Guardian Angels

Although I may not see you anymore
I cant share any more smiles
or more times of fun.

I will always remember that
when life seems to get hard again
that you all battled until the very end.

If things happen that seem hard
I'll remember what you guys went through
and never give up
as it was never as hard as that.

So if things seem to be hard
And I'm struggling to cope
I know i have twelve very special
guardian angels looking down on me
wishing me to cope.

So even when I want to give in
I will always remember you guys
and never give up.

I will achieve my dreams
not just for me but for you guys to
as you could never fulfill all of yours.

At least I know where you are
and that your together
having a laugh that you could
never really share before.

I will never forget you guys
your memories will always
live on within me.

A musing and other things

How quickly you can get used to something different! After living alone for 3years and spending the majority of my evenings alone, at first it was weird having D around every evening when we moved into together 8months ago. Now when he is missing for an evening I feel abit lost and don't know what to do with an evening by myself. I always thought I would be greatful for an evening alone but it appears that is not the case. I miss having him in the house, even if we are not in the same room its the knowledge he is there if I wanted to have a random chat. Is this a sign of dependence on him or just a sign that I've turned into an old married woman who craves routine rather than the abnormal?? Who knows.

August has been a bit of a busy month in some ways, it certainly feels like lots has been going on anyway! Lots of wedding preparations have been done, with things marked off the to do list we created. Birthdays have been celebrated, including seeing my grandma turn 85. She is a very special lady to me and this year has been abit of a tough year with her health, with lots of ongoing tests to try and work out what is going on and if anything can be done or if its just the effects of old age. My biggest worry is that she wont be well enough to travel for my wedding, but I know by hook or by crook she will be there if she is capable.

Things to look forward to:
Celebrating A turning 4 with a party and watching his face (hopefully) beam in delight at the presents we have got him. I can't wait to see him celebrate his birthday!

It is also my birthday this year, but so far I'm not really feeling it and could quite happily let it go by. All I have asked is that I get to spend the day with D & A but otherwise I couldnt care less what I do or anything else. D has said he will take me for a birthday meal though to one of my favourite resturants which I haven't visited for awhile, so thats kind of exciting.

I also have a dress fitting coming up for getting it altered so it is the correct length and need to have my wedding shoes and underwear with me for the fitting, so thats quite exciting!

September is full of lots of exciting things which I will blog about as they happen

May-July

So its been awhile! I had a great period of health and managed two whole months before I needed to go back on IVs, however when I did need to go back on them it was felt a weeks stay in hospital would be beneficial boo!

I've been on holiday to Hafan Y Mor, Pwellheli with D and A in a caravan. It was a great week and I took over 300 photos from it. We had lots of fun doing different things during the day and meeting up with D's family in the evening for an hour or so in the club so A could meet the characters (I think his favourite may have been Rory the Tiger but he seemed to enjoy a cuddle with Anxious the Elephant too).

Plans have been afoot for the wedding and we are now down to the final things that need to be sorted, organised or bought ready for October.

At the end of July I made the very hard decision to step down as Beaver Scout Leader from my beaver group to enable concentration on my health for awhile and to ensure I am in tip top condition for the wedding. I am sure I will return to scouting but for now I am having a couple of months out.

I have started on a new nebuliser antibiotic which is 3 times a day, it is done a month on a month off. On the month off I will be started on the TOBI podhaler, which is meant to be better than the bramitob nebuliser. Both of these things and a set of IVs that have been prebooked for the start of September as a precautionary thing are all to enable to enjoy my wedding to the best that I can and not be too poorly or tired on the day.


Birthdays have been celebrated and time has been enjoyed with A and D at home doing general stuff like trips to the park, time in the garden ( A is currently loving helping D water the plants in the garden and generally help in a big boy way) and playing with play-dough.

This coming month we have more birthdays to celebrate, a trip to the cinema to see Smurfs 2 and a free breakfast at the local beefeater that was won in a raffle.

2013 is whooping my ass

2013 is so far turning out to be a tough year.

3weeks of January was spent in hospital fighting off an infection and sorting out a collapsed lung.

I managed 2 weeks at home, where I then ended up going back on home IVs. Towards the end of the home IVs I started to feel unwell again and ended up going into hospital and having another 2weeks of IVs-so four weeks in total.

I have once again managed another 2weeks at home, during which time I have picked up a chesty cough virus thing and coughed up some blood which means tomorrow I will be starting yet another 2 week course of IVs, at home.

So far this year I have spent 7 of the 13 weeks on IVs, after the next 2 weeks it will be 9weeks out of 15 on them. I do not like these statistics. I don't remember the last time my IV time outweighed my non IV time in a year.

