Liver Stent/Tips

[BumbleCat]

Hi, I had a tips in May 2022, within 6 weeks it failed and I had urgent surgery to correct it in July 2022. I've been told my new TIPS is very big. Since then I have felt absolutely amazing.

However, past week I've had a build up of ascities - not huge but enough to see my weight increase by 7lbs. I called the nurses on Thursday and they have referred me for an urgent ultrasound- but as today is Saturday its too soon to be told a date. They also increased my Furosomide and Spironolactone by double. Apart from that, I felt fine.

Today - I've had actual liver pain. Something I've never had before and the pain is also on the right side of my chest, directly above my liver. I've taken paracetamol and it's taken the edge off but within 2 hrs the pain is back.

I'm hoping to last out until Monday because I will call my team at 8am, knowing they will see me.

Has anybody had this? Is this a sign of TIPS failure? I'm so upset. I was doing so well. I'm due to start a new job promotion in 2 weeks. I'm a teacher for Primary and I'm also studying for a Masters with an assignment due on 4 weeks.

Please, somebody reassure me 😢

[DD75]

Hi Bumblecat,

I'm not a medical expert but my husband had TIPS in March 22 he had a massive build up of ascites and still does they said it can take years to go away but he does get pain in that area and according to my husband whose liver is very very bad has pain in that area if he lies on his side where the TIPS is he's told the hospital and they weren't overly concerned about it.

I remember when he was discharged he told me the critical care nurse told him if something happened to his TIPS he'd know as the pain would literally knock him sideways.

I'm so sorry I can't offer anything else advice wise. If it gets worse I'd ring 111 and explain your situation and they will get a doctor to ring you back.

[BumbleCat in reply to DD75]

Thank you. I had a CT scan at end of October and my ascities was zero. I didn't have ascities when I first had the stent (thank fully). The latest letter I have received said if I get a build up I'm to notify them. I feel reassured that despite your husband being uncomfortable and experiencing pain, it isn't anything to be too worried about.

Thank you for taking the time to reply xx

[DD75 in reply to BumbleCat]

No problem as I said I'm not a medical expert and everyone's different and I always think the worst but sometimes it's something simple. If you're still worried or it's getting worse I would call 111 x

[Cobwebs]

my only comment on spironolactone is the nuisance of getting up to go to the loo in the night! But do check with your GP about the use of paracetamol. I have been told to seriously limit the use.

[Pheebe]

Could I ask you why you had to have TIPS done in the first place. Thank you. I'm just getting over 2 GI bleeds and some ascites. So not sure at what point they do TIPS and what does it help with.

[AyrshireK in reply to Pheebe]

Hi Pheebe, BumbleCat has a fairly rare liver condition called Budd-Chiari Syndrome which is described as "Budd-Chiari syndrome (BCS) is a disorder affecting the liver and blood vessels, where blood flowing into the liver has difficulty in being able to flow out, leading to serious complications.

After blood has passed through the liver, it flows out through the hepatic veins and into the inferior vena cava, a large blood vessel that carries blood back to the heart. In BCS, this flow is partially blocked, sometimes referred to as ‘an obstruction of hepatic venous outflow’.

The immediate result is a build-up (congestion) of blood in the liver, as there is more flowing in than flowing out. The liver becomes swollen, tender to the touch and a source of discomfort. The congestion causes fluid to leak from the liver into the abdominal cavity. The resulting build-up of fluid in the abdominal area is called ascites, one of the commonest symptoms of Budd-Chiari syndrome. It may be visible as a bulge in your tummy area and can be uncomfortable and make it hard to breathe and eat normally."

So i would imagine that's why they've had the TIPSS procedure, in patients with Cirrhosis with portal hypertension TIPSS may be offered to try and deal with ascites and/or uncontrollable varices. It isn't rushed into if diuretics work on the ascites and banding and/or beta blockers are controlling the varices. TIPSS can bring it's own difficulties in that blood being forced through a TIPSS is no longer being detoxified and many people end up with complications related to Hepatic Encephalopathy.

My hubby had one massive (near fatal) variceal bleed plus 42 varices banded and TIPSS has never been suggested or discussed.

Katie

[Pheebe in reply to AyrshireK]

Thank you for that info. How often was your husband having endoscopies to look for varicies? My last 2 must have been "leakers ", as my stomach slowly filled up with blood, then I vomited it up. ( plus black stools) I know if they burst it's very serious. They did classify mine as high risk.

[AyrshireK in reply to Pheebe]

For the first two years following his bleed it ended up being every 6 to 8 weeks and they eradicated them via repeated banding. Since 2014 he's had an annual endoscopy and 2022 was the first they missed out because he's had no banding since early 2014. He'll be going for his next one later this year.

[BumbleCat in reply to AyrshireK]

You put it better than I could. Thank you 😊 xx

[AyrshireK in reply to BumbleCat]

I just copied the information from the BLT page on Budd-Chiari having checked your profile as to why the TIPSS was the treatment for your issues. britishlivertrust.org.uk/in...

[BumbleCat in reply to Pheebe]

Hi, So my vessels were failing that were pushing blood out of my liver up to my heart. The blood wasn't reaching my heart properly and to cope, my body started making it's own vessels and tracks, and I ended up with vessels in places that shouldn't have them. I needed them closed off, and I needed the TIPS to be my new vessel. The nest way they ever described it to me, was like opening up a new lane on the motor way. They didn't want to have to do TIPS because of the complications ot can have. I was very close being listed for transplant, so TIPS was a last chance really. The first one failed after 6 weeks as my liver remoulded itself iver the TIPS, closing it off and putting me in danger of going into liver failure imminently. So I was rushed in for a revision. So far, so good up until all this discomfort I'm getting now.

I'm still under the transplant clinic but I'm not on a list which is great. xxx