Hi I am looking to find someone who is in the same predicament as me. There must be someone out there? I had a TIPS stent fitted in 2015 for severe portal hypertension and variceal bleeding in oesophagus and stomach. Has the TIPS procedure in Liverpool but as I live in Wales, ever since, there seems to be a breakdown in communications between Liverpool Royal, Ysbyty Gwynedd and my GP. I don't think I have been told all I need to know and feel very lucky to be alive.
Now sober and doing ok apart from living with cirrhosis, symptoms of HE, abdominal pains, back pain, confusion and general worry about dropping dead tomorrow
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BigJimmy45
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Thanks for your reply, i didn't want to come across as ranting and raving, my apologies for this. I wanted to know if anyone was in a similar situation,
Hospitalised in Dec 2014 turned yellow over night and had a lot of treatment including stomach drains for acities etc, etc...Billarubin was over 2700
Got out of hospital after 5 weeks and was still quite jaundice and had lost a lot of weight. I them moved house, though I was better and started to drink wine again. That's is when the hypertension started. I had 2 bleeds which were banded on separate occasions. the 3rd bleed nearly saw me off, it was a major one, Hb level down to 10, had man blood transfusions and plasma infusion, more banding and gluing. Came out of hospital after 10 days and was just sitting on the couch drinking water, a couple of hours later another bleed, so back infor more banding. Doctors decided to do the TIPS procedure A.S.A.P so this is now July 2015
Following this I recovered well and stayed off the drink. Was taking lactulose, thiamene, lanzoprazole, water tablets, propanalol, zopiclone, codiene, citalopram
2017 had another bleed from behind a flap of skin wasn't too bad but still scary
All this time was getting blood tests every 6 months and ultra sound scans every 6th months to check if stent was working and it came back as patent.
2019 i had an appointment to get wedge pressure test on each side of stent. The radiologist went in through my neck, down through the right side of my heart to get to TIPPs site. on the way the catheter knocked my heart valve out of rhythm and was rushed into emergency trauma ward with my heart eating at 190bpm and wouldn't come down just while I was lying flat. Eventually they stopped my heart and restarted it. The wedge pressure check was obviously abandoned and I haven't had one since. So I have this stent and wedge pressure check hasn't been checked successfully for 4 years up to this point.
Doctors gave me an approximate mortility of 5 years + max, due to having hypertension. No other data is available. TIPPS can only reduce portal hypertension, it increases the chances of developing HE and also there is a risk of right heart failure due to excessive pressure that can back up to the heart.
I have funny turns about 3 or 4 times a week where I get tightening in my chest, breathing difficulty, heart palpitations and the docs do not know what causes it?
Moving forward to 2020, still alive but always worried about stent failing or getting an infection... covid happened, I thought we were all going to die. Drove myself mad with worry and had covid twice between 2022. I started drinking thoughout covid probably around 16-20 bottles of Leffe 33ml @ 6.6% everyday.
6 monthly liver scans were coming back as patent and blood tests were not too bad.
After 12-18 months I felt like this still wasn't killing me, i really wanted to be dead and I did want to stop drinking. My mum also passed away during this time and I started going to councilling.
I had mental health issues and tried to stop drinking. GP gave me 100 libruim tablets to self detox but I carried on drinking while taking the librium. I went into hospital with mental health issues and because they where that busy they sent me home the next day with another 100 librium, no help from the mental health team. Doctors realised they shouldn't not have issued me with Libruim and I had a call to say to stop taking them. I took them anyway.
Further councilling from substance misuse service got me into Hafen Wen for detox and 2 weeks 'fire break' clinical detox under supervision. I haven't drank since.
I haven't had a face to face meeting with the liver consultant for 4 years now, mainly due to covid.
My questions are. Does anyone have a TIPSS liver stent fitted who is not yet on the waiting list for a transplant? Has anyone had a TIPPS stent in for more than 8 years without getting wedge pressure checked. Has anyone with a stent had problems with blockages or infection?
Is anyone in a similar situation? I would love hear from you
Are you under a hospital consultant for your liver? Having cirrhosis you should be having blood tests and scans every 6 months and having had a TIPSS procedure you should be receiving treatment for potential Hepatic Encephalopathy - Lactulose/Rifaximin. I can't tell what 'predicament' you are in other than info. sharing between hospitals.Katie
In answer to one of your questions my husband isn't on a transplant list and he's had TIPPS as previously mentioned.
I would suggest you try speak to someone at the hospital or your GP for advice you sound so worried and I don't think it's helping you at all. Also the British Liver Trust Nurses are amazing have you tried ringing them for advice/support?
Liverpool University Hospitals apparently specialises in the TIPPS procedure so I'd be surprised if they just left you with no check up organised at your local hospital or back in Liverpool.
Thinking of you and I hope you get some answers soon 🙏
Thanks for your reply, i didn't want to come across as ranting and raving, my apologies for this. I wanted to know if anyone was in a similar situation,
Hospitalised in Dec 2014 turned yellow over night and had a lot of treatment including stomach drains for acities etc, etc...Billarubin was over 2700
Got out of hospital after 5 weeks and was still quite jaundice and had lost a lot of weight. I them moved house, though I was better and started to drink wine again. That's is when the hypertension started. I had 2 bleeds which were banded on separate occasions. the 3rd bleed nearly saw me off, it was a major one, Hb level down to 10, had man blood transfusions and plasma infusion, more banding and gluing. Came out of hospital after 10 days and was just sitting on the couch drinking water, a couple of hours later another bleed, so back infor more banding. Doctors decided to do the TIPS procedure A.S.A.P so this is now July 2015
Following this I recovered well and stayed off the drink. Was taking lactulose, thiamene, lanzoprazole, water tablets, propanalol, zopiclone, codiene, citalopram
2017 had another bleed from behind a flap of skin wasn't too bad but still scary
All this time was getting blood tests every 6 months and ultra sound scans every 6th months to check if stent was working and it came back as patent.
