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