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Posted By : Cirrhosis_2017 - 8/2/2017 5:43 AM
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.

Posted By : ppm guy - 8/2/2017 10:58 AM
helo cirrhosis 2017 and welcome,
Sorry to hear your situation. But Glad to hear you are making the changes, necessary to help combat Nash.
Sounds like your changes, are starting to pay dividends. Hopefully you can keep those enzymes in the normal range to help stop the progression. I would check with your dr., to start a exercise program.

Most important is your seeing a hepatologist. Your hep dr, gives you the best chance of stopping the inflammation that drives your liver disease. And your hep dr, is best at dealing with the complications that cirrhosis can cause. Such as your platelet count.

I have dealt with ciirhosis also. I had to make all the lifestyle changes, and have done well. Your diet sounds great. Very similar to the diet that I follow. I eat greek yogurt also, because of the protein. I use the brands that have the lowest carbs..I reduce my salt intake, and limit red meat. I started using light weight dumbells to gain a little muscle. Muscle eats calories, and give me a feeling of well being.

Come back often, and let me know how your progressing. Or with any questions I can help with.

Posted By : Cirrhosis_2017 - 8/2/2017 11:32 AM
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.

Posted By : Cirrhosis_2017 - 8/3/2017 7:26 PM
Today I got a call back from a PA about my questions and test results. She said that 44 platelets is not concerning, that they will bounce around, and they would only "maybe" do something if they hit 20. She also said the bilirubin at 1.2 isn't concerning and will bounce around and the INR at 11.3 isn't concerning either and will bounce around. I mentioned the 3 month trend since I started getting these tests and that the numbers are trending worse every month. Perhaps she is right and the numbers will bounce around but not drop drastically. However, when I was diagnosed with fatty liver 10 years ago the Dr. at that time just told me to stop eating fried food. He never scheduled a follow up and if he discuses the possibility of getting Cirrhosis it was lost on me because he said the likelihood was low. That's why I feel this way. I do trust my Drs but I also understand that they must spend more time treating the sickest patients instead of focusing on me daily to prevent things from getting worse.

We also talked about my liquid consumption and she said I was too high at 160oz. She wants me to be around 80oz. So I learned something there. Though it will be challenging to get that low as I'm used to staying well hydrated and staying hydrated keeps my headaches at bay. Dealing with neck pain, back pain, and headaches has been a struggle my whole life, but I cannot just pop 800mg of Motrin when I hurt anymore. So I'm trying to figure out healthy ways of keeping this pain at bay.

She told me to relax, that I am still young at 40 and should not be tracking every ounce of water and every mg of salt. I understand where she is coming from and I agree that I need to live my life. It's just that I want to do as much as I can to keep this disease under control for as long as possible and I'm still learning what that means and how to do it in a practical and sustainable way.

On a more positive note, I had an amazing time today kayaking and stand-up paddle boarding with my family. It was really great fun. I tried not to obsess over my food so much while still making healthy choices. For instance, I had a tuna salad sandwich today, first in a while. I think it was a pretty good choice. I'll have to discuss with my nutritionist at my next appointment.

I welcome any and all comments here. I'm still have so much to learn.

Posted By : ppm guy - 8/3/2017 8:46 PM
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

Posted By : Cirrhosis_2017 - 8/4/2017 10:28 AM
Shoot, INR is 1.3 not 11.3. That was a typo. Does that make things less puzzling?

Paddle boarding this morning I was in the middle of a dolphin migration, think I saw about 100 of them for 10 or 15 minutes. I was all alone with them, nobody else, no camera. It was so beautiful and peaceful, seeing them pop up and hearing them breathe.

I think I need to get some rest now, trying to get exercise daily but I don't want to overdue it.

I appreciate your messages so much. Thank you.

Posted By : ppm guy - 8/4/2017 11:03 AM
Yes, that is a big difference!!!

Posted By : MamaLama - 8/5/2017 8:25 AM
C 217

I am just reading through your posts.

I am glad to hear the INR number was a typo, as that stood out. With that high of an INR your MELD score would be much higher.

Though you are being monitored, what kind of doc is following you. With your diagnosis I would think you would want a board certified Heptologist and maybe even a Hematologist, not just a General Practitioner or GI doc. Liver and blood specialists see patients who are more ill.

