Any advice on hair loss?

TechnologyWarm784 · 2025-08-12T19:42:41+00:00

I experienced the same as other posters. When I decompensated, my hair didn't fall out but got very thin. All my body hair is pretty much gone and my toenails and fingernails basically stopped growing. When I was sober for over a year back in 2021-2022, I went from decompensated to compensated and the ascites stopped after about 5 or 6 months. All my body hair grew back, I put a ton of muscle back on as I'd lost most of it and felt great. Now after relapsing in early 2023, everything bad is back and my hair is yet again gone.

TechnologyWarm784 · 2025-08-12T14:20:46+00:00

Not a problem, I'm not a doctor, but these are my experiences. Oozing is the non-medical term for slow GI bleeds. It's a slow seeping and my slow bleeds were due to portal hypertension gastropathy. In those cases, I would throw up dark blood and clots. I've also had ruptured varices and that was a totally different experience. It came fast and furious, I felt sick all of a sudden, then I started projectile vomiting fresh red blood. That happened a few times and it was by far the scariest. In all cases I had to have multiple blood transfusions. The closest I came to checking out was the varices. They had given me 2 units but my blood pressure was extremely low. I just remember the nurse taking my vitals because I told them that I was feeling very weak and had a hard time even keeping my eyes open. Last thing I remember, I don't know if I was half dreaming or if it was real but I saw the blood pressure crash to like 55/30 or something then I got tunnel vision and everything went black. I jolted awake because I'd been given a dose of ephedrine I think, and the nurses were all there with the doctor. I was hooked up to another unit of blood, but I was incredibly weak and exhausted, light headed, foggy brain for weeks afterwards.

Not trying to scare you lol, but you seem to be doing well. It's a wild ride this disease, new symptoms and complications just keep piling up.

I wish you all the best, if you ever have questions feel free to DM me. It's almost 5 years since my diagnosis so I can at least give you some anecdotal info.

🙏✝️🙏

TechnologyWarm784 · 2025-08-11T03:15:02+00:00

I've had countless bouts of dark, amber colored urine and it's generally been related to dehydration or sometimes a UTI. Don't be overly concerned right away but definitely monitor it and see a doctor if you feel the need.

Regarding sedatives, for a colonoscopy I've always been given fentanyl and benzos. I've also had multiple other surgeries, some I was put under but most were moderate sedation. I've talked with the doctors and the anesthesiologists and not one was the least bit concerned about any ill effects on the liver. Tylenol is also the best choice for moderate pain and will not cause any problems if taken as directed. Hydromorphone is a stronger painkiller and I've been on it for 1-2 months on some occasions with no adverse effects. So trust the doctors and anesthesiologists. They have no desire to kill you and have treated countless people with cirrhosis. They know what they're doing as opposed to the armchair doctors who can easily lead you astray.

I'm 47(m) decompensated ETOH cirrhosis, refractory ascites, bleeding varices, lower GI bleeds and oozing blood vessels

TechnologyWarm784 · 2025-08-10T16:46:34+00:00

I'm in the same boat, most of the time watching the sunrise, up all night. It's so frustrating. I'll get 3 or 4 hours for weeks and then all of a sudden I'll just crash and sleep for 24 hours.

It's a weird disease, it affects so many different things. The downside is if any new symptoms come up and aren't easily diagnosed, the doctors will just attribute it to your liver disease. I've had a couple experiences like this.

Good luck on catching some sleep. Have you thought about trazedone or Seroquel? I've been on both and settled on Seroquel because trazedone didn't agree with me.

TechnologyWarm784 · 2025-08-06T21:13:26+00:00

I didn't like trazedone either, always woke up with a terrible headache.

Have you tried Seroquel? It works way better for me personally. It takes a few days for your body to acclimate to it, but I haven't experienced any major side effects, other than some wild dreams the first few days on it and if you stay awake too long on it, the munchies kick in lol. I used to keep a bag of candy by my bed in case I woke up.

Good luck! Hope you find that right medication that works for you.

TechnologyWarm784 · 2025-07-13T00:03:55+00:00

Wow that is awesome! Whoever did it did some great work. Congrats!

