New to ESLD and scared

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.

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.

Yeah, you will go into a long tube. It’s noisy more than anything else. I was a little nervous the first time..the technician will be in voice contact with you the whole time.

Mri’s With contrast is the best tool to find masses in your liver. Every 6 months is protocol for those with cirrhosis. If a undefined mass shows up. Your dr will go to a more aggressive search. This is a good way to catch cancer early.

Try to calm your anxiety. Tell yourself, this is just a test to keep you safe.

Thanks so much! This is really helping me to calm down.

I appreciate you both so much. You are making a huge difference in my life and I don’t know what I would do without you.

I started freaking out about the possibility of them not being able to find cancer if it is there. I’m sure that happens sometimes but I’m starting to identify just how absurd it is for me to freak out about something like that...one day at a time, cross each bridge if and when I get to it.

Here is a funny positive story...and I apologize up front for over sharing. Believe it or not, with all this fiber I have been eating the last 6 months, my hemorrhoids feel like they are actually completely healed right now. They were crazy bleeding for the past 20 years since high school and now they are healed. I just gotta believe the healthy eating is healing things elsewhere in my body as well.

Yes, that is worth celebrating! 6 months without alcohol. I’m working to do a better job taking stock of the positive in my life. Thanks for pointing hat out to me and the congratulations feel great.

No cancer, excellent!!!

Usually the radiologist makes comments on any abnormalities.
Nice to see your dr is asking for explanation. Let me know what the answer is.

I just posted my full MRI results. I haven’t yet gotten a call back about the blood vessel outpouching. I did send another email asking for another call to review the results in detail to see if there is a change in my prognosis or treatment plan. I have to admit these test results always freak me out. My wife (who is awesome by the way) is getting a little tired of my emotions. Anyway, I didn’t think I had portal hypertension but now it looks like I do. Maybe I just misunderstood in the past or maybe the ultrasound wasn’t a good enough test to detect it. I also believe I read somewhere that a nodular liver is a sign of pretty advanced Cirrhosis and it looks like I have that. I was under the impression that I was pretty early on with a fibroscan of 15.1 and being class A. Ugh, this is such an emotional rollercoaster, with more downs than ups right now.

I turned 41 yesterday and I feel great. I’m down to 190#, losing about 3# per month. I think I’m pretty close to my target weight, maybe another 5 pounds or so. Hep Dr called me a few weeks ago due to my multiple emails. He told me the MRI didn’t tell him anything new really, that my condition remains the same. He said he’s been working with another younger guy like me for 10 years now and he’s gotten married and had kids since his diagnosis. He said I’m as likely to go into liver failure tomorrow as he is to get hit by a bus. He doesn’t think I will bleed out. He said I’ll probably be fine next year or even after 2 or even 3 years. I told him it is all so overwhelming and he agreed saying he would only be concerned if I wasn’t overwhelmed right now. He said that will help me stay vigilant which I absolutely need to do. He told me to make sure I bring my wife to my 6 month check up on Dec 20th.

I also started networking with another military guy who was diagnosed with some sort of cancer back in 2010 and only given a 15% chance of being alive in 5 years. Now 7 years later he is cancer-free. He said not to even think about the percentages. He said it will take more than a year for this initial shock to wear off but the reward is a newfound resolve to become the absolute best version of myself.

I also signed up for a mindfulness class in the spring.

I want to thank those that have helped me here and also tell others to keep their hopes up. I have found hope, finally, and while I know I will have tough days ahead, I also know that I have more enjoyment and happiness as well.

Thanks so much. You have been so helpful. I’ll let you know how my Dr appointment goes next week.

I had my Dr visits on Wednesday. Spent over an hr with Hep Dr and his statement was that "there is no good reason for me to have liver disease." It isn't alcohol, hepatitis, autoimmune, obesity, no family history, etc. He said he would like to investigate the copper as there is still a chance I have Wilson's and it's important because Wilson's can be treated. I have to provide a 24 hr urine sample. He's also going to try to get the biopsy block from San Diego as I guess they just sent him the slides. He said that maybe they can scoop out more of the biopsy material so they can get a weight of the copper. He said it is possible to test negative for Wilson's and still have it. I think he has 2 patients like that. He said there is a Wilson's expert in Australia that he is going to check with as well. The PA said that my MRI looks more like a liver damaged by Wilson's than anything else. If Wilson's is not the answer then he said I would have something called lean NASH. They also want to do another MRI in 6 months so they can keep an eye on this aneurism in my liver as well. They doesn't think it is a big deal but do want to watch it.