My partner, Mike, had a TP in 2011 after a long illness. His diagnoses were different: Hep C, Liver Cancer, and Alcoholic Cirrhosis. He was being treated by a local GI doc. He was sent to a hematologist for another reason (His prostate was enlarged and his urologist was considering a surgical intervention...and Mike flunked his pre-op because of the newly found low platelets...he could bleed out with low clotting factor.) So that was never fixed...and it is a minor annoyance, his PSA scores are fine. AND the hematologist called U Miami TP center and got him into see a great doc who saved his life.

Another story: I teased his TP doc one day saying with the new meds for curing Hep C, they'd be out of business soon. He said, NO SO, unfortunately. With the American diet so high in fats and carbs, that liver disease was very serious and the next crisis was going to be NASH. So your change in lifestyle and diet is really important.

Mike has now early symptoms of fatty liver and has determined to refocus on his health, improving his exercise routine and losing weight. He was 240 before he got so sick with the cirrhosis, dropped to 150 around TP time and gained over the years to 220ish with a big belly. Still no booze...of course. He is now in the 170s, and is thinking just a few more pounds will be good. He is going by his belly size...he will level off if his size 34 shorts fit!

Best to you,

Mama Lama (who needs a lifestyle improvement also...not so easy when you get older...good you are taking steps now.)
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Posted By : Cirrhosis_2017 - 8/5/2017 11:05 AM
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)


Posted By : MamaLama - 8/7/2017 1:13 PM
The PSA number I referred to, that sent Mike exploring prostate procedures, is a standard test given to those men of a certain age (older) because men can be treated early for prostate cancer if identified. Mike's prostate has been enlarged, but with his other problems he has chosen NOT to get any procedure to decrease its size. He took some of the common meds, but they interacted poorly with other problems. They do his PSA test every year and if it creeps up, he will take action...meanwhile he tolerates "slow stream," a small issue when so much has been life threatening.

Mike's platelet level was too low for the procedure they wanted to do, which is known to cause some bleeding. I think they can shave it down to make the prostate smaller and stop obstructing the urethra. When platelets low, you can clot so well. The docs are often reluctant to use contrast with CT scans when your platelets are low. Sometimes he has gotten frozen platelets right before a procedure. AND he had his upper endoscopy regularly to check esophageal varices. When the liver is working poorly, there can be pressure building up in the liver that can cause the varicose veins in the esophagus....which can burst and then not clot well. The docs just band them during an upper endoscopy. It is a not big deal and can be done more than once. The docs at a major med center know how to keep their patients tuned up properly!

You are not drinking are you...or using tylenol..both can cause trouble. And Mike's docs told him to check ingredients...keep away from too much salt AND high fructose corn syrup (which they told him was the same breaking down in your body as BOOZE.)

Best,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Posted By : Cirrhosis_2017 - 8/7/2017 9:02 PM
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

Posted By : ppm guy - 8/8/2017 11:38 AM
Your diet sounds great. Your weight is coming down. BP perfect.

Hopefully as your numbers improve, your stress and anxiety will improve.

copper???

Posted By : Cirrhosis_2017 - 8/8/2017 12:03 PM
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.

Posted By : Cirrhosis_2017 - 8/9/2017 6:36 AM
Here is an update:
- I got a call back about the phase 3 drug trial. They said I do not qualify at this time. There are 2 different trials. In one I must have platelets over 100 and in the other I must have varicies. No worries. I am moving on.
- The Dr that called me mentioned the importance of my weight loss and how it will let me "influence" the trajectory of my disease. He mentioned that I now have established care for "when" I get sicker. At first his word choice of "when" bothered me. I like the word "if" I get sicker instead of "when" I get sicker. But then I realized this might be a form of denial. I need to accept that things will get worse at some point but that doesn't mean I am hopeless because I can do a lot to influence the trajectory and also have hope due to advances in medicine made all the time.
- Amazon delivered the book I ordered, "Cirrhosis: The First Year", by James L. Dickerson. I only read the Intro last night but it was really great. He has it set up to read a bit each day but you can also use it as a reference. It only cost me $10 and well worth it in my opinion. I started highlighting important items. Maybe I can start another posting on here for a review of the book and the main learnings.

