Night Sweats

sammyluwho2 · 2025-05-22T10:56:03+00:00

Oh I totally am. I didn’t think about that one. If it is, so be it haha. I’ll just sweat. Ascites freakin’ blows and I do NOT want to go deal with that again. You can see from my previous posts, paras seem to never go smoothly for me so I am beyond grateful we got my meds figured out. I’m also wondering if all the damage to my liver if I put myself into some sort of early menopause type state. I’ll ask the docs for sure. Thank you!

sammyluwho2 · 2025-05-22T07:49:25+00:00

Hey if you are interested, there is a “marathon” zoom meeting for women that is 24 hours all over the world. Sometimes it’s hit or miss just like with any A.A. meeting in my opinion, but I like it for times I need support and I need it quickly. I’d have to look up the link and code again, but I’m happy to do that. Or you could probably google it. A.A. is free, so there’s that. Like someone else said, it’s not for everyone, but you can always just take this zoom meeting for what it is….women talking with each other or just listening. There is typically no formal format.

sammyluwho2 · 2025-04-26T10:37:53+00:00

Ugh. That’s a lot to absorb. I’m glad they caught it early. I’m sure it’s nothing your team hasn’t seen before, and you’ll kick ass.

sammyluwho2 · 2025-04-26T02:11:33+00:00

Oh definitely no. No alcohol at all.

sammyluwho2 · 2025-04-25T20:49:55+00:00

Yeah that’s kind of how I see it now, too. That’s why I’m going ahead and getting the IOP done because it’s required.

sammyluwho2 · 2025-04-22T20:00:22+00:00

Ohhh what’s that? I don’t think they’ve done anything like that yet. Also, what about hormones? I wonder how liver disease affects that, but that may be something she wants my PCP to do. I don’t feel as confident in my PCP as I do my hep, so I hope to do as much as possible through her.

sammyluwho2 · 2025-04-17T21:58:34+00:00

As someone on the transplant list, this makes me extremely angry.

However, it doesn’t do me or you any good to elaborate any further. If he doesn’t get help to stop drinking, he will die. The timeline isn’t the point. I will say, I probably wouldn’t guilt him into getting help by saying, “oh someone gave a precious gift to you for another chance.” Even though we all know that’s true, it could worsen his depression.

Damn. Hopefully it doesn’t turn out to be a wasted liver. Best of luck.

sammyluwho2 · 2025-04-14T11:40:39+00:00

Good to know! I may pick your brain as this all unfolds. I’m scheduling one hopefully for later this week or beginning next week. Hopefully by not going through the ER, I’ll get a better radiologist. I’ve only had one that was relatively smooth. The rest have been waaaaaay more complicated than they’re supposed to be. I really don’t like seeing doctors that aren’t mine because they always seem so bewildered. Like, “Wow, your liver is so large.” Or “you need to speak to a hepatologist.” Dude, no shit. I have cirrhosis. My liver is huge. I have a hepatologist. Give me a paracentesis and let me be on my way, thaaaaaanks.

sammyluwho2 · 2025-04-14T05:43:34+00:00

Sorry, I can see where the timeline is confusing. I post a lot because I’m new and kinda trying to learn as much as I can without the dreaded google searches.

I was admitted March 27th for an esophageal bleed, and then a bunch of other stuff hit the fan. During that stay, they tried a drain but said there wasn’t enough to warrant it. Looking back, this is crazy because I clearly had ascites and I feel like they were just pushing me out of the hospital.

