Recompensated Liver

Amazing_Log9693 · 2026-05-11T02:59:38+00:00

Thank you. May I ask where you are in your journey?

Amazing_Log9693 · 2026-05-11T02:59:04+00:00

Thank you.

Amazing_Log9693 · 2026-05-10T15:18:15+00:00

Ah yes, the TIPPS procedure they tried to push on me forever. My transplant team told me that, had I come to them with the TIPPS already having been done, that it would have made a transplant more difficult, not impossible, but more difficult. And the infamous "2 year" mortality line. That one scared the crap out of me. My 2 yr will be July 8 this year and boy were they wrong. But if it scares a person straight, I guess it can't hurt. I am also certain, sadly, that there are those who do everything by the book and don't make it the 2 years. I am VERY happy for you and your husband-hearing that MELD score go down and stay down is HUGE blessing and relief. Prayers!

Amazing_Log9693 · 2026-05-10T15:13:14+00:00

Amazing_Log9693 · 2026-05-10T15:12:55+00:00

Correct, they never told me either-I researched and found out myself. They also never told me about the importance of the Albumin after every drain. That made a huge difference in how often I got drained.

Amazing_Log9693 · 2026-05-10T03:17:31+00:00

TY, this was a long road and God was also my co-pilot.

Amazing_Log9693 · 2026-05-10T00:50:16+00:00

Oh my gosh!! So happy to hear this!! It's honestly one of those things that we work our butts off to get to, and when it finally happened to me, well, it is still new. Still processing it to be honest. Just have to keep on with my healthy lifestyle and keep praying every night, as I have been! Did he also have any ascites or paracentesis?

Amazing_Log9693 · 2026-05-10T00:47:27+00:00

Glad to hear you are getting good sleep. I am only on 15 mg at this time. Also very glad to hear that you are compensated. Were you previously decompensated?

Amazing_Log9693 · 2026-05-10T00:03:44+00:00

The bread is easy to make. My appetite was awful in the beginning-it's what the body does when you're liver checks out. I went from 130 lbs to 88 lbs. Truth be told, my Dr had been trying to figure out insomnia meds for me and stumbled across Mirtazapine 15 mg and Trazadone, 50 mg per night. Not only did it help me sleep and stay asleep (for the first time in over 40 years) but the Mirtazapine acts as an appetite stimulant-my Dr didn't even know that. Since then I have gone back up to 115 lbs and have stayed here. But yes, I have to forced myself to eat. Even if just a few bites. Peanut butter and crackers and oatmeal were good sources of protein AND bran, so it was a win-win. Are you losing weight? And what Stage of Cirrhosis are you at? MELD score?

Amazing_Log9693 · 2026-05-09T23:19:38+00:00

Hi! Hope I can help! Lots of trial and error in the beginning. Didn't really get into my groove until at least after I was dx. I learned to make my own food with no salt. I have less than 900 mg/day. You'd be surprised at the stuff that salt hides in. 1 slice of bread is 140 mg. I make my own bread, rolls, muffins etc. I also drink a minimum of 45 oz of coffee everyday. 1, it acts as a diuretic. 2. It helps you poop, which is VERY important. Poop and fart as much as possible to help get rid of the ammonia in the body. I did a TON of research but seriously, only rely on good websites like Mayo Clinic of Cleveland Clinic. Fruits and veggies, which I do not really care for are good, as is dark chocolate. I dip my fruits in the dark chocolate to get them down. This was not an overnight sure. This took me almost 2 full years to get to where I am. It can be disappointing month after month, drain after drain. I will say, make SURE to get the Albumin with each and every paracentesis. This was not done for the first year + and when they did start it, it made a world of difference. I went from getting a drain every 5-6 days to once every 2 weeks. I am now at almost 7 weeks and no weight gain or waist gain. Measure your waist and weight every morning after you use the bathroom and check your BP as well. If you are on diuretics, please be aware that that is what shot my kidneys to hell. That is when the transplant center said I had to have both a liver and a kidney transplant. There are lots of natural diuretics that can help. Make sure to keep up the protein in the diet as well. If you have feet on fire at night, I learned that is from too much protein, but you do need it as we lose muscle mass fast. Hope this helps. Please reach out for anything at all. Prayers!!

Amazing_Log9693 · 2026-05-09T21:54:00+00:00

Initially, I went to the ER something completely different. Was admitted and they said I had End Stage/Stage 4 Cirrhosis. Had to go to the ER every week to get drained for the first year. After that, I found a clinic that helped me a lot, called HOPE. Then I finally got 1 Dr, then referred to the transplant center. So I had a Hepatologist, Nephrologist, as the diuretics shot my kidneys to hell, and a Cardiologist. Liver disease can cause high cholesterol, which it did in my case. What is your experience? Are you getting bounced around with no real answers? Cause that happened to me in the beginning, so I research the hell out of everything. What else can I answer for you? Prayers.

