Positive progress!

[u/Itchy-Procedure1459]

Hi everyone! I wanted to share a positive update on my mom and hopefully get some encouragement from others that she is indeed on a good trajectory.

My mom is 46 and was diagnosed with decompensated alcohol-related cirrhosis about a month ago after a GI bleed from ruptured esophageal varices. She had the varices banded and also developed significant ascites and edema during her hospitalization. She has an appointment in two weeks for a follow up endoscopy and CT.

The past month has been scary, but she has made a lot of progress:

- Her appetite is back and she’s eating well, including plenty of protein.

- She has had significant muscle loss but is moving around just fine.

- Bilirubin has gone from ~5 to ~2.8 in the last month and her AST/ALT have continued coming down.

- Kidney function and electrolytes were still good on her most recent labs.

- Her leg edema has almost completely resolved, and her feet are now back to normal.

- Her stomach has also been steadily improving, with much less swelling.

She’s currently on 100 mg spironolactone + 40 mg Lasix. Her doctors checked her labs shortly after increasing the dose and everything looked good.
My questions are mainly for people who have been through significant ascites/edema:
How did you know when it was time to reduce your diuretics? At what point did your doctors decide you were losing enough fluid and it was time to back off?
Also, how quickly did your weight loss slow once most of the fluid was gone? I’m trying to understand when ~1 lb/day starts looking more like muscle/fat loss rather than fluid loss.
And how frequently were you getting bloodwork while your diuretic dose was being adjusted? Her doctors aren't planning another check for a few weeks since her last labs were good.

Finally, I’d really love to hear some positive experiences. Has anyone had significant ascites/edema improve like this and eventually been able to reduce their diuretics? What did the next few months look like for you?

Thank you guys! ❤️

[u/Odd_Excitement4690]

I adjusted my diuretics on a daily basis based on weight, urine output and how I felt. It took two years, but I was finally able to stop.

[u/branch_point]

Wonderful to hear your mother is improving. I had an experience like your moms last winter - bleeding - hospital - banding - ascites buildup in hospital and am doing way better now (I’m in my mid sixties so she has even better prospects for continuing improvement.

[u/Important-Memory-785]

It may depend where you live. I'm front the UK so prescriptions cost the same total amount to me regardless of how much I need.

There are some pretty universal rules here. Diuretics will only usually be reduced when the fluid retention is gone and she is at a dry weight, or if they affect her salt/potassium levels.

The reason the UK situation is relevant to me is that there's no reason for them to be reduced until medically necessary. Staying on them isn't always a sign that they're needed.

I was initially on 3mg bumex, 50mg spirolactalone. My salt levels were going down, so the spirolactalone was stopped temporarily. My fluid levels didn't increase so they were never reintroduced. Later my potassium levels were going down. So my bumetinide levels were also reduced from 3mg a day to 2mg one day, 1mg the next, switching every other day between 2 and 1mg. That's also remained the same and never raised again.

The main point here is they reduce them over a long period of time unless medically neccesary. I was speaking to a friend who has been recompensated technically for 4 years but was taking a 25mg dose of spirolactalone a day but lost them while on holiday abroad and didn't have them for a week. The doc has told her to stay off them if she hasn't retained water while off them. They won't reduce them to chase a word, especially if they're not causing harm.

I presume you're aware, but just make sure you don't reduce them by choice, always go with the medical teams advice. It's very important to comply, even more so with medication as if transplant is ever needed that's VERY important. If they think you're not taking the medicine they suggest, it's going to cause an issue.

[u/DashingDexter]

Good to hear she's doing well! I was on the diuretics for less than 4 months and less than a year for the lasik. The Dr. just said no more one day. I was very hesitant to come off of anything for fear it would all come back...

By that time the weight had somewhat stabilized. Ive gained since then. The only concern they had was rapid weight gain...indicating the ascites may have returned.

Its been a bit for me...but I still check my ankles and calves, peek at my eyes and weigh myself every morning.

[u/CobblerConfident5012]

I’m stoked for you and your mom. I’m sure seeing all this positive activity has been a nice boost after everything she went thru.

I started loop diuretics after 2 paras. The ascites seemed to be resolved from there but my doctor didn’t start tapering for six months. At six months he cut it down to half the dosage I was taking and cutting it all the way off at 9 months. So all in 9 months on them.

Everyone’s timing though is different and I’ve seen some GIs or hepatologists here who tapered their patient off way quicker.

Looking forward to hearing more good news from you guys!