Liver Biopsy Results

[mckansas]

OK, here it is and I'm pretty devastated.

Liver parenchyma showing changes consistent with chronic hepatitis C. Grade 4 (sever activity with marked portal inflammation with piecemeal necrosis, lobular spotting necrosis, and area of confluent necrosis resulting in bridging). Stage 4 (showing bridging fibrosis and nodular regeneration, with liver cirrhosis). Histological grading of iron store is normal (score 0/4+).

No wonder he is making me an appointment with the transplant center.

[BoceprevirGal]

   You must be feeling very stunned, and a bit in shock, I imagine. I am so sorry that you had to recieve this bad news.
   We have Hector on here, who can guide you thru the process, and many other wonderful members on here, that have been thru what you are about to embark on, in terms of Treating your liver disease.
     Either before or after a Liver Transplant,  a person generally has to also Treat their Hep C, as it comes back, after a transplant, as well.
   it is a good thing your Doctor is making you an appt with The Transplant Center. There will be Hepatologist there, who can guide you thru this most
difficult process. Remember, there is hope, and to remain strong.
    This does explain why you have been having immune problems within
the last 5 yrs. It sounds like you are in good hands, and have  your ducks lined up.   You'll be in my prayers~  Katy

[can-do-man]

Of course your scared but take a deep breath and relax, first your doctor is doing the right thing by sending you there. I was DX this way back in early 2005 and yes it scared the crap out of me. People can live along time being cirrhotic. After going thru all the test by Hepa decided to start me on tx but at that time success rates for people with cirrhosis and geno 1's were very low. I treated for 86 weeks and then relapsed, thanks to the new PI's we now have a much better odds. I treated with VIC and now I'm cured though still cirrhotic and plan on being around along time now with out having a TP.

Souds like your in good hands now, things will work out. Wishing you the best.

[Advocate1955]

Hi mckansas,
I know this is scary, but look how much you've done to advocate for yourself and your health in the past few weeks.  You have found out more about your Hep C and most importantly you now know the exact stage of your liver disease.  Additionally you have the appt set up and the referral set up for the transplant center and a good hepatologist who will be able to assess your portal hypertension as well as look for other possible complications of your liver disease.  You have done so much in just a few weeks!  Many people have stage 4-Cirrhosis, so you are not alone.  My husband has stage 4-Cirrhosis, he has tried and failed all available treatments for his Hep C, so we are in a watchful waiting stage, watching to catch any complications early and treat them, and waiting for another Hep C treatment to become available to him.  My husband's Cirrhosis is less advanced than yours, and he is a little older than you are.  As Hector told you in your first thread, the condition of your liver is serious and needs the care of a hepatologist in a transplant center as he/she is the best equipped to evaluate your situation and provide the best medical care.  That doesn't mean that your liver is going to fail tomorrow or that you're going to need a transplant tomorrow, it means that you need a hepatologist in a transplant center to evaluate you and prescribe the proper medications and treatments for your particular situation right now and monitor you for possible other complications so that he/she can prevent them and treat them if they occur.  These possible complications can be life threatening, so that's why you need this type of specialist to care for you now.  So, hang in there, you're doing a great job.  As I mentioned in your first thread, it might be helpful to contact either Hector or Orphaned Hawk to ask them to help you develop a list of questions to ask your new hepatologist.  It may also be helpful to take a trusted friend or family member to your appointment so that he/she can take notes and help you remember.  Your hepatologist may prescribe some new medications to treat your particular symptoms, he/she may also order some additional tests, and he/she may have some special directions about diet to help prevent ascites and other complications.  Your hepatologist may also evaluate your case and give you a MELD score, basically a score stating how your liver is functioning.  The lower the score, the better your liver is functioning, and the higher the score means your liver is functioning poorly.  I will wait for someone with more experience to chime in here, but based on your complications, I believe that your liver is decompensated, which means your liver is not functioning well.  This is due to the degree of scarring on your liver and the resulting changes in the structure of your liver.  When is your appointment with the hepatologist at the transplant center?
Advocate1955

[HectorSF]

and nodular regeneration, with liver cirrhosis). Histological grading of iron store is normal (score 0/4+).
"No wonder he is making me an appointment with the transplant center."

I am sorry to hear you received a diagnosis of cirrhosis. It is pretty shocking to hear this news so realize this is a phase you must go through and deal with as best as you can. It can be very scary and overwhelming as it is not something any of ever think will happen to them.

Your doctor is doing the right thing for you. A liver transplant center has hepatologists that work on a daily basis with folks like us with cirrhosis. They have the resources to evaluate the current state of your health and provide all of the monitoring and treatment you will need. As can-do said, you can have compensated cirrhosis for many years without the symptoms and complications of decompensated cirrhosis. Ascites, hepatitc encephalopathy, bleeding varices etc, The transplant center will help you to stay as healthy as possible for as long as possible. Meanwhile they will provide you with the best treatment options that are available to someone with the amount of liver disease.

