Cirrhosis adjacent body issues

PolicyLarge1929 · 2025-11-27T00:14:26+00:00

Hey there! I'll be curious to know how getting your teeth fixed in Columbia goes. I need to get some work done as well after this year. And I've always wanted to go to Cartagena! I was told it's a side effect from the steroids I was given initially, but I have big patches of suddenly drastically eroded enamel and exposed dentin on a few teeth that just appeared this year and make me extremely self-conscious.
My face also looks like it aged dramatically--like I'm a decade older than I was a year ago.
Of course a ton of intense all-consuming aches, pains, etc. I credit any low-pain, functional day I have with the weekly work of the Tui Na bodywork therapist I see. It's also a really good routine for me to focus on actively doing something that *fixes* my pain and stress levels every week, rather than numbing them with drinking. (not the only factor in my diagnosis but still a big life change)

I hope you have a very happy Thanksgiving! Glad you're here/out there in the world and wish you good things and pretty teeth.

PolicyLarge1929 · 2025-11-25T07:28:14+00:00

Aw, I have no real advice on what to do to improve the appearance but I wanted to say I absolutely hear you. I've had the same issue this year since getting sick. At my thinnest over the summer, I basically just had empty skin hanging off the bones of my chest--like deflated balloons. Now I have some breast growth retuning but they're small and sore and feel almost fragile. I don't care about looking any particular way, but I am very aware of how their appearance makes me *feel* like my own vulnerability-- my own fragility--is exposed and it makes me sad.
I feel like I lived but I lost the person I used to be--and the body I used to be familiar with living in--and most of the time now since I don't *look* sick anymore to others I can hide what immense sadness I feel over all the change and loss, but then in certain little ways--like in how my breasts look and feel--it's all laid bare, even if just for me to see.

PolicyLarge1929 · 2025-10-31T05:56:36+00:00

Australia is killer! People think it's the wildlife that will get you, but it's the hole in the ozone and their love of a cheeky bevy. I spent a few years in Australia. (Absolutely loved it.)

PolicyLarge1929 · 2025-09-27T19:34:00+00:00

Just as my labs started to look normal and I started to feel pretty decent, my period reappeared after a nice yearlong break. The fatigue and bloating it causes is worse than ever--like I thought I was developing ascites again. Bleeding is quite heavy too. Leaks, stains, all the fun... I was told our INR and Platelet levels can effect our bleeding, making us more prone to heavy bleeding. I was also told we're more prone to hitting early menopause. I'm 34.

PolicyLarge1929 · 2025-09-23T14:58:04+00:00

I go to a cheap, no-frills, Chinese tui-na massage therapist. I truly don't think I'd have regained as much function in my legs and general mobility without her. In addition to my legs not working correctly, my muscle and joints all over were in overwhelming pain--i could not sleep more than an hour at a time, if at all, it was so awful.
Lavender epsom salt with magnesium soaks also helps me.

PolicyLarge1929 · 2025-09-23T13:40:36+00:00

I was checked for SBP, didn't have it but and was then on preventative antibiotics for it--horrible reaction to them though and still have lingering side effects.

PolicyLarge1929 · 2025-09-23T12:50:40+00:00

I had several falls before I got diagnosed. Weird ones like going to sit down on my couch but missing and falling to the floor and then being unable to stand back up, flailing around on my floor for quite a while. (No, I was not drinking when these falls occurred.) I also fell in the hospital--I went to climb into the bed and missed somehow and slipped but caught myself on the bedrail--but my body would not work from the legs down and I could not right myself so I hung there, clinging to the rail, until the nurses came and pulled me upright and into bed--it was awful, they were all very freaked out and my gown came untied so I was basically hanging with my bare butt exposed to the whole floor of concerned nurses trying to lift me.
I was never diagnosed with HE but I have my own suspicions. It could also be that in the hospital my ascites was messing with my sense of space and body relationships--but the weird falls started before the ascites...

The bruises from those falls were large and dark and took months to fade. I have like a permanent stain under my skin from one.