2019 i had an appointment to get wedge pressure test on each side of stent. The radiologist went in through my neck, down through the right side of my heart to get to TIPPs site. on the way the catheter knocked my heart valve out of rhythm and was rushed into emergency trauma ward with my heart eating at 190bpm and wouldn't come down just while I was lying flat. Eventually they stopped my heart and restarted it. The wedge pressure check was obviously abandoned and I haven't had one since. So I have this stent and wedge pressure check hasn't been checked successfully for 4 years up to this point.
Doctors gave me an approximate mortility of 5 years + max, due to having hypertension. No other data is available. TIPPS can only reduce portal hypertension, it increases the chances of developing HE and also there is a risk of right heart failure due to excessive pressure that can back up to the heart.
I have funny turns about 3 or 4 times a week where I get tightening in my chest, breathing difficulty, heart palpitations and the docs do not know what causes it?
Moving forward to 2020, still alive but always worried about stent failing or getting an infection... covid happened, I thought we were all going to die. Drove myself mad with worry and had covid twice between 2022. I started drinking thoughout covid probably around 16-20 bottles of Leffe 33ml @ 6.6% everyday.
6 monthly liver scans were coming back as patent and blood tests were not too bad.
After 12-18 months I felt like this still wasn't killing me, i really wanted to be dead and I did want to stop drinking. My mum also passed away during this time and I started going to councilling.
I had mental health issues and tried to stop drinking. GP gave me 100 libruim tablets to self detox but I carried on drinking while taking the librium. I went into hospital with mental health issues and because they where that busy they sent me home the next day with another 100 librium, no help from the mental health team. Doctors realised they shouldn't not have issued me with Libruim and I had a call to say to stop taking them. I took them anyway.
Further councilling from substance misuse service got me into Hafen Wen for detox and 2 weeks 'fire break' clinical detox under supervision. I haven't drank since.
I haven't had a face to face meeting with the liver consultant for 4 years now, mainly due to covid.
My questions are. Does anyone have a TIPSS liver stent fitted who is not yet on the waiting list for a transplant? Has anyone had a TIPPS stent in for more than 8 years without getting wedge pressure checked. Has anyone with a stent had problems with blockages or infection?
Is anyone in a similar situation? I would love hear from you
I had the TIPS procedure done in early March of this year after having had 44 varacies banded over two years and the last bleed I had was bad enough to do the TIPS. I haven’t talked to many people with it, curious to follow this conversation.
I’m feeling good, I haven’t had any more bleeds and the bloating feeling I constantly had went away. I am still tired a lot, which is probably some of the medications I’m on.
Is there anything that you can remember that changed for the better or worse after you had yours?
Yes the portal hypertension has reduced dramatically and therefore only had one bleed since having TIPPS. Sometimes you totally forget it is there. The key is to try and keep your blood pressure under control, avoid stress. Drink plenty of green tea, if you have coffee, 2 cups of black coffee in the morning helps. Eat as healthily as you can and try to walk for exercise but don't over do it.
I have tested myself numerous times with drinking. They said don't ever drink again alcohol but I wouldn't have it. Drink was my best friend and I have proved that having a TIPS stent in for 8 years drinking on and off hasn't made any difference. I am nearly 18 months sober as I feel I have finally grown out of the alcohol addiction naturally. I just dont like it anymore, and my LFT blood tests come back totally normal these days, only thing out of range is platlet count of 114 which is low but to be expected with cirrhosis. I don't know how I am still alive but must be doing something right.
I am not trying to worry you, this is just m own personal experience. For the last 3 years I have been really worried as the only statistics available that I can find online giving data on survival rates for Liver TIPPS patients longer than 5 years without a transplant are grim, especially if you had problems with portal hypertension. My last endoscopy over a year ago they basically told me 'off the record' I am still like a ticking time bomb. Varacies everywhere in my stomach and oesophagus. I saw them on a HD colour monitor when the camera was in. Looks like a pink underground cave in there with stalactites! You can see all the banding and scars quite clearly.
That is the hardest thing to deal with on a daily basis to be honest. I dont know if they will all just burst one day and will bleed out or the stent could fail at any point anytime? I assume if the stent fails I would just go downhill rapidly and all other organs would start failing too. The TIPPS stent is in for life and cannot come out unless they give you a transplant. I have started developing symtoms of HE as I cannot cope with the lactulose some days, I hate it, my arse is sore using it all the time. The depression catches up with you realising today could be your last, it is very hard to live a normal life unless you try to forget the stent is there but I find that impossible. Its always on my mind. My last US scans Nov 22 and May 22 have shown up a liver cyst now too. Next scan is may 18th so will see if it has grown. I feel like something is going on but don't know what. You know your own body and can usually tell if something doesn't feel right
Good luck with everything, I am happy to talk about anything and my personal experiences in hospitals, yours might be totally different?
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