dehydrated!

Anyway, all last week I have felt abit achy and tired, very lethargic and not felt bothered to do much. Saying all this though I haven't felt terrible and don't think it's anything major, like I said, not sure what it is really!

Going out on Saturday probably wasn't the best course of action to help with whatever I had but nevermind, I wasn't even planning to go out, we went for a meal then ended up going out after. Spontaneous nights are always the best, had a really good time and got in at 2.30am. I even did my tobi neb when I got in, I'm really am surprised it doesn't make me sick when I'm drunk as it does not taste good but guess I must be used to the damn thing!

I was able to dance alot more than last time which was really good and I drank rather alot. A beggars dog humped my leg which was interesting.... I then kicked up a fuss as when we got into the club there was no handwash or soap in the toilets for me to wash my hands after stroking the dog. No wonder germs get passed around when there are no handwashing facilities! God I am getting old aren't I?!

I hardly seemed to cough which was weird, perhaps the sputum is so sticky I'm not coughing at the moment, I know there is loads there but I'm not coughing as much as usual. Weird! When I do cough it's like a big beastly cough, I sound like a bear and my face feels all red and like my veins are popping out!

On Sunday I didn't get up until about 11.30am and didn't get dressed until about half 3. So my morning physio was quite a late one! I then didn't do my evening physio until about half 10 in the the evening as I went out for another meal (too many birthdays this month). I didn't want to do my physio before I went as I'd only done my morning physio a few hours before!

My friend and I also took Alfie for a walk in the afternoon, even managed to have the car roof down on the way there! Bring on summer!

My friend Tori had another transplant call this weekend but sadly the lungs were not suitable, this is her 7th false call. From discussing this with my friends I found out two people I know would want to donate their organs when they die, but haven't signed up. These aren't bad or selfish people, infact one said they thought organ donation should be opt out rather than in. It just proves that people do want to donate but just don't get around to doing it or don't know how to. It's so silly, I'm going to send them the link so hopefully they will sign up now.

Here are some pictures from Saturday night and a video

Me and the birthday boy!

I'm so cool.....!

Come on little brother, give your big sis a hug!
So childish, messing about with Helium

RIP Mobile Phone

Since I got back from our Honeymoon I have had a headache every day, not necessarily a full blown one but a definite ache there constantly. As you can imagine this is not very nice and I am getting annoyed at it. It's mainly on a morning and it gets worse when I have a coughing episode, for example last night I was doing my physio and the right side of my head felt like it was going to pop everytime I coughed.
I took some books back to the library the other day and the two second walk it took from the car to the library made me cough alot and then voila I got a splitting headache, all from retuning a few books!

Enough is enough, when 2 cocodamol and 2 ibuprofen are not shifting the pain, intervention is required! So I called the hospital on Monday, I had been putting it off as I don't want to end up on IV's which is my dread everytime I dial that number! I spoke to the nurse and asked her if she could send me a prescription for doxy... whatever its called (my medical vocabulary is amazing I tell you...!), surprisingly she said if the doctor said it was OK then that was fine. Wahoo! I didn't even have to go see them! So I am just waiting to receive that and then hopefully it will help stop the headaches as I am assuming it is infection and inflammation in my sinuses.

I have had to buy a new mobile phone as mine decided to start dying on Saturday. It was teasing me and flashing on and off, my poor mobile, I'd hoped it would survive forever but alas its days are over. I had hoped I could buy the same one. This is a sign of me getting old! I can't be bothering learning new functions on a new mobile and my lovely Samsung D800 does everything I require of it. But no, they don't seem to do it anymore and somehow I have ended up buying a touchscreen mobile which I swore I wouldn't do as Pete has one and I can't use it! I know exactly what happened, it was pink, what more can I say...? So since last night I am the owner of a pink Samsung (I kept with the same make to make my transition easier) tocco lite. We will see how it goes, I can see it been a love - hate relationship!
Does anyone else hate having to transfer all your numbers, photos etc to the new phone? I do! I spent all last night doing it, this is part of the reason I put off getting a new phone for so long!

Alfie started his dog training classes again last week, he did very well. There are some massive dogs in this class, like one of those Akita's and a very bouncy Labrador. Despite been surrounded by giants... Alfie did well for his first session, we are starting clicker training this week. Apparently Chihuahua's don't always take to it (why am I not surprised), so we will see how it goes!
Alfie hurt his back leg again on Monday so I was the owner of a hopping, three legged dog for the day. I was going to video it but felt cruel! He is much improved now, he is not screaming anymore when I try touch the offending leg and he is walking normally again, so I think he just pulled or twisted a muscle. I did spend most of Monday holding one of those heat up rice bag thingys to his leg, that dog doesn't realise how lucky he is to have such a caring owner!

