Tips procedure : Hi All, Just wanting... - British Liver Trust

British Liver Trust

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Tips procedure

Carterc1
Carterc1

Hi All,

Just wanting some advice from anyone that’s had tips done? I’ve had a call from my consultant today to say they are recommending it.

I’m awaiting transplant and keep building around 10litres of fluid every 10 days to 2 weeks, I’ve now had about 15 drains and I’m getting a lot of fluid building in my legs.

Would you recommend tips and what success/issues has this caused?

Thanks

Craig

9 Replies

Hi Craig it saved my life having tipps 😊 it also a year or two down the line caused my h.e and ascites they do warn you of that .... I may have got anyway but I will never know...

Is it Leeds suggesting this?

And just so you know it doesn't hurt but they do fit it whilst your awake but on a mild sedation ... I only know that because I had mine fitted when I was in a coma, but six months later they had to go back in to re-adjust it

Carterc1
Carterc1 in reply to jojokarak

Hi JoJo thanks for this! Yeah its Leeds that are recommending it due to my severe ascites. It’s the HE bit that really concerns me though!

Good to hear that it doesn’t hurt!

Craig

jojokarak
jojokarak in reply to Carterc1

You may not even get it everything we do has risks and if you're getting drained a lot that's not great for you either.... It's more preventative and it won't effect you being on the list

Carterc1
Carterc1 in reply to jojokarak

Yeah Leeds have said I’m at more risk of not getting the transplant because all of the fluid is making me immobile and therefore not fit enough! So it’s not looking like I will have much choice

jojokarak
jojokarak in reply to Carterc1

Well you certainly don't want that ... You are going to feel better it made a huge difference and you do need to be fit as it's a gruelling operation x

Hi there. Yes, my tips procedure kept me alive, but to be honest, my quality of life was so bad. I had massive ascites, and they were draining me every ten days before transplant, then I still had it, and they recommended the Tripp’s shunt. I had never had Hepatic enchalopothy before that. After I had procedure I got it. It was terrible. Some of my episodes were two to three days long, with no memory of this whatsoever. It was like having dementia. The last ten months before my second transplant was just a blur. I contemplated killing myself. It was horrible. Anyway, I am sooooo grateful it came out of my body when they did the second transplant. Even though I’m very sick again, I at least know what’s happening. Get advice from your doctor.

Sorry to be a downer, but it’s important to know. Dementia like, personality changes, sleeping a lot. All that.

Good luck!

Kimberly

Carterc1
Carterc1 in reply to dckimberly

Hi Kimberly, thanks for your post. No need to apologise at all, I’m wanting to know as much as possible about the procedure good and bad before I meet with my consultant in Leeds.

I’m really sorry to hear about everything you are going through but you must be a fighter to go through everything you have! Really hope things improve for you soon

Best wishes

Craig

Hi. I had TIPPS done about 10 years ago now, I had no problems at all. At the time they thought it would stop the need for a transplant, unfortunately not, but it did help with the ascites in the interim.

If you’re on the transplant list I’m sure you’ve already undergone many surgical procedures, having the TIPPS will be nothing compared to them.

Good luck

Thanks Florence really appreciate your post! Glad it worked well for you, but sorry to hear that it didn’t stop the need for transplant.

Hope you are doing ok! x

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