life after TIPPS

[Soso444]

Hello everyone I’m looking for some answers plz everyone that can help comment any little info will help . My father just had the tipps surgery couple weeks ago and everything was going good and they told us his feet might be swollen and they have been so I thought this was the worst but now he eats very little cuz he don’t like the food and he’s getting confused very easily . And today he left the house and didn’t know what happen so my mother took the keys and his pills and anything that might harm him away and he had been screaming and saying I don’t know what’s wrong with me he don’t know what’s happening to him to the point he dose not know how to answer us if he’s in pain or what’s happening . Plz who ever can help to tell me what is happening and what should we do and when will this stop or if it will stop plZ let me know how I can help him

[jojo23pink]

Hepatic encephalopathy or confusion- This is a condition were you have altered mental status which it is believed to be due to toxic products from the intestines (ammonia). This ammonia is normally removed from the blood by the liver. When TIPS is performed, the TIPS will allow toxin-containing blood with ammonia to bypass your liver. This may affects your brain in a way that may cause confusion or even comma. Different treatments can be use to treat this condition. Take him back to the doctor and tell them.

[Soso444 in reply to jojo23pink]

Thanks this info helps me understand what’s happening . He’s in the hospital now we are waiting to see what they say I hope he’s safe here and they can do somthing

[jojo23pink]

Is there any chance of dementia

[jojo23pink]

He shoud be on medication and a protein restricted diet u need to take him bk t doc as the confusion can lead to a coma really hope he recovers

[LAJ123]

Hello,

What you have described sounds very serious if only because he has had recent surgery but also as he does have liver disease advanced enough to require the TIPPS procedure.

Nobody here is able to give medical advice, so my strong feeling is that you should seek medical support as soon as possible.

Assuming that you are in the UK, you can either go directly to accident and emergency by car or taxi, call 999 and ask for an ambulance or call NHS 111.

nhs.uk/NHSEngland/AboutNHSs...

NHS 111 can make an assessment and can give advice directly from a qualified nurse or a doctor. If the initial assessment tells them its an emergency, they will despatch an ambulance to your address.

Please don't delay in doing one of the above.

Jim

[Soso444 in reply to LAJ123]

He’s at the hospital now

[jojo23pink in reply to Soso444]

Let us know how he gets on luv really wish him the best of the best of luck take cre xx

[LAJ123 in reply to Soso444]

I hope all goes well and please remember to take care of yourself as well as your father.

Jim

[Kazzb8]

My husband had the tips procedure and we was warned prior to it that he could be confused afterwards. My husband last year was diagnosed with hepatic encephalopathy, which is the cause of my husbands confusion. He is now prescribed an antibiotic that he takes constantly to help and has to make sure he takes his Lactulose every day. We had to inform the dvla of this condition and they have revoked my husbands licence so he is no longer allowed to drive.

I have read your father is back in hospital, I really hope they get to the bottom of it all. Sending you my thought to your father and to your family. As my husband's carer I know only too well how stressful and worrying it is for the family members too.

[Soso444]

Hello everyone ur comments helped so much for me to get answers and talk to the drs it was from the toxins as u all said they are letting him out of the hospital I don’t think is a good idea but we are watching him very closely . And I’ll be getting tested soon to see if I can donate my liver to him as soon as possible if anyone has any idea how the live donor transplant works are is there risk or u know anyone that did and how they feel about it plZ let me know . I have 2 kids of my own I can’t leave my father like this but I also can’t do this and it might be a risk on me I’m just scared for my kids to be with out a mother I need help to make this Decision

[Soso444]

Hello everyone ur comments helped so much for me to get answers and talk to the drs it was from the toxins as u all said they are letting him out of the hospital I don’t think is a good idea but we are watching him very closely . And I’ll be getting tested soon to see if I can donate my liver to him as soon as possible if anyone has any idea how the live donor transplant works are is there risk or u know anyone that did and how they feel about it plZ let me know . I have 2 kids of my own I can’t leave my father like this but I also can’t do this and it might be a risk on me I’m just scared for my kids to be with out a mother I need help to make this Decision

[AyrshireK in reply to Soso444]

Sorry to hear about how poorly Dad is. Here is a link to the booklet that the transplant unit at Edinburgh gives out to potential live donors - they were the first hospital in the UK to pioneer live liver transplant. The booklet is really good as it goes through everything from the assessment phase to post recovery.

My hubby was eligible for live transplant but we decided against me being even tested as it means you go through a similar length procedure to recipient, have the same size scar meaning you can't bend, lift or drive for some subsequent post op period plus there is - like any major surgery the chance of bleeds, infection and possibly worse.

Its a very brave decision to make but also you must be aware of the risks. What if something were to happen to you ? you have your children to consider and how you being debilitated for a while will affect them and what you can do plus you do have to examine the 'what if?' scenario because like I say it's massive surgery and not without risk.

You'll find the leaflet at:- nhslothian.scot.nhs.uk/Serv...

How old is Dad? Is he on the waiting list for transplant already? He would have to be listed and awaiting a cadaver liver before a live transplant would be considered. Surgeons always prefer to await a liver from a deceased donor before putting a healthy person through unnecessary major surgery.

Make sure if they are saying this is Hepatic Encephalopathy he receives both Lactulose and Rifaximin to treat the toxin build up. Sadly HE following TIPSS is very common.

Best wishes to you all, Katie

[Soso444 in reply to AyrshireK]

Thanks Katie my dad is 56 he’s leaving hospital today they can’t do nothing else she’s good for now but soon it will happen again I know it but this time we will be ready and he’s on the list but I don’t have hope for that cuz he’s older he will not be there first there will be more in front of him he’s not young to them I feel like he is not priority but we will see . I have in one hand my kids to think about and the other my father I can’t choose there both my life it’s very hard

[AyrshireK in reply to Soso444]

I would hope your Dad does get his chance, my hubby is now 57 and I would hope he would get a go if the need arises again. He was listed in 2014 for 10 months but delisted when his blood results improved to take him out of the qualifying criteria.

Katie

[sheridan41]

Hiya I had to Tipss procedures and developed bad HE. I went on to have a liver transplant as the Tipss didn't do the job for me. Hope all goes well xx

[mncold]

Hi Soso444,

I would call the doctors or whatever emergency services you have available and as soon as you can.

This severe a decline in his health should be seen by people better able to provide real hands on help.

Best wishes to you all.

Mary

[Smyally]

Hi Soso. I don’t know why I haven’t seen this post before now but this is what happened to me straight after TIPS procedure. Like everyone said this is HE and whilst in hospital he hopefully would been put on antibiotic called Rifaxamin (think that’s how it’s spelled) and lactulose several times a day to help him go to the loo. Being personal but it is very important to go to the loo several times a day to clear the toxins from his body and it’s very dangerous to get constipated. It’s been two years since my first episode of HE and although I’m on waiting list for new liver the HE side is under control. I wish you both the best of luck.