Cir17

Posted By : ppm guy - 8/9/2017 6:51 PM
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.

Posted By : Cirrhosis_2017 - 8/11/2017 11:09 AM
I'm not sure what drug the phase 3 trial is for. I was really just asking my new hep about his views of anti-Cirrhosis drugs coming on line when he got sidetracked and started talking about me participating. I was only asking him because another hep I dealt with before I relocated told me that there is a lot of excitement in the hep community about something coming in the next several years.

Yes, I understand that it takes time. My plan is to get my weight down to 185 by the end of Dec, losing only 1 lb per week. Then I will keep it off and stabilize my weight for 18 to 24 months. I know I cannot control everything but that is my plan right now. As my anxiety decreases (which it is right now) I will need to keep myself motivated to stay strong with my new lifestyle. I cannot only let fear be my motivator.

I guess I am still waiting for a diagnosis since I still have the copper test. I'd like to know that I have stopped creating new damage on my liver. The liver enzymes seem to be the best gauge of that.

What do you mean by "not self diagnose"?

Thank you and I hope you are having a great Friday!

Posted By : ppm guy - 8/11/2017 6:22 PM
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?

Posted By : Cirrhosis_2017 - 8/12/2017 4:43 AM
Yes I can totally relate to the "self diagnosis" you mentioned. When I was told I had elevated enzymes 15 years ago I freaked out and could not figure out a healthy way of dealing with the problem so I just ignored it and the anxiety went away. I don't want that to happen this time. The only way I will be able to continue to learn about my condition and deal with it is to also control my anxiety. I think I have made significant progress over the last few weeks, but I'll have to keep working on it.

Yes, my hep mentioned auto immune burnout. I don't really know what that is yet.

Posted By : Cirrhosis_2017 - 8/20/2017 5:41 PM
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

Posted By : ppm guy - 8/21/2017 10:02 AM
hey c 2017,
You are, without a doubt, doing your part. your lifestyle changes and your follow thru, couldn't be better.
And your dr is investigating, your high copper levels.

Your questions for your new PCP seem perfect. You have worked through the gamut of emotions, to acceptance of your liver disease. Do ask questions, and ask your dr to clarify any answers, you don't understand.

Posted By : Cirrhosis_2017 - 8/22/2017 12:46 AM
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.

Posted By : ppm guy - 8/22/2017 11:09 AM
Sorry to hear that. I would schedule a appointment with your hepatologist. not his PA. Your PA is telling you not to worry, your numbers will bounce around. Your pcp is telling you A transplant is in your future. Ask your hep dr about checking your throat and stomach for possible threat of bleeding. That can be fixed.

Posted By : Cirrhosis_2017 - 8/22/2017 11:48 AM
Ok thanks. I'll do that.

Posted By : Cirrhosis_2017 - 8/23/2017 5:32 PM
Do you know of any good headache remedies? I'm not allowed Motrin anymore due to low platelets. I can have 500mg of Tylenol 4x per day. I'm on my 3rd dose of Tylenol for today and my head of a left temple is throbbing. I'm finally home from work so I'm going to lay down and rest. Just curious if you know of anything else I can do.

Posted By : ppm guy - 8/23/2017 9:21 PM
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

Posted By : Cirrhosis_2017 - 8/24/2017 4:18 AM
Thanks, I sent a note to my Dr too and I'll also ask about the 750mg. I'm feeling a lot better this morning, just minimal pressure above my left temple. I still have to go to work today but I'll try to take it as easy as possible so it doesn't come back.

Posted By : MamaLama - 8/25/2017 6:50 AM
C_2017

I am the caregiver, not the liver patient. I have different problems, have a different support group.

BUT, I get horrible maigraines.

The otc stuff like Migraine X has aspirin and tylenol and caffeine. I am not recommending that product, rather pointing out the ingredient caffeine. I have an RX called Butalbutol...it has tylenol, a barbituate, and CAFFEINE. When I was looking for a remedy before my doc prescribed the above, I used a caffeinated beverage, like coke aput ice on my neck. I still use the ice back on the back of my neck. My headache is always the same...it starts in the back of my head and zooms out my right eye. Horrible. Also have a sleep mask to cut out the light. I find a quite place to lie in the darkness for about an hour and I'm fine.

