Monday, 27 June 2016



Tomorrow, after 6 and a half weeks I will be HOME! I'm ecstatic :D 

Let me backtrack slightly though...

I made it back down to the CF Unit last Tuesday; it was so nice to be back, in a different room this time, with my usual nurses, care assistants and cleaners. The windows here are a lot bigger so you get more natural light, which I find always improves your mood and the beds are much more comfy. I unpacked, had a much needed bath and felt settled. I made a conscious effort to unpack extra well- as it's usually sod's law that as soon you have fully unpacked and settled you have to pack again.... haha hoping to go home! 

Me leaving MADU for the CF Unit 

I also had phone signal again back on the CF Unit. It was actually pretty nice to be phoneless for almost 2 weeks. When I got back to the unit I had so many messages and voicemails to catch up on; definitely kept me busy for the evening. 

The rest of the week went smoothly and routinely: nebs, physio, meds, eating, baths, sleep, chats with nurses, care assistants and cleaners, bloods, lung functions, catching up on TV etc etc. I saw Chris on the Friday and asked if I could escape for a few hours on the weekend, which he said I could. Then he also said that he was thinking of letting me come home for a "holiday from the hospital". He explained that seeing as things are still quite static, I am probably only going to start declining as I sit here in bed for longer and longer, my muscles getting weaker and weaker from lack of exercise and not to mention the boredom starting to set in after all this time. He said he would think about it over the weekend and see what my blood results and lung function were like when he returned on Monday to make a final decision; but possibly come home on the Tuesday for a week or 2 to give me and my body a break from the constant IVs and sitting around and get back to some sort of normality. Then, come to a clinic appointment and we can reassess the situation and see whether I need to come back in to stay or start home IVs or maybe, just maybe, I might improve at home. After all, medicine isn't the be all and end all for getting the body better. 

That, along with being able to come home for a few hours on the Saturday and Sunday set me up on such a high. I was so happy and excited and felt so alive! Alex's mama ever so kindly picked me up on the Saturday with Al and my baby bear who was super cute and cuddly, which was lovely. 

We went back to hers and I got to see my in-laws. Al's little brother was so sweet, as he always is! I asked him if I looked any different (fatter due to the steroids), and he was trying to say "yes" but in a nice way haha bless him, he knows women well already! :P Then Alex's grandad Reg came over. Al and I usually see Reggie at least once a week and it's been over 6 weeks since we last saw him, obviously with me being in hosp but Alex also hasn't seen him in ages as he is still waiting for his licence back from he DVLA now that he is a year seizure free, so it was just so lovely to see him. We had a long old hug and I couldn't believe the length of his newly grown beard- always the height of fashion is old Reg ;) I think it meant a lot for him to see us again, and me and Al felt exactly the same. Bless his little heart, since Al's nan died he must feel lonely at times, so I'm glad when we can put a smile on his face. 

After that, me and Al went home for a bit to see the cats and then headed to my parent's for a delicious roast with my family. As always, many laughs and funny convos were had and I felt so happy to be back in my little bubble of my idea of "perfection". Thank you to all my family, which always includes Alex's family, for such a wonderful Saturday, I'll never forget it! 

On Sunday I came out again, for a more relaxed day where me and Al just stayed in and I did a face pack, had a bath, watched Orange Is The New Black and Ali made me the best bacon sarnie ever. It's the simple things in life haha. 

