Addison's crisis - Not dead yet, Jim!

I haven't blogged for a bit as I was on holiday and when I returned, my hard drive mysteriously had crashed. At least we weren't burgled, as that is one of the favourite half-term pastimes in our neighbourhood.

It was quite an eventful holiday as we had occasion to use Kirk's emergency 100ml intramuscular hydrocortisone injection.

When I say holiday, I actually mean we went to my home country to deliver Bambam and Pebbles to my ex for their contact period with him. Eeyore, Tigger, Kirk and I stayed for the week at my parents' house. Kirk had been quite stressed out for a couple of days. He doesn't like travelling much. In addition, he'd apparently picked up yet another infection.

He picks up almost any infection that is going around and has had several rounds of antibiotics lately. The combination of panhypopituitarism and Addisons means his system is quite weakened, and the hydrocortisone also works as an immunosuppressant. There's a negative feedback loop going on there: whenever Kirk gets an infection, he has to take a higher dose of hydrocortisone to cope with the infection and avoid a life-threatening crisis. However, the high dose of hydrocortisone suppresses his immune response and therefore he's more susceptible to the next infection... Hopefully he will soon be able to be on his normal dose most of the time, and avoid getting ill so often. Perhaps in a few years when the kids are bigger and not so contagious anymore! At the moment, he is on a high dose more often than on a low one.

So he had been stressing out more than usual, and was already showing signs of low cortisol, when he got a stomach bug as well. It really was a mild bug for the kids and me (we were queasy for a bit and then better), but in Kirk, it caused vomiting, which is about the worst thing to happen. The vomiting itself is a stressful event for the body and it eats up cortisol to cope. And then more vomiting happens as a symptom of a crisis. After two successive midnight bouts of heaving in the bathroom, I told my pale, miserable, shaking and cold-to-the-touch husband to take his injection kit out. He couldn't keep down an oral dose. He did the injection himself. I'm scared of needles. I'd only do it if he really couldn't.

It did the trick, but we didn't realize just how dehydrated he was until a couple of days later. He lost up to 6 kilo's in a couple of days, until we read up and started feeding him sports rehydration drinks. He got a lot better after that. After the crisis, we went to a local GP and they took their time, did their research and got on the phone with an endocrinologist right away. They measured Kirk's blood pressure, tested his blood values, and let us take him home but with a letter for the specialist in case he took a turn for the worse and needed to be admitted to hospital. A lot better care than NHS. We had to rearrange our busy visiting old friends and new family schedule and do a lot of resting and laying about, with Kirk on high doses of hydrocortisone and anti-emetics, but the important thing is: he got better. First real Addison's crisis safely averted!

It's very scary to me when a simple mild tummy bug can put my husband in a life-threatening position, and especially scary to know that to many medical professionals, this condition is so rare they don't know what to do either. However, we were in the right country for it, and we learned new things about it, so hopefully we can avoid more crises in the future. Maybe one day, we will actually agree with the NHS blurb that this condition can be 'managed with medication' and sufferers can return to a 'normal life'. Certainly not the case right now!

To help Kirk further along in coping with this illness, he'll be doing a day curve soon, where his cortisol levels will be measured throughout the day to see how/when he absorbs cortisol and how much medication he needs to manage. At the moment he is set on an 'average' dose, which hardly makes sense as he is a unique case. This will tailor his meds to his real needs. We have also started playing Superbetter, a multiplayer game that turns coping with an illness into an epic positive experience. Currently, we've only started, so we'll have to see how it goes, but I will update on our progress here.