I've started back at the gym after a month of not going! I am planning to join yoga as someone on the CF forum said it can help with your lungs. So my plan is... gym on a Monday, swimming on a Wednesday and yoga on a Friday. We will see how I go!

Wahoo!

Had outpatients today. my weight is down slightly at 55.4kg but nothing major, sats 96% and my fev1 is still 46%! Also my fvc is slightly up!

The last time I had IV's was in March so I am doing really well. I've actually booked myself to have some IV's in August if this good period continues (fingers crossed). The reason I have booked them is so I am well for my wedding and honeymoon but I need to make sure I leave a few weeks before the wedding for my arm to heal if it goes manky, I don't want a red arm for my wedding! Aug is only 6 weeks away so I don't need to go for an outpatients appointment in between. When I was arranging this I was surprised at how close the wedding is! So now I'm panicking abit! Its 11 weeks! Yikes!

I told the physio I had broken my acapella mouthpiece (abit of plastic snapped off so now its really sharp) and asked her for a replacement. She gave me a whole new acapella, apparently noone has ever asked for a replacement mouthpiece. Must just be me then that bites it! I also asked her to call respironics about my I-neb as I am sick of having to ring them for replacement disks, they are supposed to send me a supply every month but they never do! I run out and then have to use the old school porta neb and the tobi takes over half an hour to go through. She said respironics are been abit funny about patients not having promixin through the i-neb (they make promixin or something) and using tobi so they make no money. Well they shouldn't have agreed in the first place then!

The doctor filled in my form to have oxygen on the plane and I told her about my headaches. She isn't referring me to and ENT specialist as the headaches aren't all the time, they just come every so often. She said some antibiotics should reduce the pain as its infection building up and is common if you have psuedomonas especially in this type of weather. She has given me Doxycycline to take which is apparently good for the sinuses. I've never had it before so we shall see. I have finally finished Ciprofloxcin and Voriconazole and now I'm on this and guess what it says on the front 'AVOID THE SUN'! Grrr!!!!!

Pete and I are going to London tomorrow on our Henry VIII trip, can't wait! Just put some fake tan on my legs so I can wear a dress since it's going to be warm!

Here are pictures of the invites. The first one is for the whole day, second one for the evening reception and the final is the inside of an evening reception invite (I had to hide some bits, don't want everyone to know my address!)

Tytania

Last night I went to see the band my cousin is in (www.myspace.com/tytaniamusic), my cousin is the drummer. They are great, never knew my cousin was a musician! They are recording at Abby Road in April, well I think that's what they said anyway! Aw I remember when he was born (just about anyway) and when he was a brat hehe, now he's all grown up in a rock band! They sang some of their own songs and some covers, they even sung abit of Britney Spears, Womaniser. Yeay!

I was sooo tired though and wasn't much fun, I wasn't drinking as I wanted to drive so we could just go when we wanted, plus I didn't feel like drinking because I was so tired. You know when your tired and just kind of are not with it completely? Well that's what i was like. As a result I didn't realise there was a step to get get down from our table and I fell into another table and knocked a drink over my Auntie, whoops! I still had fun though and we left after the band had finished at about 11pm.

I'm taking it easy today as I still feel tired and not feeling great to be honest. I constantly feel bunged up in my head and nose so I assume this is my sinuses and I've woken up with a headache, I seem to get one most days at some point. I also think I keep getting acid reflux as I feel sick in the back of my throat after I've eaten and sometimes I get pains in my chest. I'll still go swimming though and take Alfie for a little walk, can't let the little guy suffer because I don't feel great.

Pictures from last night

ArGh!!!!!!!!

My port site is itchy and red and there is puss. Stupid dressing keeps peeling off because it's rubbish! I woke up this morning with half of it hanging off, must have itched it in my sleep! To top it off, Alfie jumped on it last night so now the port site hurts! Argh!!!! I had a mini emotional breakdown this morning whilst in the bath, poor Pete has to put up with alot! It first initiated because of the port/dressing situation and lack of sleep due to a certain somebody snoring all night so loudly even earplugs did not block the noise out. I then started crying and a hard bit of mucus shot out of my mouth onto the carpet as crying makes me cough, then I blew my nose and there was blood because of my nose spray, so I collapsed into an emotional wreck. Argh!! Anyway crisis over, anger has been released, thanks for reading xx

ps - a little birdie tells me that a certain someone is being nominated for the cf breathing life awards by moi :o) You know who you are! I have written the most amazing reason why she should be nominated :o) I don't really know how these awards work, does it go on the most votes or just the reasons you put? And before anyone says anything, no I am not nominating myself! But yes I know I'm amazing too ;op

The worst thing that cf could do to me

I went to clinic today for a check up, my lung function is up abit (fev1 42%), weight 56.9kg and sats were 97%. My sinuses have some stuff clogging them up, but I haven't had headaches for awhile so they are just going to monitor it. The doctor was going to give me a nose spray but she forgot and did I , oh dear! Im carrying on with the voriconazole, the doctor revealed it costs £1000 for one months treatment so perhaps why they were abit reluctant to give me it?! I had some blood taken to check my liver as voriconazole can mess it up, the nurse used my little reliable vein that I look after for blood tests, i'm very protective of it!

