Corrie15

[Ttck1825]

Had liver transplant 8yrs ago, taking 1.5mg of adoport and mofetil am & pm but the doctors want me to put me on Envarus but don't know why, but they have said that my kidneys are not has good has they should. Any replies would be great.

[AyrshireK]

You must ask your doctors why they want to make this change in your meds, you have a right to have this all thoroughly explained to you.

Maybe this slower release version of Tacrolimus is kinder to your kidneys than your current meds. Many people post transplant do suffer kidney issues as they take a big hit during & immediately post transplant & some of the meds aren't great for the kidneys.

This is the same place you asked a similar question the other day so not sure you'll get many different answers than you got then.

Katie

[Ttck1825 in reply to AyrshireK]

Thanks for your reply I thought that no one was replying to me, but I was wondering if it is the adoport causing the problems, because my medication has never been changed since my transplant, but I do also suffer with seizures and take keppra, if that could be the cause also. T

[AyrshireK in reply to Ttck1825]

Keppra can also cause kidney issues so they are perhaps changing things to protect your kidneys better. Ask your doctors why the change.

[Ttck1825 in reply to AyrshireK]

But do the transplant team deal with seizures (keppra) other than the liver or kidneys. T

[AyrshireK in reply to Ttck1825]

It sounds like you need your medical teams to chat with each other to do all they can to take care of all your differing conditions.

[Ttck1825 in reply to AyrshireK]

Been trying for that to happen for a number of years but nothing, so here's hoping this time someone will listen to me Fingers crossed.

[Ttck1825 in reply to AyrshireK]

I am at Edinburgh in 2 weeks so I will definitely ask them, and also suffer type 3c diabetic which they are looking into, because here in Dumfries nothing is being sorted.

[AyrshireK in reply to Ttck1825]

My hubby is also under Edinburgh and was diagnosed with Type 3C diabetes at his transplant assessment in January - diabetic team at Edinburgh are superb - we are in touch with them regularly and they instruct me on tweaking hubbies insulin as required. He's naso gastric fed at the moment so blood sugars were being crazily affected.

We are at t/p clinic on 25th.

Katie

[Ttck1825 in reply to AyrshireK]

That's great news to hear about the diabetic team, I will be seeing them on the 2nd December, straight after seeing the doctor about the change from adoport. Hope they can help your hubby, and I really do feel for your hubby on the gastric feed I could not cope with it. Can I ask what is your hubby 's insulin he takes. I take humilin I 12 units morning and nova rapid in-between with food. T

[AyrshireK in reply to Ttck1825]

Because hubby is on the n/g tube and supplement drinks he's on Humulin M3 - 38 units at start of feed, 6 units part way through and 26 in a morning after his feed finishes. Nothing through the day yet. Obviously awaiting transplant at the moment so no doubt post op it will all change again.

The n/g feed was instigated during transplant assessment, dietician was a bit fearful he hadn't gained enough ground since she saw him in December and wanted him built up a bit more plus having spells of HE he has gone spells of poor eating so it's a wee back up. Sadly, yesterday we ended up in Ayr Hospital because he had a vomiting spell and unfortunately threw up his tube so we had to go and get a new one inserted. Doctor prescribed some anti-sickness meds but they seem to have knocked him for six a bit. He's only taken one and is a bit more foggy than usual but we don't know whether that's another HE spell or this tablet.

Transplant clinic on 25th and we'll see where we go from here. Just hoping he hasn't a huge long wait for t/p because he's become a frail, little old man who can't even co-ordinate to dress himself (and worse) all in a matter of months.

Katie

[Ttck1825 in reply to AyrshireK]

Can I ask how long he has been on the transplant waiting list for, and without sounding nosy how old your hubby is. Which anti-sick drug the doctors have gave him because I am on cyclizine and then they put me on ondansteron which just dissolves quickly and does work I found a lot better. T

[AyrshireK in reply to Ttck1825]

You're not being nosey plus i've shared every step of our journey since 2012 on here.

On the transplant list since January 26th this year, he's 62. Previously listed for 10 months back in 2014/15 but delisted after improving - sudden crash towards end of last year and admission to hospital with acute hepatic encephalopathy.I'm 50 now and basically nursing him 24/7.

1 tablet of Cyclizine seems to have had strong effects today, will ask liver consultant about alternatives - will half the tablet tomorrow to see how he gets on. Can't have him repeatedly being sick and dislodging tube.