Changes are once again being made to my medication routine to try and get me past 2weeks before needing IVs.

Day 13

Have you ever had your heart broken? Have you ever broken a heart?

My heart has been broken when friends have died. I have been upset when I have split up from previous relationships but I don't think they have ever left me heartbroken.

To my knowledge I have never broken anyone elses heart.

Day 12

If you could wish for anything that would come true, what would you wish for?

I would wish that D got to have full custody of A, so that they were both happy all of the time. D is an amazing father and deserves to spend more time with his son than he is currently allowed.

Day 11

Who can’t you live without?

 I can't live without my mum. She is my constant, my rock. She is always there to support me no matter what. Even if its something stupid I have done she will always be there to help in anyway she can. I don't how I will cope when my mum is no longer around to talk to and turn to. We speak almost every day in some format whether it be by call, text, fb or in person.

Day 10

A dream for the future

A dream for the future, hmmmm I dream of having my own children with my fiance and owning our own house. The achievable part of this dream is having our own house that we can do what ever we like to it without having to worry about what the letting agency will say about it!

I dream that my life will be full of happiness and laughter and filled with people I love around me every day.

Day 9

Hopes, dreams and plans for the next 365 days

Wow, hopes, dreams and plans for the next 365 days!

Well some of the plans in place for the next 365 days already are:
Family holiday with the soon to be inlaws
My wedding to my wonderful fiance
A honeymoon
Celebrate birthdays and christmas :)
Complete a birth sampler for my goddaughter and my soon to be born nephew

My hopes for the next 365 days:
To get off night feeds within the next 2 months
To remain as healthy as possible to enjoy life
To get the house decorated in the little ways to make it more homely

I dont really have any dreams for the next 365 days at the minute, still living in the here and now after the huge reality check of last month.

Day 8

What’s in my handbag/purse

In my handbag there is:
My purse
A creon pot
An inhaler
Packet of sweets
A whole heap of insulin needles
A load of receipts
A pen

I think thats it, its bascially full of some rubbish half the time and when I go out it has more stuff in it as well but that is what is currently in my handbag!

Day 7

My worst habit

This is probably biting my nails.

It's a habit I have never really been able to break, I've even tried using that nail stuff that is meant to taste horrible to put you off biting them- didn't work.

I can't think of anything else, I am sure I have many habits that other people could see as my "worst" but this to me is mine.

Day 6

A song that makes you cry (or nearly)



It was played at my 11year old friends memorial service. 11 is too young to die, she had CF too. I was 17 and ever since I can't listen to this song without crying

Day 5

Your dream house

My dream house, hmmm the only thing I know about my dream house is that it will contain a room that is floor to ceiling covered in bookshelves filled with books. With just a comfy chair in the middle of the room, with a small table next to it with a lamp on it. So I can walk in pick up a book and curl up in the chair and be in my own world without any other interruptions.

The other thing my dream house will contain is a bay window with a seat, so I can sit in the window and watch the world go by and read a book in the window too!

I guess the final thing that would make my dream house complete for me is the permanent additions of D & A.

Day 4

Something you are OCD about

This is quite weird but if there is more than 1 light switch that operates a light they must be in the correct position. So if the light has been turned on by one of the switches, and off by the other. They aren't in the correct position relating to whether the light is on or off, so I have to go correct them.

Yes ok its weird but its something that really gets to me, especially if they have been wired up wrong and they cant be corrected so one of them is always out of the correct position argh!

Day 3

A photo taken over 10 years ago of you

So this was me when I was obviously alot younger, I got glasses when I was 10, so this photo predates that. I would imagine I was about 5 or 6 in this photo based on the trampoline that I am on.

Day 2

20 of my favorite things

Ok, so 20 of my favourite things, this is going to be a little bit trickier than one would imagine (i'm not sure if I can come up with 20!)