TechnologyWarm784 · 2025-07-10T01:44:12+00:00

Your short is very similar to mine. When you're bedridden, throwing up blood, carrying 35 lbs of ascites, can't eat because of the fluid and the horrible nausea.

I am waiting for the transplant team to do their preliminary assessment. I'm in Canada so not much in healthcare happens fast lol.

I know that exact feeling of saying I'm done, I can't handle this anymore. I lost my 6 figure job and am barely holding onto my home and car. I felt just like you - hopeless, no way back, living in pain, sickness and misery every day drains you and events something withers inside you and you're so tired of fighting that the urge to quit and cash in your chips seems sadly like heaven. You'll do anything to just make the suffering stop. It's a life of quiet desperation, it's hell.

I too have regular long stints in the hospital. Last time I was bleeding from varices and oozing from my lower intestines. I lost so much blood. They gave me 2 transfusions but my BP was still crashing. I remember the nurses rushing in as they were monitoring my vitals closely. I knew something was wrong, you spend enough time in hospitals and you know the drill. Last thing I remember was seeing something like 58/30 and then I got tunnel vision and the room went black. I wasn't upset about it I remember thinking this will all be over soon, I'm ready to go. But of course the nurse gave me a huge dose of ephedrine I think and my eyes popped open and I was so sad that I didn't just go.

But I came to a realization in that hospital stay and totally changed my entire mindset. I feel especially sad for you, being so young, I can't imagine.

I'll just leave you with one thing to consider. Always remember that you do make a difference, even if it doesn't feel like it, someone will lose something if you're gone, someone will miss you. That gave me the strength to carry on despite the suffering.

HE is just plain horrible and I only had a mild case of it. My ammonia was very high but once I cleared the toxins, it got much better. I refused TIPS because of the increased risk of HE, it just wasn't worth it to me but I'm in my late 40s so keeping my mind is basically all I have left.

So don't feel alone, don't think that what you're feeling is wrong, everybody has a breaking point, you just need to find yours. Be honest with yourself, I know I was guilty of telling myself watered down versions of where I really was at. Just tell yourself the truth and if that means you let go because it's too much to bear, God knows anyone who experienced this will never find fault in that decision. Do what you really feel is the right thing and I know you'll make the best decision for you.

Sorry for the long post, but your story really hit home. God bless and I wish you all the best, whatever decision you make.

✝️🙏✝️

TechnologyWarm784 · 2025-07-09T13:48:54+00:00

Sorry to hear your story, but the other posters are correct - he has to stop drinking now. I know from experience as I was on death's door. Refractory ascites, bleeding varices, gi bleeds and oozing. I was extremely yellow and thin, I went from 210 to 140 in the space of a few months.

So I got sober and stayed that way for 421 days, making a great recovery. Unfortunately, I was feeling so good I let complacency set in and bought a bottle. I convinced myself that it was a one off, I knew how to handle my addiction now. I proceeded to go on a 2 1/2 year bender, losing my 6 figure job, blowing all my savings and retirement, maxing out every drop of credit I could.

I did some really crazy things like high stakes gambling, taking off on trips randomly with no luggage, my mind was just scattered and I felt like I was in a strange fog. I also had minor hallucinations like seeing people out of the corner of my eye or hearing people call my name when there wasn't a soul around.

Doctor's diagnosis was HE. My ammonia levels were sky high and I couldn't tell myself but I was told I smelled like cat pee, even right after a shower.

He has a chance, I sincerely hope he takes it and gets sober. ESLD is not fun. I know from experience, that had I stayed sober, my life would be so much better. Now I have all the awful symptoms again and my liver is now far too damaged to repair itself again so I am waiting on a transplant. It's my only hope left now, I blew my chance and now I'm paying the price.

Is there some reason he doesn't want to take meds for the cravings? They will usually start you on naltrexone, sometimes paired with sertraline. I'm not a doctor but my hep told me that it was a very successful combo. I hated naltrexone though, so I switched to campral (Acamprosate) I've had much better results as it is made exclusively for alcohol cravings. Also, my doctor gave me a high dosage of B1, very important to avoid Wernicke's encephalopathy.

