A blog about Cystic Fibrosis, promoting organ donation, family, love, art, drinking too much tea (and quite possibly gin).
Wednesday, 27 April 2016
Annual review letter.
Tuesday, 26 April 2016
CF doesn't need to be so lonely...
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
Sunday, 17 April 2016
Trek on
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.