The trick is to find your triggers...the usual for me..chocolate, red wine, aged cheese and nuts. Oh and prednasone...every darn time.

Feel better soon.

Headaches you get over, liver disease, not so easily.

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Posted By : Cirrhosis_2017 - 8/25/2017 9:57 AM
Thanks MamaLama,
This is good info. I'll check on this with my Drs. My triggers seem to be too much sun, not enough sleep, not eating and drinking water. I've done a lot of work to reduce those triggers. I'm down to about one headache a month now. I know exactly how I got this last one. I met my new PCP Dr for a late appointment and she stayed late answering all my questions. I left her office at 9:30pm...way too late. I skipped my dinner and evening snack and had to eat quickly when I got home after 10pm. But the worst part was that I couldn't sleep at all that night due to the anxiety of the Dr appointment. I know this is a long battle and there will be good days and bad days, but I gotta learn how to control my anxiety better when I have these conversations with my Drs or my numbers get worse. I've also decided to not set up Dr appointments so late in the day and not check emails or lab tests later in the day. Hopefully doing this stuff earlier in the day will give me time to process it and be able to sleep better at night. My PCP said she could prescribe something for my anxiety but I'd prefer to not take medicine if I don't have to.

Thanks so much for the support on here.

Posted By : Cirrhosis_2017 - 8/29/2017 8:29 PM
Some updates:

1. Headaches - My PCP said it is ok to take 1,000mg of Tylenol 2x/day or 500mg 4x/day. She also had some other advice like using ice or even biofeeeze and eye masks too. And she said to take the Tylenol early on so the headache doesn't get worse. But I think I'm still gonna try to avoid taking it if I don't have to.

2. It seem like my Hep is waiting for more results to make a total diagnosis other than cryptogenic Cirrhosis, but I did get another perspective from another Dr. about the various feedback I've gotten from different Drs. He said they could both be right, that my liver enzymes may be decreasing because I lost weight and I'm eating better. Or else they could be decreasing because there are not enough healthy liver cells to be inflamed. But he added that in either case I am doing the right things - diet, exercise, no alcohol, dealing with anxiety, and am in the care of great Drs that will be able to help me if I happen to be in the second group. And if I'm in the first group then my disease may just stop right here. He also said I'm doing the right things to protect my other organs which will make a transplant better on me if I do get to that point. And he also said that making these healthy choices will also pay off 25-30 years down the road. That gave me a lot of hope. Most Drs, this one included, seem baffled that I have this diagnosis at just age 40, but it does give me hope that they are going to keep a close watch on me and will know what to do to keep me healthy and alive.

I still have the anxious thoughts enter into my head but I just tell myself that I'll deal with whatever comes if and when it comes instead of thinking about what may or may not happen to me. And I'm going to be thankful each day for what I do have, not for what I don't.

Thanks for the help!

Posted By : Cirrhosis_2017 - 8/29/2017 9:25 PM
Actually the way that Dr. put it was that I probably wouldn't be making these great healthy choices now if it wasn't for my cirrhosis and these choices will pay off 25-30 years down the road. I like that...gives me a ton of hope.

I read somewhere about a 17yr Cirrhosis survivor calling it his Cirrhosis angel because of all the healthy decisions it caused him to make, including healthy relationship choices as well. If you look at it that way...I am the lucky one.

Posted By : ppm guy - 8/31/2017 7:37 PM
sounds great!!!
We have another member with cryptogenic liver disease. Has had cirrhosis for many years, and was on the transplant list.. she was taken off the list recently ,because her meld has remained stable. Losing weight also contributed.

Glad to hear your positive remarks about your drs, and your positive attitude.
keep it up, and stay in touch

Posted By : Cirrhosis_2017 - 8/31/2017 8:13 PM
Thanks for the reply and it's great to hear about the cryptogenic person doing well. I'm going to stay focused on my healthy living. Eating healthy has become very normal for me and makes me feel great. I don't think I could even enjoy junk food at this point.

