Spouse with cirrhosis

[Pslade]

I'm back with more news. Just left hospital. Hubby got another 10 liters fluid drained. It looks cloudy this time. They want you do the tips procedure. Has anyone had this and what's your opinion on it. Thanks 😷

[Grankids3]

Hi, I had a liver Tipps just before my Bowel cancer op, as my liver was too bad to survive chemo,

I have cirrhosis, caused by my diabetes, seemingly didn't know I was diabetic until it was too late and the damage done,

I've portal hypertention, this is why they did the liver Tipps,

Went into Edinburgh hospital, procedure was done through Jugular vein, felt okay after I woke up, neck a wee bit uncomfortable, was home 2 days later, no problems afterwords,

Hope this bit of advice helps, good luck for the future, I still get MRI every six months because of nodules and lesion on liver, x

[Grankids3 in reply to Grankids3]

Oh, meant to say that I had it done 5years come February, x

[Pslade in reply to Grankids3]

Thank you for replying. Iv heard some horror stories. Some say they suffer confusion. His dr said he should not get that because his cirrhosis isn't from drinking. Just very confused here.

[Grankids3 in reply to Pslade]

Hi, it can be frightening with all the stories, everyone is different, I did not think to mention I had an episode as didn't think it was relevent, it was about a week after the Tipps procedure, I can't mind anything because it affected my memory, they said I had a urine infection which was sometimes usual after the Tipps getting done, never had one since, I do have lactolose in the cupboard just in case, never used it, as I said, that was 5 years come February, I've had urine infections and no episodes, please don't worry, I take every day as it comes, I have many illnesses and get well looked after by my doctors, xx

[dckimberly]

Hi there. I used t getdrained up to 21 liters every ten days. My ascites was really bad. But I got a transplant.sadly, my liver is not doing well, so they recommended the Tipps shunt. They never did it beforehand. I am back on the tx list again now.. But because I had such bad ascites prior to tx without any I’ll effects from the build u of toxins, they assumed the tips would be good for wme.

Well, it’s not. Period. My quality of life has come hugely diminished. I can go up to 48 hours of having dementia like symptoms with no memory whatsoever. I don’t know where I am, what day it is, etc. sometimes I screa, and yell. I can’t take my medication on my own, or don’t know I should East. Other times I sleep on and off for days. Stress can give me an episode, and these side effects are known as hepatic enchalopothy. The partner of a patient on here, known as Pear recommendation I be careful in doing it. Her partner had these episodes and they were bad. I wish I had listened to her. Also, my nurse practitioner who did my drains along with everyone else’s (she actually does more per week than anyone else in the country. She also has another nurse who helps her. My hospital is Addenbrookes) said there was a 50 /50 % it might help. She did not want to say either way..but after a couple of years being treated by her, we were close. I could tell she didn’t was think it would help. In this case quantity is Not worth the quality.

The HE happens from the buildup of toxins in the blood that the liver can not clean because the Tipps stops all the blood from getting the chance of being cleaned. So the toxinated blood travels from the belly to the brain. And then BAM. I can’t be alone anymore because it can happen at anytime. They will tell you lactoluse we lo help with it. And yes, It can. But not always. And

Sorry to be a downer, but god I wish I would have listened to Pear and my nurse. I feel so powerless. And terrified half the time. And depressed .

If you ask you’ll see I am completely different than I used to be on here. I was always so happy and tried to be helpful. Read some of my older posts from 2015,

By the way, I did not get these episode right away. So I though I was safe. But then they started. And they can come in many different forms..depending on how the toxins can effect the brain.

My partner says it’s like I have no higher functions in my brain.

Like sometimes I don’t wear pants. Why? It does not occur t me that I even need pants..fr that matter, I do not even know what pants are..let alone to wear them.

The only good news is that I know to use the bathroom.

But we believe it is something I am doing because I’ Been doing it since I was like 3. So I am doing it by rote.

Sorry. I don’t mean to go on and on.

And it may not happen. And I may be an extreme case,

But yu and your partner need to know the facts.

God luck,

Kimberly

[pear-shaped in reply to dckimberly]

Hello,

Everyone is so different - so it all depends on your own medical conditions - best thing will be to list all the different points people have made and present these as concerns to your consultant.

Kimberly: good to see you are managing to pop in... Congratulations on your grandchildren and hang in their - keep pushing your team to keep you active on the list Hun Xxx

Best wishes,

Pear

[jojokarak]

Hi I had the tipps procedure as well and it's not true that if you have cirrhosis not through alcohol you won't get h.e. mine was caused through an existing medical condition. I was eternally grateful for the procedure though as it saved my life I was in a coma when I had it performed so my husband and family had to make this decision I had no problems for 18 months or so but like I have mentioned I wouldn't of turned it down anyway he may be lucky and not suffer with h.e. no medical procedure is without it's risks. Oh I forgot about six months after having it fitted I did start with a few problems but they went back in and adjusted the stent and it cleared up straight away

[Pslade in reply to jojokarak]

Thanks for the info. Very helpful and glad your doing well.