Katie

[Ttck1825 in reply to AyrshireK]

But can I just add my husband didn't think I would get well enough or strong enough to go through a transplant because of the weight loss, basically very ill, and only found out after I finally got the transplant that I only had a matter of weeks to live. But if my husband had of told me I would have given up altogether, but with his pushing an encouragement I fought so dam hard, I am able to say to you and hubby please please never say never. With all my heart keep fighting it's bloody hard, and please keep touch. Tina

[AyrshireK in reply to Ttck1825]

Oh we're not giving in, in the 9 years between hubbies t/p listings we've done loads. This time last year we were just about to set off on a minth long mountain biking holiday in the Cairngorms where we cycled almost 400 miles. By November he couldn't even work out how to mount his bike anymore. It's just been such a sudden crash.

Hubby is sitting at a good weight having retained most of it after being built up last time round it's just his appetite is rubbish now and dietician doesn't want him to lose ground.

Best wishes, Katie

[Ttck1825 in reply to Ttck1825]

You can only ask if they will try other options for his sickness, I won't ask if you get any help from anyone cause there is none, my husband was 68 and myself 55 and it's hard 24/7 but you must take care off yourself (if possible). Tina

[AyrshireK in reply to Ttck1825]

I will be asking about suitable antiemetics when we go through to Edinburgh. Rather get the go ahead from the liver experts than our GP's. I rang the liver ward today and they advise that the cyclizine was ok but from first impressions I think it may haven't agree with hubby. We'll go with a half tablet tomorrow which is a kids size dose and see how that goes.

I am fortunate in a way that my parents come down once a week or so but that's the only help I get. Dad sits with hubby whilst I go out with Mum. It's only for an essential shop really but it gives me a couple of hours away whilst knowing hubby has company and support. Sadly due to the HE there is no way I can leave him home alone and as yesterday proved he couldn't have coped with such a medical emergency (& it was an emergency as he was choking on the jettisoned tube).

Off to Edinburgh on the 25th of this month so not long to go now, ironically that will be 12 years to the day that he was in HDU at Ayr having just had a massive variceal bleed and found out he had cirrhosis - a diagnosis which came completely out of the blue.

Katie

[moggomereno in reply to AyrshireK]

Katie, I struggle to look after myself but if I could I would look after you and your hubby as much as possible.

[AyrshireK in reply to moggomereno]

Bless you and thank you. It's not beating me (yet ... LOL), we have our routine though not 'living' very much. Katie xx

[Ttck1825 in reply to AyrshireK]

That's great that you're mum and dad can give you that bit of a breather, but unfortunately we never had that but like you said we keep our own routine. That's a great attitude to have that it's not going to beat you, hope you got more answers on the 25th, both take care. Tina

[Ttck1825]

I have just started on the Envarsus 2mg a day from taking Adoport, they said this drug will also help with my terrible and painful headaches, which are 24/7 but the envarsus has not done a thing, infarct I am feeling worse since they started me on them the weight still up and feel sick most of the time. I honestly don't think anyone gives a 🤬 and have moved me from one Dumfries to the Ayr and Arran, like they have just disowned me, basically feeling unwell and in pain, so just talking to a brick wall. That's the specialist doctor for you. Pay for it and you'll be taken notice of that's what it seems like Money Talks🥴

[BritishLiverTrust11 Moderator in reply to Ttck1825]

Hello

We are sorry you are finding things challenging at the moment.

If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[AyrshireK in reply to Ttck1825]

Just seeing your post, sorry to hear you haven't had much joy with new treatment. I would push to be seen again. Who have they referred you to in A&A? My hubby is an Ayrshire and Arran patient and hasn't seen a doctor here since January 2020 - gastro from Ayr retired and hubby is meant to have been referred to Crosshouse, Kilmarnock (as a new patient) but we've heard zilch from them & there is no hepatologist there though I believe an Edinburgh consultant does come through every month or so for a clinic as there are only gastro's in A&A. But as we discussed before hubby is awaiting transplant so is attending Edinburgh regularly and infact they are even going to do hubbies 6 monthly scan at the same time as next t/p clinic as it's not been done locally.

Just a thought on the headaches - have you had a brain scan or any check on what may be causing them? It may be nothing to do with your liver meds.