Oh, but how could I forget... in the morning of the Sunday, I did my lung function and it had actually gone up! Corr, can't believe that nearly slipped my mind haha. So the FEV1 had gone from 36% to 39%- that's nearly 40! And the FVC (which is the less important number, but a number all the same) had gone from 60% to.... wait for it..... 82%!!! That's a 20% increase :D 

So Monday- today. I have been super excited to see Chris, waiting to hear his verdict, trying not to put all my hopes on coming home tomorrow but failing miserably and practically packed before he even came around haha. He came in and said I could go home! I did try and push for coming home this evening sneakily, but he said he'd rather finish the course of the anti-fungal IV, which ends tomorrow and then I can leave. Fair enough. One more sleep. One more sleep. One more sleep. I can manage that. "The Plan", as there always is one, is to go home on some oral anti-fungal meds, continue with the steroids- goodbye summer bod- and come back in 2 and a half weeks to see how I'm getting on. YAY! The best part will be that I will be out for my wonderful husband's birthday, I couldn't let him wake up alone on his birthday after everything that man does for me. I have also completed my walking test and don't need to take oxygen around when I am walking. I am doing a sleeping oxygen test tonight to check to see if I need any at home for sleeping and then I'm all tested out. Woooooooooop :D Andddd I managed to conquer my fear of finger pricking today; probably seems like nothing to some people, but for me it is the icing on the cake for great news and I'm so glad I managed it before I leave. Ahhhh smiles all round today :D 

Thank you to all my family and friends, no matter how close we are, for your continued love, prayers, support and encouragement through this difficult time for me. It really has meant the absolute world and I couldn't have stayed half as cheerful without you all. You guys are all wonderful and I am so lucky to have you in my life. Until next time xo

Monday, 20 June 2016

Small update


I'm still up on MADU- but not for long yay :D Shall get to that... (keep up the suspense, ey).

Not a huge amount to report as still not really any change, but I am feeling over my highs and lows moment :) 

Last Thursday was my lung function, which had re-dropped to 33%. These things happen though. The new physio I am doing (the cough assist) seems to be going well, we are using hypertonic saline with it too. The hypertonic saline is a salty liquid, which draws water into the sputum to help it be less sticky and I should be able to move it easier. 

Friday was a good day for what I call "information gathering". For me, when things seem a bit out of my control, like they are now with not knowing what's going on with my body or why nothing seems to be working and not knowing when it will work, when I will be home etc etc; gathering as much information as possible from the docs, moreover Dr Orchard, helps me regain a feeling of control over the situation. Understanding the facts and figures, the plans in their heads, the results of all the tests, what I can be doing to hep myself and so on. Dr O came up to see me and was firstly apologetic that it had taken him this long to come up. I didn't feel he needed to apologise at all! He's an extremely busy man and seeing me twice a week up here is more than I expect of him; he is just such a kind person. 

So he talked me through, in detail, the results of my CT scan. This was great for me to hear as I haven't seen the CT scan, and even if I did, I doubt I'd know what I'd be looking at haha. He explained that at the top of my lungs there is a huge amount of "plugging". Plugging, is the name they use when the airways are clogged with sputum. Like a plug, they stop things getting through; so air isn't getting to these parts of my lungs, or is very restricted. It is these plugs that we need to get rid of. Chris also said that these won't have just come overnight, they are very likely to have been building for months and months, and now it is just too much and that is why I've had the big drop in lung function. He also said that the bottom of my lungs remind him more of asthmatic patient's lungs. I don't know a huge amount about asthma, but I think these parts are more inflamed. 

So "The Plan" was: to carry on with the IVs I'm on, add in a new inhaler called Spirever, which is another anti-inflammatory and the best part...... come off the IV aminopholin, YAY! This meant I wouldn't be attached to machines 24/7 and I could come back down to the CF unit as soon as they have a bed, hopefully early next week :D As soon as the last bag of IV ami was off I felt brilliant, being able to walk around my room easily without trying to drag a machine around and I could go toilet whenever I wanted to and without unplugging all my cables. Weird things give you a buzz in here lol.

