A global crisis

Anti-microbial resistance (AMR) is a global issue of gigantic proportions, resulting in the deaths of more people than through war. While this is a prevalent issue in people with chronic health conditions like CF (even in oncology, an infection is responsible for quarter of all deaths) this can affect anyone…. from a small cut to your knee that becomes infected, or from routine surgery, leading to antibiotic resistant infection and death. 

Here you can see me, giving a patient representative perspective, and a number of (much smarter) key people working in the field of AMR. I feature in the first few minutes, talking about Isaac’s complete reliance on antibiotics, and for the Q&A at the end, but I urge you to watch the full hour if you have the time. 

I’ve been banging on about this for years (read more here, here and here) Clearly this is an issue that concerns me hugely, but it should concern us all, and so few understand or engage with the problem. We all need to shout about this more, and lobby the right people to collaborate, research and invest. 

Have a great day x

Foggy days

Foggy fen days, while surround sound coughing prevails at home. 

I’ve been signed off sick for two weeks, with the most evil bug I’ve had in years. My chest and voice have not been great since we got back from holiday, in early September, and finally floored me. I cough until I’m sick, multiple times a day. I don’t sleep. My voice is a quieter than a mouse and croakier than a frog in palliative care. I’ve spent the last couple of weeks on diva like ‘voice rest’. Not easy with the kids… I mostly hold up signs saying things like ‘no frickin way!!’ or ‘ask your Papa!!!’ and the dog doesn’t get it at all, but I suppose that might be because he’s German. 

Huge thank you to all our family for the food, love and help: Ivan and Hjordis for covering lifts to hospital with Isaac; Mum for the soup and never ending offers of help; my gorgeous girls for doing so much for me while I can’t and not complaining; my sister for making plans we can all look forward to later. 

Trying a second lot of antibiotics, high dose steroids, anti-sickness drugs, inhalers and nasal sprays. All will be well, it’s just frustratingly taking a while. 

Isaac is much the same as he was last time I wrote. Intermittent fevers, more coughing, achyness. I’m dreading him catching this too, but most likely it’s the same he bought back from holiday. Hospital today revealed his nasal polyps are back with a vengeance and will need surgery, mega disappointing so soon after his last surgery. He’ll be scheduled for surgery only when the sinus headaches return and he can no longer smell. The good news is that it’s a simple op, after the last big surgery, the bad news is that NHS waiting times are simply scary right now. 

CF means we always have to look ahead and plan for the big events early. We know he’ll need IVs and extra intervention soon, but ideally not so soon that he’ll be going downhill again before holidays. So for now, we are home and keeping each other company, the fire is lit and I have a dog on my lap (Obie never leaves my side when I’m sick) - hoping we’ll have all the bugs out the way before Christmas. 

We are warm, we are home, we are fed, and we love in mucous filled abundance. We are still the fortunate ones x 

Rosa: The ponies just keep on getting bigger. 

Going with the bug shit flow

Our last week has been good. We have, I think, weird viral bugs that we share around the family freely and abundantly. Weird fevers, coughs, lost voices… but nothing awful. That time of year stuff. We are all vaxxed up to our eyeballs (that’s a lie actually, Isaac needs a fourth COVID vax, but wasn’t well enough on the day to have it, so we’re rescheduling that one, but flu wise, we are super powered) and so doing all we can do. Fluids and oranges now. If you have not yet had your flu vaccine, I urge you to look into it. Not just for yourselves, but for those in society more vulnerable. 

I’m trying to go with the flow, and by that, I mean I know that Isaac is going downhill again. Two weeks into extra oral abx for his random fevers, his chest is now worsening. He has been able to work this week, which is fantastic, but we have clinic next week and hearing his chest right now (and constant huff), I’m anticipating more treatment. Instead of dreading it, I’m trying to accept and embrace. Extra treatment, albeit exhausting (IVs) concerning (too soon after his last exacerbation) is a privilege - we are so thankful to live in an age where we have these options, and in a country where we have free access. It’s not an easy life, but it is our life, and we love it. 

Besides, perhaps I’m wrong and he’ll ace his tests. Anything is possible. If he doesn’t, I will be asking for extra tests since it’s been a while and jumping to treatment without lab results/chest x-ray/CT scans is always a bit of a stab in the dark. In adult care we notice they rely more on bloods than they do these other tests which we were used to in paediatrics. 

If you too are bug ridden, feel better soon x x x 

Missing them being this ickle ❤️