Hello - hope everyone is as well as they can be 😘😘
We are having some problems with Robs 'tacrolimus' - he forgets if he has taken it and we have said that 'I' will give it to him and then he says 'he has already taken it' and then asks hours later if he has had it ??????
Does anyone have any experience with 'missing doses' or 'not taking enough' ??? We have already experienced 'tacrolimus toxicity' so I know it isn't that - but for past few weeks he has been complaining of 'not feeling right' and has also hurt his back so is taking several pain medications - not sure if I should be worried or not ❤️❤️❤️❤️
Not an answer to your toxicity question, but if it is in capsule form, can you put a week's supply into one of those pill boxes? Maybe that way there would be no confusion as to whether the day's dose has been taken or not. If its in the day's section, its not been taken, if the day's section is empty ... it has. Some of them will cater for up to x4 doses per day every day of the week.
I have tried that - but because he still has these bouts of 'confusion' he will take Wednesday's on Friday - then he asks 'have I had it' ??? I think I am just going to have a major argument and hide all tablets and lock them in my secret cupboard (he used to do this before transplant) - he gets really cross though as he wants to be 'independent' but I just don't trust him to take them properly 😓😓😓😓
I can't say with any degree of authority - and I'm sure you know this but with tacrolimus (and most immunosuppressant) the first few doses build up a level and then the daily dose maintains it. If missing doses or taking them at really odd times then that would impact on blood immunosuppressant level.
I know when I've changed my med levels that I've felt "off" for a while - so I wonder if perhaps changing blood levels of tacrolimus may not be part of the issue. That said of course strong pain meds can definitely have an impact too.
Sorry can't help more -did look but couldn't find anything specific online.
In case it helps though, I did buy this and it's quite good. Each day has two compartments (am and pm) and is numbered 1-31. The little boxes come out so you could just issue one per day - and you know if the tabs are still in the box they've not been taken. I found that plus a single phone alarm asking if I've taken them means I remember to take them or get nagged by the phone before it's too late. It's not all that big though.
Thought my husband was the only one who has a phone alarm set at specific times daily to remind him to take the meds! only thing is the ring tone is so annoying and bleats on and on that i soletimes turn it off and then forget to remind him!
No I tried the alarms for different meds, I kept ignoring it too - but I mostly muddled through. What I do now is knowing I have to take my meds within a window of a few hours, I have a single alarm set to a little bit after that - then all I have to do is check the dispenser if I'm not sure, and if I have missed one it's not too late to take it. So given that I take my morning meds between 8-10 I set the alarm to 11 to check - which coincidentally is tea time!
I think that's probably the best and very good idea, setting the alarm as a reminder of "have you already taken them?" rather than " It's time to take them!"
Thanks all for those suggestions - I will attempt the reminder but he often hides his phone or just ignores it xxxx
I must be odd because I feel that 1 year after transplant he should be able to manage these things ? Not much has really changed since transplant - he spends most days in bed all day and wakes about 7pm - talks rubbish and forgets everything 😓😓😓 Perhaps I am expecting to much x
Not a good start considering you only had your transplant in June 2014 Get your act together it's really important that you maintain your level is at all times and also bare mind that you are going to take these drugs for the rest of his life . Apologies for being so blunt but it's important! I had my transplant 5 years ago and I had to make life changes and make sure I take my tablets...😇
I thought that 'Poole' was referring to 'myself' as having had the transplant (as that's how it read) - I was just correcting that it was my husband that had been transplanted 😘😘
Oh no you were totally fine - I was just making a very very silly joke that just because you haven't had the operation doesn't mean you shouldn't be taking the meds. Pure silliness - and I read his post the same way.
On the subject of Rob and stating the obvious - it's worth getting the doctors to review what's happening. Hopefully it's not
Actually the rest of my post got cut off - which is bad since I type so badly...
What I went on to say was that hopefully (and I'll keep everything crossed) it's not an issue with the liver but with the fact that he's been through a great deal and is still in the aftermath possibly having some psychological repercussions or maintaining some habits from pre- transplant. For example sometimes when very tired I wonder if it's physical or psychological - i.e. sometimes I've had enough and want to duck out for a bit.
Also given that it sounds like he may be sleeping through a large part of the day he's likely to be low on Vitamin D and his seratonin/melatonin production will be all over the place - all of these will affect energy, mood, performance and give depessive effects - it's a bit of a cycle. I go on about seratonin/melatonin quite a bit but the science is sound. If you're really bored but want to know if it's possible to be more bored I go on about it in this post...
In relation to your original question I can't see how not maintaining immunosuppressant wouldn't cause problems - but it would depend on level and antibody activity. I know it takes 12 weeks for levels of Azathioprine to get to the effective point which are then maintained. Tacrolimus may be shorter possibly I can't say but without an effective fighting level of immunosuppressant the immune system is primed to go after the new liver - so it could well be affected and affecting him - in any case a lot of the manifestation of being ill is actually the immune response - having a cold for example - most of the horribleness comes from the immune system rampaging around to clear the infection.