It also meant I could leave the room and ward and get some fresh air. Al took me down in the wheelchair with oxygen and we just sat outside, it was so nice. Chris also said I should try and get out for a bit at the weekend, it would do me the world of good. How could I refuse haha. Especially as it was father's day on the Sunday. Of course, not all plans come together and to cut a long story short, on the Sunday, despite all the planning and reminding to the nurses and on call docs, it didn't go to plan at all and I ended up not getting out :( I was really upset, as you'd imagine, but these things happen I guess. No point dwelling on the negatives. My wonderful parent's brought up the meal we were planning on having and it was beyond delicious! My mama is literally the best cook in the world and she never fails to disappoint :D Bless my angel of a daddy too; once he heard that I wouldn't be coming out for the day he drove all the way here to drop Alex up (Sunday trains were messed up) so we could spend a day together just us two, then drove all the way home just to come up again in the eve. I'm so lucky to have such kind parents <3

I have also been blessed with lovely visits from friends and family. A couple of photos from visits, except the visit from my aunty and cousin where I was asleep the whole visit, whoops! Sorry Linda and Nai xxx

Me, my uncle Phil and cousins Tamsin and Emily

 Me and my friend's wonderful mama Paulina and her partner Clive

Today I have slept of most of the day. I had a trial of another nebuliser Bronchitol, which I used to take a few years ago. The trial didn't go well so we aren't going to use it. The nurse has managed to fix my Power Glide, which was starting to be really painful and the drugs weren't getting through it. I also did my lung function, which has gone back up to 36%. It keeps fluctuating from 33-36, so until it goes up again, I'm, not going to celebrate too hard; but so glad it hasn't gone down. Speaking of going down, I'm going back down to CF unit TOMORROW! :D 

We are still fundraising for my uncle's Great North Run in aid of The CF Trust, if anyone would like to support him and donate, just follow this link :)

Until next time xo

Wednesday, 15 June 2016

Highs and lows

Warning: long post alert!

The last few days have been a rollercoaster of emotions. It's not been fun; I prefer calmness, clarity and some control. Friday morning was when I last posted and was planning to have the new access put in- the Power Glide. The specialist, Andrew, couldn't make it so over the weekend the nurses just used my port and alternated my Aminopholin and other IVs.

Saturday evening I was asked to do a lung function. On this ward they have a different device to the one they have on the CF Unit. We couldn't input my height and weight but went ahead with the tests anyway. In litres it said I was blowing out 1.21, compared to my previous results of 1.07. I work better in percentages, so wasn't really sure what this meant but I went to bed happy, as it sounded as though things were improving; although I didn't want to get my hopes up too much until I'd seen the doctor the next morning.

Sunday came and I saw the doctor who confirmed my lung function had improved, she could only have a guess at a percentage, due to being unable to put in the height and weight, but she estimated 40%. I was ECSTATIC! I couldn't have been more thrilled. I told literally everyone and was on such a high. FINALLY, I was improving. Or so I thought...

That Sunday night I had a really bad sleep, and was very tired Monday. I saw the physio who explained we needed to do another lung function but on their machine this time. Long story short, there hadn't actually been any improvement :( I was beyond devastated. From such a high to be brought crashing back down to earth was tough and made even harder from the lack of sleep. I tried to remain positive though. As it was Monday, I was also due to have the Power Glide put in. This kept my mind occupied as I was nervous about that and could put the lung function result to one side.

I was proud of myself for how I was with the Power Glide. Andrew was amazing; calm, reassuring, patient and answered all my questions. I was lucky to have one of the nurses with me holding my hand and we managed to get it in. Here's hoping that this extra step is what it takes to get better, ey!

The Power Glide- covered as it cringes me out.

So I was back on a high from having that put in; proud of myself and had adrenaline pumping through me. I then saw Dr O. I love that he is honest and doesn't beat around the bush. I asked if he was worried that I wasn't improving and he said "yes". It's all I've been thinking about since then. As ever, he has another plan, but I just can't forget that he said "yes". Now that it's been a few days since that convo, I can see that I have been over thinking it, it's just a word! One simple word. But It really brought me down. He made the decision to change up meds again, to keep them fresh and added in an anti-fungal, just to cover all bases really. He's taken me off IV steroids and back on oral ones on a lower dose and lastly, booked a CT scan to have a better look at my lungs.

