March 2015 - Update and NHS musings

Hello there, not been around for a while, so time for a bit of an update.

I was chatting to someone at work recently about my condition and how it affects me, it has been a while since I have taken someone through all the things I've been through and how a lack of Cortisol shapes my life. It makes you rethink some of the aspects of life and how I now come to accept the way I am and just adapt my life. It's what anyone would do. But it also made me think how lucky people are with a working endocrine system who just make the Cortisol they need.

I've noticed this a bit lately because my wife and I have been doing a lot of chasing and hard work trying to sort my dad out with a nursing home, more on that later. But the stress of juggling all this along with day to day life, and work has taken its toll. The week before last I had a weeks holiday and it was spent chasing all over the place. For a person who makes their own Cortisol their body just adapts and makes what hormones it needs, of course everyone gets physically and mentally tired during hard work and stress, but without that surge of Cortisol I get an extra 'foggy' feeling that is hard to describe. I get a fixed dose of Cortisol by taking Hydrocortisone tablets and once that dose runs out, it has run out and my body isn't able to make any more. Most of the time I can manage it by taking a tablet a bit early and having a quick rest, but this isn't always convenient, and equally I can't just up the dosage willy nilly. I have done on occasion when I know in advance I am doing something particularly heavy going, like last summer when I was doing a lot of physical gardening....certainly a small extra dose does work. But I hadn't expected the mental stress of sorting my dad out to have the same effect. But you live and learn....it is a bit of a pain in the bum, but that is just how I am made up now.

On the subject of dad, it isn't an enviable task to have to undertake. To have someone that has always been independent and lived on his own, even after mum died, to then have to consider putting him into a care home. He had two strokes (blood clots) on boxing day 2014 and was admitted to QA Hospital in Portsmouth and hopefully this Tuesday 17th March 2015, he will be discharged to a nursing home where he may end up permanently. He also has Parkinsonism (like Parkinson's Disease, but with added complications) and the double-whammy that these two conditions have, along with a small dose of dementia means that Dad cannot go home and live on his own. 

The care in the stroke wards in QAH, latterly Ward F3, has been exemplary (the whole team, nursing, O/T, P/T etc.). The team there are specialists in caring for people with strokes and they really seemed to know what they were doing. The experience wasn't 100% perfect and we had a bit of a hiccup with the discharge planning team....this is where it is so hard as a family with someone in hospital. The patient gets to a point where they don't need to be in hospital from a medical point of view, but the patient cannot go home and needs a care home. The nurses won't kick your relative out on the street, but at the same time they have massive pressure to free up the bed for the next patient. It is an incompatible set of stresses. We had an assessment on dad from the discharge planning team that we didn't feel was entirely fair, and sure enough the multi-disciplinary team went away and re-assessed him. But at that point, the firm guidance was dad needed a "care home". So we duly went off and viewed loads, and got our preferred one to assess dad to make sure they could meet his needs. They decided they could not, because of his mobility.

Then in the midst of this, dad caught Norovirus and this set him back a couple of weeks because no care home could assess him during this time, and in any case the hospital could not discharge him. But when he was well enough again, the pressure was once again on to discharge him, and the planning team were on our case to find a home. This time the firm guidance was that he needed a "nursing home", because his mobility needs were so variable, on a good day he was care home, on a bad day (unable to move on his own) he was nursing home. So off we went to view loads of suitable homes, and we've found one we love, and hopefully come Tuesday so will dad. Some of the nursing homes we viewed were a bit grim.....seeing the people there in such a poor state of health, not nice. The other aspect is money, £1,000 per week for your care, that is serious money. Bang goes dad's savings and probably his house value too. But at least the lovely place we've found him, will mean he gets to spend his money on somewhere lovely that will hopefully look after him well and his last (no idea how many) years will be spent in comfort.

So nursing care on F3, brilliant, discharge planning, not perfect. Difficult pressures to deal with though (need the bed, but can't just kick the patient out), but hopefully we weren't too difficult a family to deal with.

Back to me briefly, other than Cortisol shortages everything else is still on track. I am still outstanding some tests on my left eye, as mentioned in my last blog. I have kind of blocked out the blurry eye thing, in that if I don't think about it then I don't notice it. But it is still there. My Endocrinologist doesn't feel confident that it is pituitary tumour related, because that damage should have been evident straight after the operation....but I don't think it was. So we will have to wait and see what the tests show, whenever they are. I've had an endocrine checkup a few weeks ago, and that came up all 'green', so that is good. So some eye tests and then another MRI scan to check tumour status to come.

That's me for a bit.....all the best :-)