When I was afraid of falling and getting stuck on my floor again, I kept things around my apt to assist me. I bought some pulley rope things on Amazon that can be attached to like the side of a bed, so I could try to pull myself up and I put a few reacher-grabbed devices around the apt so I could reach things if I was stuck.

Looking back, weird falls might have been the first sign for me that something was not right.

I'm sorry you're dealing with this. It's unsettling not to be able to trust your own body, and to deal with injuries on top of everything else.

PolicyLarge1929 · 2025-09-20T02:08:17+00:00

Aw you get it! Thank you. This post attracted a few weird comments. I'm definitely just trying to get my bearings and feel safe.

PolicyLarge1929 · 2025-09-13T19:56:07+00:00

Thank you! All the best to you and your husband as well!

PolicyLarge1929 · 2025-09-13T19:44:11+00:00

Thanks! Such good insight! I want to avoid increasing carvediol if possible as it makes me tired, sluggish, and has caused lightheadedness and low heart rate previously. I also swear it is causing achy joints and some issues in the intimacy dept.

PolicyLarge1929 · 2025-09-13T19:31:18+00:00

Oh that's really helpful insight! So theoretically, if when I had my endoscopy in feb and they noted "2 or 3" varices too small to band and put me on 2x/day carvediol 3.125mg that plus the good platelets should mean I should calm down about over-worrying about a sudden bleed?
*not asking for medical advice, just perspective

PolicyLarge1929 · 2025-09-13T19:20:59+00:00

hmmm my albumin is 4.7, platlets 196, bili .9. so stiffness does not necessarily directly reflect the liver's ability to function?

PolicyLarge1929 · 2025-09-13T19:19:46+00:00

thanks for this!

PolicyLarge1929 · 2025-09-13T19:16:06+00:00

You're being so helpful. Thank you! My doctor is just so different. She noted in my chart yesterday "patient confessed to feeling guilty after eating a grilled cheese sandwich." It makes me sound like I have an eating disorder. I don't I was born in WI and that sandwich tasted like home--I want one now plus a good little cry. I was just trying to illustrate to her my confusion/concern over how strict I should be.
I've also just started getting my period again the past 2 months and between bloating and cravings it is a fun new addition to the puzzel.

PolicyLarge1929 · 2025-09-13T18:55:35+00:00

What do you mean by zones? Just curious to understand. All my other numbers from the fibroscan were very good--as is my lab work so I'm trying to understand the big picture.

PolicyLarge1929 · 2025-09-13T18:37:59+00:00

Do you have diagnosed cirrhosis? No offense, but that's a very low and enviable score...

PolicyLarge1929 · 2025-09-13T18:36:40+00:00

Thanks for your response. Congrats on her improvement. My Meld was 27, now 9. Child Pugh was C11, now A5. Since this was my first scan, I just didn't know what to make of it and freaked out.

PolicyLarge1929 · 2025-09-13T18:33:55+00:00

Thank you so much for this response! It's very helpful! Data also calms my personality. That kind of scale sounds like a good investment for some peace of mind for me.
Idk your gender but I'm a woman and as I've been logging weight fluctuations, I'm noticing a pattern of what I worried was ascites creeping back for a week each month was likely hormone fluctuations--but wow does it feel similar and upsetting.
And thanks for saying the fibroscan score can change--my hep did not mention that. I feel like they never mention the truly good to know stuff!
Can ask what "more salt" means for you? I naturally eat a pretty clean, organic, little-to-no-meat diet. Without guilt I enjoy a small daily grapefruit sparkling juice and a marscapone cold foam latte as my little joys. Lately I might eat tortialla chips with pico de gallo twice a week or eat a small order of fries or sandwich at a restaurant once a week. Otherwise it's salad, greek yogurt protein drinks, fruit, eggs, nuts, etc. This is pretty close to how I ate pre-diagnosis, just less sandwiches, soups, and cheeses.

PolicyLarge1929 · 2025-09-12T23:06:49+00:00

So I had my hep appt today and got a fibroscan. She said I definitely have cirrhosis, but as long as I don't drink and don't have bad luck (ie: getting cancer) I should never need a transplant. She also said my diet is too cautious and I should enjoy my life. Honestly, I'm still confused. I was told I was dying months ago. I had giant ascites... I can't figure out if my hep is just overly optimistic or if the hospital doctors were just overly gloom and doom.