1. My fiance. Time with him is always one of my favourite things.
2. The mini-me. Time with the mini-me is also one of my favourite ways to pass my time
3. My crock-pot. I got it for christmas and I love it! Definitely makes cooking easier, plus you get to smell the deliciousness of your food cooking all day long. Can't believe I've lived so long without one.
4. My kindle. Loads of books with me wherever I go without needing a suitcase to carry them all, of course this is going to make my top 20!
5. Jigsaw puzzles. Another favourite way to pass the time
6. My family. Enough said.
7. My god-daughter
8. The big bang theory. Ok I know this is a tv show but this is one of my favourite TV programmes to watch and always makes me smile when I see it and even sometimes laugh out loud
9. Goodnight Mister Tom by Michelle Magorian one of my favourite books
10. Jodi Picoult. One of my favourite authors. I own all of her books either in physical copy or on my kindle (and in the case of quite a few of them physical copy and on my kindle)
11. Pic'n'mix. My current favourite sweets! This year alone I have already had 4 pic'n'mixes, normally I have about that many in the entire year.
12. Cuddles
13. Taking photos.
14. The internet. It allows me to talk to family and friends who don't live close enough to just pop round for a cup of tea.
15. Beavers
16. Ducks. Rubber ducks in particular
17. Borrowing my fiances hoodies. They are so comfy and warm!
18.  Julie Walters. Fast becoming one of my favourite actresses to watch.
19. Sarah Millican. Easily my favourite comedienne.
20. The Sound of Music. A childhood favourite that I can still watch at anytime now and sing along to all the songs!

Hurrah! I made it to 20 favourite things, it was a tad tricky but I made it!

Day 1

A photo that makes you happy

this photo makes me happy, I made it my computer background when I was in hospital and the cheeky grin on A's face kept me going plus it was a reminder of all that I have to fight for and stay well for. So this photo always puts a smile on my face whenever I see it, plus I got D in a christmas jumper which always makes me smile! :D

30 day blog challenge

So I have decided to start a 30 day blog challenge, anyone interested in joining me in it???? I figured seeing as I still have 5 weeks of rest in front of me I might as well find something to do that fills my time in whilst sat browsing the internet instead of pressing the refresh button every 30 seconds on facebook! So below is the challenge and today shall be day 1( will post it in a seperate post).

•  Day 1    A photo that makes you happy
• Day 2    20 of my favorite things
• Day 3    A photo taken over 10 years ago of you
• Day 4    Something you are OCD about
• Day 5    Your dream house
• Day 6    A song that makes you cry (or nearly)
• Day 7    My worst habit
• Day 8    What’s in my handbag/purse
• Day 9    Hopes, dreams and plans for the next 365 days
• Day 10  A dream for the future
• Day 11  Who can’t you live without?
• Day 12  If you could wish for anything that would come true, what would you wish for?
• Day 13  Have you ever had your heart broken? Have you ever broken a heart?
• Day 14  What do you like most about yourself?
• Day 15  What do you dislike most about yourself?
• Day 16  What do people notice about you?
• Day 17  What’s something you wish you could say to someone?
• Day 18  Whom do you admire the most?
• Day 19  What is your goal in life?
• Day 20  What are the 10 most significant events in your life?
• Day 21  If you died tomorrow, what’s one thing you’d regret not doing?
• Day 22  What’s an inside joke you have with someone?
• Day 23  Two months ago, where were you and what were you doing?
• Day 24  Do you have saved text messages?  If so, who are they from and why do you still have them?
• Day 25  Write 5 messages to 5 different people without using names.
• Day 26  What’s something you’re really excited for?
• Day 27  What do you feel guilty for doing?
• Day 28  Tattoos.  If you have one, post it and its story.  If not, what do you want?
• Day 29  Picture of your makeup collection
• Day 30  When were the happiest days of your life?

A day in the life of.....

....someone with CF!

Yep I'm currently on a CF obsession, its taking a while to readjust to what a normal life is going to be now. So I decided to do a little blog outlining my day, with a few photos of illustration as well hopefully.

The routine written down:

So 5days a week I am woken up by the alarm on my night time feed pump going off saying it has finished, so the first job of the morning is to then flush my ng tube with at least 50ml of water, sometimes 100ml depending on what my fluid intake had been the day before (if it was poor then this is a good way to get fluids in without alot of effort!). After the flush I then remove the ng tube, which is about as icky and pleasant as it sounds really, pulling the tape off my cheek and then pulling the tube back up from my stomach, through my throat and back out of my nose!

Then I have been doing my morning nebulisers:

Dnase using the pari turbo boy (takes 20mins), followed by
Hypertonic saline using the pari turbo boy (20mins), followed by

A brief break to do physio using the incentive spirometer. Due to the recent pneumothorax I am not allowed to use any kind of physio technique that puts positive pressure on my lungs for at least 6 weeks, which basically means I can't do any of my normal physio that I would. So I was given this device instead, which basically the aim is to keep the yellow ball in the smiley face area whilst taking a deep breath in (negative pressure in the lungs apparently), allowing air to get behind the mucus to make it a little easier to bring up. Both of the nebs done before hand are designed to do things like thin and make mucus looser to make it easier to bring up during physio (joyful!). This takes about 10mins.

