Monday, 8 March 2010

A day in my life

Both Rachy and I have mentioned our heavy treatment regiemes in previous posts. I thought I'd share my daily routine with you so you can see the kind of things I have to do each day. I will put the number of tablets in brackets and try to give you an idea of timings too.

As soon as I get up I do my Ventolin nebuliser to open my airways and help make my breathing abit easier, I often feel very tight,wheezy and shut down. This is followed by a steroid inhaler to help reduce inflammation.Then I do physiotherapy which I need to help remove the mucus that clogs my airways and causes infection. My nebuliser and inhaler combo open the airways so its easier to get the mucus out. My morning session is chest percussion performed by my mum and basically involves me laying flat and having my sides patted with a cupped hand to "knock" the mucus out while I do breathing exercises to aid this. Next another nebuliser this time an antibiotic to fight infection.
My morning tablets consist of about 5 tablets - Phyllocontin – helps to open up the airways, and 3x tablets to control reflux and stomach acid. All of this takes around an hour or so to complete.

Mid Morning
During the morning I usually end up doing another session of physio if I feel that i need it (30-40minutes), this time I use a pari pep, a device that I blow into against a pressure to help force mucus out of my lungs. I often combine sessions of physio with steam inhalations too as they help to loosen the mucus and to make my chest feel less dry,usually 4-5 inhalations per day.

I take Creon capsules everytime I eat, having CF means I can't produce my own digestive enzymes to break down my food so these do it for me. Amounts depend on what I'm eating but usually 10-12 with lunch and around 40 per day as a whole! I also have to take extra vitamins because I don't absorb them from my food so another 8 tablets including liver tablets as I have liver disease (a compliaction of CF). I am a borderline diabetic (again a result of CF) but at the moment I can control my sugar level via tablets x2 before a meal. Mealtimes can often take a long time because I often have a poor appetitie. I take my blood sugar levels 2 hours after meals to check they are in the normal range.

I do another physio session and a different nebuliser called Dnase which liquidises the mucus in my airways.I repeat my Ventolin and symbicort and antibiotics as above and take
Doxycycline and oral antibiotic and Azithromycin to reduce inflammation (x3)

With my dinner I take Creon 12-14, vitamins, Ursadeoxycolic acid (x8). It's nearly the end of the day. Before bed I have to take Anti reflux drugs, airway opener, antihistamine (x5)

In order to keep my weight at a good level for transplant I have to feed overnight to get some extra calories,this is done via Nasal Gastric feeding. I push a thin tube through my nose, down my throat and into my stomach which is then hooked up to a drip feed of high calorie liquid. It is fed slowly into my stomach during the night. In the morning I pull the tube out (not painful) so I can feed normally during the day. I will usually have to get up during the night in order to turn the feed off etc when its finished.
In total I take around 75 tablets per day.

So thats my day in a nutshell! Its quite a heafty list and one that seems to grow and grow as my condition worsens, I often do an extra physio session etc if i need to. I am now using my inhalers 4 times per day in addition to the times listed above as my lungs are feeling so bad. As rachy and I mentioned in our first post we are also battling the constant stream of small things such as stomach pain, headaches, lethagy, nausea, breathlessness,the effects of highs or lows in sugar level etc. It takes a huge portion of my day and includes tasks I haven't even mentioned such as dressing and washing taking a long time due to breathlessness. I need help with all my meds and day to day tasks as I get so tired. If it wasn't for my wonderful mum I just couldn't manage, she helps me SO much throughout the day (and sometimes the night) but is often drained by it all too. I also use oxygen 24 hours per day and a wheelchair when i go out anywhere which needs getting ready in advance or I simply can't go out. It doesn't leave much time for anything I actually want to do such as uni work. I often feel as if the illness is getting bigger and I'm getting smaller.
I hope this gives people an insight into what life with CF on the transplant list is like each day.


  1. You are so brave. It takes a very special person to battle though what you have to, and stay positive for the future. How you fit uni work in I don't know. There are a lot of thoughtless selfish people in this world that take what you don't have for granted. You need more people to understand what you are going through. I'm sure social media has a role to play in raising awareness and getting your message out. It's not fair you have to suffer in this way.. If only everyone had to go through just one of your days. I really feel for you both.. keep battling on and keep strong. I for sure will be reading this and your own blogs.

  2. you're both quite the amazing duo. <3