Post Cushing’s surgery – weeks 9 – 14

I’ve extended the range on this one as that takes us neatly to the end of 2019 and only a week past the official 3 month mark of my surgery.

Week 9 I’m still really struggling with waking up and sleeping until midday. The aches haven’t gone at all but I haven’t gotten any worse with tapering down 5mg of my hydrocortisone so that’s good. I’m also now down by 17lbs.

I got the official numbers from my SST and my pituitary gland isn’t even close to waking up. My baseline was <28 and after injection was only up to 42. They want 300 or 350+ to say your pituitary gland is fully working again! This got me a bit upset as I just want to be off the steroids and not have to worry about adrenal crisis’ but my support group dug out recent studies that show people whose glands wake up before 1 year are more likely to have a recurrence.

Week 10 and I’ve lost 20lbs! My fat percent is also down, from 40% to 38%. The aches and pains still continue. I’m mostly ok during the day but sometimes at night if I go to roll over I grimace in agony. It’s mostly my lower back, particularly on the right hand side. My appetite is still low but I no longer have to force myself to eat, I just don’t want a lot. I did manage to stay up 4 mornings this week somehow. Once was because I had to due to a hospital appointment for my elbow (another post about that at some point) and that was all morning. The other 3 times I did have to go back to bed at either 9 or 9.30 but it was still something.

Walking is still a real struggle but me and my boyfriend used to always visit a friend on a Saturday so we’ve started doing that again. It’s not too much of a struggle as he picks us up so we get the lift down stairs, just have to walk across the car park and then it’s simply hauling myself up his stairs at his house. Hauling is definitely the word, grab both banisters and pull my weight up!

GP appointment in week 11 for my potassium results and my levels are back to normal thankfully. However as the endocrinolgy nurse had suggested one of my blood pressure meds could be causing it and I’m due to see my blood pressure endo in January, my GP said to try dropping the one med. I still take my blood pressure regularly so if it starts to spike I can go back on it quickly enough. I didn’t notice until now that my stretchmarks have gone light silvery instead of the glaring red/purple they were with Cushing’s. The GP also noted how much thinner my face looks and that the redness has gone.

I had some stomach pain over the weekend, sore to touch mainly so she had a feel around and thinks I have a hernia caused by the weight gain. Thanks Cushing’s. So she’s booked me in for an ultrasound and told me what to look out for that would indicate I’d need to go to A&E.

She was also due to give me a flu jab but she wasn’t certain with me being on steroids and there was no one there she could ask. I did say other Cushie’s have it but I’d rather she is certain herself.

Week 12 is a good week! Well Monday was a bit mixed. It started with going back to the GP for my flu jab which I didn’t feel faint at; I seem to have an odd thing where you can take stuff out of my veins no problem but try to put it in? No way, going to get light headed and queasy! I was also meeting a friend for a meal out in the evening, only “over the road” at Chiquito’s. It’s pretty much opposite my flat but the opposite side of a canal so ordinarily it would be a 10 – 15 minute walk. Well it took longer than that but I managed it on my crutches, something I haven’t really done since surgery! However later that evening our pet degus started fighting and in an effort to separate them I grabbed at one and got a bite down to the bone. I was not happy!

Still, the good stuff continued as I had another doctors appointment on Thursday and walked to the taxi and back without my crutches. That is something I haven’t done in 9 months. I’m also now down by 25lbs to 175lbs and my body fat is 36.1%.

Week 13 I managed to get into the office at work! It wasn’t for work, it’s because I’m an idiot and had something delivered there instead of home. So I decided to try and pop in one morning which involved walking to the bus (used my crutches as I knew it’d be a long, tiring day) which is half the distance to Chiquito’s and then I’m dropped off right outside the office. I knew people would want to see me though as I hadn’t been in since July so I spent about 2.5 hours chatting. This involved a couple of trips in the lift but also a trip up and down one flight of stairs. Luckily I got a lift home. Since I’ve been sleeping til midday still I was obviously exhausted after this.

Week 14 and the final update of 2019! So here are some comparisons from the day of surgery to now:

Sleeping – Just after surgery I was getting up at 8, going back to bed as soon as meds were taken, get up at 12, go back to bed around 2, get up at 5 and stay up til 10. Now I do meds at 8, go back to bed, wake up at 12 and stay up until 10.

Weight – The day before surgery I was 200lbs. Now I’m 171lbs with no effort. Body fat % was 37.9%, now it’s 33.9%. Stomach feels far less bloated in general; today in bed I noticed lying on my back it is flatter even if I still have 3 stone to lose. Collarbones are still hiding but I can feel them under the fat now.

Stretchmarks are practically gone. No more red face or spotty skin.

Blood pressure was sort of under control on 2 meds. Now it’s on the lower end of normal on 1 med. Resting heart rate has come down from the high 90s to mid-high 70s.

I shaved pretty much everywhere 2 weeks ago. Not much has come back. Beard is still hanging in there but much lighter!

I no longer wake up every hour to wee. I’m struggling more to get to sleep in the first place but once I sleep, I sleep!

I still struggle with words and brain fog but less often I think.

Walking is still a big task but I’m back to getting as far as I was on my crutches pre-surgery. I’ve managed to do the drying up a couple of times after tea. Through December I’ve hit 1000 steps nearly every day. I still ache a lot but less than I did. I have to find that balance each day of not sitting too much but not moving too much either.

I’m planning on attempting a return to work in Feb after I went off sick end of Jan 2019. It’ll be short hours to start with of course and I’m fully prepared that it may be too soon.

I intend to slowly increase my steps each day. I have 3 major health goals for 2020 which all revolve around events. I want to be strong and healthy enough to go to the Discworld Convention (August), see Celine Dion (September) and get back to my clubbercise class (whenever I possibly can).

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