Sorry if long and not particularly helpful - it may be a combination of meds, depression/post traumatic stress and habits and physical issues.
Rob has not fully recovered as most transplanted patients do. If you follow 'Robswife' posts you will see that he is suffering with lots of conditions since his transplant and his wife has been in and out of hospital with him constantly. I know how much she has supported her husband through this terrible post transplant year.
Robswife was trying to ask if anyone else had this issue with this particular med.
I'm not quite sure what you're talking about the original question
We are having some problems with Robs 'tacrolimus' - he forgets if he has taken it and we have said that 'I' will give it to him and then he says 'he has already taken it' and then asks hours later if he has had it Does anyone have any experience with 'missing doses' or 'not taking enough' ?
Robswife is basically asking if anyone has had issues with missed doses or taking too many since it is obviously the case that she is struggling at the moment to get her dear husband Rob into some sort of regime with his tablets.
He is determined to be independent yet due to ongoing issues with the mental health side of his liver ill health (still going on post transplant) he is either missing doses, mixing up days and perhaps taking too many. When she suggests taking over the regime to support him it is obviously being met with resistance and obviously some very strong resistance.
She is also asking for suggestions as to what she can do to help him get into a regime.
If you've been around long you'll have seen the horrendous journey this couple have been on to get this far and she was only looking for a little advice and support and really doesn't need shouting at & neither for that matter does her husband but as we've found out on here people who have been through or supported loved ones through similar can often offer some sort of suggestions as to what worked for them.
If she's that concerned she should be talking to the specialist and not putting it on a public forum where she will get Positive and Negative views I have been through this process and when I have asked for help I have always got it........
'Experience with not taking enough' - that was in the hope that if someone had omitted their doses of immunosuppressants for whatever reasons - did they have any symptoms ?
In the nicest possible way - I have tried everything (apart from the phone alarm) - covert drug administration is somewhat illegal and although I am a wife - according the 'code' as I am robs caregiver I also have a duty of care to him as my patient (not just my husband) 😘😘😘
😘😘😘😘 I sent you message - I am so sorry I got very carried away 😂😂😂 it has been very therapeutic tho ❤️❤️❤️ even if you don't read it - I feel much better after writing it xxxxxxxx have a lovely day xxx
I think that if you are doing something on a regular basis, it is easy to forget you had done it. In order to combat this I make sure I take my tac on waking. Deciding on the daily time to take it and setting an alarm might be helpful to keep 'regular' if you cannot do it on waking.
Hope this helps.
Martin
There may be some merit in you overseeing his dosage for a time. I know it is against the aspiration for patients to take personal responsibility, but clearly he is not capable at the moment.
The other issue is, perhaps, something you can do more about. I think it would be a good idea to talk to your post transplant team about his general health and his mental health. There may be more support around than you think.
Mike
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Thanks xx I have - I have been questioning his lack of 'wellness' since day 1 - we thought it would dramatically change everything - all they say is 'livers working ok' !!!!! So not much else I can do - would be nice to kick him out of bed every day and lecture him constantly but it's not a nice way to live and I am sure he isn't 'putting it on' xxxx
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I'm sure he is not but it is clear that something is not working. Post transplant care is not only about a working liver and the transplant is expected to produce a return to a reasonable quality of life - something that Rob (and you) are clearly lacking. I would be tempted to ask for an appointment with them as soon as possible. Use non-compliance with tacrolimus as the way in if necessary and push them for referral to other services if they say it is beyond their sphere of competence. You may have to go back to your GP for that.
Yes, Mikes right. He should be feeling much better. If the livers Woking the maybe it's something else.
As far as taking drugs on time I use a pillbox and I found a really handy phone app called Medisafe medisafe.com I'd advise anyone who has to take melds to use it. It's brilliant.
Omg !!! I am sorry - I wanted some advice 😫😫😫😫😫
Do you know what - I give up !!!! You have no idea what we have been through - but don't worry I shall 'force feed him' and hope I don't get a punch for my trouble 😓😓😓😓😓😓😓😓
As you seem to be having A lots of problems you really need to speak to your transplant coordinator they have been a great help to myself and I am sure they will be for you I have an idea how he feels one minute you are being told you may not be around anymore then you are told you are now ok and enjoy the rest of your life
it takes a lot to get your head around this I know from experience.
Mike has developed symptoms similar to HE he is 3 and half years post transplant.
We have been back to Neurologist who has confirmed he has some Neurological Issues.
Pre transplant we were told (in his case) that there was a possibilty that there had been some permanent damage, which has now been confirmed.
That is why I am asking did he have HE. There has to be a reason for his confusion and it needs looking into urgently. When is he due back to Post Transplant Clinic? Maybe it should be brought forward.
Yes Rob had quite severe HE - I think we have compared notes over the past year or two 😘😘😘😘
He was booked in for EEG at Kings but was admitted to local hospital with Biliary sepsis 😢😢 so it was cancelled and they will re-book it again when he eventually has 'scar revision op' (hopefully admitted later on today) 😄😄
I definitely think it is similar to HE but nowhere near as severe - and he doesn't seem to be as aggressive - it's more verbal 🙊🙊 he doesn't wander or disappear 😄😄
It's the fatigue and forgetfulness and then the anger when he has forgotten things. It's such a shame as that was most definitely the worst part of him being ill before transplant.
