u/KayOh19

Hi all

Quick background: was diagnosed back in July with decompensated cirrhosis with ascites, edema, jaundice and with what I suspect was the beginning of HE. MELD was a 29 at the time of diagnosis and basically was told in the hospital that I needed a liver transplant but would not be eligible at that time. I’ve made massive changes, quit alcohol, dropped a ton of weight and managing the ascites with diuretics. Jaundice and HE are for the most part gone and my MELD is 15 now.

I went back last month for my 3 month follow up and got the positive news that my bloodwork has improved a lot and seems like I’m stable and doing pretty well for the most part. Dr is very happy with my turnaround and significant progress so has tabled the discussion regarding a transplant until December as she wants to see if see I continue to make progress and lower my score more. I see a GI doctor for the first time this week and was told by the Hep about getting an endoscopy done with the GI doctor to check for varices (she thinks it’s likely I may have some) and if I have them she’ll start me on beta blockers. At this appointment she had mentioned Hepquant and getting bloodwork work done as it can tell me how much of my liver is still functioning. She didn’t push me to do it but just let me know about it after I asked about liver function I have left. It isn’t in network for my insurance so it’ll cost me about $2k to get done. I can get the money together to pay for it luckily but obviously it’s a steep price tag and I’m trying to weigh out if it’s worth it to do. Just wanted to get people’s opinion on it. My husband and I were discussing it and don’t really know how much info this will add and if it does, will it change or open up treatment options.

I am 2 months alcohol free today! This is the longest I think I’ve gone in years since I started heavily drinking. 2 months since I got my cirrhosis diagnosis. Ascites and Edema under control, lost a ton of weight and though I do have some trouble eating/appetite and have a little yellow under my eyelids I think I’m doing alright or at least much better than I was when I got diagnosed. Hep follow up appointment in 2 weeks and waiting for my bloodwork to come back to see where I’m at. Fingers crossed!

Hi All,

I'm a bit newer to this sub, for a while I was just lurking, but recently have been a little more brave to comment. I figured I would share my story and just introduce myself but really also want to thank everyone here. I read almost every post just to get more info and see how others are doing while they're dealing with this crappy disease. Sorry if this is long.

I am 36 (F) and was diagnosed with cirrhosis this past July. It was kind of accidental. Back in April, I needed a blood transfusion as I was anemic and had a very heavy abnormal uterine bleeding which often caused issues with me keeping my hemoglobin up. While running routine blood work, the doctor noticed I had high liver enzymes and as a precaution, while I was in the hospital decided to have me get a liver ultrasound just to see. At that time, they thought they may had seen cirrhosis, but the radiologist ended up deciding that what they saw was fatty liver so was given the basic advice of eat better, cut back on the alcohol etc. I had been a heavy drinker (daily) at the time and wasn't ready to give it up yet. I stupidly kept my same habits, and didn't mention to the doctor that I was potentially having other symptoms but in my head it was hard to say what it came from. I felt like I was bloated and uncomfortable, and my feet had been swelling, but I was also obese and to be honest didn't want to know if something was wrong with me, I would explain it away as somethig else and dug my head farther into the sand.

Come July, its time for me to have surgery to have my uterus removed. I had seen the surgeon, and it was decided that because of my weight, the safest and best way to do this was an open abdominal surgery. I had noticed, and my husband as well, that I was slowly getting sicker. Just not feeling well, still having the bloated feeling, feeling fatigued, trouble sleeping at night and breathing. My cousin saw me the week before surgery and she noted after that my color seemed to be off, and that I did have a yellowish tinge to me. Surgery day came and when I woke up in recovery things seemed good. It wasn't until I saw my parent's and husband's completely shocked faces and talked to my doctor that I realized something was wrong. I was jaundiced, my face and scalp were yellow, the urine in the catheter bag was rust colored and the whites of my eyes were neon yellow. My surgeon explained that when he opened me up, ascites started leaking out of my stomach, he drained what he could and looked at my liver and noticed it as not smooth at all, but looked rough. He decided to take a biopsy to send it for testing but all signs pointed to cirrhosis which was later confirmed by the biopsy. On top of all that, it looked like my kidneys were struggling as well. All conversation at that point was about getting a new liver. I spent a week in the hospital talking to different doctors and GI specialists all who told me that at this point, the only thing I could do was change my lifestyle and do everything I could to get to a healthy enough point where if I needed a transplant I could get one. Had an appointment with a hepatologist who told me it sounded like decompensated cirrhosis and gave me the same instructions.

Its been 6 1/2 weeks since that day I got diagnosed. I have not had a sip of alcohol since the day I was diagnosed. I'm done with it for good and never want to drink again. I've completely changed my diet eating way less and sticking to under 1500 mg of sodium a day. I'm down 70 pounds (I'd say 30 pounds was ascites. I had a super fun time during early recovery when my wound opened and I accidently gave myself a couple of at home paracentisis when ascites came pouring out twice and drained 3-4 L of fluid) and continuing to lose weight. I'm still recovering from surgery but am much stronger than I was. My bilirubin dropped from 11.7 to 2.7 and sodium and kidneys all bounced back to normal. I'm on lasix and spiro which have helped my edema tremendously and I don't have the ascites anymore. I go back to the hepatologist mid September to see what the next steps are. My goal is recompensation, but I know that may not be possible even if I do everything right. I just want to thank everyone in this community. The support you give each other is amazing, and it has given me hope being a part of this community (even though I REALLY wish I didn't qualify to be a part of this community). I was given a choice, to continue my lifestyle, or give myself an opportunity to do my best to live as long as I can and I chose option B. This community gives me hope that in chosing that I can achieve that goal.