New to ESLD and scared

I am 40 y/o male and was just diagnosed with NASH, Cryptogenic Cirrhosis Stage 4, Class A, MELD 8-10. I am scared out of my mind. I've been googling everything and freaking out, but I've been checking a lot of forums on here and it seems like many people here have been surviving and living with this and supporting each other. Biggest thing scaring me now is that my platelets keep dropping: 67 in April, 55 in June, and 44 in July. The other MELD categories increased above normal levels in my labs last week except for the sodium one. My liver enzymes were normal last week for the first time ever in my life, first checked 15 years ago. I hope this means that I have stopped damaging my liver. I have a Hepatologist, Nutritionist, and therapist to help me. But I just recently met them so I don't have a lot of confidence in them "yet". Hopefully that will improve with time. I'm down from 270# a year ago to 210# now and probably have another 20# to lose but I'm trying to lose slowly. I eat mostly veggies, fruit, Greek yogurt, lean chicken breast, olive oil, coffee. I use myfitnesspal to track my protein and sodium. I wonder if I've cut my dairy too low, trying to stop the inflammation, as I think dairy helps with platelettes. Lots of stress right now: this new diagnosis, moving cross-country, buying house, new job (and I now commute instead of working at home for last 3 years), and helping my wife get a job (I've supported her financially for last 15 yrs, but want to make sure she is prepared to support herself if/when I take a turn. I'm also thinking of joining a phase 3 drug test to see if it can reduce fibrosis. I'm not sure if that is a good decision (so more stress there too). I actually feel better than I've felt in years since I am eating well and not drinking and also getting more sleep instead of working myself into the ground everyday. But saw the worse labs last night and didn't sleep much, a little lightheaded - not sure if due to stress or worse MELD numbers (HE?). I know there is no crystal ball but I want to do everything I can to live as long and as well as I can.

ppm guy, thank you so much for the note. I'm really not doing well with the stress and anxiety right now. Spending a day with the wife and kids at the YMCA, doing some yoga and swimming. I know that stressing about this doesn't help anything and i guess if my platelet drop was that bad then my hep dr would have called me. I'm just so new to healthcare in general. It seems like many people on here live with this disease and manage it for a long time. I see you joined in 2010. I hope to be giving advice to others in 7 years like you.

I agree with your PA, about your numbers bouncing around. im puzzled about your INR. your enzymes were normal, your bilirubin is ok. But your INR is high. normal range is .1-1.2.. yours is 11.3. That will be monitored often.

With my cirrhosis, which has improved somewhat, I get a checkup every 6 months. this includes;
1. full abdominal ultrasound to check for cancer. (cirrhosis makes you much more susceptible to cancer)
2. A cmp panel. (bloodwork for liver, kidney,fluid and electrolytes, sugar and lipid panel).
3. on my initial visit with Gi dr. he did a endoscopy, to check for varices in my throat. With your INR, that should be done for you. these tests are protocol for cirrhosis.
two common drivers of nash, is high triglycerides, glucose, and bad cholesterol. Checking these periodically is important.
I take a small dose of Lipitor daily to help keep my cholesterol in line.

Keep up the good work on your diet. And I like the fact you are having fun, getting your exercise.
talk to you soon

Yes, that is a big difference!!!

MamaLama

Thanks so much for your reply. It's really overwhelming sorting through advice. Your words mean a lot to me. My Drs. are great, experienced, and smart but seem to be prioritizing there time reacting to patients as complications arise, which I don't necessarily disagree with. But from my own (selfish) standpoint I would like more specific advice on how exactly to prevent getting worse (if that is even possible).

I do have a Hep Dr, but only one Dr visit so far. I spent most time with his PA who was really great and helped put things in perspective. I do not have a Hem Dr at this point. Perhaps I should ask my Hep Dr for a referral? I am so new to healthcare it's hard to know what to do.

