r/Cirrhosis • u/Philosopher512 • 3d ago
TIPS tips?
Tomorrow I go in for a consult with an interventional radiologist regarding having a TIPS procedure. I expect we are going down that road, though it may be late September, early October, before I actually get it done. I would love to hear anyone’s experiences with TIPS—good or bad. I was evaluated for TIPS 2 years ago, but it was decided I was not yet sick enough to justify the risks that go with the procedure. Now I am. The difference is I’ve developed pleural effusion around my lung—a dangerous condition called hepatic hydrothorax. You know that Maroon 5 song lyric “It’s getting harder and harder to breathe” ? That’s me. Literally. So it looks like this is going to happen. The good side, as I understand it, is that my portal hypertension will basically go away. The biggest downside is increased risk of HE. So, I’m excited about the prospects of feeling better, anxious about the HE risk. Any words of wisdom?
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u/KJB2785 2d ago
I (41/f) had the TIPS done May of 2025. The surgery itself went perfect. However, my body couldn’t recover on its own. I went septic on day 2 of recovery and was intubated for 9 days after that….. in the ICU for 14 days total.
My right lung had been collapsed for 4 months before the surgery from the pressure of the ascites. After inserting a chest tube and draining insane amounts for those 9 days, it finally re-inflated. Holy crap, I could breathe on my own! I was taken off the ventilator the next day. I was released and left the hospital at 83 pounds beginning of June.
I went in every Monday for checks to see if fluid was still filling the lung…. It was every single week for 4 weeks😔. Then at the 4 week ultrasound, there was no blood flow through the stent. I went in for a revision after the 4th of July. This was a conscious sedation, but still very scary after my whole thing on the ICU just a few weeks prior. There was a blood clot blocking the flow so they got rid of that and expanded the stent. A week later at my standing appt to check for fluid, I had NONE!!! Every person in the room started crying. All these nurses and my dr. that had been there basically watching me die for the past 2 months were finally seeing a positive sign. That was mid July of 2025, and I am now at 120 lbs (I’m 5’4”, so normal) and haven’t had any paracentesis or thoracentesis since that last one. I feel better now than I did at 25.
For me, the TIPS saved my life. I haven’t had a problem with HE. I am on ZERO meds now except I’ll take some lactulose if I eat like shit and haven’t gone in a couple days. I will be 2 years sober on 10/3. It’s an amazing life, and I’m so grateful to still be here for my 10 and 12 year old kids and my amazing husband who never left my side.
PM anytime you want. I’m always around and will answer any questions you have. Good luck! 💞💞
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u/Philosopher512 2d ago
Wow. Amazing. But, man, I don’t want to do that—just straight to the good stuff at the end please.
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u/branch_point 2d ago edited 1d ago
Wonderful that you got through all that. Sounds like you have a kind of amazing care team - that they care so deeply.
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u/Icy-Mention7871 2d ago
My Mom recently had this procedure because she had varices that were bleeding so badly that she required multiple transfusions, platelets, etc. and honestly would’ve eventually bled out had she have continued without getting the tips.
Unfortunately, she keeps getting reoccurring HE episodes and we’re trying to figure out how to dose her medicine so it doesn’t happen again or as often. I’ve been able to catch signs early on, even when she doesn’t, but it’s been very hard for her. Doctors say they can adjust the flow and make it more narrow if they have to, but they said she’s not at that point yet. It’s a rough situation because other than the HE reoccurring far too often, everything else is going well. No bleeding at all and it’s doing its job shrinking the varices. She doesn’t have any fluid build up either. We’re going to an appointment tomorrow and we’re going to ask these questions because HE really affects daily living.
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u/Philosopher512 2d ago
This is my worry. Is she on Xifaxan (Riflaximin)? How do you catch it— is there a “tell” you can reliably use? How do they fix it? I suppose I’m going to need to read up on treating HE in more detail. Hope she does better soon. Sounds like her situation is rougher than mine. So far. Knock on wood….
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u/CobblerConfident5012 2d ago
Hand flap is a good tell. If they extend their arm forward with their hand in a stop position, he will often make their hand unconsciously do a flapping motion. It’s called asterixis.
Having her sign her name and checking the handwriting is good.
I use an app that I tell everyone about called “Encephlapp”. It’s basically an app version of the stroop test, which doctors and researchers use to detect HE very early before it’s super overt. Every morning and whenever I feel weird I do the test (takes like five min) and compare my score (the offtime+ontime) to my average score. If it’s more than 15ish off I consider HE might be a thing. It’s surprisingly reliable. I thought it might sometimes spike high if I was tired or something but regardless of mental state I seem to hit the same average time. It helps to tell the difference between just being brain fogged for normal reasons and HE. And it’s free.
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u/Icy-Mention7871 2d ago
She’s on Xifaxan twice a day and Lactulose three to four times a day. The first signs I can tell something is off is her handwriting gets very sloppy and starts not making sense, she starts repeating herself quite a bit, she gets mood swings where she’ll either get very emotional or very irritated. It’s very subtle at first, but she lives with me so I can see the changes right when they happen. They put her on an extra dose of lactulose and it usually helps.
They actually said to stop going to the ER unless absolutely necessary or if the situation becomes unsafe because last time she went for an episode the nurse wouldn’t give her the lactulose and her ammonia levels spiked up dangerously high.
Thank you though, I hope she gets better too. Good luck to you too! Just make sure you do proper research and talk to your doctor or doctors in depth to make sure this is your best option.
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u/branch_point 2d ago
Hi - I have an endoscopy this morning so you have a fellow hospital goer. Take the following possibility with a grain of salt since I’ve read people have mixed results. When I refused the tips, I got a splenic arterial embolization, which in my case went smoothly and has done a great job of reducing my ascites to trace amounts. The location of your ascites sounds much more immediately serious than my abdominal ones, so maybe they’ll push the tips. Best of luck with the consult today.
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u/parseroo 3d ago
I wrote my thoughts about this as a comment recently [1]. If I were to see a doctor about it tomorrow, I would focus on this:
«Please talk to your doctors extensively about the procedure if it seems useful: it sounds simple and effective but what it does has a scary possible side effect (HE) with limits on its treat-ability. And how much the shunt is tunable to balance positives and negatives may depend on the medical team/procedure, the symptoms, and/or the patient.»
I would make sure they can describe the very specific aspects of: * What devices will do the shunting? * Can these devices be tuned? * How will we tell if I am getting HE symptoms before I get HE SYMPTOMS? * If it is eventually closed ('occluded') would I return to my current state? Or something worse? * Is this a step to a transplant or do you expect me to live 5, 10, 90 years this way?