And I'm working daily (sometimes minute by minute) to keep my positive atttitude. Life is somewhat getting back to normal as we're getting the kids ready to head back to school. But I still need to work to stay positive. I remember someone told me once that human brains are so amazing that it will work hard to find an answer to any question we ask it. Therefore, we should focus on asking our brain positive questions each day, like what am I going to do nice for someone today, what will I be thankful for today, whose day will I brighten today. I'm working to focus my brain on answering these positive questions instead of the downward spiral of negativity. It's tough but I'm working on it.

Posted By : Cirrhosis_2017 - 9/8/2017 9:00 AM
Things have been going pretty well for me. I'm still working to control my anxiety, but no sleepless nights so that is huge progress and way better quality of life. My next Hep appointment is in Jan so I don't expect much or anything until then. My mind occasionally wanders to thoughts of how soon I will need a transplant and if a liver will be available at that time...I am still a work in progress and the positive stories on here are very helpful.

I do have sort of a practical question. Now that I am settling back into the routine of daily living, does anyone have advice on how to continue to eat healthy on business trips? I really want to keep eating right and I guess I can pack some foods, but I've found that 99% of restaurant food is unhealthy from a sodium and processing standpoint. Plus, how do I order healthy food at a steak restauaunt when I am dining with customers or suppliers or bankers? Do I ask for chicken without any seasoning and salad without cheese, croutons, or dressing? I know it's an odd question, but maybe someone has advice on how they make it work.

Thanks! I hope everyone is having a great Friday and getting ready for the weekend! My parents are coming down for the weekend and we are going to a mushroom festival!

Posted By : MamaLama - 9/8/2017 10:32 AM
Yup

They will prep if you ask.

However you want.

Salad asnd protien is how we do dinners.

And only fizzyvwater with fruit...in a wibe glass of course, less obvious you are not sharing in adult beverages.
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Posted By : MamaLama - 9/8/2017 10:33 AM
Yup

They will prep if you ask.

However you want.

Salad asnd protien is how we do dinners.

And only fizzyvwater with fruit...in a wibe glass of course, less obvious you are not sharing in adult beverages.
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Posted By : Cirrhosis_2017 - 9/8/2017 10:50 AM
Thanks! Great advice...I was actually wondering what to do with all our wine glasses...LOL...not that we really used them much before anyway. Now they will be for water and fruit. We'll probably use them much more now and the kids can use them too...LOL.

Posted By : Cirrhosis_2017 - 9/14/2017 12:45 PM
I was asking my Hep Dr about the follow on the elevated copper found in my biopsy and a PA sent the biopsy report or at least a part of it. This one phrase stuck out to me.

mild macrovesicular steatosis (5%) without hepatocellular ballooning or prominent lobular inflammation

Is 5% good? I'm not sure exactly what this is saying but it looks like this means lower inflammation which is good. But not sure if it means 95% of my liver is good or not. Maybe it's 5% of the healthy cells or 5% of the total cells.

Any thoughts?

Thanks!

Posted By : ppm guy - 9/15/2017 6:20 PM
It's language from a liver biopsy. It means you have grade 1 inflammation. Which is mild inflamation. That is good!!!!
Did the PA respond about the copper?

Posted By : Cirrhosis_2017 - 9/18/2017 1:13 PM
Thanks for the reply...and nice to hear good news about the low inflammation. I asked my Hep the same question and he has yet to respond.

Here is what one of his PAs wrote to me about the copper in my biopsy:

In regards to the copper in your biopsy, our pathologist here felt this was a "non-specific" finding, you can see their comment regarding this issue below:

"Rhodanine stain for copper shows rare periportal hepatocytes with positive
intracytoplasmic granules, which is likely a non-specific finding
especially in the setting of cirrhosis."

My anxiety has been a bit high lately.

I guess it's just hard for me to trust the Drs because of all the bad info I received in the past about my fatty liver not being a big deal and not even doing a biopsy on me 4 years ago when my enzymes were high and my platelets were low but my ultrasound only showed fatty liver. Now they tell me that you cannot always see Cirrhosis on an ultrasound.

I've gotten emails from PAs but nothing from my Hep. I doubt I will hear from him until my next appointment in January.

I'm still confused over how bad I am. MELD 10 seems pretty good I think. Also class A is good. Plus no ascites or varicies and a fibroscan of 14 (I think). However, platelets of 44 seem crazy low and not sure if low enzymes are good or bad.

