Day to day life…

It’s dawned on me since starting this blog, that I actually haven’t explained a lot about cystic fibrosis & how it affects me these day’s.

Obviously family and close friends know, and my fellow cystic’s, but what about everyone else? I’m still really new to blogger & haven’t worked out how to put extra pages / tabs to include more information, so thought I would explain and give you the low down of 24 hours in Kimberley’s life!!

Cystic Fibrosis is one of the UK’s most common, life threatening, inherited disease, if two carriers have a child, the baby has a one in four chance of having Cystic Fibrosis. It affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.

In ‘clinic styley’ letter form here is some information about my diagnoses & current treatment;
I have Cystic Fibrosis, CF related Diabetes, previous Allergic Broncho-Pulmonary Aspergillosis, Osteopoenia.
Previous Zinc deficiency with subsequent Night Blindness, Supplemental feeding through my Peg (feeding tube in tummy) Arthritis & finally previous Fungal Septicaemia.

Current treatment & medication I am daily on is as follows; (Most of this will be complete gobbledegook to you but it’s just to get across the extent of potions I have to take!!)

Alternate monthly nebulisers of Tobramycin & Meropenem which are taken twice daily.
Oral antibiotics, Septrin & Azithromycin
Risedronate for my bones although it has been discussed recently that I will now be having a yearly infusion.
Lansoprazole, Vitamin E, Vitamin A&D, Forceval, Cacit D3, Vitamin K, Ferrous Sulphate, Magnesium Glycerophosphate.
Prednisolone steroids, Symbicort & Tiotropium inhalers.
Creon 10,000 for every time I eat. Perative feed for over night & supplemental feeding. Senna, Sodium Docustate & Movicol to help my tummy with use of Klean Prep when it gets bad. Piriton, Zopiclone, lots of painkillers & finally Insulatard & Novorapid insulin.

Just one cupboard of some of the medication I am on

I have to have a high calorie diet as my body doesn’t absorb the nutrients from food I eat & usually have a lot of tummy trouble from blocked bowels. I do home iv’s (intravenous antibiotics) regularly via my portacath, usually every few weeks but now its to the point it’s only a few day’s break in-between finishing one course & starting a new one. I prefer to do it at home as I don‘t eat or sleep when I am admitted into hospital & I prefer my home comforts!!

My home IV Fridge

I have an oxygen concentrator which I am using now more than ever these day’s & use a VPAP machine for physiotherapy.

Much to my disappointment, I had to give up work in 2010 & my house was fitted with hand rails, an intercom & two corner stair lifts in June 2009 which are in constant use as now I can‘t walk stairs unless it‘s two or three…
I have a manual wheelchair decorated in playboy stickers & pink ribbon & more recently an electric wheelchair which was provided for me so I was able to get out the house if I wanted to or needed to whilst Stefan wasn’t with me.

I used to have a carer that would come in & do all the things I couldn’t do when I was on my own, but since Stefan has been home during the day’s we have cancelled this so the help can go towards people that need it more.
Looking after myself is a full time job, I always feel sick in the morning’s so it’s impossible to do my med’s first thing.

I used to think I was a very independent & active person a few years ago, I would still love to be working if I could & the fact that at times, more now than ever, I can’t even wash or dress myself make’s me really angry!!

Here’s hoping things will change in the not so distant future…. xxx