Wednesday 27 April 2016

Annual review letter.

So this is the dreaded and yet eagerly awaited letter with all of his results from the many tests he had last month. Not a huge amount of surprises... Mostly about his tummy issues, low immunoglobulins blah blah, things we are only too aware of. As I do every year, at our following clinic appointment I'll ask a million questions about the many results (honestly, the blood work alone is 2 pages long). 

Anyway, one thing that did stand out was in the Psychologists review, who wrote 'Isaac's responses to the survey show signs that his CF causes him emotional distress'. 

Now fortunately for us, Isaac is the most chilled out dude ever, who tends to worry very little. Yeah, we often agree that CF sucks at times, and how it feels unfair. But he's never really been sad about it, just frustrated. But worried that I may have underestimated his feelings I asked him about the survey tonight; 

Me; So Ise, you know that survey you did in clinic last time, did it ask about how you feel about CF honey? (Giving him a loving hug) 

Him; oh yeah.... but I mostly just ticked any old thing (followed by roars of laughter and him pulling his underpants up to his chest giving himself a huge wedgie...). Ha ha, I'm dad, I'll give you EMOTIONAL DISTRESS (more laughter). 

No worries on that front just yet. And while he is happy, so am I. 
Goodnight x 

PS; my auntie Margaret's kindness in life has raised more than £850 for the CF Trust in her passing, in lieu of flowers. Ian, Helen & Sian, love love love x 



Tuesday 26 April 2016

CF doesn't need to be so lonely...

Video to watch here.

CF friends, parents, partners; please stay in touch. And for those I have yet to meet, please contact me through FaceBook or similar.

Much love x

Wednesday 20 April 2016

Spent the evening reading about cocktails


Unfortunately it was bacteriophage cocktails to treat Pseudo aeruginosa infections in CF where the existence of biofilms and multi-drug resistant bacteria are increasingly problematic. 

Science is so sexy. 

Goodnight all. We have lots to hope for thanks to all those sexy scientists x 

Sunday 17 April 2016

Trek on

Its taken a while, but we're all feeling better. Although Isaac continues to never quite make it through a whole week at school.... the anti sickness meds are fantastic, but only if we get them into him as soon as he starts to feel nauseous. If we're too late, once he starts, he can't stop. And going to school having just been sick everywhere and its going to take a while for your tummy to calm down is not always possible. ANYHOW... It's much better than it has been, so can't complain. He doesn't.

We are training hard now for the trek, less than 7 weeks to go (please please sponsor us here, this will be 12+ hours of hard slog!). I managed to get my laces tangled together and totally face planted last week, hurting my shoulder and hand. But while my legs are still going, so shall I! Feeling quite excited now, our team is now 10 lovely ladies (THANK YOU ALL!). 

This week my thoughts are with my uncle and cousins who have just lost my aunt so sadly, suddenly and unexpectedly. Despite their tragedy, they have thought of the CF Trust and are asking for donations rather than flowers. So very very kind. 

The CF trust are doing such important work in research, support and awareness. And how lucky are we to live in a time where cause-treating drugs are a real possibility that could one day make CF stand for Cure Found? Oh, and did I mention, you can sponsor us here?😜

For Margaret, Edgar, Tod, Penny, Jayne, Anders, Toria, Emily and Eva... Party on up there. Miss you x 

Tuesday 5 April 2016

War on bugs

I have decided not to talk about feeling ill as it makes things sound so glum (which they are generally not, we have a lot of fun in this house). I hate glum. Instead we will discuss health in terms of wellness;  

 

Rosa is less well. Poor pudding. She has had 3 weeks of fevers, a water infection, coughing, cold. Small people are simply bio-hazards that wonder round your house firing germs at every available surface.

Dan is not so well. He has had a couple of weeks of fevers and headaches (although admittedly, he has also gone cold turkey off the Tramadol, which he has been on for some time for his back, so not sure if its viral or withdrawal). 