Cirrhosis covers a huge range of illness from those who feel totally healthy and have no portal hypertension (no enlarged liver, regenerative nodules in liver, no varices) to those who's liver is failing and are close to death and need a transplant soon. You are nearer to the early stage stage of cirrhosis. Your liver is still able to perform all of its functions but you have bridging fibrosis and nodular regeneration which is classic compensated cirrhosis.

Picture a hexagon shaped lobule. Fibrosis beginning at each corner of the hexagon....
Later, if the fibrosis also forms between those corners -- (like connect the dots) -- that's "bridging fibrosis".
As more time goes by... (if the inflammation continues).... more and more bridging fibrosis forms. (Fibrosis around the portal tracts, fibrosis bridging across the liver lobule, fibrosis more or less "encircling" the lobule...)
As more time goes by--- Liver cells may begin to die ("necrosis")...
Scar tissue begins to form ("cirrhosis").

Do you have any blood results of platelet count, bilirubin, PT/INR and creatinine?

Remember you still may have time to treat your hepatitis C which is the cause of your cirrhosis. As long as you are still compensated you can try treatment. Remember you probably have a long way to go before ever needing a liver transplant. Probably many years. Depending on the results of an upcoming trial on patients with cirrhosis there may be a new interferon-free treatment for those with cirrhosis of the liver. So there is more hope than ever for cirrhotics. I have had cirrhosis since at least 2007 and was a previous null-responder to interferon based treatment. I am now in a trial with GS-7977 + ribavirin and become undetectable within two weeks and so far, week 6 have had no side-effects, no low platelet count (the treatment has no impact on platelet count) and no anemia. There will be a phase II 40 person trial for cirrhotics coming up soon and if that is successful a phase III trial with many more patients.

"GS-7977 and Ribavirin in Patients With Chronic HCV With Cirrhosis and Portal Hypertension With or Without Liver Decompensation"
ClinicalTrials.gov Identifier: NCT01687257

Purpose:
This is a multicenter, Open-Label, Randomized Study to Investigate the Safety and Efficacy of GS-7977 and Ribavirin Administered for 24 weeks in Patients Infected with Chronic HCV with Cirrhosis and Portal Hypertension with or without Liver Decompensation. Approximately 50 subjects (25 per group) will be randomized (1:1) to either receive study drug for 24 weeks or take part in an untreated observational arm for the first 24 weeks followed by study drug for another 24 weeks.

Locations
Aurora, Colorado, United States
Boston, Massachusetts, United States
Rochester, Minnesota, United States
Philadelphia, Pennsylvania, United States

Hang in there. As you learn more about cirrhosis you will see it not the end. There are many things you can do to maximize your health before ever needing a transplant.

Hector

[mckansas]

Thank you for the explanations, I am angry with my GP at this stage as I had been complaining of symptoms for two years and he never followed up. BUT, that is neither here nor there at this point, I have to deal with what I know. I do have more results from blood tests, just haven't posted. I should hear from transplant center this week or next as to when I will go for evaluation. So, when the doctor said it was OK to wait until January to start treatment as liver disease is slow moving was a correct statement? As many infections as I've had (IV Vancomycin 3X in the last year) I have it in my head I will probably be dead from an infection within a year, low platelets, low WBC, etc., but maybe I'm feeling sorry for myself. Anyway, onward and upward to a new torturous path of evaluation and treatment.

[mckansas]

Thank you for your words, transplant center sometime this month, haven't received the appointment time yet. Strange the doctor didn't give me these results in his office, just that I was very fibrotic and it would be best to go to the transplant center and get to know them. Just a strange, non-pushy way to present to me without alarming me I guess. It took three phone calls to get this report. He kept sending me endoscopy, colonoscopy and CBC results.....

[frijole]

I  am so sorry to hear that you have cirrhosis.  I too have cirrhosis, although it is not as advanced as yours.  I was just diagnosed last year and could not believe it since I had a biopsy 3 years earlier that was much much better.  But, it is what it is.  Welcome to this forum -- there are some people who can give excellent advice here and ther are plenty of shoulders to lean on.

I have most recently read a book I recommend -- "The First Year: Cirrhosis: An Essential Guide for the Newly Diagnosed" by James Dickerson.  I got it from my public library, but am planning to buy one on line to refer to.    It is written by a man with cirrhosis from autoimmune hepaittis but most of the book applies to anyone with cirrhosis.  As Can-do and others have said, we can live many years with cirrhosis.  We just need to learn to manage.  The book is very helpful in explaining the stages and what to look for.  (Little things, like don't let yourself get constipated as the longer your bowls are in your system, toxins can leak into the body.)  

Treating your hep C now which is what Hector is doing, in anticipation of his transplant, is one option.  Another, after your TP evaluation is done, is treating post TP.   I just finished treating for my hep C.

Have you had any outward signs?