Plus I'm hearing that liver transplants are really hard to get and that the people that get them are basically in hospice on their final days. Is this true? Is it that hard to get a transplant?

Plus I'm not sure how to prepare my family for this. I don't know anything about how much my care is going to cost or how or when to file for disability. Is there someone hat can help with that stuff?

On the good side, I'm still eating very well. I'm down to 198 pounds and size 34 pants now. My arms and legs look so thin. I guess I had fat there too making them look bigger. They look so thin that my wife thinks I look unhealthy. But I'm still technically overweight at 198 pounds so I still need to lose some weight.

Posted By : ppm guy - 9/18/2017 5:36 PM
Hep c takes the most transplants today. Hep c is now curable. within a few years, hopefully livers will be available at lower melds. Which will improve the outcome of transplants overall. Still, your location also effects what meld your transplanted at.

If I was in your position, and I have been, with myself and my brother. I would ask my dr to take the time to help me understand, what is wrong with me. Tell your dr that his PAs give you info that you don't understand.
That youre left with anxiety from vague answers, and language from biopsies that only a hepatologist can decipher. I would ask for detailed answers on how crptogenic liver disease, copper,and how very low platelets
will effect you going forward.

Have you asked what the plan for you is?

biopsies and fibroscan are used to confirm cirrhosis, not ultrasounds. your fibroscan of 14 is early cirrhosis. cirrhosis starts at 12.5. You will learn a lot, in the next year

Posted By : Cirrhosis_2017 - 9/22/2017 10:47 AM
That's good info and advice. Thank you. I have an annual physical with PCP on Oct 9, MRI on Nov 3, and next Hep appointment on Jan 29. I guess I have 4 months until I can ask my Hep those questions but I will certainly ask him at that time. I've asked those questions over email but never got a response. I only get responses to questions I have asked about what foods I can and cannot eat.

Posted By : Cirrhosis_2017 - 10/9/2017 11:12 AM
I met with my PCP today for an annual physical. It was a good discussion of what I already learned about platelets, liver enzymes, and my diet. I’m fairly on track. Though he did recommend I reduce protein intake to 100g. I’m around 130g now. He also told me to stay plant based and also to cut out dairy as it causes inflammation. He also felt that my spleen is enlarged. This is new and prior Drs and ultrasounds did not show I have an enlarged spleen. Since it was at the end of the appointment we didn’t have much time to discuss what it meant for my prognosis and treatment plan. I have an ultrasound Wednesday. I’m trying not to freak out too much about this, but it is scary. It seems like I get bad news every time I go to see a Dr.

Posted By : ppm guy - 10/9/2017 6:22 PM
Good advice!!! Limiting meat will lower your protein and help food digestion. Have they discussed salt restriction?

The spleen is usually enlarged when platelets are low.. my hep dr. Used to say, the spleen eats platelets. Try googling spleen and low platelets.
You have a ultrasound coming up...How often they check your platalets?
Well let us know

Posted By : Cirrhosis_2017 - 10/10/2017 12:03 PM
Can you clarify on protein. I thought I needed protein because my liver does not do a good job on making protein which will lead to protein-wasting. But it also sounds like I shouldn’t have too much protein. Why is this? How much do you recommend?

I don’t know how often they will check my platelets. I’ll email my Hep and ask.

What do you mean by the spleen eating platlettes?

Thanks so much.

Posted By : MamaLama - 10/10/2017 12:30 PM
Most with liver disease have enlarged speen and low platelets...it is part of the disease.

One Google search explained it this way:

Splenomegaly. Portal hypertension may cause the spleen to enlarge and retain white blood cells and platelets, reducing the numbers of these cells and platelets in the blood. A low platelet count may be the first evidence that a person has developed cirrhosis.

My experience with protein and liver disease
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Posted By : Cirrhosis_2017 - 10/10/2017 12:33 PM
Oh ok, so this sounds common for us with Cirrhosis. I heard someone say that they do take the spleen out of it gets too big. Apparently it’s not a vital organ.

Posted By : Cirrhosis_2017 - 10/10/2017 2:59 PM
A PA from my Heps office emailed me that my platelettes and MELD will be checked every 6 months.