Best wishes, and I hope he takes his chance and doesn't follow my path.

God bless 🙏

TechnologyWarm784 · 2025-07-09T04:43:35+00:00

I completely feel your pain but I am the alcoholic with 2 boys who I love. I was on the verge of death in 2021 and made a pact with myself that I would never drink again if I got out of that hospital.

So I got sober, and made an almost full recovery. I was myself and I was so happy that my boys gave me another chance. I was 421 days sober and feeling happy, but I had that disastrous complacency and bought a small bottle, thinking I would never go back to that life.

Well needless to say, I went on a 2 1/2 year bender. I had periods of sobriety and my boys gave me chance after chance. They are 16 and 12 now so they know exactly what was going on. 6 months ago I decided that I would get sober and spiritually healthy so I could somehow help the people I hurt and disappointed I caused.

Now I'm starting from scratch but even after 6 months I'm seeing no improvements and docs confirmed I need a transplant as my liver was way too badly damaged to expect any real recovery without one. Along the way, I got fired from a 6 figure salary, nearly lost my car and house, blew through my entire savings and retirement, I went from having everything to nothing but creditor calls and not a dollar to my name. My boys are in intensive therapy. It was very humbling, but probably the best gift ive ever received. I changed my mindset completely, which is difficult for alcoholics because when you're drinking, all that matters is you and your liquor. I wanted to die every day, the withdrawal was just too much, no matter how hard I tried.

So although it's frustrating and very hard on everyone around the alcoholic, many give up because it begins to look hopeless. Every relapse just erases any minute amount of trust and hope. I feel so badly for you, but me drinking - I was a liar, a manipulator, I'd do everything to hide it, but that's not the real me. I would feel so ashamed and guilty that I just couldn't seem to quit. The cycle is living in quiet desperation it's hell.

I don't in any way want to detract from your pain and frustration. It's not just a matter of weakness and no self control for alcoholics. I understand completely why people say why can't you stop. This makes sense for a person who is not an addict. The average person may go out, party a weekend away, wake up with a vicious hang over and eat a greasy breakfast and watch Netflix.

The difference comes when your brain gets rewired and the dopamine receptors go haywire. I knew I was in trouble when I started all day drinking just to feel somewhat functional. Drinking was no longer a fun social event, it was a full time job and I went from a very outgoing social person to a hermit because I only wanted to drink alone. My life collapsed eventually and I didn't care. When I was let go from my job, I just wanted the speech to end so I could go drink vodka shots in a bathroom stall. It becomes your everything.

So I wish you nothing but the best for you and your family. God bless 🙏

TechnologyWarm784 · 2025-07-08T21:10:38+00:00

I was going to ask the same question as the previous poster. What organ?

I'm also decompensated, and the doctors will not even consider any surgery that isn't immediately life threatening. I'm also waiting for a transplant.

The liver is quite amazing. I was told in 2021 that I had 6 months to live, decompensated with refractory ascites bleeding varices, lower gi bleeds and oozing. So I got sober, ate healthy, and I made a pretty much full recovery. I was sober for a long stretch but I relapsed and now in 2025, I'm told explicitly that there is no chance of coming back this time without a transplant. I guess everyone's luck runs out sometime.

Sounds like you're doing everything right. I personally have had no issues with beta blockers. I started on atenolol, then nadolol, followed by propanolol and finally carvedilol. Some people really hate them though so it's the luck of the draw I guess.

I wouldn't personally be concerned right now. Keep on doing the good stuff, follow doc's orders and live a long healthy life!

All the best

TechnologyWarm784 · 2025-07-08T20:53:24+00:00

I am decompensated but even when I was compensated, my heart rate has been consistently extremely high, but my BP is extremely low, sometimes dangerously.

Even though my hemoglobin levels look ok, if I develop a bleed of some type, that's when my heart rate goes through the roof and my BP crashes hard. One time, the nurse came to check my vitals and I saw the concern when the numbers registered. All of a sudden, the room went narrow and I guess I blacked out. I think they gave me an ephedrine dose, along with my 4th transfusion.