At my appointment the PA told me I have a 3% chance of getting liver cancer and I will be screened every 6 months. He said if they find cancer then a transplant would be a great option for me. However, I wonder if that will change with the low platelets. But when I asked about my platelets dropping from 67 in April, to 52 in June, to 44 in July he told me not to worry unless they drop below 10 and/or I cannot stop bleeding. As I mentioned before I wish there was a way to be more proactive and prevent the drops. But there seems to be little focus on this or maybe it really is impossible to improve now that my liver is so damaged. I wonder what else besides low platelets would keep me from a TP. And I guess it's hard for me to understand how my platelets were better in April when I was drinking alcohol, eating unhealthy, and 30 pounds heavier. Now that I made these lifestyle changes my platelets are getting worse and so are the other MELD numbers. The PA and others on here have explained that the numbers will bounce around. I just figured it would be good to understand cause and effect so I can take the right actions now and not just wait for something bad to happen. Does that make sense? Maybe I am looking at this wrong though. Perhaps I need to have a better perspective on what I can control and what I cannot control. Again, I am just so new to this.

Also, what are the PSA scores that you mentioned? Are those related to LT?

A few other questions for you or others that may know:
1. Has anyone read the book, "The First Year: Cirrhosis: An Essential Guide for the Newly Diagnosed."
2. Has anyone read the book, "The Liver Loving Diet: Your Best Friend's Guide to Low Sodium and Healthy Protein."

Thanks so much for you help!
Cir17

Post Edited (Cirrhosis_2017) : 8/5/2017 2:53:32 PM (GMT-6)

Thanks MamaLama,

Yes, I am not drinking. Here is what I have been doing this last 3 months (and praying I can maintain or improve this further):
1. No alcohol
2. Low sodium - Usually below 1,500mg and always below 2,000mg (averaging 1,200mg)
3. Lean protein (no red meat) - Between 115g to 124g protein (boneless/skinless chicken breast, salmon, greek yogurt with no fat and no added sugar
4. Lots of leafy green veggies - Spinach, Kale, Chard, Broccoli
5. Healing foods (known to decrease cancer and death from cirrhosis) - 2-3 cups coffee, 1 tbls olive oil, 1 cup of blueberries
6. Healthy carbs - Organic steel cut oats, whole grain breads with at least 3gm fiber and no enriched ingredients
7. Low calorie diet - Roughly 2,100 calories a day, 6 meals per day of 300-400 calories each
8. No raw shellfish
9. Rest - Trying to get to bed between 10pm and 11pm and waking up at 6am
10. No supplements or meds - Drs said no ibuprofen but I can have 500mg Tylenol 4x a day (but I'm trying not to have any at all), not taking any vitamins since I think my diet is pretty good, but Dr said ok to take multivitamin
11. Some dairy - 1 cup of no fat skim milk per day and occasional mozzarella
12. Hydrated liver without overworking it - keeping daily liquids to around 80oz to 100oz
13. Exercise - 10,000 steps per day and activities with the kids on the weekends
14. Vaccinations - Made appointment for pneumonia vaccination and I must also get flu vaccination
15. Manage weight - Currently 205lbs, losing 1lb per week until I get to 184lbs, then maintain. I am 6'1"
16. Manage stress and anxiety - I am still trying to figure out how to get this under control and I am making progress with great support on this message board
17. Work/life balance - Stopped burning the midnight oil and keeping work hours to 8hrs daily

Here are my latest stats:
1. MELD: 10 (Bilirubin 1.2, Sodium 142, INR 1.3, Creatinine 0.94)
2. Class: A5
3. Thrombocytopenia - 44 platelets (dropping 10 per month for last 3 months), PT time 16
4. Liver enzymes - ALT 47, AST 27 - normal range for first time ever (looks like my new diet is working)
5. No ascites, no portal hypertension, no esophageal varices
6. Excess copper in my last liver biopsy - still being investigated but most things ruled out, slit lamp eye test scheduled for Nov
7. No genetic disorders found - Hep Dr mentioned possibility of autoimmune burnout at last appointment
8. Vaccinated for Hep A & Hep B and tested negative for Hep C
9. BP - 117/75

Thanks for the feedback and reassurance.

Apparently they found more copper than normal in my liver biopsy. However, I tested negative for Wilson's Disease. They ran some additional genetic tests that I believe make it difficult to process copper and I also tested negative for those. They send the biopsy sample to another lab (I believe it is the Mayo Clinic) because the only way to know for sure how much copper is in a biopsy is to weigh it. However, Mayo was not able to determine the weight/amount of the copper because the sample was too small. I'm not sure if I will need to get another biopsy to determine the copper amount. I am scheduled for a slit-lamp eye test in Nov to see if I have any copper deposits in my eyes. It could indicate if I have another disease or rule it out.