Then it is onto the third and final nebuliser of the morning:
Tobi via eflow (5mins, this is an antibiotic to keep the infection that I permanently have dampened down so it doesnt cause any unnecessary problems).

Then it is time to get up! Yes I could do all of these after I have got up but quite frankly I'm feeling lazy at the minute and it's nice to have an excuse to stay in the warmth of my bed a little bit longer.

This takes me to about 9am roughly. The next job of the day- washing out the syringe that is used for doing the flushes with the night feed (you get 2 a week on the nhs at home, so they have to be washed out and reused!, in hospital they just use fresh ones every day morning and night) and cleaning the nebuliser mouthpieces (boiling water on them, preferably once a day but I've slipped out of that habit they should also be sterilised, which is why I have a baby bottle steam steriliser in my kitchen). This is also a good excuse to make the first cup of tea of the day! Then its time to take the breakfast medications and check my morning blood sugar levels:

Azithromycin (1), Ursodeoxycholic Acid (4), Acetylcysteine (1), Vitamin E (4), Multivitamins (4), Domperidone (1), Slow release sodium chloride (2), Strawberry fortisip (1or2 depending on how full I feel after the night feed), Novarapid insulin, Creon (Variable depending on what I have to eat at this point).

So thats all predominantly tablets (amounts in brackets) except for the fortisip which is a special drink packed full of calories to help me gain weight and the insulin obviously which is an injection!

Morning time meds and nebs:

*sigh of relief* its a break time from medications!! That is until about mid morning where I have been instructed I should be having a small snack of some kind, which then means more creon and more insulin depending on what I eat.

Then lunchtime! This involves the following:

Check blood sugars
Fortisip (1)
Creon
Novarapid insulin
Domperidone (1)
Acetylcysteine (1)

Again middle of the afternoon is more medication type stuff. I should ideally be fitting in another form of physio here, maybe another 10min incentive spirometer session or depending on tiredness levels 10mins on the wii doing something active like wii fit or one of the dance games (Excercise is just as important if not more so in a person with cf, it just then means I need to find even more calories to cover those I have burnt doing excercise!), another snack so more creon and more insulin.

Evening meal time, you've guessed it more tablets!

Check blood sugars
Creon
Novarapid insulin
Acetylcysteine (1)
Ursodeoxycholic Acid (4)

Then it gets to evening time, that traditional time where you get to relax and unwind for the day before you melt into sleep, well before I can do that its time to repeat some of that routine again:

Dnase (20mins)
Hypertonic Saline (20mins)
Physio (10mins)
Tobi (5mins)

Then it is decision time, do I want to eat anything else before I go to bed as it is now about 8-8.30pm and now is the time to do it before I pass my ng tube. As alot of foods are damn near impossible to eat with the tube in as they get stuck on the tube pulling it further down your throat than it should be which is not pleasant and makes you feel like you are choking as the food has got stuck. Ok, so no food, now its time to pass the ng tube.

So this means I need to get to my chest of meds and get everything out ready in one go (might as well saves time than making two trips)
Bag of feed
Giving set
Ng tube
micropore tape and hypafix dressing
Ph strips
Tissues
Also need to gather from the kitchen: jug of water, syringe and glass of water with straw

Right were set, so now its time to pass the ng tube. First things first measure the tube by putting the tip in your mouth and hooking the tube over your ear and pulling it taut down your chest, feel just below where the bottom of your rib cage is and hold that part of the tube, let go of it from your mouth and 1 handedly get some micropore tape and wrap it round the tube where you measured (this is the point where your stomach is so you know how much of the tube has to go in your body), now you are readt to pass it. Which is pushing it up your nose, making sure you angle it when you feel something poking at the top (makes you cry if you keep doing it to hard), so it goes over the bridge of the nose and starts to go down the back of your throat. Remember to multi task here as it starts to go down your throat also start swallowing, when you can feel the tip at the back of your throat, now is the time to start drinking the glass of water. It stops your gag reflex kicking in and helps pull the tube down into your stomach, so whilst drinking dont forget to keep pushing the tube up your nose, otherwise you run out of drink before all of the tube is in. Stop when the tape has reached the bottom of your nose, get a second piece of tape and secure it across the marker, then a third larger piece which secures the tube across your cheek. The tube then sits nicely tucked behind your ear so it isn't dangling pulling on the tape you have just stuck on your cheek. Lucky person that I am is actually allergic to the micropore tape they use as standard for this so have to cut up some hypafix dressing to the correct size and use that instead! Its not fun trying to piggle the backing of that dressing on a piece thats 3cm squares wide and 4cm squares long (if that)! So the tube is in now its time for the next step, connecting the empty syringe and pulling back some stomach contents (yum) to test the acidity on a pH strip. Anything 5.5 below tells you that you have successfully placed the tube in your stomach and not in your lungs (which can happen if you don't swallow early enough at the point where you feel the tip of the tube in your throat). You then need to put at least 50ml of water down the tube (assuming you have correctly placed the tube). All of this process takes about 10-15mins.

