Addisonians

We met Prof Trainer on Friday. He was a very nicely spoken Scot, who explained everything patiently and clearly, so even I could understand it (I think... though I was scribbling fast so some of the following may not be 100% accurate). We have learned more things:

1. Even though it's tiny, the adrenal gland takes 11 - 12% of the body's blood supply (rich field for growing tumours, so we need to get it out!)
2. There are two parts to the adrenal gland; the adrenal cortex (produces steroids) and the adrenal medulla (producing adrenalin).
3. The Americans call adrenalin 'epinephrine' which is why epipens were so named. Aha!
4. We don't worry about the adrenalin as sympathetic nerves make adrenalin too; you can get a normal adrenalin response without an adrenal gland (good news for the wasp stings).
5. The steroids (aldosterone and cortisol) are more important. Cortisol is the immune / glucose response and is very important if you're unwell (eg. flu or accidents). Aldosterone regulates salts and blood pressure. Both are essential for life.
6. Having no adrenal gland is known as Addison's disease and people who suffer are called Addisonians.
7. Addisonians have to take tablets to replace hormones 3 times a day. Most first thing when they wake, some at midday and then a few around 5pm - 6pm.
8. The quantity used to be 30mg, but now it's 15 - 20mg (with top ups if you are unwell, injured or going to the dentist). The doses have been reduced to avoid the usual side affects of taking steroids, such as weight gain, risk of diabetes, weakened bones etc.
9. The ambition is to imitate physiology, (ie to replace, not to give extra). 
10. There is an owner's manual to Addison's disease (people living with no adrenal gland). We have downloaded this, although Quent is about as good as any man at reading the manual.
11. The user manual states 'Addisonians can bring up a family on their own, hold down a demanding job, run marathons or even become the President of the United States.' Multi-taskers, it seems.
12. The main side effect of being an Addisonian is fatigue / lack of energy. Hmm. We'll see.
13. Quent will be taught how to inject himself if he has an upset stomach and cannot absorb pills. Prof Trainer did suggest self-injecting or spouse-injecting but we've narrowed that down to self injecting, with spouse-blogging!
14. If the levels of hormones aren't right, you may have an Addisonian crisis,with life-threatening symptoms, totally unrelated to your minicab failing to turn up. 
15. The lack of adrenal gland doesn't preclude future IL2 if it's needed, but it would make it trickier.
16. Even very intelligent, softly spoken Professors can wear very loud shirts.

It all sounds relatively straightforward, except the bit when Prof T said "it means you have to be more organised in life". Hmm. Never our strong point.