Posted By : ppm guy - 10/10/2017 5:14 PM
about protein; I was responding to your drs recommendation to reduce protein from 130g to 100g. Meat is our major source of protein. So cutting some red meat from your diet would help you get to your goal.

"Eating platelets", was a poor choice of words. I do know this is a tough time for you. It was humor at the wrong time.

Posted By : Cirrhosis_2017 - 10/10/2017 7:19 PM
No worries. Humor is good. My emotions are pretty much 2 steps forward and 1 step back right now. I get to a good place emotionally but then any negative info has me spiraling to the worst thing that could possibly happen to me. I know this is going to take time to get used to. And I also understand that I likely have a decent amount of time left too. I just need to keep reminding myself.

Posted By : Cirrhosis_2017 - 10/11/2017 8:17 AM
I just finished my ultrasound. The tech said I definitely have an enlarged spleen that is prominent and overtaking the area. This is new as my ultrasound in May didn’t show this and my Hep didn’t feel it in July. It’s just tough because every time I go to the Dr I get more bad news. I’m working so hard on my diet and it would be nice to get some wins as far as slowing the progression of this killer. Very scared...still...ugh.

Posted By : Cirrhosis_2017 - 10/11/2017 4:04 PM
My PCP just called and gave me my ultrasound results. He said that he is sending the results to my Hep Dr and will be in touch if my treatment plan changes. He said it might not change anything but that he is not a Hep Dr so we should wait to hear back from the Hep Dr. He said my spleen might have been enlarged before but other Drs. just missed it. I copied the complete report below in case anything sticks out to you. I guess my biggest worry is that things are progressively getting worse quickly. My hope has been that this disease progresses slowly and I'm trying to do everything I can to slow it down as much as possible...to steal back as much time as I can.

STUDY: COMPLETE ULTRASOUND OF THE ABDOMEN
CLINICAL INFORMATION: Splenomegaly, cirrhosis
PROCEDURE: Complete ultrasound examination of the abdomen was performed.
COMPARISON: None
FINDINGS:

LIVER: Normal in size and measures 14.8 cm in length along the mid clavicular line. There is mild diffuse coarsening of the hepatic echotexture with mildly heterogeneous echogenicity in a somewhat nodular hepatic contour likely related to cirrhosis. No focal mass. The main portal vein is patent with appropriate direction of flow on color Doppler.

GALLBLADDER: Normal. No gallstones, sludge, or pericholecystic fluid. No wall thickening. No sonographic Murphy sign.

BILE DUCTS: No intrahepatic or extrahepatic bile duct dilation.
Extrahepatic bile duct diameter where visualized: 3 mm

PANCREAS: Visualized portions are unremarkable. Portions of the head and tail are obscured by bowel gas.

KIDNEYS: Normal echogenicity. No hydronephrosis.
Right kidney length: 11.8 cm
Left kidney length: 13.4 cm

SPLEEN: Enlarged.
Length: 19.4 cm

AORTA: Visualized portions are normal in caliber.

INFERIOR VENA CAVA: Visualized portions are normal in caliber.

ASCITES: No upper abdominal ascites.

IMPRESSION:
1. Findings likely related to cirrhosis. No focal hepatic lesions identified at this time.
2. Splenomegaly.
3. No significant ascites.

Posted By : ppm guy - 10/13/2017 8:04 PM
Your ultrasound looks good as can be expected, in my opinion. Normal size of a spleen is 10-12 cm, and yours is 19.4. your liver surface shows likely cirrhosis. But no signs of cancer.. everything else looks good. YAY!!!

Posted By : Cirrhosis_2017 - 10/13/2017 9:45 PM
Thanks, this put me through the ringer emotionally this week. I didn’t hear anything back from Hep Dr though and it seems like no news means good news. It was the same thing when I learned my platelettes were so low. It scared me a lot but my Drs seemed to think it was “normal” for me. Having a spleen twice as large as normal freaks me out a bit but I guess this is also part of my “new normal”.

I’m still class a. I’m still eating healthy. I’m now 175 days without alcohol. I’m now down to 194#. And I feel better than I have felt in years. I’m looking forward to enjoying the weekend with my kids due to the new perspective I have on life.

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