Night feed all set up ready to go:

so this now takes me to about 9pm in the evening. The next decision of the day- what time do I want to be woken up in the morning. The night feed takes 10hours to go through, so whenever it is started you will get woken up 10hours later like an alarm clock. I try and start the feed at about 9.45-10pm, so I am waking as near to 8pm as possible. So this gives me about half an hour to just chill and maybe get some cuddles in with the fiance and maybe go and have another cup of tea. About 9.45pm the next very important step is a bathroom stop as the pump stand isnt particularly portable making it difficult (not impossible just more difficult) to visit the bathroom in the night and then time to set the feed up and get it going. So hang bag of feed on top of stand, attach giving set, turn pump on, prime the giving set so the feed is at the end of line and I'm not pumping air into my stomach, draw up another 50mls of water in the syringe and put that down the line, in case there is anything blocking the end, attach giving set to tube and press the start button, bobs your uncle were away. I'm now in bed connected to a 1000ml bag of liquid which will give me 1500calories and various other important nutrients over night. Then I need to remember to take the following or be screwed the following day:
Creon (8)
Domperidone (2)
Levemir insulin
Insulatard insulin

If I don't take these, then my blood sugars will run high all of the next day, giving me even less energy and less of an appetite than normal, it will also mean my body won't have really digested those 1500 calories properly and all that can be said about that is imagine your bathroom visits after getting steaming drunk followed by a kebab and curry (not pleasant and can even be known to evacuate an entire household because of the smell).

Its 10pm and its finally time to try and get some good sleep in, whilst making sure I don't lay on the giving set connected to the tube because then the pump will alarm at you because it can't flow properly and is blocked. Which means stopping and starting the machine (30second job but highly irritating to the person trying to sleep next to you) or trying not to roll over to many times and getting caught up in the tube so you get stuck (yes its possible as I managed it last night and had to wake D for him to untangle me so I could move my arms again).

Connected to the night feed whilst I was in hospital:

So inbetween all of that I get to do everything else a person needs to do in a day and if there is anything in particular I need to do in an evening for example beavers or getting invited out somewhere, well the entire thing needs navigating and organising and on those days when I need to be out the door up, dressed, fed and medicated by 9am? Well that will now involving going to bed really early so that the pump will alarm at 6.30am to give me a chance of being out the door when I am meant to be.

Yet despite all of this, I still remain positive and smiling because I get to share it all with someone amazing, who will hold me close whilst doing treatments and is even helping me out with some of them and most importantly of all is making me laugh and brightening up my day at every turn :)
A weeks supply of tablets all ready to go:

To end, my months supply of medication (minus ones which belong in the fridge!):

Feeling blessed and lucky

These last three weeks have been hard. There is nothing that can deny that these last 3 weeks have been the poorliest I ever remember being and having to face up to, as an adult I was expected to cope with everything they told me without asking them to wait for my mum to be there, especially when I was potentially having a chest drain fitted. Every other major procedure I have had in my life (anything which involves anaesthia and being cut open to me is a major procedure, especially when they can occur life threating complications if anything goes wrong) my mum has been there to go down with me and leave me at the doors of the theater, not this time though. I was doing it alone. Sure my parents visited everyday and my fiance visited every other day but rarely were they there when the doctors were telling me these things. So yes a pretty scary 3 weeks (especially when you are then stupid enough to google all the proper medical terms once you get home!).

So why do I feel so blessed and lucky? because my fiance is still there by my side. If I was finding it pretty scary at times then I have no idea how he must of been feeling. Talk about a baptism of fire into what the true reality of living with someone with cystic fibrosis can be like. Sure he knows I have tablets and nebulisers at home and has seen me coughing my guts up. However he has only ever experienced one set of IVs before and they were done at home and I wasn't anywhere near as bas as I was this time.