I also had a biopsy in Atlanta 10 or 11 years ago that showed fatty liver. I have not been able to get them to send me any records and maybe they don't have anything. But a friend of mine told me I should go down there in person and set up an appointment with the Dr that did the biopsy. Perhaps he has some notes somewhere that would be helpful. So we are thinking of taking a trip south over Spring Break to visit friends and see this Dr.

I'm actually feeling pretty good despite the fact that we don't yet know how to stop the damage. I guess I feel reassured that we are working on it and I'm understanding this is a process and I guess I am also very thankful that these really really smart people are dedicating so much time to helping me. The PA reminded me that cirrhosis doesn't mean liver failure. So I feel great today and I'm doing everything I can to reduce stress on my liver and enjoy every day that I have. If things get worse down the road then I'll figure it out and I have hope because I keep hearing how great liver transplants are and there are new medical breakthroughs all the time.

I'm looking forward to taking 10 days off for the holidays, thankful that I work for a company that provides me with this vacation.

Please let me know if you have any other suggestions or know of how others are faring with cryptogenic cirrhosis, lean NASH, liver aneurisms, or Wilson's despite testing negative.

Happy Holidays!

Thanks ppm guy

My labs came in, pretty consistent with the labs they took in July, hey 6 more months and i'm still chugging along.

bilirubin - 1.2 in July and 1.1 in Dec
serum sodium - 142 in July and 140 in Dec
INR - 1.3 in July and 1.3 in Dec
serum creatinine - 0.94 in July and 0.95 in Dec
plateletes - 44 in July and 47 in Dec
ALT - 47 in July and 45 in Dec
AST - 27 in July and 29 in Dec
PT - 16 in July and 13.4 in Dec

There were some other items that were outside the normal range like white blood cells (low at 3.1), hemoglobin (high at 17.5), hematocrit (high at 50.5), MPV (high at 14.8), lymphocytes (low at 769). These were only just outside the norm ranges and I sent a note to my Hep Dr to find out what these mean.

All in all, I am doing well, didn't eat any junk food at all over the holidays. My wife is very surprised and impressed as I've always loved cakes and sweets. None for me. And eating so well really makes me feel great, no sugar high and low easy digestion, easy to sleep. I'll work on getting something back from Atlanta and I'll stay the course on investigating the copper and I'll get these last 10 pounds off. It looks like I'm still a MELD 10 so I'll hold for now and then deal with the transplant issue if and when I get there.

Merry Christmas! Happy New Year! Best wishes for 2018!

Hey there, I’ve been feeling pretty good this new year. I’ve been taking the mindfulness based stress reduction class and it is really helping. But I ran into another thing that I have been dealing with. I guess it’s really minor (and embarrassing) but I’m kind of at wits end. I was eating very healthy since last July - low fat, sugar, and sodium, lots of veggies and whole grains, between 100gm and 140gm of lean protein. Eating this way cleared up my hemmheroid issue that I was dealing with for over a decade. But now my stools are too loose, almost diarrhea with food particles in them. I emailed my Hep Dr and the PA emailed back that I should cut back on veggies and whole grains for a couple days and then things should go back to normal. But that was a week and a half ago and my stools are still very loose. And I really do not like eating so few veggies. Actually I’m having a hard time finding healthy foods that are low fiber. I’ve never really had any issues like this in my life. Maybe this is just one of the things that I need to accept with this disease.

Any thoughts?

Thanks!

Thanks, I appreciate the feedback. Seems to be getting a little better today.

I do have a point of clarification though. And maybe I’m just splitting hairs here. You mentioned that liver patents follow a healthy diet that includes high fiber and low carbs. Actually I eat a decent amount of carbs. This is because I want to keep my protein and fat levels to the appropriate levels and so carbs fill in any gaps. My body seems to need 2,400 to 3,000 calories per day so I do tend to eat a decent amount of carbs while still staying the same weight. Is this consistent with your statement? Sorry if I’m splitting hairs here. I’m the kind of person that tends to take things too literally sometimes.

Thanks!