The, next thing was seeing the psychologist, who I see twice a week while I'm in: passes the time, it's good to offload and she's helping me with my needle phobia still. She's a lovely lady who I look forward to seeing. I asked if we could just chat as I was still feeling down from seeing Dr O and I just needed to talk things out. She listened, comforted and helped me put plans and techniques in place for if I'm feeling a bit overwhelmed with the emotions. She reassured me that, after 4 and half weeks in hospital, it's normal to have down days! I can't be positive all the time when nothing seems to be going the way I want it to. I'm only human after all.

Monday eve- yes we are still on Monday, corr it was a long day- I was mentally and physically exhausted and more than anything wanted to sleep. However, due to all the change up of meds, the docs wanted me to have them all before bed. It was 2am when they FINALLY finished. I had 4 hours of sleep as the next load were due at 6am. I can't tell you the exhaustion I felt on Tuesday morning. I don't envy mothers of newborns at the moment, let me tell you that! I woke up crying. Now that's not normal for me at all. It's crazy what lack of sleep can do to you. I was ratty with the poor boy who brings breakfast and all the nurses (I felt awful later). I was having my breakfast and the nurse mentioned that I didn't look too good. In my exhausted state I was just thinking, "yeah, thanks for that, you try feeling how I feel at the mo". I was in a foul mood haha. I looked in my little hand mirror and I was like "OMG". My face was unrecognisable.

I was feeling a bit puffy in myself, but just thought it was from crying and being tired, had no idea I looked this bad! There wasn't any time to sort it out right then though as I'd just been called for my CT scan. So they wheeled me round the hosp to the scanner. With a CT scan you need to have a dye called Iodine injected so that they can see a contrast of colours to make out the detailed X-Ray. Luckily, they could use my Power Glide, one less needle to worry about. All went smoothly and got back to the ward. A few minutes later, the docs came round and could obviously see my face- not exactly hard to miss. They instructed the nurses to give me an IV to reduce the water retention that had built up from the steroids and meds. Literally within minutes I was peeing out so much water. This continued every 10 mins or so and even by lunch time my face had gone down so much and I could open my eyes a lot more. I'm on a tablet form of this anti-water-retention drug now for a couple of days just to get me back to a more normal state; keeping an eye on my water intake and outgoings to make sure I don't go too far the other way and end up dehydrated, which could dry up my lungs making it harder for me to shift everything. Ahh never just straight forward at the moment.

Anywho, the CT scan came back just showing typical CF lungs: a lot of stuff that needs to come up but not blood clots, which is good. I kind of wanted them to find something though- anything. An explanation or hint as to why I'm not getting any better.

I had a shower and hair wash, thanks to the wonderful nurses, which helped me feel more human but I was still so, so tired and emotional. Sometimes in hospital you can just rest and rest and rest, but other times it's all go, go, go and you never get a minutes peace. Yesterday was like that. I was so fed up and in a really negative mood; wanting to go home, or even just back downstairs to the CF Unit. Wanting my family; to be able to plan things and look forward to things; to be in my own bed, eat my own food, sit in my own bath, groom dogs, not be connected to a million monitors.... you just take it for granted until you're put in a position of having it all taken away from you. At the same time though, I feel guilty when I have these thoughts. Who am I to complain, when there are people in the world who would give their right arm to be in a hospital like Frimley. Children in war zones, sleeping on the streets, orphans alone and scared. You have to look at things in perspective and be thankful. It could be a million times worse.

It's hard to know how to feel in here at the moment. You can let your thoughts run away with you or you can try to keep them in perspective and in the present. I guess it's good to do a bit of both. Be mindful.

Back to the present, well the past- Tuesday still- I had a good chat with my dad over FaceTime and my lovely friends have been up to visit; although I doubt I have been much fun to be around this week so far haha- totally sorry guys!! I managed to get a GOOD SLEEP last night though- YAAAAAY!!!! And a nap in the morning, so I feel like I have more clarity.