I just feel so lucky that I have found someone who can see through all of the medical things that need to be done and still wants to be with me. Who is happy to spent nights curled up on the sofa or in bed watching a DVD because I'm just too damn tired to be doing anything else. Someone who is happy to walk in the door after working 8.5hours and tell me to sit down whilst he does jobs round the house, jobs that I should be capable of doing but currently not. It is so frustrating currently not being able to do much of anything for a number of reasons, a) because I have been told to rest for 6 weeks with no strenuous activity (who knew this included hoovering!) and b) because my body is physically stopping me from doing too much as it starts complaining in pain. I just about managed the drive home from my parents house (40mins) but halfway through my chest started to hurt and all I was capable of doing when I did get in was sit on the sofa for an hour before the pain went away.

I'm pretty certain I don't deserve someone as loving and kind as D in my life and I can only hope he truly knows just how much he means to me and how much I love him and would do anything I could for him.So for as long as he is part of my life and his wonderful, cheeky, smily mini-me (who I have missed so much in the last 3 weeks its been unreal) I will always continue to feel blessed and lucky no matter what ever else life has to throw at me. As with D & A by my side, I know I can get through anything.

Hospital stay

So on the 5th January I moved house and felt like utter rubbish. That weekend I was extremely unhelpful in the unpacking of boxes, as it was a case of unpack half a box, occasionally a full box and then go sit on the sofa for 2hours and sleep. I was throwing up pretty much everything I consumed within half an hour of consuming it due to coughing so much. I knew I had got run down and needed IVs but had held off because of moving house. I knew I needed complete rest, so on Monday the 7th I rang the hospital up and asked for a bed on the ward for 2weeks to have my IVs in hospital instead of at home to ensure a complete rest. It wasn't an ideal situation with just moving house but I knew at the same time it was what I needed. I got told there was 1 other patient on the waiting list for a bed but they may be able to get me onto a ward the next day. As it turned out the bed didn't become available until mid wednesday afternoon, but I have known alot longer waits especially at this time of year so it was ok. The tuesday night, D took me shopping in morrisons, which required being pushed round in a wheelchair as I didn't have the energy or ability to get round morrisons without causing a massive coughing fit and throwing up again. We picked up a few snacks for me to take into hospital with me, and a few easy meal options for him whilst I was in hospital because he would be busy juggling work, A, unpacking and sorting the new home and visiting me in hospital an hour and a half away.

Wednesday we arrived at the hospital just after half 5 where I was shown to my room and David went and fetched all my bags in (I wasn't 100% sure the room would be ready and I knew the space I would be shown to sit in if it wasn't is really small and there wouldn't of been room for my bags!). So after the filling in of the various standard hospital admission forms my obs (observations- temperature, blood pressure, oxygen saturations, the amount of oxygen being pumped around your body, heart rate and respiration rate, the amount of times you take a breath in a minute) and they were pretty bad. My heart rate was sitting at about 120 and I had been sat down for over half an hour at this point, so could be classed as resting, my resp rate was in the 40s I believe, blood pressure was ok and my sats were at 94%. Now this last bit was the one that worried me as normally no matter how poorly I feel they sit at a very healthy 98-99% even on exercise, anything below 92% is classed as concerning. So they suggested I do a ventolin neb, see if that helped improve things at all if not they might like to put me on oxygen for abit. So I duely did a ventolin neb and another half an hour later they rechecked my obs, they hadn't improved, so they made the decision to put me on 2litres of o2 for awhile. It was at this point I started to think, ok maybe a tiny bit poorlier than anticipated but a quick blast of oxygen and I will be good. D also had to go home at that point, as it was getting late and he still had an hour and a half drive home, I told him I would text him and keep him updated.

My port got needled by a nurse who came onto the night shift at about 9pm, which turned out to be a very good thing as they then put me on IV fluids to try and help reduce the heartrate and everything. They also got my IV antibiotics started that evening, which was a bonus as I wasnt expecting to start them until thursday am when my actual team were at work. It turns out I was in for a very long night wednesday and managed to cause such great concern among the nursing staff that the critical care team were alerted of my status incase I needed to be moved to their ward (I remained on their radar until friday when I started to stable satisfactorily enough for them to leave me alone). I was on hourly obs, but I still managed to sleep pretty well through having a blood pressure cuff being put on and removed so often. I was spiking a temp and my sats dipped down to 89% despite being on the oxygen and IV fluids, so the oxygen was bumped upto 4litres. The other things I was aware of that night was an on call doctor coming in saying they needed to do a blood gas if that was ok (I was extremely sleepy and not really with it at this point so just agreed, vaguely somewhere in the back of my mind going NOOOOO they are meant to be really painful), however I didnt find the initial pain any worse than a normal blood test (A blood gas is taken from the artery rather than a vein and from on the inside of your wrist), but noticed the pain lingered for a little bit longer than normal after the needle was removed. Then sometime after that a portable xray machine appeared in my room and they wanted to take a chest xray whilst I was sat in bed. Ok fine, so they did that and then I was pretty much left alone again.

