Oh dear! Bloods done this morning, and wasn't expecting results until clinic on Monday. However, consultant rang at 6.30pm to say they are still rising and now well on the way to 400 (ALT) AST not in yet. She wants me to continue with 40 mg pred until Monday, when she will do bloods again and some further tests. She is now wondering if its a virus I've picked up that is causing this................call my cynical............but that's what they thought in August!! If not, then probable repeat liver biopsy. Stuffed my face with cheesecake........would like to say I feel better........but now have indigestion. I did, however, try healthy Greek yogurt at lunchtime (0% fat)...so am sort of trying. Weight going up as fast as liver enzymes. Do I look like I'm bovvered??
Seriously, am feeling very anxious about this.
Hi penny, not sure if this will help any but when I was in hospital in jan my consultant said to me that she had been going over my blood results and she could see that over Christmas I had been fighting some kind off infection, this was when my alt had gone up too 500, at the time we just thought it was the steroids not really working, twelve days later when I got bloods taken before starting treatment in hospital they were down to 360 the lowest they had ever been while on budesonide and she wondered if she had been a bit hasty in bringing me in, I never gave the infection bit much thought as I hadnt been unwell but when you mentioned it I though there might be something in it, sorry if this is all a bit off a ramble I just wanted to share my thoughts with you, it would kinda off explain why the steroids that worked great on you before were struggling now, I really hope it is something as simple as this for you, try and enjoy the rest off the weekend, I know you will be really worried about tomorrow, take care will be thinking off you as always xx
ReplyDeleteHi colleen, never apologise for rambling........all ramblings welcome. Just don't know what to think anymore. How you feeling now?
DeleteHi penny, still feeling the same to be honest, still getting the discomfort in both sides and my back, had another hellish headache last night that was still there this morning, I can only think that it's the mycophenolate as I was feeling fine on just the budesonide, got a meeting with my work tomorrow morning to see about starting back at the beginning off march, I've worked with them for the last 19 years so I really hope that counts for something, my job is quite busy, I am a cook in a nursing home for 40 elderly patients, maybe see if I can do some half days to start with as a normal shift is 8.30-5.30 don't think am quite ready for that yet, will just have to wait and see, hope your starting to pick up a bit, take care xx
ReplyDeleteSorry you're still feeling so bad. I really hope the mycophenolate isn't doing this to you. They still wonder if thats what happened to me. I was on it 5 weeks, and now off 2 weeks, I guess it takes a bit to get out the system. I'm so impressed you are going to give work a go. You can't possibly do 8.30-5.30pm though, being on your feet will be exhausting. Try hard to get just a few hours initially and see how you feel. I have to say, I was exhausted within 4 hrs! As you've worked for them for so long hopefully they will be supportive/flexible. I'm a mental health nurse and have worked for years in nursing homes, so I know how demanding it can be . Equally, it can be really cosy/friendly and supportive like being part of a family. I'm sure all your residents have missed your cooking (not to mention the staff!) and will be keen to have you back. Just be careful, we all seem to think we can just return to normal, but as Jo keeps saying, it takes time and you must pace yourself! Very best of luck with the meeting, remember to give them as much info as poss so they can understand the stamina factor xx
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