Rainy Anniversary!

I'm back from the Lakes and I'm tired so this will be a short blog.

We had a great time even though it rained alot of the time! We managed two walks, one was about an hour long around Grizedale Park and the other was 3 hours (!) by Coniston lake, we had a picnic by the lake during the walk, it was very nice. We found the walk in a book where all the walks in there are flat i.e. no uphill bits. It's like the book had especially being made for me! :o) There were still a few uphill bits that I struggled with (Pete picked one of the more difficult ones out of the book...) but nothing a person with healthy lungs couldn't cope with, it would be very difficult to find a completely flat walk in the Lake District, afterall it is very hilly! Needless to say I was tired afterwards and had to have a nap and I'm still tired today so just taking it easy.

Oh and I did it again, I forgot to take spare disks for my I-neb...! So only had 12 cycles when I do 9 a day! Had to cut out my hypertonic saline and only do my tobi once a day, this cut it down to three cycles a day. So had a nice break from my nebuliser regime for a few days!

Man makes fire with help from wife...Stylish as ever!Our Wedding CandleHow cute am I?!

Wedding Anniversary!

I've added an extra icon on the side of my blog to show what I am reading at the moment. I have copied this off another blog and thought it was a good idea as if you are like me, you enjoy reading but never know what to read! My local library is not the type you browse through, you have to tell them what you would like to borrow and they will order it in for you. This means you have to know what you want to read, therefore I like to know what others are reading to give me ideas! The book I am reading at the moment is mine, not from the library and I've already read it once but I absolutely love it so reading it again! I just finished 'If You Could See Me Now' by Cecilia Ahern (author of PS I Love You).

Big news, I have changed my hair colour! My hair is now a strawberry blonde colour, which is not ginger as people keep saying it must be. My aim was for a very light brown with a pinky colour to it, it's stayed blonder than I hoped, but that is because of the bleach still in my hair, it just needs to grow out, you can see the proper colour on my roots where there is no bleach! I tried to take some pictures but they don't really do the colour justice

Since I finished my IVs last week I have been feeling tired very easily, in fact I am feeling quite annoyed about it. I already seem more chesty and am getting breathless easily. I went to yoga on Monday and I got so breathe less I thought I was going to have to sit out for awhile, we were doing all these stretches stood up, called warrior one, crescent moon etc

I always find them harder as it is, but all I could do was think about trying to breathe and then the yoga teacher was moving my arms and hips to get me to do the positions correctly and I just wanted to scream at her 'I can't breathe never mind do the bloody stretches correctly!'. I pushed myself to keep going though as I don't want to be the odd one out, I hate appearing weak! So even though I felt like my face was going to explode because it was red from lack of oxygen or something and I was breaking into a sweat, I kept going and managed to not collapse in a heap. After relaxation I swear I had to shout at myself in my head to actually get up and drive home, then the rest of the night I just laid around as I had no energy.

So no I am not happy with my stupid CF this week, especially since we are going to the Lake District for our wedding anniversary and were planning to go on some walks.

Yes that's right, on Saturday Pete and I will have being husband and wife for a year! I can't believe it, it's gone so fast. I feel so lucky for having bagged myself such a great husband and I can safely say that marriage has not somehow made our relationship deteriorate, as all these TV programmes would make you think. According to them we should be getting divorced by now right...?! I love Pete so much and I can't wait to spend the next year with him, and the year after that and forever!

Here is a little video I have made for us

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!

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!

Organ Donation Awareness

I just wanted to blog about an event that is happening that some people might be interested in and is being organised by some of my friends!

Three lovely ladies have organised a ball to raise awareness of organ donation, they are only here today because they all have received a double lung transplant!

Here is the flyer for the event and a link to the facebook group, sadly I can't go as I could give them an infection and the same rule applies to anyone else with CF pre transplant, however anyone else is welcome to go, so if you fancy a trip to Glasgow then get your places booked!

For the facebook group click here

One of the three lovely ladies is Victoria who received her transplant quite recently. She has also been on TV lately with her boyfriend Gregg, to raise awareness of organ donation and CF of course. Here is the link to see them, skip to part 3! They were both great!! Remember they didn't know the questions in advance and were nervous!

Back in the North

Don't worry I'm still here, just about anyway!