Anouk is getting better, my little lovely. She is so caring and helpful, I just want to squish her with cuddles most of the time.

And I am getting better too …. just have that ending cough which drags on.


…. But Isaac is most definitely not quite really properly well at all. Saving the best for last, he has fevers (40+), vomiting (his speciality), headaches and dizziness (almost hitting walls and the like), and was hilariously delirious last night (apparently we 'lost' the whole house). So we will throw an extra antibiotic at him to limit the risk of secondary infection and hope that does the trick.

 

If you’re anything like me, pre-CF, you might not be very familiar with the difference between viral and bacterial infections. I explain them to the kids in terms of size… viruses are teeny tiny little buggers who squeeze their way into poor unsuspecting cells. Small, nimble, but tough... antibiotics will do nothing for a virus. But thanks to our amazing immune systems (which Isaac and I refer to as his white blood cell army), you can only be infected with the same virus once. This is almost definitely what Isaac has right now, and is what most coughs and colds you ever have will be. 


Bacteria are big fat oafs in comparison, slower to grow, but cunning. They like to roll up after a virus has caused havoc in our bodies, or post op, and seize the opportunity to set up camp. Now this is where antibiotics are our saviour. Bacterial infections are nasty, but thanks to the handful of antibiotics we have readily at our disposal, we can beat most of them. 


But one day this might not be the case…. Because of widespread misuse of antibiotics, particularly in the East where you can buy them over the counter for a cold or a stubbed toe (which they cannot treat!), we are creating our own worst enemy - super bugs. Bacteria that we almost kill with a few days of antibiotic treatment (but not quite), will re-group, recover, mutate, and infect again, and again, and again. Simply by surviving the onslaught of antibiotics, they are developing more clever ways to overcome the most sophisticated and advanced antibiotics. Some of the most resistant infections are caused by Gram-negative Acinetobacter, and by certain strains of Klebsiella and Pseudomonas species - all of which Isaac has cultured in the past at some point. And while infectious agents are becoming more and more resistant to the medicines that are currently in use, not enough drugs are being developed to combat them.


People often ask me, if Isaac is on maintenance doses of a few different antibiotics all the time, will he become immune to them? But it’s not people who become immune, it’s the bacteria. And if we go on creating super bugs, and not-investing enough into research to find new antibiotics, this could be the next world war we all face… And that is the kind of shit that keeps me up at night.

 

People with CF are no more susceptible to viruses than people with healthy lungs, but they are much more likely to develop bacterial infections following them, which is why he needs daily antibiotics, both by tablet, and inhaled into his lungs, and occasionally by IV (intravenous, as in, into his blood) to prevent them setting up camp, or flaring up where they already have set up camp. This is also why we ask people to avoid him if they have a cough themselves, and why I wish more people would get a flu jab; to help limit the risk not just to themselves, but for those less well around them. 


So why is there such a shortage of new antibiotics being developed? One is scientific; the whole low-hanging fruit has been picked kind of thing. It’s not easy, I get that. But another big reason I fear is commercial. Antibiotics have a poor return on investment because they are taken for a short period of time and cure their target disease. In contrast, drugs that treat chronic illness, such as high blood pressure, are taken daily for the rest of a patient’s life. The solution may lie not only in scientific discovery but also in the economic incentives for developing drugs. Separating research and development costs from drug pricing and the return that drug companies receive on investment could turn this problem around. 


I believe the rewards should be higher for those drugs developed which make the most difference; in other words, what is more important? A small difference to many people, or a huge, life saving chance for fewer? 


This year the World Health Organization is devoting World Health Day on 7 April to raising awareness around the issue of antimicrobial resistance. More information is available at: http:/www.who.int/world-health-day


PS: On a lighter note, Isaac called me into the room the other day to ask me ‘Mum, did you know there was a man called Marvin GAYE?’. Snigger snigger. Not growing up so fast then.