Today (yes I have finally got to today, sorry about the long post) the physios decided I needed a change of treatment, so out has gone The Bird and in has come a machine called the Cough Assist. I guess it does what it says on the tin. Fingers crossed it is super beneficial.

Presently, they are having trouble getting bloods from my Power Glide, but I am consciously not over thinking it. I don't want to get all anxious and down again. What will be will be. Worrying now is not going to solve it. I'm looking forward to seeing Alex and my family this eve and hoping for another good night's sleep before redoing my lung function tomorrow. I'm trying not to get my hopes up too much, trying to remember a hilarious scene from one of my favourite TV shows, "My Family", where Ben is saying not to have any expectations in life so that you don't get let down. I know it's over dramatic, but it makes me laugh and I'd rather be laughing than crying!

Until next time xo

Friday, 10 June 2016

What a day

Corr, reading over last week's blog, that weekend out seems so long ago now. So where were we... the docs had changed my meds up again and reduced steroids and halved my nebs. There were no improvements from this, in fact my lung function and infection levels were getting worse, so on Tuesday Dr Orchard came up with another plan (love a man with a plan!), which was to up the steroids again but do them through IVs instead so they are going directly into my bloodstream as opposed to through my stomach. This way would be faster acting and more effective. He wanted to trial this for just 48 hours and if there wasn't any improvement on Thursday, the next step was Aminopholin through IV. Again, I was on this orally at the time. If it came to this though, I'd need to move wards.

Thursday came around, which is probably the day that is least fun on the ward. They do the fire alarm testing at 8am for an hour, which is fine as I'm usually up around 8/8.30 but the noise is so piercing and just goes straight through you lol. For an hour. Then bloods, eww. After that though it picks up as the lovely aromatherapy lady comes round and gives a massage- highlight of the week woo :D I was super confident that my lung function had come up; I felt good, I could breathe, I was in a positive mindset.... So I asked to do it and couldn't believe it had gone down! 33%, lower than when I came in :( I was obviously disappointed, but I was OK and knew a plan was already in place for this circumstance. So I went back to my room and saw the doc who confirmed I was moving wards to start Ami IV. Packed and waiting to go, my daddy turned up just in time to come with me :) I must say, for me at least, I was very relaxed about the whole thing haha.

The ward is a high dependancy unit, which sounds scarier than it is. It's just that on the Ami IV I need to have my heart rate monitored continuously as the drug can make it go really high. Hopefully though, this will open up all the little airways in my lungs so that the other medicines I am doing can reach those areas to clear the infection.

It was all going so well until they told me I needed another access done. I have my port in my chest, which is where my IVs go through, but as the Ami is supposed to be going 24/7, I needed another tube in somewhere. Over the years I've had psychological help getting over my needle phobia and have coping strategies to help me get through blood tests, port access', blood sugars, insulin pens etc. But for some reason this really freaked me out. Reflecting on it this morning, I think all the day's events had caught up with me: the disappointment of the last 6 weeks of meds having no effect on my health; my lung function dropping still; moving from a ward where I felt comfortable and knew everyone to a ward I'd never been to and didn't know anyone or what to expect; then being told I needed another access done- a cannula at that, which are notoriously unreliable lol. So I'd say out of 10, my anxiety was like about a 5. The nurse asked if I'd like to try something for the anxiety; I said yes and she gave me a diazepam. I've had it once before when I was much younger. It's a pretty regular anti-anxiety to give someone.