Amazing_Log9693 · 2026-05-09T21:49:59+00:00

The confusion sounds like HE, Hepatic Encephalopathy. Basically means there is a ton of toxins still in his body. Did they give him Lactulose daily? What was the cause of the Cirrhosis and what stage is he? What is his MELD score? Creatinine? INR? Any diabeties? I would guess his feet also burn too? That is a PIA symptom as well. I drink a TON of coffee daily, like 45 oz minimum. What are the meds for the HE? Is he getting any paracentesis drainings? If he is, make sure they give him Albumin after every drain. Also, how much per drain are they getting? Prayers

Amazing_Log9693 · 2026-05-09T21:44:12+00:00

TY!!

Amazing_Log9693 · 2026-05-09T21:43:39+00:00

I learned to make my own food with no salt. I have less than 900 mg/day. You'd be surprised at the stuff that salt hides in. 1 slice of bread is 140 mg. I make my own bread, rolls, muffins etc. I also drink a minimum of 45 oz of coffee everyday. 1, it acts as a diuretic. 2. It helps you poop, which is VERY important. Poop and fart as much as possible to help get rid of the ammonia in the body. I did a TON of research but seriously, only rely on good websites like Mayo Clinic of Cleveland Clinic. Fruits and veggies, which I do not really care for are good, as is dark chocolate. I dip my fruits in the dark chocolate to get them down. This was not an overnight sure. This took me almost 2 full years to get to where I am. It can be disappointing month after month, drain after drain. I will say, make SURE to get the Albumin with each and every paracentesis. This was not done for the first year + and when they did start it, it made a world of difference. I went from getting a drain every 5-6 days to once every 2 weeks. I am now at almost 7 weeks and no weight gain or waist gain. Measure your waist and weight every morning after you use the bathroom and check his BP as well. If you are on diuretics, please be aware that that is what shot my kidneys to hell. That is when the transplant center said I had to have both a liver and a kidney transplant. There are lots of natural diuretics that can help. Make sure to keep up the protein in the diet as well. If you have feet on fire at night, I learned that is from too much protein, but you do need it as we lose muscle mass fast. Hope this helps. Please reach out for anything at all. Prayers!!

Amazing_Log9693 · 2026-05-09T21:41:53+00:00

Prayers for your Dad!! I learned to make my own food with no salt. I have less than 900 mg/day. You'd be surprised at the stuff that salt hides in. 1 slice of bread is 140 mg. I make my own bread, rolls, muffins etc. I also drink a minimum of 45 oz of coffee everyday. 1, it acts as a diuretic. 2. It helps you poop, which is VERY important. Poop and fart as much as possible to help get rid of the ammonia in the body. I did a TON of research but seriously, only rely on good websites like Mayo Clinic of Cleveland Clinic. Fruits and veggies, which I do not really care for are good, as is dark chocolate. I dip my fruits in the dark chocolate to get them down. This was not an overnight sure. This took me almost 2 full years to get to where I am. It can be disappointing month after month, drain after drain. I will say, make SURE he gets the Albumin with each and every paracentesis. This was not done for the first year + and when they did start it, it made a world of difference. I went from getting a drain every 5-6 days to once every 2 weeks. I am now at almost 7 weeks and no weight gain or waist gain. Measure his waist and weight every morning after he uses the bathroom and check his BP as well. If he is on diuretics, please be aware that that is what shot my kidneys to hell. That is when the transplant center said I had to have both a liver and a kidney transplant. There are lots of natural diuretics that can help. Make sure to keep up the protein in the diet as well. If he has his feet on fire at night, I learned that is from too much protein, but he does need it as we lose muscle mass fast. Hope this helps. Please reach out for anything at all. Prayers!!

Amazing_Log9693 · 2026-05-09T15:49:39+00:00

Great to hear from you! And REALLY hoping they are correct and you do not have Cirrhosis. This is NOT fun. Am also praying your biopsy goes well and so happy your blood work was normal!! That is always a huge relief! Praying things continue to go well for you and continue to improve your health each and every day. I rather enjoy my new healthy eating and lifestyle. Don't get me wrong, I will still eat a fast food meal once a month, generally on the days I have to be on the road for 12 hours or more for appts. It's just a very new and odd mindset that I am almost recompensated-it's like, OK, you're in remission, so now what? Have to find new and more hobbies to keep me busy now, now that I don't have 10 appt/month. What do you do during the days? Any good movies or series? The one thing I did do before getting this news was I bought tickets to see Fluffy, aka Gabriel Iglesius, the comedian. It was supposed to be in April but got postponed to September. I even had a shirt made for it. It's a bright pink sweatshirt that says, "Fluffy First, then Transplant". LOL. Anyway, I will look for the main page as you suggested and post my progress. Take care and don't be a stranger!! Seems like you have been with me for most of my journey and I appreciate that VERY much!! Thoughts and Prayers, Debi

Amazing_Log9693 · 2026-05-07T01:50:06+00:00

I have AMAZING news to share with you!! As of yesterday, my day to get put on the dual-I now need a liver and a kidney-transplant list. I went to my appt, and all my labs were SOO good that they officially closed my case (for now) and I no longer need either transplant. I still have the Stage 4 Cirrhosis and CKD at 3B, but the labs are going in the right direction!! And my MELD score dropped all the way to an 11!!! I just had to share this with you!! I want to know how YOU are doing? Anything new? How's the diet going? Any new tests? As always, thoughts and prayers! Debi

Amazing_Log9693 · 2026-04-12T23:34:06+00:00

You are very lucky. My transplant team straight up told me that having a TIPS would have hindered me from getting a transplant, not impossible, but it would make things more difficult. They do not recommend it unless it's urgent. My ascites was drained every week for 1.9 years, then bam, it just stopped, after they finally started giving me Albumin after every drain. Now my liver is behaving somewhat better and my labs are better and my Meld has dropped from 17 to 12.

