Friday, 13 June 2014

June 2014 - Anniversary of 2nd hospital visit

Not so fond memories of a year ago today, as described in this blog post

At the time I had just started to come through what I thought would be the worst bit of the whole Pituitary tumour saga and was just about to find out that actually I could feel a whole lot worse. I didn't know about the words 'Addisonian crisis' or 'Adrenal Insufficiency' and looking back on it that was a shame because maybe I could have avoided another stay in hospital, who knows.

Before last May (2013) I had unknowingly spent many years coping with a lack of Cortisol, as it gradually reduced over the years due to the tumour. This gradual ebbing away did present some symptoms but I didn't recognise them and slowly but surely my body acclimatised to the levels of Cortisol in my body. Finally I was diagnosed as having very low Cortisol levels and was prescribed the Hydrocortisone to replace my natural source, and it made a big difference to me. Now I was in a position of being on the correct level of hormone and my body would then not cope with a sudden drop, which is what happened when I got very ill back in June 2013. Sickness and diarrhoea saw me unable to absorb my Hydrocortisone tablets and that led me to have an acute Adrenal insufficiency - my body could not cope with the lack of Cortisol and the resulting lack of immune response and the inability to cope with the stress of the infections I had contracted, led me straight on a collision course with a hospital stay.

I now recognise that this cannot happen again, and have strategies in place to make sure that I have an emergency injection of Cortisol with me and know only too well what to expect if I ever have an Addisonian crisis again. Let's hope I don't.

Looking back, it is a shame I wasn't warned about the danger of adrenal insufficiency. I do remember seeing leaflets that informed people about carrying cortisol injections, but I was told I didn't need these yet. All I had been warned about was the sick day rules that said "double your dose" if you get ill. This didn't cover the precautions you should take and the dangers you face with adrenal insufficiency, including ultimately, death. So perhaps a bit more early education for patients like me about the dangers of not being able to take the hydrocortisone replacement.

I've recently been reading this website which is trying to promote the dangers of this condition and the measures campaigners are trying to get in place to help those that suffer with the issue. It is still not very well understood. I've nicked this image off their site....which I found quite interesting. The dosage of Hydrocortisone I take tries to mimic this pattern by taking a higher dose first thing in the morning and less as the day progresses....

So June 22nd 2013 turned out not to be a very good day for me, as I have said before, I cannot remember much about it, but my wife can and it makes her shudder.

June the 22nd this year - a world apart thank goodness.

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