Sunday, 8 May 2016

May 2016 - why have a pituitary blog?

I was reminded today that I have a blog - one that I started nearly 3 years ago when I was first diagnosed with my pituitary tumour. But why did I start it?

Well I think at the time, it was cathartic. I had a lot on my mind and I decided that writing it down might help me make sense of all that was going on. After all, I had just had my first ever stay in hospital, my first ever surgery and my first ever tumour! I had never kept a diary, and still don't, so sharing my inner-most feelings wasn't a natural thing to do for me. But once the words started flowing I decided why not make them into a blog. Which indeed I did.

My initial reasons once the first  few posts had come out, was that actually it made keeping friends and family updated really much easier. They could read my blog and see how I was doing, so it took away those awkward conversations where someone was not sure what to say in case they got it wrong. They could read the blog, see that I'd been having a hard time and get straight to the point. But then I realised as the weeks ticked by, it really helped at a practical level to look back and see what happened and when. Often I'd think "when was that appointment" or "what exactly happened at that point" - and there it all is captured in my blog.

I know for sure now if I hadn't written it all down, whether in a diary or a blog, I would have forgotten some elements of the story and although it might sound a weird thing to want to remember, it does help make sense of events in the here and now. Something of which I will come onto in a moment.

I also had the grand idea that writing this all down and putting it on the Internet might actually help someone. I've had various conversations in the last 3 years that prove on a few occasions it has indeed been helpful for people. That I am pleased with, certainly when I started Googling my symptoms soon after it first was reported that I either had a pituitary tumour or something wrong with my adrenal glands, I found web pages that talked factually about the conditions. But what I did not find so easily was 'real people' who had the condition and how it made them feel. Searching now only 3 years later, I do see more such blogs and I am much more into Twitter now and much feedback can be found there too.

So if you are reading this blog, then I hope I am making sense :-)

So even now, can my blog help me see something that I might not otherwise have done? Well yes, it can. I had a brief Twitter conversation with someone (hi @hwganendodoc !) who had just found the blog, so it made me go back and have a look at a few of my early posts, these two in fact:

My hospital stay after my pituitary operation

The events leading up to my 2nd stay in hospital

So, post number 1 was a very scary time, no doubt about that. But although it signalled a difficult time for me, the overall feeling looking back on that time was that it was about healing and getting better. Getting better from something I barely knew I even had, bearing in mind I only had my MRI scan on 18th May and on the 28th May I had the operation to remove the tumour. All a bit of a whirlwind. But it was a positive period of time, fixing me up and looking forwards.

Post number 2 is altogether different. It is about living with Adrenal Insufficiency. The harsh fact, which I often overlook, is that my pituitary gland was damaged by the tumour and as a result will probably never fully work again. This means I do not produce enough of my own Cortisol and have to take Hydrocortisone tablets on a daily basis. I don't really think about it that much, pop some pills every day and that is that. I know that if I stopped taking the tablets I would get ill, which of course I wouldn't do on purpose. But when you get unwell, as I did in the events leading up to my 2nd hospital stay, adrenal insufficiency can turn something quite innocuous into something life threatening.

Now it really stops me in my tracks typing that last sentence, because I don't think of myself as having a life threatening condition. But reading back my post from that hospital admission and chatting it through with my wife earlier, really made me remember just how unwell I was. "All" I had wrong with me on the surface was a throat infection (sinusitis and pharangitis) nothing that a few paracetamol wouldn't cure. However, in a 'normal' person their body would also trigger a very clever endocrine system into action. The body would recognise that it was under stress from an infection and the pituitary gland would tell the adrenal glands to pump out cortisol and keep on doing it until the body reported back to the pituitary gland that all was well, and to pack it in (a feedback loop). However, my body didn't do that, so a simple infection put me in hospital. 

I realise now that the sickness and diarrhoea I had was actually my body not coping and having an addisonian or adrenal crisis. The fact I can't remember a fair bit from that day (so my wife tells me), the fact that when she spoke to the doctor on the out of hours service about what was happening he immediately phoned A&E and booked me a bed and told my wife to drive me immediately to hospital was a pretty big clue. The fact that when I got to hospital I was immediately put on IV antibiotics and fluids, that I also had hyponatremia and partial renal failure don't paint a particularly good picture of the day.

So what reading my own blog has helped me realise is that although I'm not going to worry about my condition any more than I have been for the last 3 years, I most certainly should not take for granted what needs to happen if I feel myself getting into an adrenal crisis. I carry quite a few Hydrocortisone tablets around with me and I carry my emergency steroid injection kit with me too. 

If you are still reading by now, and have adrenal insufficiency and you haven't got an injection kit - blooming well get one! This is something I have read quite a few times from patients, they have been diagnosed with adrenal insufficiency (even primary AI, Addison's Disease) and have been several months without an injection kit. I can't overstate how much you should get one. I've never had to use mine yet, but I'm guessing it will happen one day, or my wife will have to use it on me. If I had an injection kit way back in June 2013, would my outcome have been any different, who knows. Speak to your endocrinology team and I'm sure they will sort you out with a kit, don't rely on your trusty GP to know you need an injection kit, GP's are absolutely brilliant, but you may be the only AI person in the entire population of their patients, so they may not be as clued up as your endocrine team.

What I most certainly know now, is that after my first stay in hospital I started to recover quite quickly given the operation I had just had. But during and after my 2nd stay in hospital I felt really really awful. It took much longer to recover from an AI event than it did from major skull-base surgery. If that last fact doesn't drive it home to me then nothing will.

So there, that is another blog I've got off my chest.

For the 3rd anniversary of my pituitary tumour operation I shall raise a glass to the event from somewhere in the Mediterranean sea, on a cruise ship. 


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