B positive

Earlier this month my husband & I, our daughter and a suitcase full of drugs and medical equipment jetted off to sunny Portugal. Our nerves were evidenced by our extensive checklists,  packing and repacking of medication, letters form the hospital and of course passports! Every parent has concerns about travelling abroad with a toddler. CF intensifies these concerns. Will her meds arrive safely? How do we make sure she is having enough salt - people with CF require additional salt in their diet as they loose lots of salt  when they sweat. Hence it's more of a worry when when the temperatures are higher! How will we fit her physio and nebuliser routine into our holiday? Will she cope with the change of  environment? Should we put the creon in the fridge? Our planning paid off and everything went really smoothly. Most importantly we all had fun and created new memories. Eloise learnt new words 'pool', 'pig' and 'Portugal' and by kissing a 19 month...

We never pretend to know what it's like living with CF, so do forgive me if this post it a little too optimistic. Coming to terms with a diagnosis for your two-week old child is a challenging thing and it struck me a few months ago that being positive about CF, wasn't a place we'd  permanently reside. We'd always have downs, as well as ups and it's certainly valuable to recognise when you are in a positive part of the CF orbit. B+ can be complicated With that in mind, we attended a parents' evening a couple of weeks ago organised by the splendid  CF team at Royal Manchester Children's' Hospita l.  Among the presentations, there was one from a chap who has lived with CF since the mid 1970s - about the same time I was born actually.  Among the facts of his story was that his parents were told not to expect him and his sister to make it to their late teens. More than two decades later, he's doing great and still going strong. Chatting ...

Winter is Coming and as avid Game of Thrones fans, we couldn't help but make comparisons between GoT and our lives as parents of a CF youngster. Humour us for a while here, as we think there are some parallels between the two. With CF the status quo is constantly changing. A cough swab result could mean a new treatment, or a cold another antibiotic. In Westeros power dynamics change rapidly, we can totally relate to that! The Night's Watch - the guardians stationed as the first and last line of defence from the dangers beyond the wall - represent our talented, committed and knowledgeable CF Team at RMCH. Watching over us and planning our battle with precision, care and dedication. The lingering fear of winter is comparable to the constant worry that CF brings - always lurking in wet coughs, colds, stagnant water, mud & other places. In the White Walkers we see CF itself. Trying to rule, take over & destroy life. Please refer to The Night's Watch - we are fighting...

"... engaging in the full range of experience -  living and dying,   love and loss -   is what we get to do.   Being human doesn't happen despite suffering.   It happens within it.   When we approach suffering together,   when we choose not to hide from it,   our lives don't diminish,   they expand." I want this blog to be positive but when you have a daughter who has a life shortening condition it's natural that you think about life & death. As medicine advances & our understanding  of CF develops,  life expectancy for people with CF increases, as evidenced by  this tweet . But being me (and being human!) I still sometimes fear the worst.  This lead me to reading a wonderful, insightful and emotional book (I cried more than once when reading it) -  When Breath Becomes Air  by Paul Kalanithi. Paul was an American neurosurgeon, who, whilst facing his own mortality, wrote this  remarka...

I don't want to make this a political blog but, I'm compelled to point this out. Today, dozens of people have taken to the streets to campaign for access to a drug for some CF patients. Hours of planning, effort, media relations, interviews led by the CF Trust. Putting an economic value on something so potentially life-changing is obscene but, for those inclined, the cost is around £120,000 per annum, per patient. A lot of money, yes. The powers that be have declined access to the drug on cost / value grounds. Also today, our government has found an extra £1bn to tie up a survival deal of its own. That's £1 billion to retain power for the next 24 months. Elsewhere, theBritish Navy's new - and only - aircraft carrier is preparing for its maiden sea trial voyage. This cost over £3bn.   These are political decisions based on perceived priorities. I'll just leave that there.  

A round 6 weeks ago one of E 's fortnightly cough swabs identified pseudomona aeruginosa, this  wasn't good news for Eloise. Long short story - E was given a 6 week course of an additional antibiotic (ciprofloxacin) and we started our nebuliser journey (nubulised Colomycin).  I ain't gonna lie, E HATED the nebuliser at first. It was stressful and very time consuming. But we formulated a plan, persisted and E is now such a star.  We put Little Baby Bum on the TV (yes, this really is the name of a YouTube channel full of nursery rhymes!) and turn the volume up so she can hear it over the sound of the nebuliser.  It works a treat! Immediately afterwards she gets a few chocolate buttons (bribery & distraction!). We have to do this for at least 6 months. Fingers crossed it zaps the bug in her little lungs. Thankfully treatment has come a long way - fingers crossed it continues to do so! The oral antibiotics came with their own restrictions...no dairy 2 h...

I'd be back in work for about two weeks after the early arrival of E, when I received the call from home and everything turned upside down. This was 15 months ago. A familiar story to many, the health visitor knocked on saying that the routine heel prick test had revealed a suspected case of CF. Before grabbing my bike and blasting home - very understanding employee - I quickly searched online for CF and found the CF Trust website. The CF Trust homepage The only thing I can really remember was the phrase 'life-shortening'. Our journey had begun. The next day we found ourselves in RMCH talking with a group of strangers - who were all very nice - they were explaining the treatment protocols and the situation. They explained how treatment had come on leaps and bounds in recent years and that there were many reasons for optimism. We also had to put E - who was more of an 'e' at the time weighing about 6lb - through a sweat test. The 'gold standard'...