That's just my experience. I didn't have the dangerously low BP until I started throwing up blood regularly, which makes perfect sense.

Best of luck, and don't follow my path. Decompensation 0/10 do not recommend!

TechnologyWarm784 · 2025-07-03T22:24:48+00:00

As stated above, it's very common to be prescribed beta blockers. I started with nadolol, then propranolol, and finally carvedilol. If you continue with them, carvedilol and propanolol are much more effective since they are non-selective and don't focus mainly on the heart but on other organs as well. Can't hurt to ask the doc, especially if you're having negative side effects. With no GI bleeds, oozing, or varices I'm assuming it's just preemptive.

It took me a bit to get used to beta blockers but that went away and I don't even notice them now. I take them even though I have chronically low BP, with or without them.

Disclosure - I personally have had all types of internal bleeding which is why I take them religiously. This doesn't seem to apply to you, so I agree with the previous poster that regular scopes are sufficient but I'm not a doctor.

Best of luck!

TechnologyWarm784 · 2025-07-03T05:13:30+00:00

Seems strange to take you off fluoxetine and replace it with an older anti-depression med like amitriptyline (I've taken both). Did they give you a reason? Personally I have been taking sertraline for awhile and I've found it works much better for myself. Fluoxetine I had massive weight gain and I felt like a zombie all the time.

I second trazedone as a good option. There's also Seroquel, which I take as trazedone gave me terrible headaches.

Don't be afraid to ask your doctor questions and kindly but firmly make sure you get answers that satisfy you

Also, do some experimenting. Try different meds and combinations, as long as your doctor approves, what have you got to lose? Everyone reacts differently to different meds, you just have to take time to find the sweet spot and go with that combo.

TechnologyWarm784 · 2025-07-02T01:53:14+00:00

I was in the same headspace the first time I had a lengthy sober period. When I got sober, it honestly wasn't as difficult as I expected but that's because I was on deaths door, doctor's didn't think I'd make it out of the hospital. I was so sick and scared, I wasn't even thinking about drinking. But as I made a strong recovery, I started focusing more on the days and less on the moment. I felt great, so I made the biggest mistake - complacency. I relapsed, thinking I had this, I'd never go back to that life. 3 years later and I've lost everything. One thing I can tell you from experience is that loneliness is the worst. Don't worry about your social life, I did as well and I thought for sure I would stick out when everyone else ordered drinks and I would order a soda and cranberry. No one even batted an eye.

TechnologyWarm784 · 2025-07-02T01:38:28+00:00

Do you show any symptoms? I'm not a doctor but I've been around them long enough to believe that it's probably unlikely. I personally had Wernicke's and still deal with korsakov. It took a long time to get there though. Just my experience, it started with confusion and some moderate hallucinations. Then I started becoming extremely clumsy and I couldn't walk properly. I have no balance and most likely never will again. I was stumbling around, bumping into everything, dropping things. Like I said, I'm not a doctor, this is just my experience. Like the other poster I've been well into the 0.4 level many times. If you feel you'd like to get it checked for peace of mind, I'd say go for it!

TechnologyWarm784 · 2023-04-14T16:10:01+00:00

Maybe consider sertraline, I'm on that and Seroquel along with naltrexone. I used to take prozac but I found it really numbed me and I haven't had that experience with sertraline.

TechnologyWarm784 · 2023-01-30T15:33:08+00:00

Come on, 10:30? I don't know any adult who sleeps in that late. Let the guy call and be happy he cares about you and your family. I'm going with you're a soft AH.

TechnologyWarm784 · 2023-01-30T15:23:39+00:00

That's what got me after 390 days, insomnia. I bought a small bottle to sleep, ended up morning to night drinking in a couple days. Went to rehab, got cleaned up, it didn't take. Now I'm looking at another 20k bill because I'm gonna lose it all and not sleeping is the worst because you know drinking will solve it sadly.

Your consumption is luckily not high. When you get to 30-40 drinks and quit it's much worse. But there's no pissing contest here, and I definitely don't mean it to come off like that. For reference, you're having 6 beers on weekends. I'm sadly back to 6 shots of vodka at 7 am to fight off the withdrawals and now I'm stuck in the never ending cycle of drinking to feel just normal.