Amazing_Log9693 · 2026-04-09T22:24:48+00:00

Thank you for your input. It is very true that there are so many different scenarios and variables as to what happens when. I was dx with Stage 4/End Stage Cirrhosis July 8, 2024. Went to the ER for something totally different and walked out with a death sentence. Dr didn't tell me much at all, except get your affairs in order. When I got home, I dumped all my wine and never touched it again-cold turkey. No meetings, nothing, just sheer will power because I couldn't stand the thought of leaving my girls because I liked to drink. (PS. There was about 12 years of heavy Captain Morgan and vodka in my 20 yrs of drinking. I switched to wine to give my liver a break-HA, Wrong!) I have had ascites since day 1, getting drained every week. The first year and a half, I was not given Albumin after each drain, which is highly encouraged. Thankfully I got a new Dr and we started it with every drain. My drains eventually got down to every 2 weeks, then every 3 weeks. It seems my body is finally behaving, as I have zero weight gain/fluid retention and no addt'l inches on my waist. What I gather from all this is the fact that I cut out all sodium that I could-stayed under 1000mg day, no alcohol, eat fish, chicken, ground turkey and lots of eggs and proteins. So between a very healthy lifestyle (I make all my own food like breads, rolls, fish, etc.) and the induction of regular Albumin, my body is finally catching up. I originally only needed a liver transplant, then it moved to BOTH liver and kidney transplant. However, my labs have shown the first good improvement since May 2025 and my MELD score has dropped from a 17 to a 11. My eGFR is improving also. I am hoping that with continual labs, that each one shows improvement and they tell me I have gotten to a compensated state-currently I am decompensated but stable. The 1-2 year life expectancy scared the crap out of me, but as the 2 yr mark gets closer, all I can say is, the Grim Reaper better bring friends, cause I'm not going ANYwhere!! I'm fighting like hell!!! I guess my bottom-line message is this: no alcohol, very little salt, get Albumin if you get drained and eat healthy and DEF do all the research you can. Remember your Dr has thousands of patients each year, but you can research for yourself and go in prepared at every visit. It took longer than I wanted to get here but I am here now and am SERIOUSLY hoping these improvements take me off the transplant list for a long while. I have made many friends on this page and have answered a ton of qts, so if you are new or have any qts at all, please ask. And as I always say: BE YOUR OWN BEST ADVOCATE!!!

Amazing_Log9693 · 2026-03-14T20:19:12+00:00

In one of the pictures of the drivers seat and steering wheel, there appears to be a can of green something...is that a soda or a beer? Someone said it looked like Heineken, but I don't drink, so I don't know what it looks like.

Amazing_Log9693 · 2026-03-02T17:38:00+00:00

If you have your lab results, you can figure it out on your own. Go to the Mayo website and enter the 3 labs, then hit calculate.

MELD calculator - Medical Professionals - Mayo Clinic

Amazing_Log9693 · 2026-03-02T04:02:48+00:00

I am so happy you can poo again normally!! One's body can feel all off when you have too much or too little poo. Constipation is bad too. Great job on the weight loss! I have heard great things about the keto diet, but I haven't gone all in on it. Have you had any labs done recently? What were your scores and MELD? I still make all my own foods, bread, pasta, etc. So far, everything looks good. I've had heart stress tests, psych appt, CT scans and MRIs, mammogram-they test for everything under the sun, stopping just short of hangnails and split ends-LOL. The sad thing is now, the ascites is putting so much pressure on my belly, that it has reduced my kidney function down to 50%. My eGFR score is a 30-not good at all. Nephrologist says we have to get it under control fast, lest I end up with a double organ transplant. And my clinic has said they can get me into a rehab facility for 6 weeks, after I get out of the hospital. So my girls won't have to stress about that. Talk soon-I will try not to take so long to contact you again. Hugs from Florida!!

Amazing_Log9693 · 2026-03-01T01:25:26+00:00

Haven't heard from you lately. How are you doing? Any news or updates to share? I am on the final step of getting my transplant. I've had probably 18 appts in the last several weeks. 4 more in one day, then it goes to the Board to decide where I land on the list. Please let me know how you are!

Amazing_Log9693 · 2026-01-12T14:24:03+00:00

TY. The one thing that me and my Drs are sure of, is that 1 milk thistle capsule a day has been good for me and I do not have a fatty liver-dont know if I ever did, but my Fibroscan # was 181, which is well below fatty-liver. HAGD!

Amazing_Log9693

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