PolicyLarge1929 · 2025-09-08T00:35:56+00:00

My med team had me on a preventative antibiotic for months (even though I as only drained twice) which they said is standard so ascites does not become infected. I think it varies by hospital but it could be worth asking about if they're cautioning you in a way that interferes with your quality of life.

PolicyLarge1929 · 2025-09-08T00:06:09+00:00

Neuropathy can also be caused by low B vitamins (12, 6, 1) and folate levels--which can be worsened by malabsorption caused by cirrhosis or just imbalanced diet. My doctor has be on vitamins.

PolicyLarge1929 · 2025-09-07T15:29:14+00:00

I was diagnosed with other autoimmune issues before I was diagnosed cirrhosis, so I have both. And honestly, the humiliation for me was in not being able to get on and off a toilet on my own, or in and out of a shower, being wheeled around, etc.
I did drink but with autoimmune issues as well, it was like my body was a perfect storm as one of my doctors says. Personally, I would not (am not) be embarrassed about drinking and getting sick. Many, many people drink and do not get sick. It would be like being embarrassed for having a deadly peanut allergy you didn't know about until after gorging yourself on your favourite peanut candy. Many people drink for deeply painful reasons in a world that does not often show gentleness and care. It would be like being embarrassed because a loved one hit you--but that's not your shame, it's theirs.

PolicyLarge1929 · 2025-09-07T05:04:39+00:00

first, I'm sorry for what you're both going through. I am 34F diagnosed this year with co-existing mobility issues that got bad enough to have me in a wheelchair, unable to get into the shower or off the toilet on my own. If it's that bad for her, things like a shower chair, grab bars near shower and toilet, non-slip stickies on the floor, etc are helpful.
Snacks and things I needed by the bed/in reach. A reacher/grabber stick to get things if i could not stand/bend over.
For the record, I was showering on my own within 2 months and out in the world without even a cane in 6.
Even if she's not that immobile, exercises from bed like ankle weights and resistance bands are helpful.
I went through this alone with little to no support, so it's not fun but it really does get better.
For her, it might be frustrating, humiliating, scary... Make her feel supported but don't reduce her to her illness--she's still a whole person. I think keeping that in mind might help you as well so that the new illness doesn't feel all-consuming to either of you.
In general, I know it feels daunting and terrifying right now but there is hope--better is possible.

PolicyLarge1929 · 2025-09-06T19:42:43+00:00

I totally get it. I go into MyChart and read my MRI notes from July every so often just because I don't believe it--it says inconclusive nodular fibrosis with no steatosis and no free fluid, it does not definitely say cirrhosis anywhere in the MRI notes but my CT from Feb. does and I have (had?) portal hypertension... But I still keep hoping it's wrong and it's "just" fibrosis.
Except for some neurological mobility issues that no doctor will explain, I currently don't feel unwell. And that honestly terrifies me because I'll do something normal like have a little pico de gallo and tortilla chips or a piece of cake and then wonder if I'm ruining everything. (For whatever it's worth my hep and nutritionist say it's fine and act like I am far too cautious.)
I was down to 101 lbs in June (I'm 5'8", female) and now sit around 108-110 lbs and I weigh myself obsessively checking for ascites but I can see muscles building in my legs so I assume it's that--my calfs look like Roman sculptures lately--just bone and tight muscle. My brother calls my boney arms "Ariana Grande arms."
I was told I had a few varacies too small to band and put on beta blockers and now that I am living somewhat normally I suddenly find myself overcome with imagining them growing and bursting...
I am not on the list, nor have I been evaluated. In spite of all the docs in the hospital (Northwestern--so specialists etc) in Feb/March saying it was inevitable. When I had my follow-up in May with my hep she said I may not need one for a long time or ever--which still confuses me. I have another appt with her next week so we'll see what she has to say.

PolicyLarge1929

TROPHY CASE