London was brilliant, it has totally wiped me out though, hence why I have not blogged until now. London is evil, there are stairs everywhere. Next time we go I am refusing to get the tube, its bad enough struggling without people barging past you (everyone is in a rush in London) and trying to hurry you up. My body ached from top to toe, I was so tired on Wednesday that it was affecting my breathing, I guess I was trying to use as little energy as possible to breathe. Anyway all that aside here is what we got upto

On Tuesday after we arrived we went to the History of London Museum, I have no photos because you aren't allowed to take any. Then in the evening we went to see Henry VIII by Shakespeare at the Shakespeare's Globe, abit of interesting information for you, one of the first times this play was ever performed in 1613, a cannon shot burnt the Globe to the ground. Luckily that didn't happen when we went! The Globe theatre is not indoors, its a circle and if you are sat along the side then you are undercover, if you are stood in the middle you are not, and if it rains you get wet. Which it did, luckily we had posh seats at the top and so stayed nice and dry! The play was brilliant, the costumes were amazing, I really enjoyed it. Here's a picture of the set

Commoners getting all wet haha!

Lords and Ladies - nice and dry :o)

On Wednesday we went to National Gallery and it was very exciting because I got to see two paintings I really wanted to see. The Ambassadors (1533) is by Hans Holbein the Younger (see below, I managed to sneak a photograph of this one) and The Execution of Lady Jane Grey by Paul Delaroche (I couldn't sneak a picture of this one but below is one off the Internet). I won't bore you with information about these paintings!

Then Wednesday afternoon we went for a tour around the Palace of Westminster. Again no pictures were allowed, I swear you are not allowed to take pictures anywhere, there was even an announcement when we were on the tube that you can't take pictures on there! Don't give me any of that rubbish about its for security or its because it's historical, the house of commons is on TV every day live, so I don't think a picture of me stood in there would have harmed anyone. It's because they don't want their tours slowing down and people stood taking millions of pictures, getting in the way. Anyway rant over... The tour was really good, we went in this room called the Tudor and Stuart room, well you can imagine how happy I was in there! There were no MP's in sight, they are all in recess at the minute, so us commoners have the chance to look around, but we are not allowed to touch or sit on anything, heaven forbid! We were allowed to take pictures of Westminster Hall (wahoo!), this was where the trials of people were held such as William Wallace, Charles I, Guy Fawkes and Thomas More. Also they found a tennis ball in the roof that dates from when Henry VIII was King, so he may have played tennis there!

Wednesday evening (by which point I felt like I was dying, but happily!) we went to see the play Anne Boleyn at the Globe again. This play was quite funny and easier to follow as it was not Shakespeare, here's the set for this play

On Thursday we went to Windsor Castle, I would not recommend going here. It is far too overpriced for what you get to see and it's not even a very nice looking castle. Plus you spend half of your time queuing! Anyway we went because Henry VIII is laid to rest in St Georges Chapel with Jane Seymour, there isn't much to see though. They are in a tomb under the ground so all there is, is a plaque on the floor. Not sure if Henry would be very happy with that! The state apartments were nice to look around and I admit there are some interesting paintings on the wall including some Tudor one's, but to be honest I was so tired I was ready for home! Again no photos were allowed inside....

Here are some other photos from the trip

We like escalators!

I went to outpatients today (at 8.50am ekkk!!) and I am starting IV's on Thursday damn it! But I shall go into that in another blog as I think this one is long enough and I've probably bored you with all my information!

Silly Cold!

Well this cold is officially trying to make my life a misery but I’m not going to let it!

It's not like I’m in bed dying or anything, I’m still out and about, but it's limiting me and I don't like being limited. Plus I feel it's dragging me closer and closer to IV's which I am not happy with, it would be OK if IV's were as simple as I have a needle in and have some antibiotics pumped into me for two weeks. However it’s not so simple is it? Its two weeks of pure misery and feeling like poop, and I still feel like I am recovering from the last lot! Surely such aggressive and miserable treatment should be rewarded by weeks of feeling good and having a life? Well I feel my last course of IV's should give me at least 12 good weeks, it owes me that much!

I just have loads of mucus in my throat constantly and it tastes horrible which is making me feel sick. It's dripping and sticking and making my chest crackle. It's causing me to do very loud coughs that make all my veins pop out of my head and makes people feel the need to comment on that I have a bad cough (yes thanks Sherlock), I am spending alot of my time trying not to loosen anything to try not to cough because it just uses so much energy it tires me out! What I do is try store it all until I’m on my own, then just let it all out, and then spend 5 minutes waiting for the spinning in my head and dots in front of my eyes to disappear. The worst thing though is it is just making me tired which makes me in a bad mood, which makes me feel miserable. I am not sleeping well either which is probably contributing, I’m sweating and having freaky dreams, I assume because I am back on the voriconazole.