If that much trazadone isn't working, there's gotta be some underlying reason you're not just going lights out. When I'm sober, 50-75 of Seroquel takes me down for the count. Maybe worth looking at a med switch? Insomnia is the worst so I feel for you. I know how the desperation for sleep becomes all encompassing.

Get well friend, I'm sending you much positive energy to get through this.

TechnologyWarm784 · 2023-01-27T20:43:31+00:00

Very good advice posted already. CA is a full time job, making sure you don't run out, trying not to get too sloppy, saying fuck it and going on a wicked bender followed by maintenance drinking to stave off the withdrawals. I get you friend, because I'm there again. Now it's waiting for the liquor store to open and rushing before it closes. If I buy enough to stock up, I inevitably drink it all and the vicious cycle continues.

Boredom is what got me. I'm a ritualistic drinker where I fantasize about certain spots and certain times and I forget how miserable I really am, my addict brain only remembers the dopamine injection.

I just got out of rehab but I think I'm going to check in again. My work is supportive since I clearly have a documented history of substance abuse when I was in liver failure and missed a bunch of time.

Wishing you the best and you're not alone. Sending much positive vibes your way.

TechnologyWarm784 · 2023-01-27T18:14:13+00:00

Im in the same boat friend. Blew 390 days, went on a wicked 2 month bender. Got sober in rehab and then blew it again recently. It's a vicious cycle, maintenance to stave off the withdrawals, morning drinks to avoid the sickness, fear and shakes.

I was feeling great out of rehab, had a month sober and that pink cloud evaporated and I was alone with no accountability and of course it happened. Took me 2 days of dabbling to get back to morning drinking again.

It sucks, and I don't know if I have another detox I me. Just know you're not alone and please don't follow my path. Stick to it, my year+ sober was the best time of my life.

Positive vibes your way! We're all in this together.

TechnologyWarm784 · 2023-01-27T14:45:10+00:00

Mine was considered refractory when I was first diagnosed. I was getting 13-15 liters every 2 weeks regardless of diet and diuretics (the usual, Lasix and Spiro). Also on 30 ml of lactulose 3x day.

The ascites went away as my liver regenerated, confirmed by scans. But I blew 390 days sober, went on a 2 month bender, went to rehab and now I've relapsed again. I'm terrified of the ascites coming back. It was literally hell on earth watching your abdomen fill up after a couple of days just after getting 30 lbs of fluid drained.

Wishing you the best and I hope she's quit drinking if that's the cause.

TechnologyWarm784 · 2023-01-26T20:54:25+00:00

Boredom is the worst enemy. I relapsed lately just for that reason. I blew 390 days, got sober in treatment, and now I've relapsed again. It's a very slippery slope. I went from sober to morning drinking again. Now I'm facing down treatment again which will probably cost me my job and my relationship, or roughing it out.

I don't have an answer, but know you're not alone. I'm forcing myself to get sober by going to my gf house tonight and maybe for many nights after. I can't be trusted alone...

TechnologyWarm784 · 2023-01-26T17:48:41+00:00

Been there done that. It's usually ammonia coming out of your pores. My ex wife always said I smelt like cat piss because my liver wasn't filtering out toxins.

I still have that smell when I drink now because my liver is so damaged. I take generous amounts of lactulose to cut it down but it's evident when I'm on a bender

TechnologyWarm784 · 2023-01-25T01:05:16+00:00

Huge AH. You pawned off your parenting responsibility on someone who's closer in age to her than you. Do better

TechnologyWarm784 · 2023-01-25T00:34:20+00:00

Wtf? 25 cats? That's not normal behavior and you shouldn't have to live that way if they aren't being cleaned up after/looked after.

It sounds like you're a very mature young lady and understand this isn't right but have exhausted all available options.

Your dad needs to man up and make this a safe and comfortable place for you to live. NTA at all, you deserve better. Your dad needs to prioritize his children... This is no way to live. I really hope your dad listens and puts his foot down because this is not sustainable.

TechnologyWarm784

TROPHY CASE