Constant drains every 3 weeks

[bushburywolf]

Having to be constantly drained every 3 to 4 weeks, but I'm getting worse not lasting more than 2 weeks before I'm really struggling, getting short of breath and can hardly walk, it's not the most comfortable procedure to keep going through but it does offer a short bit of relief, just wondering if anyone has had a drain done and left in so the fluid doesn't build up and empty it yourself or a nurse emptying it

[KingsKidEveryDay]

Hello,

I am sorry you are going through this.

I was the same way last year I was going every week in the end, my life was an okay 2 days a week after my drains, then started filling up again.

I have heard of leaving in the tube but I decided to have the Tips procedure done. I have not been drained since.

It changed my life. Anything we choose has risk but for me this was my choice.

I placed my faith in God. I have a wonderful Hepatologist and team at Emory in Atlanta.

I pray you find relief soon. Talk to your IR and see what your options are.

Praying for healing and relief, Tracy

[bushburywolf in reply to KingsKidEveryDay]

Tracy, thank you I will be asking the question, it's not the most comfortable procedure but like you say you only get a few days relief, hope you are doing well

[juneblue]

Sorry to hear about that. It’s a horrible condition. Ascites is the worst symptom and last one I’m dealing with after cirrhosis diagnosis. I have a compensated liver now but it was a long uphill battle. You didn’t mention anything you or your doctors have done to combat the issue. I had to force myself to move and attempt to exercise( little things like going to the mail box, standing, walking from one room to the next, anything to get some type of exercise in). Watched my salt intake and took my diuretics. The drains became less frequent to nonexistent. I’m in the best shape of my life. Like Tracy said, without God I wouldn’t be hear. He literally saved me. I was and am still not alone. God blesses and loves you. I’ll pray for you.

[McEwan1962]

hi, I really sympathise, before transplant I was having drains every 6/7 days. I couldn’t tolerate diuretics and my team didn’t want to do a TIPs. I found something called a Long Term Abdominal Drain (LTAD) however I’m not sure what the benefits and the risks are and was fortunate to have a transplant and didn’t need to find out more. I hope you find something that helps🙏

[McEwan1962]

the other thing I found for ascites, but again didn’t look in depth was something called an Alfa pump. Sure I found something on the BLT site and NICE guidelines👍

[Rshc]

are you able to take diuretics? When my partner was having drains he found that they only removed so much , but the diuretics were more effective

[bushburywolf]

I'm taking furosemide 80mg but allergic to the other one, but finally got an appointment at the QE hospital, hopefully they will start to assist me with the transplant process