* A wee update on our situation - hubby no longer n/g fed, after 3 outs and reinsertions and still vomiting he could no longer tolerate it. Between HE meant & vomiting he's no longer able to eat so is now getting all his nutrition from 7 supplement drinks a day. Took two t/p clinic appointments for Edinburgh to finally give him a different anti-emetic and he's got the Ondansetron now but hasn't needed to take any as he's holding down the supplements ok. Diabetic meds tweaked too. Still waiting for the call. *

Best wishes,

Katie

[Ttck1825 in reply to AyrshireK]

Hi Kate, no not much joy at all with the Envarus but I had my visit to Edinburgh and was seen by a Dr bathgate it was a wasted long journey, it took all of 10 mins and didn't get any answers just drop my sodium tablets down to one a day, but got blood tests results from my own GP who said my sodium levels were still low and stay on 3 sodium tablets a day. So god knows what would happen if I listened to Edinburgh. Also got a letter from A&A to now be transferred to them instead of Dumfries, to see a Dr I Wertelecka , but not until October (pathetic) so been at least 2years since seen a gastro Dr, and same has yourselves referred to cross house. Still no results from my EEG. Good to hear that your hubby is keeping the supplements down and no longer got that awful tube or vomiting. Things would be great if he could get a transplant sooner rather than later(in a perfect world) and has for the diabetic team like yourselves still waiting to hear something. Can I ask which supplement drinks have they given hubby, cause I still take fresubin energy milk supplement and find them easy to take, not sickly and you can get them in a fruit juice, but not allowed them. So like always for us it's a waiting game, but hop your hubby hears some good news soon.Take care

Tina

[AyrshireK in reply to Ttck1825]

Hubby's on Fresinius 2kcal - the milky type one. Waiting for an Edinburgh allocated liver as H.E. supposedly doesn't score enough on the national allocation system so probably going to be a DCD liver.

A&A not great.

Katie

[Ttck1825 in reply to AyrshireK]

My liver transplant was from a live organ transplant from a donor who had life support turned off sadly. I was at the stage were I was given weeks, but didn't know about having to have a score, just how ill and urgent before it was to late and unable to undergo through the surgery to survive it, also mine was cirrhosis and can't explain how grateful I am to the doners family for making the choice they did very sad. But please don't give up hope, I did. Sorry for asking but have they given hubby any length of time, like they gave me before he has to be put at the top.I was meaning to ask you in my last reply if you have heard of the horseshoe building, ACH, Irvine that is were my appointment in October is for gastro Dr, which I mention they had passed me from Dumfries to Ayrshire and Arran.

Tina

[AyrshireK in reply to Ttck1825]

The Horseshoe Building is at Ayrshire Central Hospital, Irvine. Very easy to get to and well sign posted from the A78. Arrive early because parking is very limited around the quadrangle/horseshoe but there are other car parks round about the hospital which you might need to find a spot in. Hubby and I have both been there for various scans etc.

You must have been on the super urgent list and got a DBD donor. Hubby isn't that poorly and it's because he has Hepatic Encephalopathy due to his cirrhosis that he's on the list. We've been told that as his bloods (apart from bilirubin) are near normal there will always be people who are more 'liver ill' than him but his HE has reached a degree where it is totally affecting his quality of life now (he has no life) and last surgeon we saw was more positive and said we'd to trust in they system and they would get him a liver. Allocation system has changed since you had your op, back then all livers were locally gathered and locally assigned whereas now all DBD livers go to UK wide national offering system. DCD livers are still allocated via local transplant centre's and they can more or less pick the recipient they want to for each of these type.

Katie

[Ttck1825 in reply to AyrshireK]

So basically it's the luck of the draw then now with who gets a liver, and has the saying goes it's not what you know it's who you know.But hope hubby can stay strong enough and fighting for a new liver which will make one hell of a different, but even though it is still not a smooth sailing when it happens, like I have told you about the grief with Dr, specialist etc and that's 8 years later. The way the NHS is going it will be privatised and will need to pay for treatment, for some people it's a good thing you'll get what you pay for (that's if you have money).

Tina

[AyrshireK in reply to Ttck1825]

No it's not luck of the draw at all - the most poorly like yourself who were super urgent always get first dibs on any liver that matches. Then they have worked out a new scoring system which includes a transplant benefit score. The national system is an algorithm which matches the most suitable person to receive any donated liver across the UK. This only applies to donation after brain stem death (DBD).

It's all detailed on the BLT page at:- britishlivertrust.org.uk/ne... (Just posting in case folks get disheartened or get the wrong idea from this conversation).

Local centres still get to allocate those organs that are donated after cardiac death - these used to be considered less favourable livers but with the wider spread use of perfusion machines which circulate blood through the liver and keep it 'alive' rather than on ice they can biopsy and do all manner of checks to make sure the liver is almosts as good as a DBD one and they get allocated by local teams. The transplant centre will look at who most urgently needs a liver especially those who are unlikely to receive from the national list because some people waiting are somewhat disadvantaged by the national allocation system.

We have just got to trust in the system and hope it brings a liver in time.

Katie

[Ttck1825 in reply to AyrshireK]

Hi Kate, so sorry, but the wording came out so wrong and was definitely not meant to be said like I said it, by the luck of the draw, it's anything else but luck. So please accept my apologies for it sounded so ignorant when I read it to myself.Tina