Then she came back to do the cannula and I just lost it: crying, panicking, refused the cannula. The lovely nurse said that was fine and we managed to just alternate my meds through the port. It would have been fine if it had all stopped there but it was like I had opened a floodgate! I couldn't stop crying, literally for about 3 hours. Alex and mum were up at 7.30ish and I was just beside myself, I still don't really know why. If you'd seen me, you wouldn't have recognised me. It's embarrassing looking back on it now lol. I was angry, scared, shaking, bawling, couldn't catch my breath, hot and cold, confused, irritable... just a mess! Poor mum and Al for having to be with me during it, it can't have been nice for them but they were so, so, so helpful and didn't give up trying to calm me down. They were absolute angels, as ever <3 By 9.30pm I was exhausted and was regaining control of my breathing and the panic/anxiety/not sure what to call it! They left me with the wonderful nurses up here who checked on me at least every half hour at first and then every 2 hours during the night for obs and ECGs.

I can't, of course, be sure but I do think the "attack" was due to the diazepam. It's supposed to be anti-anxiety but I feel it did the opposite for me. I read the side effects and it is possible. Plus the last time I had it when I was younger, I remember having a similar experience. So I don't ever want to take it again, it's just not for me.

This morning the nurse said that during the night all of a sudden my obs improved loads- eeeekkkkk :D my heart rate went down, my O2 was 97%. Not sure if it's still like this now but it's a bit of hope that this med might actually make a difference.

I still have to have another access done, but I'm having some tube that I can't remember the name of, put in by a specialist. The plan was to have that done yesterday, but he was away so that's why the cannula was going to be done. Fingers crossed for a smooth and pain free day.

Until next time xo

Thursday, 2 June 2016


Coming up to 3 weeks in, so thought I'd better do an update for my family. As well as my bad chest I've lost my voice for about a month now so it's had to call up all my aunties and uncles and cousins to tell them how I am, so writing this blog and sending it to them is easier for me at the mo.

Sooooo, last blog I was looking forward to coming out for the weekend to spend time with my family. It was such a lovely weekend! I used a wheelchair and oxygen for the Saturday, but the Sunday was more chilled and I didn't need to use them. I think I overdid it on the Saturday lol, I got too excited and carried away and by the end of the day I was absolutely shattered! All my cousins from my dad's side and their other halves and my cousin Jess from my mum's side were over and we went to the park to watch my brother play cricket then played some games at home and got a takeaway. The Sunday I slept for most the day in the hosp and then in the eve we all went to my cousin's house for a BBQ. Was such a perfect weekend being with my family and my Alex and saw my pets too <3

Me, Jess and Al

Jess doing my hair

The most beautiful garden ever!

Me, Emily and Abi splitting lol

Timmy and his girlfriend Emma

 Me and Emmie

My Barney bear

It was bank holiday last weekend so didn't see a doc until Tues where it was decided that as there still wasn't any change in lung function or CRP or anything, I needed another change up of meds. I'm now back on Tobramycin, Aztreonam, a new one that I haven't had before bringing with "T", a nasal spray to see if that helps with anything, salbutamol nebs 4 times a day, half the DNAse to 2.5mg 2 times a day and they have reduced my steroids. Quite a lot of changes so fingers crossed this does the trick now! :D

As I am still not at all anywhere near my best, I have decided not to risk going to Ladies Day. The weekend, as great as it was, was such a struggle at times it would only be harder at Ladies Day. I was obviously disappointed seeing as I'd started meds about 5 weeks ago now in order to be in tip top condition for the event, but c'est la vie! There's always next year.

The hardest part of being in hosp for me is being away from my family and husband. Alex is the most amazing, supportive, most caring person and without him I would be so down in the dumps. We do everything together and while I'm not around he is having to do all the housework, look after the animals, all my washing and bringing me bits up, visiting me every day.... It's even harder at the moment as he had to give up his license for a year due to his epilepsy, so he can't just pop to the shops for food shopping or go meet his friends or drive up to see me; everything is such a palaver and I don't know how he's stayed so patient lol! Hopefully he will be getting his licence back in July, so that will make our lives SOOOO much easier! He's my absolute angel, my rock, my world, my everything... all those words used to describe the one you love! I couldn't be without him <3

Poor Al got soaked coming up to see me! 

Hopefully next post will be about me going home!! Until next time xo