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!):