Give life.

Don’t stop asking.

This blog  rang pretty true to me, even as only a Mum of a kid with a chronic condition. I always, always appreciate when people ask me how Isaac is doing, but the one thing I would add is this; 

Please only ask if you are willing and able to listen if the answer is not good. 

Many times I have been asked, and partly because they asked, and partly because I am a ludicrously honest person (a quality that has got me into some pretty awkward situations in the past!) I have told people how it really is, only for them to awkwardly stumble over their words, clearly keen to get away. Leaving me just feeling awkward and kind of sad. 

Janeil’s experience of trying to balance her public persona as an honest account of the bitterness of life with CF, whilst also wanting to show that life is not all about CF - sadly familiar too. 

People are often surprised to hear that Isaac regularly plays football for a team and goes to CrossFit as much as he can, but our reality is that the very next day he might be in hospital on IVs to help him battle his live-in bug residents. Even in hospital his physios have him in the gym for an hour a day. What he can do each time varies incredibly; a spectrum all the way from walking just a few steps from his wheelchair using portable O2 to supplement his breathing, to press ups and sprints on a treadmill. Exercise is massively important to his lung health, and so we encourage him to do his best, whatever that might be that day. 

CF is an incredibly complex disease, the prognosis might suggest a slow decline of lung health over years, but we also see huge dips and peaks in symptoms along the way too. Add to that, the number of other organs affected by CF (for Isaac, this is mostly his GI problems right now) and side effects from his many medications, sometimes when I’m asked how he is, the answer might also be;

‘umm, kind of OK, not sure, bit mixed, he threw up coughing this morning, and then bench pressed his best weight, might be on the brink of another admission or a fantastic apperance at football’ - we can’t always tell. 

So if you ask, be happy with us when it’s good news, and listen when it’s not. But thank you for caring enough to ask, all the love and support we receive never ceases to amaze us. 

This week has been a funny one. Dan had a football injury a couple of weeks ago, and his leg later became inflamed. The GP diagnosed an infection in his vein, and prescribed an antibiotic. And then another one as it was getting no better. And then a third. After that didn’t work, he was advised to go to A&E - where today they told him it’s not an infection at all, but thrombosis - He has a bloody blood clot from his mid calf almost to his groin! It’s massively inflamed and painful, but a painful ultrasound revealed it’s a superficial vein, not deep vein thrombosis which is more dangerous. He is now home, and hopeful that a 45 day course of blood thinners will sort him out. Got to love him, but he is a plonker, he’s limping around but wants to work tomorrow! 

Isaac, on the other hand, is having a good week. His GI problems persist, but it’s manageable. Next week he is having some hi-tech tests in hospital to assess how well his body tolerates exercise. More on that soon. 

Was so nice to see some sun this weekend. Rosa and I took a walk in the woods - how gorgeous is this girl? Roma time (the name we call ourselves together, Ro and Ma 😊). 

To support our fundraising for the Cystic Fibrosis Trust who fund seriously groundbreaking research, please click here. CF is actually one of the areas of medicine where a cure is a realistic idea, but they lack the funding to achieve this potential. As such, myself and a bunch of my amazing friends will walking the Great Strides walk in the Surrey Hills in June. For me, a bonkers 67km in a single day. 

Have a great day x 

Lurgy lurking and hope.

We still have lurgy lurking in our house (Dan is ill now too), but Isaac is back at school, and we are tentatively hoping he may have successfully escaped my flu (I have decided that believing in jinxing our luck is a pile of old pants and to go ahead and outwardly hope). 

Stay well my friends this bleak winter... spring is on its way x x x 

"Which of us is not forever a stranger and alone?"

Wings of Desire (1987) dir. Wim Wenders

Live life, give life

In the UK more than 80% of adults support the idea of organ donation, but only 24% have signed up. UK friends, can sign up here.

Please also share this video, and your own thoughts on organ donation. It may one day save Isaac’s life, and many others like him suffering chronic disease. Thank you. 

Just a chest infection please.

Isaac first cultured Pseudomonas aeruginosa when he was around 18 months old. Since then, despite intensive treatment (colomycin and tobramycin nebulisers daily, dozens of courses of Cipro, and many courses of IVs) he has never been more than a few months between positive cultures - thus he is considered colonised with this bug (one well known to enjoy the extra icky mucous of a CF lung). This means that while he has the odd negative culture (negative cultures sound good, but are actually pretty meaningless) we can assume the infection is always there, lurking in the depths of his lungs; an uninvited guest that nobody likes. 

Symptomatically, living with a constant chest infection can vary very much in CF - unlike healthy folk with a chest infection, he has few fevers, and if you are a regular reader here you will know he plays football, goes to CrossFit, has friends, attends school on a semi regular basis, and has a social life. But when this bug decides to have a little party in his lungs (CF exacerbation) he also spends a lot of time at home or in hospital having IV antibiotic treatment to try and keep this bug at bay. It doesn’t always go to plan. Pseudomonas is like a rude, unruly child - an invador, trespassing on his health. I hate it. 

That said, right now, having had flu in the house last week - we’d take an Isaac typical pseudomonas party over that any day - *flu would floor him more than it did me, and likely give his bacterial infections free rein to party all over his precious lungs like never before. 

Isaac has had a funny few days, up and down, certainly coughing more, on/off fever. Today he has been sick a few times. I’m terrified he might have flu - but nothing is straightforward in CF. Unpicking what is new (flu?) and what is his norm is not easy. 

What is normal is his crazy amazing attitude to just getting on with things - we could all learn from him. More soon x 

To support our fundraising for the Cystic Fibrosis Trust who fund seriously groundbreaking research, please click here. CF is actually one of the areas of medicine where a cure is a realistic idea, but they lack the funding to achieve this potential. As such, myself and a bunch of my amazing friends will walking the Great Strides walk in the Surrey Hills in June 19. For me, a bonkers 67km in a single day 😬 

* we all have the flu vaccine every year - it only protects you from the predicted top strains that year. Looks like we got unlucky. 

Flu.

It started with a pounding head. 

Fevers. Shivering. 

My limbs ache, my bones hurt. 

Are these even my legs? 

Feeling so cold in three jumpers, two quilts, lying in front of the fire. 

Incredible thirst. Sip water, feel sick. 

Can’t stand bright lights. 

Vision blurred. Can’t watch TV, can’t read. 

The whole world has dark edges. 

Head pounding. 

I sleep and sleep and sleep. 

My head tells me to eat, but food has no taste. 

I eat, I feel sick. 

I cough so much it hurts. 

I cough and then I’m sick. 

Fevers, fevers, fevers. 

I need to be horizontal, always. To live in a dark world under covers. 

Day five and I manage to take the girls the five minute walk to school, but it takes an hour lying down to recover. 

Day six and I’m still sleeping all day. 

My head pounds, but all I can think is ‘what if Isaac catches this?’ on a loop, before I fall into a restless, cold heap of sleep, waking only to cough up more crap.

I will be fine.

Today Isaac came home with a fever. 

I called the hospital, they won’t consider anti-virals as he has had the flu jab (so have I) and until he is more symptomatic. 

Please please please don’t let him have this x 

Rene Magritte.