I am sure that Robs will show some permanent damage xxxx have they given any ideas on treatment or how to improve ??
I think the clear assumption is that post transplant you shed all the pre transplant problems. HE already is brushed under the carpet pre transplant so having HE or symptoms like it would be even more difficult to address. I think Mike and Carmik are right - they need to look closely at what is going on here... Sometimes it helps to have someone like a mediator go with you to appointments. I have read somewhere that you can ask at the local citizens advice and they will guide you. Just sometimes it all can be so overwhelming... I've only recently heard about this and wished it was around when I was going in before...
Pear darling ❤️❤️❤️ got to bbq 😢 will speak later - hope all going well and DNs have been 😘😘😘😘
Hello 😅😅😅 my concern was (and the question which I obviously did not make clear)
Does anyone have any experience of NOT taking advagraf and what symptoms did they have ????
I have been a member of this site for several years and have received wonderful advice and support 😘😘 I have spoken with some wonderful people and hope that through MY experience as a carer and RN I have been able to see offer help and support to others - I have developed some very close relationships (away from this site) which I cherish for their support and I care deeply for these people and hope that I have helped them through their on-going problems in some way.
Unfortunately - quite recently I have read some very negative comments and what I consider to be 'nasty' comments upon posts - this is a site for 'help and advice' and I believe that you should follow the 'IF YOU HAVE NOTHING NICE TO SAY - DONT SAY NOTHING AT ALL (Thumper from Bambi 1942)' rule 😅😅😅😅
The person from Poole (which is funny as we live in Bournemouth - probably under the same consultants) who appears to think I am not doing what I should - would you mind if I private messaged you ?? as you say the consultants and post-transplant coordinators were of great help to you and I would like more specific info (due to our locations) ?
Let's try and keep this site as it was meant to be - HELP AND SUPPORT - if you don't agree or dislike what someone is saying - keep it to yourself as it is of no benefit to anyone and just upsets those concerned - unfortunately my husband does not have the ability to write on these forums - so any questions I ask or posts I comment on are for me as his long term carer - also as individuals we all have our 'stories' to tell - some are worse than others - I would ask that consideration should be made before 'commenting' as often the whole story is not written on every post 😘😘😘❤️❤️❤️❤️❤️
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Sorry Holly 😘😘 have had a bad weekend - no offence was intended towards anyone and if I have offended anyone then I sincerely apologise xxxx
I know how you feel, I have been in exactly the same position as you.
Mike has had a host of issues since transplant. He had a bile duct stricture which took around a year of stents being fitted to correct . During this time he developed sepsis, and again 3-4 times with other issues. He had incisional hernias repaired and had sepsis again. It took three months of admissions with this before they found with a CT scan that there was a big pocket of septic fluid behind the mesh. They dealt with this and found bile duct restricted again, so more stents. As I said he still has HE issues which have now been diagnosed as Parkinsons symptoms due to the build up of Metal, in his brain, due to his liver never having been properly functional since birth.
He has now been diagnosed with Osteonecrosis in one ankle, possibly due to either Steroids or Immunos. We are waiting to hear results of shoulder scans to see if he has it in them as well.
We expected Transplant to be the end of an Era but it has just started others. Yes we were told . "your still here". We were also told that as they found over ten tumours when they removed his liver, that he really shouldn't have been given a transplant as he was outside the criteria.
But yes he is still here and did expect to carry on with life as normal as it was before he got ill. Unfortunately that hasn't been the case but we have just managed to get on with it. I have fought tooth and nail every time an issue has arisen and medics have tried to push it under the carpet,. I won't have it . We were told there was nothing wrong with his ankle for over two years by two different rheumatologists. Yet when I pushed they did an MRI and found the bone had crumbled.
So what I am saying to you is, yes we all expected things to change and in our case (s) they haven't really. So keep pushing until you get the answers you need. No he should not be having memory isssues unless there is a specific problem. So get stuck in and don't let them fob you off or grind you down.
I think you said you are under Kings.
Well Mike saw Dr Martino (neurologist) at Kings. He was amazing.
Maybe you could ask for a second opinion from him on your hubbys memory and confusion.
The problem is once the Transplant Unit have done their job they are not involved in any consequential issues that arise, unless it is specifically liver related. This is where the system is wrong I think Transplant patients should be treated generally as a whole person, but the NHS does not provide for this.
If you want to speak off the forum I will give you my EMail address.
You can get a pill box with each day of the week on the individual sections I have one and my son puts my tablets into the pot once a week so I don't forget to take them, I did go through a stage of forgetting whether I had taken my pills or not so the pill box really helps.
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Advice Please
Day 21 Hubby update - looks like he might be heading back to square one
Post transplant tacrolimus doses 
Can he have liver failure already
Anxious wait for Liver Biopsy