I got a call back yesterday about my candidacy for the phase 3 anti-fibrosis trial. I will need to get the results of the slit-eye test before a determination is made on my candidacy. I also need to "resolve" my platelet issue. They said I must have at least 100 platelets and right now I only have 44. The test coordinator is checking to see about the possibility of "resolving" the platelet issue with a transfusion.

I'm feeling pretty good today. My ribs have been a little sore on my right side but I don't know for sure that it is due to my liver enlarging or just normal aches and pains.

Thanks again for the help.

I've read about the gilead drug Simtuzumab. Clinical trials only enlist patients that are easy to treat.

I agree with your dr.. Stay on that diet, and lose the weight. It is your best option. As long as your enzymes, stay in the normal range, your numbers and liver condition should improve. Hopefully the platelets. My platelets went from 80 to 127, after getting my numbers normal.(hep c cure). Took a couple years..

I bought a book on liver disease, after my diagnoses in 1992. The more I read, the more I understood. I had to learn , to not self diagnose, over similar symptoms. But I learned to ask questions, and I was better able to understand what my doc was saying. Knowledge is power.

I used to get anxious about anything I read, that seemed similar to my symptoms. I drove my dr crazy.

You mentioned cryptogenic. So I assume there is something unknown.. has your dr mentioned the auto immune burnout?

Nine and a half weeks after diagnosis now. I started calming down a bit when I hit week eight. I'm still on track with my weight loss and my blood pressure is improving even more, now 101/67. We had a health screening at work and I found out some other results that I shared with my dietician. She said my numbers are really good: Glucose 83, LDL 17, HDL 50, Total Cholesteral 75, and Triglycerides 41.

I'm down to about 204# now so I lost another 10# in the last month. I slowed down my weight loss but I'm still losing weight too fast. So I'm going to add more olive oil, avocados, and nuts into my diet so I slow down my weight loss to about 2-3# per month. I think my problem is that I haven't been increasing my calories during high calorie burning days (like when I go to the beach). Also, my shoulders and legs look crazy skinny now so I've added weight lifting as well. I'm only doing 30 minutes 3 times a week and lifting just 15 to 20 pounds for now. I don't want to overdue it.

I never heard back from my Hep Dr last week on my questions about autoimmune burnout and also how I will know if I stop damaging my liver. I meet my new PCP tomorrow so maybe she can answer those questions or help me understand my Hep's perspective, especially on the low platelets.

I've begun to accept my disease but the anxiety does return sometimes and my thoughts start to spiral to the negative. I get so obsessed with death, who is dying, what they died of, how old they were...ugh...I'm a work in progress.

I keep telling myself to do my best to hold onto my liver for as long as I can, hopefully 10-20 years and then hopefully get a transplant after that. By that point my kids should be launched and I'll hopefully have something in place for my wife.

Cirrhosis_2017

Crap, having a hard time sleeping. I thought I was in the acceptance phase but am freaking out a bit again. My new PCP is nice, actually answered all my questions and stayed until 9:30pm doing so. She examined me and still found no issues physically. But she also said the low LDL and enzymes were nothing to celebrate because they likely mean my liver isn't working (i.e. Autoimune burnout flushing enzymes). And she said my Hep has likely not answered my questions about stopping liver damage because they probably still don't know (i.e. Cryogenic). She did say liver transplant may be good for me down the road because I don't have any other issues (i.e. Good heart and kidneys and no diabetes). But she said you need a very high MELD in the Philly area to get a transplant (people with 40 still don't get them) vs people in Alabama getting transplants with low MELDs (like 12). She said she mentioned that and said I should bring it up with my Hep because I do have an employer in all 50 states and may be able to move to an area with a better chance of getting a new liver. Although I did just move from San Diego to Philly so I'll probably have to give it a few years before my job will relocate me again and my teenage daughters may have something to say about a move to Alabama. She also said that live liver donations are extremely rare. She did say that I'm doing everything in my power though. And she went over a list of things to watch for to see if I need to get to an ER (mainly blood in mouth or butt). Anyway, I'm having a hard time sleeping again tonight...not good. I do accept this and I know worry is innefective at doing anything good for my liver...but...ugh, well...just can't sleep. I know there are many others out there with this same struggle.

Ok thanks. I'll do that.

Hopefully you get over it quick. If it continues you may want to call your dr.. because I can't think of any over the counter remedies. Ask your PA if you can take 750 mg x 4 for a couple days. Hang in there