Recovery from surgery is meant to be ok, recovery from Cushing’s… not so much. So I’ll continue to document my journey as I can and hopefully it will help give hope to others suffering and help me on low days to look back and realise how much better things have become.
The first week for me was mainly spent in hospital. My surgery was on a Sunday and I stayed in until the Friday although I could’ve gone home a day earlier but I’ll get to that.
The aftermath of the surgery itself was fine. I had little pain, just a constant headache as if I’d had a very stressful day at work. I mostly survived on paracetemol though one of the nights I had to have a dose of Oramorph. I think this was when I was doing 24 hours off my replacement steroids though so my body was in withdrawal. I did also end up low on potassium so had to have some huge tablet dissolved in water twice a day for most of the week.
In some ways being in hospital was nice. There’s a daily routine, friendly nurses and staff and you don’t have to worry about anything as there’s always a professional close by.
It wasn’t always the greatest of course. You can’t get a night’s uninterrupted sleep due to the vital checks every 4 hours and everyone’s buzzers going off; even in a private room with the door closed I could hear the alert on the nurses station. I was also under strict fluid intake; no more than 1200ml a day and my urine output was being measured so I had to do everything in a bedpan then call someone to remove it. They just loved that; it was the only thing I ever buzzed them for so they knew what they were in for when they responded!
There were also the continual stabbings with needles. There was a daily blood draw. 3 of the days I also had a blood sugar check. Then there were the Cushing’s specific checks. I had a cortisol level taken on the Monday as well as the usual blood draw and one on the Thursday along with the usual draw. This however led to me staying in for the extra day as it led to a mistake.
I had to go 24 hours without any steroids so they could see what my cortisol levels were. Less than 100 would mean I’m barely producing any and therefore successfully in remission. I was woken up at 6.30am by a specialist from the endocrine team to take my blood and that was that. I was allowed to take my steroids immediately following this. The usual phlebotomist came round about mid-morning and I said I’d already had it taken but they insisted on taking more.
This is where it all went screwy. Normally cortisol wouldn’t be tested in my daily blood draws but for some reason it was on this one. Also for some reason the later lot of blood got analysed before the earlier lot! My endocrine doctor was of course only looking for one result so when she got one back with a cortisol level of 252 she came to give me the bad news that my surgery hadn’t worked. My surgeon was going to Greece over the weekend to give a talk on CSF leaks so they’d keep me in and I’d have a second surgery either Monday or Tuesday. My heart sank.
By this time my Mum had come over from France so she was there for the news as was my boyfriend. We were all disheartened and upset and I didn’t want to go through another surgery. It was easy and painless enough but the less someone pokes about in my head the better and there are always risks when being knocked out.
The next morning my doctor came in to tell me about the mess up. The original blood draw had come back and was perfectly fine. 38. The surgery was successful and I could go home that day. An MRI had been ordered but she’d cancel it (it turns out the cancellation never went through to the department so I got wheeled off for one anyway). What a nightmare!
Going home felt great but scary. Suddenly it was all on me; what if I went into adrenal crisis? Would I recognise that? Would my local hospital have a clue how to treat me? I missed the routines and the safety net of the nurses but all the same it was great to be home, in my own bed, with my own books, able to see my pets. Mum was staying with us for a few weeks so she was cooking for me and looking after me (highly recommended!) and I continued my hospital routine of sleeping for large chunks of the day. No more needles and no more bruises!
Speaking of bruises, here they all are. The worst was from the arterial monitor they put in my wrist. I had tons of bruises from all the blood draws and cannulas but they all faded pretty quickly. All bar the one that the anaesthetic went through. 12 weeks on and I still have a tiny scarred spot there.