Monday, 17 February 2014
Seen in clinic this afternoon. Pred reduced to 30mg as it doesn't seem to be doing anything useful anyway! More bloods taken including a viral screen. results of that will take at least a week. More bloods on Friday, back to clinic Monday next week..................and so it goes on...........No nearer knowing whats happening, but remain shattered and without any stamina. Joints aching, brain not working, stomach constantly demanding to be fed. Biopsy looming methinks. Very fed up with it all.
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Hi Penny, I have just read Colleen's post about the possibility that your flare up could be due to a virus and it reminded me that when I was going through the mill before diagnosis, I was found to have a viral load for CMV. ( Cyto Megolo Virus) Google it. It is something many of us have but it only flares up when you are run down etc and it can cause ALT to rise. Steroids will cause it to get worse, which is why for a number of weeks I wasn't initially prescribed any meds.When my levels shot up from 943 to 2165 the CMV level had thankfully dropped to less than 10. I was hospitalised and on IV Steroids of 300mg a day which kick started the alt into coming down enough for me to be sent home after 5 days. This was when the AIH was diagnosed as rthe biopsy was inconclusive for me apart from showing very acute inflammation. I have always wondered if it was the CMV virus that started my AIH. This is a bit rambly but may be of interest to you and something to mention to your consultant. They do not always know a great deal about AIH. It may also be worth suggesting that they write to Kings College Hospital about your case. My consultant has done this about me a couple of times over the years and they are the real experts. Try and keep positive, it is so unfair and rotten for you. Keep resting and I hope for good news for you both very soon. Love J xx
ReplyDeleteHi Thanks for this. Sounds like a possibility doesn't it? Most of my tests get sent to Kings, so I think they are in regular contact for advice/guidance if needed. They seem pretty confident and I have confidence in them, but I will try and check without offending them if I can! I'm seeing proff Cramp next week, so will go armed with lots of questions. x
DeleteHi Penny.My name is Emma i see proff cramp at Derriford.He is well known and actually used to work at kings.He is very good and im sure he will get you on the road to recovery.I've had this now since i was 18 im now 27 I've had many ups and downs along the way, its a strange disease that i suppose until this day im still in slight denial about. I was on 60 mg of prednisolone and put on 2stone but was told most of this is water retention.Just listen to your own body and rest when you need to. im hopeful that when you see him things will get sorted.Im off to see him tomorrow. Xx
ReplyDeleteHi penny just wanted to let you know how my meeting at work went,well basically I've got a three month phased return doing two days a week, I have to do the full shift as this is what's best for the home, at the end off the three months I've to be able to return to full time hours or they've basically said there isn't a job for me,I was totally gutted I don't think they realise how serious this illness is, they then had the ignorance to ask me what risk I was to other people well at this stage I could have just cried, I explained that I was off no risk to others whatsoever but I was putting myself at risk to infection, to say I came away feeling absolutely terrible is an understatement, I don't know where to go from here and am now terrified I will loose my job, I just hope and pray that I get stronger everyday and am able to do what is asked off me, hope you are feeling a bit better, take care xx
DeleteOh Colleen this is outrageous! The ignorance around this condition is astounding........and as healthcare providers, they should know better. Are you in a union? Did they put their plan in writing? Were you offered to have someone with you at the meeting.......or is this just informal "chat" at the moment? If you want to talk please email me and we can swap numbers. pjsmith1965@hotmail.co.uk I think you will find that having this "lifelong condition" gives us some protection under the disability discrimination act for the purposes of employment, but I'm not sure what the employer has to be seen to do. I think they have to "consider" you under the act, but if the illness means you can't perform your job, they maybe withing their rights to "let you go". I would have thought that working for them for 19 years would mean they valued you enough to at least have the decency to become informed about the implications of the illness. Surely it would not be unreasonable for them to give you just say 3 10-2pms a week initially?? Feel soooooo angry and upset for you x
DeleteHi Emma
DeleteThanks for your comment, glad to hear how highly you regard proff Cramp, I do have faith he will sort this out. Hope you get on ok tomorrow! x
Hi penny, feeling much calmer about things today, going to go to citizens advice next week and find out where I stand as we don't have a union, also got an app with my gp so I will see what she thinks about the whole thing, the person taking the meeting was the operations manager and I know she was looking at things purely on a business level, am also going to arrange to go in and Speke to the actual manager off the home as I feel he may listen to me better although I've never met him as he started while I've been off, just hoping he will be more understanding towards the illness, anyway enough about me how are you doing is there any improvement? Thanks for your e mail I will take note off it, unfortunately mine isnt working at the moment and I don't know enough about it all to fix it myself so waiting on my brother in law but as soon as I am up and running I will be in touch take care xx
DeleteSo glad you are feeling a bit better about things. CAB are really useful for these situations, I hope they can point you in the right direction..........have been thinking I ought to get in touch with the RCN for guidance soon, as like you, I'm not sure where this is going to lead. (Jo, if you're reading this, what do you do, and did you have difficulties with employment? Are you able to give us any pointers?) x
DeleteHi, Penny, that is good that you are seeing the professor, Make sure you write down your questions as it is easy to forget when you are actually there in front of him! I am sure too, that he will help with your AIH. Now, this sounds a bit anal but I have made a chart to record all my blood levels from day one........... I know!!!( I could email a blank one to you if you like?) It is good for whenever you have appointments and for your own reference. Colleen, I am so sorry about your work situation, how disappointing after all the years you have been working there. It also reinforces to you of what a pain this illness can be until it is under control, which is a downer too. I hope something positive is sorted for you soon. With love to you both Jox
ReplyDeleteHi Jo Hooray!!...........someone more anal than myself!! yes please feel free to email . I have a notebook with as many results/dates etc that I can manage, otherwise I just can't keep up with what happened when etc. many thanks x
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