I asked the doctor about getting pregnant, not because I want to get pregnant right away but I would like to know if I am even going to be able to have children.
She said people with a lung function like mine have had babies but there are alot of risks and she can't predict how I will cope with it. She said anything above 60% and she would be happy for me to get pregnant but below and it is more risky. She said there is a risk I could lose lung function and not get it back after pregnancy and if I got an infection during pregnancy I could lose loads of weight as they can't treat it as well as alot of the antibiotics are dangerous to the baby. She said I could even end up needing a transplant maybe 2 years after having a baby if my lung function dropped into the 20's. Obviously these are all just 'maybes'. She said if I had to be referred for IVF e.g if Pete was a carrier of cf or if I couldn't conceive because of extra mucus, they may not accept me as the doctors have to show I am going to live until the child was 16 years old. I'm guessing they look at this as well if you want to adopt. She said if I definitely wanted to do it they would support me and help me but would have to document they had warned me against it. She suggested I talk to my family and bf and perhaps speak to people who have had a baby and they had a similar lung function to me.

So as you can imagine I am gutted, I can cope with having iv's, feeling ill, even knowing i'm not going to live to old age. But to be denied the chance to be a mother if the worse thing cf could do to me. I knew the doctor would say things like this but now i've heard them, it's sunk in abit and I just don't know how to feel. I have to choose to either not have a child or have one and risk getting even more ill, even dying. I just want to know what I did wrong to deserve this? It's not like I have put off having a baby to have a career and now want one but i'm too old, it's not like i'm just not very fertile (as far as I know!) and need some help with IVF. My body is so crap it might not be able to manage to carry a baby and if I try to adopt or have a surrogate they are going to question if i'm going to live long enough, so I might not be able to do that either! People who have kids will probably tell me, oh its not all its cracked up to be anyway, well how would I know? How will I ever know? The people who say that are lucky enough to have found that out themselves, it doesn't make me feel better. Am I selfish to want to go ahead anyway and risk it? I can't imagine never having a family, it's what i've always wanted. I don't want to die and I don't want a transplant or be a burden to others, but I don't want to be miserable wishing all the time I had a child. It doesn't help when there are babies everywhere, god even in the lift leaving the ward there was a baby looking up at me. I cried in the car on the way home and I don't know how much longer I can try to stay positive, I know i'm getting married and I was so happy yesterday as I bought my wedding dress and i've been really positive this week. But whats the point in even getting married if you don't have children, and is it fair to deny Pete the chance to have children or if I do give him that chance to have an even iller wife instead or one that has died and left him with a baby? People who have their health should never take it for granted, you don't know how lucky you are you jammy buggers

King and Queen of England

As you can see Pete and I have travelled back in time and taken over England as King and Queen (click on link). As you can also tell, i've had a really productive day looking on the Tudors website...

http://thetudorsportrait.com/gallery/queen-gemma-the-magnificent-the-87625th/

So today I went for a scan on my head, because im crazy and think i'm in the 16th century. No just kidding, I went because I keep getting headaches so they want to check my sinuses. The doctor lied and said I was an inpatient so I got a call this morning at about 11am (whilst I was in bed watching desperate housewives on my laptop, they know how to pick their moments) 'Gemma its the nurse from ward 2, you have a ct scan today at 3, you need to pretend your an inpatient so come and collect your notes from the ward beforehand and so we can put a name band on your wrist'. So yes my doctor lied to get me a quick appointment, what a genius! So I went and had my brain scanned, you just lay on a bed and a circle thing moves around your head for like 5 minutes. I had to keep really still and really needed to cough, but I managed to hold it in. Can you believe I had done my hair all nice and they made me take my hair clips out for the scan?! I managed to salvage it, so it was ok. Whilst I was waiting I had a good read of my notes, although I don't really understand lab reports and stuff so it might have well as been in chinese.
I actually had to stop to catch my breath when walking from the car to the ward as its up abit of a hill, then it suddenly hit me, my lungs are a pile of w*nk and I hate them. So we are not speaking at the moment, my lungs and I. I'm sure we will make up eventually xx