A lot of my day is taken up by my heavy, treatment regime. I have endless tablets, nebulisers, physiotherapy and various other treatments to help keep me stable, or to try and prevent me from getting any worse. However, all these things are now not working so well, which is why I need a lung transplant.
Tablets: here is a list of all the tablets I take in a day, how many I have to take and what they are all for.
Creon 40,000. I take this every time I eat, 3 with meals, 1-2 with snacks, helps to break down fat in foods so I can absorb them better.
Flucloxacillan. Antibiotic to fight infection, 2 tablets morning and night.
Azithromycin. Antibiotic, 1 tablet.
Multivitamins (A, D, E & K.) 2 chewable tablets.
Carbocisteine. 2 tablets morning and night, helps to thin phlegm making it easier to clear.
Ursodeoxycholic Acid, 2 tablets, this is to treat my liver problems.
Vitamin K, 1 tablet.
Montelukast, 1 tablet, helps to reduce tightness in the chest.
Omeprazole, 1 tablet, this is to treat acid-reflux.
Mirtazapine, 1 tablet, this is an anti-depressent, but it also helps with my anxiety, weight gain and sleeping.
Megace, 1 tablet, this is also to improve my appetite, but is actually used to treat breast cancer.
Co-codamol for pain relief, usually for chest-pain, I take between 2-8 tablets a day.
Diclofenic, this is also pain-relief but mainly for my arthritic joint pain.
Oxycodone - 12 hour release Morphine, to manage and cover my pain in the background. I take it at 2pm and 2am
Diazepam, for my anxiety and sleeping problems.
Oramorph - a strong morphine based pain killer, basically knocks me out so I'm certainly pain free then!! :)
Ciprofloxacin, this is an antibiotic taken twice a day for 14 days. I have this when I am starting to feel unwell but not quite bad enough for IV's.
Prednisolone (steroids) to reduce inflammation in the airways and help infections.
Ondansetron, which is an anti-sickness tablet, I take this when on IV's as most of the antibiotics have nasty sicky side effects!
Tranxemic acid - I take this when I cough up blood.
Inhalers: I take three different inhalers.
Fostair, twice a day.
Tiotropium (spiriva), once a day, this is used to prevent wheezing, shortness of breath and difficulty breathing.
Salbutamol, which is used for asthma, because believe it or not, I also have asthma, yay.
Nebulisers: these are usually antibiotics in the form of mist inhaled directly into the lungs.
Tobramycin twice a day, which I take alternate months with Colomycin. Both are antibiotics.
Pulmozyme (Dornase) once a day, I take it an hour before my physiotherapy, it helps to thin the phlegm, making clearing my chest easier
Ventolin/Salbutomal, this is for asthma and helps to ease my breathing and wheezing.
Insulin, I am on two different types of insulin.
Levemir: a slow acting insulin used to control sugars throughout the day, I take it at 12pm and 12am.
Novorapid: a fast acting insulin, I take this with every meal or large snack.
I use a system called 'Carbohydrate Counting,' which means I work out how many carbs are in whatever I'm about to eat and work out exactly how much, or if I need to take any insulin.
Physiotherapy, 15 minutes twice a day. This is a way to help keep my chest clear from mucus:
I use a device called an 'Acapella.'
When you breathe out through the acapella, it keeps your airwars wide open to get behind the sputum helping to move it upwards, so it easier to clear. Also vibrations are transmitted into the chest helping to loosen the sputum from the sides of airways.
Supplements, I am allergic to a lot of the high-calorie supplements. I have a feeding tube and the only feed I can tolerate is soya feed which doesn't have too many calories in compared to the others, so I don't feed at the moment. I do, however, use something called Calogen, which has 50g of fat per 100ml, I have 4 x 60ml a day which I put down my peg, as it's not too nice to drink!
I also use sachets called Pro-Cal powder, which I mainly add to food such as curries/chillies/lasagne or desserts like trifle/custard, it is 100 calories per packet and I'd usually add about 2-3 in a small curry, 4-5 in a larger meal which I'd then eat over 1-2 days.
IV's, basically a stronger dose of antibiotics that go through a drip into the veins:
I usually have antibiotics called Tobramycin/Ceftazadime/Aztreonam/Tazocin they can be between twice and four times a day and I normally have them for 2-3 weeks.
I either have IV's as an in-patient in hospital, or at home. I have been taught how to draw up and administer my own IV's so I can do them at home, however, when I'm unwell it can be too tiring.
I have a PICC-line inserted in my arm through local anesthetic, this line can stay in for upto 18 months but the one I have in now is the longest I've ever had one, I usually get frustrated because the dressing needs changing weekly and it's not allowed to get wet so bathing/showering is difficult. I've had this one in since August and I've almost been on constant IV's since November time due to being very unwell.
Oxygen, pretty self-explanatory: I have my oxygen at a flow rate of 2Litres/per mintue, during the day and while I sleep.
I have a concentrator at home which seperates oxygen from the air and purifies it so I am able to breathe it in, the machine is 72cm high and makes a bit of noise so I keep it in a seperate room to the one I sleep in.
I also have small, portable cannisters containing enough oxygen to last between 2.5 - 5 hours depending on the rate, which I can use when I am out and about.
Not going to lie, this has made me feel pretty miserable, I guess I don't actually realise the amount of time CF takes up until I write it all down, lol!