I've just had surgery for lacerations to my lower half. As part of peri-operative care, my normal daily dose of 5mg methyl pred has been supplemented with four 500mg daily IV infusions of hydrocortisone.
I've had this for 48 hours and the surgeon now says I'm ready for discharge. However, hes unwilling tp wriye the discharge letter or TTA script until he's had advice on an appropriate taper from his endocrinology colleague. ("I'm a surgeon, not a doctor") This might take another 2 or even 3 days.
What advice/experience do others have of similar circumstances?
Thanks
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whisperit
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Sorry to read whisperit that you've had a big op but glad you are starting the recovery process. The surgeon is being a good doctor in wanting advice re your steroid taper from Endocrinology. Surely, it shouldn't take too long to get their answer if they're in the same hospitsl. ?.
I've had 2 surgeries this year , but not as big as yours, and have Addison's like you. I went home from both with a proper steroid plan for afterwards when they stopped the hydrocortisone. I know all you want to be is home but be glad surgeon is being thorough and attentive of Addison's. You must be safe first for going home because until we are , we're in their care!!.
I do hope whisperit you make a good recovery. TAKE GOOD CARE. Xx
I"m so pleased you had good care whisperit and i do understand your frustration as it does seem silly. Don't forget Addisons is quite a rare illness and not everyone in the medical profession knows about it!. I'm recovering well from the surgeries thanx and have had good results so far. Foot is slower than i thought it would be with more benefits to come .
Hello the lovely Misty - I'm still hanging in there. Had a rough couple of years with non lupus medical problems - but things are getting under control now.
I'm typing this - before a slightly higher dose of pred kicks in that's making me utterly bonkers - a short quick dose blast to try and nip a flare in the bud before it takes hold.
Hello lovely freckle, WELL DONE for coping with such a lot. I'm so glad things are improving now and i'll keep my 🤞that the increased steroid dose kicks into touch your flare symptoms. What would we do without them?. Becoming steroid dependent was a little extra i didn't really need but i've learn't to live with it now. Last couple of years have been similar to you dear friend. I'm recovering well from 2 ops this year.
Will be finding out in a few weeks if i have a liver problem to add to the auto-immune mix!!. 🤞i don't.
Do hope you feel better soon and pop up when you are able. Xx🤞❤️💐🙏🦋
Thanks so much Misty. It looks like we've both been through the ringer. I hope things will settle at least a little for you.
I'm sorry to hear you're stuck on the steroid cycle now. At least there's some ' highs' to be had.
One operation and another illness diagnosed on top of the lupus has left me spinning a little but I'm OK.
I'm in the - winding down out of the frantic - fighting Doctors and
illness mode. It's very hard to turn off the hypervidelence when it's time.
I'll keep an eye out for your posts - and please don't hesitate to contact me if autoimmine hepatitis becomes a problem - I had it many......many years ago.
Thanx so much lovely freckle for your very kind offer of help. I hope i don't have to take you up on it. 🤞 I do so appreciate it though. I'm really sorry you have another illness on top of the lupus to cope with. As if you haven't enough !!. Can i ask what it is and i do hope its very treatable. ?.
I do so understand the change we have to make in dealing with all these illnesses. Suddenly we're no longer needing to fight doctors for recognition and help. It takes awhile to adjust specially when we're used to fighting for help for years like we both have. You"ll get there freckle, it takes time but i truly think we can't completely lose being vigilant of our bodies. It comes down a notch to vigilant rather than hypervigilant maybe?. Would you agree?.
Anyway, do hope the extra steroid is helping and i'll look forward to you popping up when you can. I've never had a steroid 'high'. TAKE CARE, lovely freckle. Xx💐🤞🙏🍀💕
Hello Misty 😊Thankyou for asking after my other woes and your words of encouragement.
It's in remission now - but
from March last year I've been getting treatment for breast cancer.
I've got to admit when I was first diagnosed I was so PTSD -ed out from Doctors, (bullying) and fighting that I almost decided to take the advice of a local surgeon - and not fight it as the odds weren't great - but thankfully someone spelt out that I shouldn't let bully's actively contribute to my demise. It got me angry enough to keep going.
It was also a horrible leap to choose to go into some agressive chemo - with the chance I wouldn't emerge through to into wellness again - but now after this, surgery and radiotherapy I'm 'here' again.
I think you're absolutely right about vigilance - I had two GPs tell me I had a breast infection ! 😖 I think they both must have had vision problems.
Hello dear freckle, i am so sorry that you had to cope with breast cancer and a lot of debillitating treatment. Life seems to be so CRUEL to people who least deserve it!. You are so BRAVE and STRONG to come thru it. I would have been so scared like you were at first. I do HOPE you stay in remission for a long time. 🤞That's always the worry now isn't it?. Is there breast cancer in your family and how are they doing?. I've just had my leg injections at the hospital so hopefully i've had a good result. Don't know immediately.
Look forward to you popping up as and when you can. TAKE CARE. Xx
Sorry - I'm going to be of no help whatsoever to your question - but just thought I'd say a big hello and hope you can escape from hospital soon.
It sounds very frustrating.
I don't know how functional the medical system is in the UK at this point in history - but I'm relieved to hear your care has been at least cautious and safe.
We've had huge health funding cutbacks here ( Victoria / Australia ) and I've never seen a medical system so dangerous or as abusive as right now. It's been such a fast and breathtaking decline across the board - even wizened old patients like myself are horrified at the sheer aggession spilling over at every level.
I hope you're not just putting on a brave face and you are been treated well ?
Thats a kind thought. Im well into the familiar iatrogenic pathway now, post-surgery. A lot of pain that's treated with opiates; -> opiates causing nausea and vomiting -> can no longer take oral meds -> need iv meds - > run out of viable veins - >etc
So its a bit horrible right now and the drs have come up with reasons to keep me in....
Still, the staff really are good.
Interesting , and sad, to hear from the situation in Oz.
Yeah - we seemed to survive the post covid medical / social chaos - but now money's shorter across the board -inflation / lack of housing etc. the human reaction to it is a tipping over -
I'm sorry you're reaching such a low point in hospital right now. It sounds very confronting. I had a few stays in hospital myself last year - one with an infection I wasn't sure I could beat. It's a pity we can't go through these more frighening things at home.
After only 4 days of a raised dose - however high - you should be able to drop back to your base dose without tapering. It is no different from using an acute course of steroid in other illness which may be 40mg pred per day for 7 days - in asthma for example. It isn;t long enough on its own to affect adrenal function.
I don’t have anything valuable to add regarding steroid tapering but wanted to say hi and send hugs.
It sounds like you are getting good care. I wouldn’t want a surgeon who discharged me without getting advice from the endocrinologist if I were steroid depend. It seems you are still in a lot of pain, too, and you may be better off cared for in the hospital since you are vomiting from the narcotics. Maybe they can adjust your medications. I am sensitive to those pain medications too.
I know it is a hard situation but try to focus on getting better. You have lots of friends here!
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