Anyway the good news is, I have my mini back! Wahoo!!!! They have cleaned it too, yeay! Friday morning was a good morning as she pulled up outside my house and we went for a little drive together, Gemma and mini back together at last! I'm going to be really sad when she goes, I’m not particularly excited about getting my new car because I love my mini so much!

On Friday afternoon I helped my Nana look after my cousins little girl who is two years old. Let’s just say I am now sick of Peppa Pig and Pingu! She’s lovely though and it was good fun! On Monday we had to take Alfie to the vets, he couldn't walk and was whimpering in pain. It meant I had to miss yoga damn it! She thinks he has hurt his back so gave him an injection for the pain and he did limp around for a few more days but now he is back to his normal self. He needs to realise how small he is and stop jumping off everything, no matter how big it is!

On Saturday night I had to cancel seeing my friends which was disappointing. They were going into town which I had said I couldn't do as I want to reserve myself for London, however they were going to come to mine first before going into town. However I was really tried after working at the shop and the dogs had been on their own all day (looking after Murphy too) so I had to take them for a walk, then cook tea and get a bath and do physio. Alfie was sick everywhere from excitement when I got home and then got poo on his paw on our walk so he had to have bath just adding to my list of things to do, least he is only small! Pete was out so I had no help and I was just exhausted so had to cancel, I just couldn't get everything done by the time they arrived and then sit and talk for a few hours, just wanted to turn into a vegetable in front of the TV!

I am so excited about our trip to London, I have planned what we are doing each day and bought a little map of London and the tube so I can plan how we will get to each place. I'm going to be so tired when we get back, but I don't even care, it will be worth it!

Amazingness

I think yesterday I may have managed to out-do my own amazingness!

I took all of the following tablets in one go:

2 Amoxicillin
2 Paracetamol
1 Sudafed
1 Taurine Capsule
2 Azithromycin
1 Vit E capsule
1 Singulair tablet
1 Lansaprozole
1 Voriconazole
2 Urso (the third got stuck on my tongue damn it so I can't claim the third was included in my gulp as it was not!)

Now you can't tell me that's not amazing, that's 14 tablets in one go and have you seen the size of Amoxicillin tablets?!

I also took two nutrizym together without a drink earlier in the day (I was driving and fancied the galaxy ripple in my bag). I've only just started being able to take tablets without a drink, so downing two at the same time was pretty impressive.

Seriously, my own amazingness scares me sometimes..... haha!

The Common Cold

Somehow over the weekend I have managed to develop a cold! It only dawned on my last night that it could be a cold, I already mentioned I was achy and tired last week. Then on Saturday I developed a headache which I thought was a tension headache because of the surrogacy social event. Then yesterday I realised my nose felt bunged up, not blocked as I can still breathe through it, but kind of throbbing between my eyes because it feels like there is extra mucus squeezed in up there. So I thought about it all, as my chest has being quite productive the past week and the mucus has been lighter in colour which would indicate to me its not sputum from the depths of my lungs, but more like snot (yes lovely I know!) and I have come to the conclusion I have a cold. I don't seem to get colds very often, however when I woke up this morning I am convinced its what it is. My head feels crammed and the pressure is not nice and my chest feels heavy because I'm having to think about breathing more then usual if that makes any sense.

I'm not very happy about this as it is Pete and I's trip to London next week and I don't want it to make my chest all horrible and ruin the trip. So I have called the hospital and they are writing me a prescription for some Amoxicillin which I'm going to go and collect later. This should hopefully keep me going and give my body a fighting chance! I know antibiotics don't work against viruses, however I think the reason a cold makes my chest worse is because it makes my body weaker? So the infections get stronger? So the antibiotics help me with the fight. That's my theory anyway! The doctor agreed that I probably needed some too, I probably wouldn't have bothered to call them if I wasn't going away next week.
I also started voriconazole on Sunday as its my month on again, so that should help keep the nasty fungus' in order!

The social event on Saturday was great! It's weird, because I want them to see me as well enough to look after a child so I was trying to hide my CF to some extent i.e. trying not to cough, discreetly taking my tablets, made out I work part time when in reality its not really part time atall! Not that I lied or anything, I just find it interesting how in different situations I make myself come across differently depending on the situation and what I want them to think of me! I hate it when people ask me what my job is, its not really an area I want to get into with some people I have just met! I hate the thought of people thinking that I'm either lazy or that I'm this really sick person! We all know how the media portray people who don't work and receive state benefits, it's not in a positive way!
You can read more on the social event on my surrogacy blog, it really was nice to meet others in our situation and learn more about the 'surrogacy' world. I was so tired afterwards, socialising can be such hard work, especially when its with new people so you are on your guard more. I had a kip on the way back and also when I got home!