TIPS procedure for NCPH (non cirrhotic portal hypertension)

[AileenHolden]

Hi all,

I am new to this forum and seeking some information regarding non cirrhotic portal hypertension. I was diagnosed about a year ago and survived a pregnancy. (Baby survived too)

The next step is a TIPS.

Just wanted to see if anyone out there has been through this or know anyone who has. I'm pretty nervous but it seems like this is the last resort to help stop the esophageal bleeds. It's been a bit lonely dealing with this very rare disease.

My story is pretty long how I finally was diagnosed and can go into it more detail if it helps someone. I'm an honest person and would love to help others too if I can.

Thank you in advance

Aileen

[Paulwil]

Hi Aileen

I had the TIPS because of the problems you describe. After the procedure I had no Ascities or varicies at all until my transplant a year later.

There is a risk apparently of a blockage. This would be picked up on a 6 monthly ultrasound. It can easily be sorted.

I hope you get it done soon, it made a massive difference to me.

Best wishes

Paul

[Brett11 in reply to Paulwil]

Tips is good for the bleeding and for the water retention but it increases the bouts and severity of HE. Better the devil you know in my case.

Cheers,

Brett

[Paulwil in reply to Brett11]

Hi Brett,

I had HE when I was admitted with a GI bleed. I had the TIPS then. I didn't suffer from HE afterwards, I was taking lactulose and rifaxamin.

Best wishes

Paul

[Brett11 in reply to Paulwil]

Hey Paul,

I’m on that also. No bouts for about 6 months now. Touch wood.

[AileenHolden in reply to Brett11]

Hi Brett,

Thank you for letting me know. I am hoping I have lower risks of HE due to non cirrhotic liver but you never know. Its good that its on my radar to watch out for.

I am taking Nadolol and Pantoprazole right now. I imagine I will be on this medication after TIPS too?

[AileenHolden in reply to Paulwil]

Hi Paul,

Thank you for responding. Its good to hear about your story.

My TIPS is booked for end of June this year. We did not speak about a transplant as my liver is non cirrhotic. Maybe less chance of HE? I have not had it yet-as far as I know anyways. So far Ive been taking Nadolol and Pantoprazole.

We spoke about having another scope after TIPS to see if there is any banding that needs to be done again. He did let me know about low risks of blockage too.

Its nice to talk to someone who has been through this as its very rare and most people look very confused when I try to explain.

[Meteocal1]

I just had the TIPS 20 days a go due to constant bleeds; so far looks like it’s working, but I was also advised of the possible issues that may come up. I am not taking any meds yet, for my liver seems to be doing ok with the procedure. We are monitoring the ammonia levels, as it is a risk to develop ENCP If it goes up. I do get palpitations now almost everyday after a meal.

[AileenHolden in reply to Meteocal1]

Thank you for letting me know. How long do the palpitations last for?

Post operative how did you feel and what pain medication did you need, if any?

[Meteocal1 in reply to AileenHolden]

The arithmeas last only 30 minutes but now they are becoming less frequent in between. I am now taking Lactulose, however due to my ammonia levels being high.

[AileenHolden in reply to Meteocal1]

I have my TIPS in a week and feeling anxious. Thanks for helping me! Im worried what pain afterwards but Im sure it will be fine. I had heart palpitations during pregnancy so I can relate and its no fun.

[Meteocal1 in reply to AileenHolden]

That’s great! I always wonder why it was not done to me earlier, but I am now less worried of bleeds, and my spleen has gone don to normal. Additionally, my platelets increased. Good luck and enjoy the extra energy you will feel after the proceedure. I did not experience any pain afterwards. Just a slight liver discomfort, like gas feeling for a couple of days.

[Paulwil]

Good luck, I also experienced no pain.

The relief knowing that there is no more risks of bleeds is great!

All the best

Paul

[AileenHolden]

Ok that makes me feel better that you felt no pain. I have been through enough pain, as Im sure most people on this forum has. Also knowing any moment I could have a bleed has been scary too. It will be great to have some relief of that!

Thank you and I will report back soon.

[BJORN]

Hi Aileen, have you had your Tips implanted yet, and if so how do you feel now ? Have the esophageal bleeding stopped ? I went through a similar Tips inplant 14 months ago, the bleeding stopped, I got better circulation, values are stable and now I want my fibrotic liver to start healing. Let me know how you feel and if you like to discuss.

[BJORN]

I just saw the thread, sorry I was late on the ball. So glad to hear that your implant went well. And I truly hope you are feeling better and calmer today.