Thursday morning turns up and I was awake ridiculously early because of all the noise and kerfuffle that occurs on a ward. My consultant turned up at about 9.30am and asked how I was doing, I said I was alright (says the girl on 4l of oxygen and needing IVs) and they replied it seems like you caused some problems in the night. I said it didnt bother me I was just trying to sleep!! They also prescribed 24hrs of IV fluids as I was clearly in a state of severe sepsis and needed all the help I could need to get rehydrated and stop my body poisoning itsself. At about half past 10 my lovely physio turned up and boy do people know how to make you feel even worse. Everyone who saw me on thursday delighted in telling me just how rough I looked! We started trying to work out what was the best physio techniques for me to currently do based on my propensity of throwing up. I got to use an ultrasonic neb and then have a go on a machine called the 'bird' which connects to oxygen on the wall and uses positive pressure and kind of takes over your breathing and forces your lungs open wider than you could manage. Then the doctor appeared! Who told me that my xray in the night showed a pneumothorax in my right lung and it may need a drain inserting to fix (a pneumothorax is a collapsed lung, and a drain put in can release the trapped air and allow the lung to reinflate), however he hadn't actually looked at the xray himself yet so was going to do that now. On examination of the xray there was a pneumothorax but they wanted to do another xray before they decided on what plan of action to do as it was quite small. So I got taken to xray at about 3pm and this xray showed that the pneumothorax was larger again, but overall when looking at the size of my lungs it was still a relatively small one. This is where I was awkward because it was right at the top of my lung right behind where my port-a-cath sits and I hadn't presented with any of the typical symptoms of a collapsed lung (sudden sharp stabbing pain, sudden breathlessness even on resting). This may have been because I had been feeling so crud for so long that my body had naturally started to adapt itsself, to be able to still do things, albeit it at a slower pace so I didn't get breathless. I'm also pretty certain it was thursday night that the portable xray machine got brought into my room for my 3rd xray within 24hours. Thursday I also got placed placed onto high flow oxygen as some research had shown this could help reinflate the lung without having to insert a drain.

Friday morning another xray was taken and there was no difference in the size of the collapse so I was taken off the high flow, as this can cause dehydration (remember I am still trying to get myself out of severe sepsis at this point due to dehydration), and instead put on humidified 28% oxygen which is 5l, as the ordinary unhumidified oxygen can dry out the nasal passages and cause problems of its own when you are on 4l.

Friday afternoon the decision was made to have a drain fitted under xray guidance to get the collapse fixed. D was with me at this point and I may have had a little cry but agreed to it as the doctors were saying it was in my best interests. I ended up going down to radiology at about 6.30pm when it was the on call doctors available only. D left to go home at the same time as he couldnt come with me, and I knew after it was done I would only want to be left alone to rest and sleep but promised him I would call as soon as I was back on the ward. So after half an hour in radiology of the on call radiologists trying to work out which place was the best place to enter to insert the drain, using both ultrasound and xray images, they decided that the risks of inserting the drain outweighed the benefits I would get from it and refused to do it. They were really sad and apologetic that they couldn't help make me feel better but there own words were "it is too close to important blood vessels, your port and nerves that if we accidentally catch could paralyse your arm so I dont feel confident enough to attempt it", I was pretty happy to be left alone! So one of the radiologists took me back to the ward (he wouldn't let a porter take me) to explain to the nurses on the ward what had happened whilst I was in radiology.

Friday I also saw my dietician and discovered that in the last 3weeks I had managed to lose 11% of my body fat (not good in a person with cf), which equated to a whole stone! She was extremely concerned and floated the idea of starting overnight feeds using an ng tube to help get more calories in and regain the weight and maintain it, as it would also be full of protein which my body also needed to repair the damage. The rest of the team all agreed this was a good idea but I was still coughing too much for that to start until after the weekend as I would of just brought the tube straight back up again (not a pleasant thought).

Saturday I got to take another daily trip to xray. By this point I hadn't had a shower since wednesday morning and was actually starting to care, so my mum agreed to visit sunday am so she could help me have a shower as I was attached to oxygen and still to the IV fluids (thats right the ones that should only of been 24hrs, was actually connected for a whole week as I kept getting low blood pressure issues, so another 10hr bag of fluids would be prescribed).

Sunday morning I managed a shower and spent the rest of the day doing not alot else as it had completely wiped me out.

