This is a letter to my GP regarding my discharge summary from the hospital after my recent admission. It is riddled with errors and they, along with some bizarre recommendations, make it dangerous for me.
Dear Dr. Xxxx
I’m writing to you because I find myself at odds with my Discharge Summary. It is, in short, inadequate and dangerous. And I must also say that at no point did any doctor discuss any element of my medication with me. The only person to do so was a pharmacist, and she raised no questions at all.
Neither were any tests relevant to my respiratory condition carried out, not even something as basic as PEF or FEV1. Not this time, and not last year, either. Continue reading
Today I’m reinventing my Harissa recipe as I think a return to the cardiology ward might be lurking in my future. In fact, I’d put money on it, as this problem isn’t going to go away.** Above all else, other than survival, I need protection from its hideous, saltless, food.
**I won’t say I’m not still scared of dying – the only people who are honestly not are the young who, for the most part, are decades away from having to confront their own mortality. Me? Resigned, I suppose. And scared. Not of death, per se – that’s inescapable (but if it happens it would be nice to go to bed and not wake up), but dying of pulmonary oedema, as I almost did last week, is a terribly hard way to go.
I was asked for pics, so here they are. It’s a very humid day and that affected the hydration, causing the dough to spread rather more than it rose. What the hell, it’s still bloody good bread! Prior to the first proving I use a stand mixer for the grunt work – essential in Spoonie World.
The dough, first proving completed, shaped, and sprayed with oil to stop it forming a crust. Continue reading
I am not allowed salt.
This is a crime against nature – everyone needs salt.
It’s particularly cruel as many of us with Addison’s Disease crave salt more than usual. What hasn’t been explained is whether this craving is driven by an actual need – I must find out. (I did, see*** at the end.)
In hospital last week, in the heart ward while the pulmonology tossers tried to claim me and the heart people – in whose hands my recovery resided and in whose ward I was – just quietly got on with their thing (I’d have preferred a more hands-on approach, like consulting me before prescribing a drug, Ramipril, I can’t take).
That my heart really is a serious problem is reflected in the fact that the pulmo pillocks have screwed up my meds while announcing no further treatment or support is needed, while the heart people have consigned me to the care of the Heart Failure Nurse service, who are scheduled to put in their first appearance on Thursday. I have no idea how this works yet – whether they will routinely visit to monitor me, in much the same way as the Community Nurses, or whether I call them at need (though, really, if I do need help I need to be in hospital).
After being diagnosed with Pulmonary Oedema in hospital, I’ve been doing some research.
I rather wish I hadn’t but as I firmly believe that knowledge is preferable to ignorance I had no choice. This is Pulmonary Oedema. The Mayo Clinic – which is where that link will take you – is one of the more reliable sources of medical information on the Web.
I’ve just broken my own rules, and eaten a bowl of freshly-made soup. It was amazingly good – this is the (vegetarian), recipe.
When I was hauled off to hospital last week, I’d just filled the fridge with fresh veg. Given that my shortest stay last year was10 days, I had visions of coming home to a fridge full of brown mush.
Actually, these giant “American” fridges keep veg in remarkably good condition though, flying in the face of received wisdom, the veg does have to be over-bagged and tightly sealed or the circulating frigid air has a desiccating effect on it, and I hadn’t done it.
This really belongs in The View From Bed 3, but as there’s a real risk that I might die suddenly I wanted to reach my main audience so you know why I’ve disappeared – if I do, of course.
My bleeding-lung problem goes back about 6 months (about 50 years really, but it’s only been a serious problem this year). Normally, over the 50-year period, it would be old blood, as indicated by bruise-coloured sputum, and perfectly normal in my case. Of late, though, it has been bright, fresh blood, not abnormal even then, as excessive coughing can pop a vein on occasion.
Now, though, the severity, and the sheer volume of blood, along with other changes (frothy sputum, for example), indicates a much more serious condition, pulmonary oedema, and that can kill (as happened in the case of Stephen Gately). And that is the hospital’s diagnosis, along with a degree of atelectasis (deflation of the lungs’ alveoli,** which explains why it was so hard to breathe, and why it still is).
My new hospital-based blog The View From Bed 3 is now up. Go check it out.
Well, I’m back home.
Pretty scared if I’m honest. I came way too close to dying this time. Not my opinion, two docs told me on separate occasions – and while I hate being in hospital, it can be, and was, a life-saver.
I’m glad to be out of there – no bloody peace day or night – but the absence of that support is what’s scary. The amount of support I received, via Twitter, was immensely moving, though. Thank you all.
In hospital again folks so no posts for a while – my heart’s turned on me and they’ve finally admitted it’s utterly buggered.
But – I WILL be back!
Sorry – can”t publish comments from my phone but thanks and I will as soon as I can.