Went for TIPs on Thurs. It took till Fri late afternoon to b told it didn't work or sumert? They couldn't get the stent in the portal vein????? I'm bk to drains unit on Tues for bloods n scan.
Does anybody have any idea what will try next? Will they try again?
I feel devastated and sad but need to fight on just don't no how!????
Please can any body help me? Thanks.
segy,
I am so sorry.
I know you have probably tried all of the things below but I felt it best to share everything.
Lasix
NO salt, limit sugar
Limit fluid intake
Whole grain small meals, no boxed food, fast food.
Walk/ lose a few pounds.
Have faith, through every test is a testament.
I will keep you in my prayers, Tracy
Thank you for taking time to reply ❤️
The first attempt at putting a stent in my bile duct failed, they tried again a few days later after the inflammation had gone down and were successful this time. Good luck.
If TIPS proves not to be an option or your current hospital feels they can't proceed with it you may need to be asking the question about referral to a transplant unit.
Even if you don't want to contemplate t/p the transplant units often have a higher level of expertise and potentially more treatment options to explore. They don't automatically jump to t/p.
Diuretic resistant ascites often means that transplant may be necessary.
Best wishes, Katie
Thanks for replying ❤️ I really don't like the idea ov transplant I'm only 39. I wasn't to happy with the TIPs idea, but seemed it seemed a better option. My Aunty has said about giving me 1 of her 'lobes'? I really want to beat this it took so much to stop drinking 😐
It may end up that t/p is the only available option left. At 39 you are young enough to go on to have many more (hopefully) healthy years post op. They only give t/p when all other options have been explored and if t/p is needed it's to save your life.
I am sure no one fancies such a big op but the other option is too attractive either. Having met a good few post transplanted people now it doesn't hold half the fear it had and hubby and I are just hoping he doesn't wait too long for his now 'cos he literally has no life just now - eat, sleep, meds, sleep, loo/loo accidents, confusion and repeat.
Katie
Hi Katie what other options are there, I feel I'm being kept in dark about things and communication between the staff is very worrying 😟
The only other option i've heard to TIPS is the Alfa Pump though I haven't ever heard of anyone on the forum having one fitted. This is where referral to a transplant unit might be best as they will have knowledge of what other treatment options are available.
The alfapump ® is an implantable medical device that pumps ascitic fluid from the peritoneal space to the urinary bladder. It is a subcutaneously implanted battery-operated pump that automatically and continually moves ascites from the abdominal cavity to the bladder, where it is excreted naturally from the body. The pump reduces or abrogates the need for repeated paracentesis in patients with recurrent or refractory ascites.
Some medical staff do tend to cling onto information and that's where you have to get yourself a bit more clued up so that you can make the most of your time with them and ask the questions that you want answering - the more knowledge you have yourself, the more pertinent your questions can be.
If transplant is mentioned it's because all available options have been explored and ruled out and in that case the operation becomes a life saving one. That's where the choice of transplant becomes one of transplant or a sad demise.
Katie
I have heard of people having Long Term Abdominal Drains (LTAD) though I don’t know the risks. I had ascites drains every 7/8 days pre transplant, so I do sympathise. I did the best I could to keep myself as fit as possible and eat and drink as best I could🫂
I hope your appt goes well tomorrow.
Is someone going with you to rhe appointment? If you're struggling to take in information having someone with you who can write it down or help you ensure that all your questions are answered.
They might try again with TIPS but my understanding is that they are pretty notorious for failure, so it's possible that if it failed once they will not try again.
My mum, advice greatly needed
Feeling great!
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