Monday proved to be an exciting day for me as the physio decided she would take me off the ward for a walk, with a portable oxygen tank. I was very excited, it was the first time I was leaving the ward under my own steam (I had only left for my daily trips to xray in a wheelchair) since arriving there wednesday evening, so 5whole days ago. Admittedly I didnt get far until my chest started to hurt and my legs ached from lack of use (about a 100m) but I managed a walk and even better I got to see D in the evening as well.

Tuesday a friend visited and I was also waiting for the results of another xray. However this xray was going to determine whether they would be inserting a drain under ct guidance as all previous xrays had shown no change in the size of the lung collapse. In the afternoon about 4pm, I finally received some good news, the collapse was slowly fixing itsself as the air was being reabsorbed into my lung and it was reinflating, so no drain was needed-yay!

My days continued to pretty much continue in this manner. Wednesday was the first day I managed to successfully pass an ng tube and I was started on overnight feeding. Over the course of a week I moved from 50ml an hour over 10 hours (500ml in total and 750calories) to 75ml an hour over 10 hours to the full whack of 100ml an hour over 10 hours (1000ml in total and 1500calories). I passed the ng tube every evening and now after 2weeks is almost a pro!

I finally got off the oxygen on the friday as the lung collapse was resolving itsself slowly and they wanted to see if I could remain stable without it.

the 21st was a bit of a bad day when I was told that I would have to spend the next 6weeks doing nothing strenuous at all and lots and lots of rest to enable my body to fully recover. As for a normal healthy person to have gone through what my body has could take upto a month to recover, so I should expect mine to be longer. This was a bad day because it came with the realisation that I wouldn't be able to do the gangshow I had been rehearsing for since September, as a 2.5hr show 6 nights a week of singing and dancing was considered as too strenuous. I was gutted and spent the next day or so crying randomly at the little things. I hadn't really cried at all up until that point. I think it was because I was too busy being really poorly I didnt have time for emotions, but now I did!

On the 24th (day 15, so now into week 3 of what I had originally hoped to be a 2week stay) I received the good news that my pneuomthorax was now classed as resolved! Woohoo, lung all reinflated. However since this day I have been getting some pain in that area when I do anything remotely strenuous, which everyone is telling me is normal as its my lung still fully sorting itsself out and is a good sign so not to worry.

I was finally allowed out of hospital on the 28th Jan (day 19), on the understanding and promise that I rested and didn't do anything that would stress me out for the next 6weeks so that I could fully heal. I was just so happy to be getting home :D

My parents visited pretty much every day only missing a couple because of bad weather and the fact that they went away on sunday (the day before I got out of hospital) for a holiday they had booked last January! D visited every mon, wed and fri and one weekend night as we agreed because it was a long journey for him to make every day with work as well. I also had various family relatives turn up with my parents and a couple of friends also made the journey to see me whilst I was in hospital which was nice.

Below are a few photos of my hospital stay:

 This photo was my first night in there, very poorly indeed!

Below are some photos of my meals during the stay (I managed to clear my plate 4 times out of a potential 57 meals! I was on a red tray system, which told them I had a reduced appetite and they weren't to overload the plates and put me off eating completely).

 Some get well cards from family:

 First ng tube I had passed (sent this photo to my mum, as they knew I was trying to do it)

 A photo showing all 3 of the tubes currently connected to my body in one way or the other (ng tube, oxygen and port line):

 My 2 faithful friends: IV fluids and overnight feed:

 Feeling very happy, oxygen had just been taken away:

 boo, a slight blip, meant i had to go back onto 2l for a couple of hours, but looking a lot healthier in comparison to the other photo which shows me wearing nasal cannulae:

 On my pipe (ultrasonic neb):

So to summarise, I went into hospital with a pneumothorax, severe sepsis and extreme weight loss. I went through alot during those 3weeks including starting 5 new medications/treatments (all of which have come home with me) and come home in the recovery stages and just some weight to regain.

January 2013 was not the best of months but here is looking towards February and starting my life living with my fiance and enjoying everything this has to offer :)

Christmas

wow Christmas seems so long ago now, its almost hard to remember what I did.

Christmas day was spent with my family, there were 13 of us around the dinner table!

Boxing day I went to my fiances house and we opened our presents from each other.

New year was spent in wales with D & A. we had a great time and A got throughly spoilt with loads of presents and treats over the few days we had him.

We managed to go and see some of D's family as well while we were there as well, which was nice. Especially because 1 of them hadn't seen A in nearly a year.

Apologies

Apologies for lack of blogging but after christmas I moved house and then spent 3weeks in hospital.

Will update properly when I am on my own computer so I can add the photos in I want to.

Hope everyone else has had a better start to 2013!