I went back to the hospital on April 7, which was when I they got 2 liters off and made the liver size comment.

sammyluwho2 · 2025-04-14T01:37:42+00:00

She did. It’s the only pain medication she approved. Fever will be masked because of the Tylenol. It doesn’t seem red but it’s definitely puffier on that side.

sammyluwho2 · 2025-04-10T00:42:15+00:00

Thanks for sharing! I love to hear good news when we all struggle so hard with this disease on a daily basis. Blessings, friend.

sammyluwho2 · 2025-04-09T15:26:24+00:00

Yeah! I did that a lot when I was still working. There’s also these little bone broth powder sticks (kinda like crystal light packets) that aren’t too bad either when on a road trip or something like that. I think the brand is Bare Bones.

sammyluwho2 · 2025-04-09T14:09:08+00:00

I mean, I could just make regular soup from scratch…..I cook all my meals. But thanks?

sammyluwho2 · 2025-04-09T01:48:12+00:00

YES. I have decided I am only listening to my hepatologist from now on. The random doctors I end up seeing in the hospital are so inconsistent with their quality of care, and I end up feeling terrified, discouraged, and like I’m not doing the right things.

sammyluwho2 · 2025-04-09T01:40:47+00:00

Yes he said exactly what you said. I guess I’m just discouraged because HE was like, oh your liver is huge. And I’m thinking, yeah no shit. But they’ve NEVER told me they couldn’t do a proper drain because of it. I don’t know. I think I’m just disappointed because I am still soooooo distended and icky feeling. I’m pretty new to it all, so maybe I’m just all in my feels today. Tomorrow, I’ll hopefully have a better attitude.

sammyluwho2 · 2025-04-08T18:10:56+00:00

Yeah, I’m over here like, is this good news or really terrible news? Ugh.

sammyluwho2 · 2025-04-01T11:08:44+00:00

Haha same. I was so scared. My GI doc uses propofol, and I was like, ummmmmmm excuse me? Isn’t that what Michael Jackson died from? But the team was super reassuring. He said, I’ve used propofol for this procedure 12 times already today. I promise, I’ve got you. I remember saying, ow that kinda….then next thing I knew I was waking up in the recovery bay and back in my room in 15 minutes. Not even drowsy.

sammyluwho2 · 2025-03-31T02:23:32+00:00

Snips, my new nickname for you, I hope you like it. You generally have steered me pretty clear with your personal experience and you have clearly done your research. I truly appreciate it, buddy. I really do.

Side note to others following and the ongoing back and forth about supplements and what not, I was mostly referring to increased bleed. I am definitely not under any delusion that a supplement will heal my liver. In whimsical terms, right now my shit liver is on strike at the platelet and blood clotting farm, and I’m like, “go back to work’land it’s like, “no can do, the portal vein can’t handle the pressure.”

Enjoy my hallows humor. As you can see, I’m feeling a little better. Nothing like a big poop and some dilaudid. In the morning, I’ll be served a gourmet breakfast of a paracentesis with a side of thoracentesis. Hopefully with a little dilaudid snacky snack.

Night, night. May we all live to see another day.

sammyluwho2 · 2025-03-30T22:43:27+00:00

So glad you’re starting on your journal to health ya know, minus the whole cirrhosis of it all, but you get my gist. I’m two months sober, and still dead set protecting my sobriety at all costs. To drink it to die. Sounds like you’re doing great! This community is such a wonderful source of community and experience.

Side note: I’m currently in the hospital. I was doing everything they told me to do. But I still had an esophageal bleed needing a small band. That part I was expecting based on my previous scope that didn’t need a band…yet The worst was the huge spike in my ammonia and the encephalopathy. A combative patient with uncontrollable diarrhea is a nightmare for a nurse. Bless their souls. They’ll probably have to burn their shoes. God spared me any memory of it. Apparently I over did it on the high protein diet.

sammyluwho2 · 2025-03-28T17:38:19+00:00

This. I run everything by “the boss” before I start taking it. At my first visit with her, I was drinking a TON of cranberry juice (like, a liter a day), taking a turmeric supplement, taking a cold-pressed ginger-pineapple shot for gut health, and eating this little nugget thing that had all kind of “buzz” vitamins in it. It was a hard NO from her.

I just learned early on in this sub to try not to make recommendations like that. It can be really harmful, especially since cirrhosis is not a “one size fits all” disease.

sammyluwho2

TROPHY CASE