[mckansas]

By outward signs I am not sure what you mean, but I am losing weight ~ 5lbs/week - which is good, you can never be too thin or too rich they say:) as I can't eat anything after being up for a couple of hours--my abdomen becomes too swollen and painful. Also, have accompanying musclo-skeletal issues that are causing a lot of pain as the day goes forward and the swelling of the spleen/veins starts pressing on a nerve. I am spotted with the results of the Thrombocytopenia on my legs, stomach, arms, hands..... More disturbingly I am a process engineer and lately I can hardly figure out easy stuff I used to do with no problem, look up parts, analyze data, evaluate production data, etc....My co-worker is covering for me right now, I feel really stupid at times and CRS (can't remember ****) seconds after being told--I feel like Charley in Flowers for Algernon.

[BoceprevirGal]

  A liver that is working poorly may not be able to get rid of toxic substances like ammonia (which comes from the intestines), and it may allow these substances to go into the brain and cause confusion.
Besides confusion, toxins in the brain cause changes in your sleep, your mood, your concentration, and your memory. If it gets really bad, it can even cause a coma.
      The name for the mental confusion is Encephalopathy. It can be treatedwith a medicine called Lactulose. If I were you, I would mention your mental confusion to your Docotr, and ask him if you need to start taking Lactulose.  
    I am also still angry at my GP, for not paying attention to my complaints, over the last 2 years. Apparently, many GP's dont seem to know too much about Hep C, I know mine dont.
    Losing too much weight is never good, I imagine there is a specific diet for cirrhotics, that can be followed. As I remember, animal protein isn't well tolerated, but you can find healthy protein and vitamins in plants and grains. A Macrobiotic type of diet should be easier for you to digest.
  
    

[orphanedhawk]

Bo is right about encephalopathy which can be serious. Have your doctor check your ammonia levels.
In the mean time, do not eat any red meat, it can increase ammonia levels.
Also, limit your salt content.
If you are prescribed lactulose, you want to take enough to have 3 soft stools daily. Too much will give you the runs.

However, you do need protein, especially with cirrhosis. Stick with fish, chicken, tofu beans and eggs, to get enough protein.
Also be sure your taking a good essential vitamin without iron.
I'm not sure I'd recommend a strict macrobiotic diet as you do need protein and calcium.

[coeric]

hi, my biopsy report was very similar to yours.  i competed 48 weeks of triple therapy in august.  i treated at the University of Colorado, in Aurora Colorado. it is one of the clinics that is undertaking the study cited by Hector "GS-7977 and Ribavirin in Patients With Chronic HCV With Cirrhosis and Portal Hypertension With or Without Liver Decompensation.
eric

[coeric]

here is the link for the trial cited by Hector.

http://clinicaltrials.gov/ct2/show/NCT01687257?term=hepatitis+c+colorado&recr=Open&rank=29

[HectorSF]

"when the doctor said it was OK to wait until January to start treatment as liver disease is slow moving was a correct statement?"
Yes. You need a full and proper assessment of the degree of your cirrhosis. What treatment options will be available to you is based on the evaluation assessment and diagnosis. Each step is important to do. You need treatment for your complication of cirrhosis to make then manageable first. Take it one step at a time.

"As many infections as I've had (IV Vancomycin 3X in the last year)"
Vancomycin is used to treat colitis (inflammation of the intestine caused by certain bacteria) that may occur after antibiotic treatment. Vancomycin is in a class of medications called glycopeptide antibiotics. It works by killing bacteria in the intestines. Vancomycin will not kill bacteria or treat infections in any other part of the body when taken by mouth.

"I have it in my head I will probably be dead from an infection within a year, low platelets, low WBC, etc., but maybe I'm feeling sorry for myself. Anyway, onward and upward to a new torturous path of evaluation and treatment."

Infection is common in persons with cirrhosis. Either viral, bacterial or fungal. With proper treatment which you are finally getting your infections should be manageable. One thing I would highly recommend is joining a liver transplant support group of there is one in your area. I am sure the transplant center probably has one. Just talk to others with cirrhosis and you will see we have all been through the same stuff and many are way worse off than we are.

Please realize that it is because this is new to you the you fear the worse. Us folks with cirrhosis have lived for many years with low platelet counts, low WBC, weight lose from ascites, having signs of thrombocytopenia. Bruising, red dots, spider veins etc. etc. These things will not kill you. They may not be pleasant but they are manageable. When you get seen at the transplant center they will tell you how to treat and manage these issues. It is the life-threaten complications of cirrhosis like vomiting blood, infected ascites, going into a hepatic encephalopathy coma that are the real concerns of having cirrhosis. Because each time you have one of these complications it can be fatal if you are not prepared for what to do and treated in time. It takes time to adjust to this new reality. Each of us suffers in our own way. I am just saying that you can find ways to deal with it. You are getting connected to a transplant center so you will have the option of transplant should you need it so there is no reason you should ever die from this. There are many worse diseases that have no cure. We have the option of transplant. That is a good thing in my book.

What is your platelet count?
Are you aware that ascites and hepatic encephalopathy are signs of decompensated cirrhosis?
Do you understand how this could affect your future options?

For your Ascites:
You should be eating less than 2,000 mg of sodium per day. No processed foods or restaurants food. They will also put you on diuretics. Initial conventional oral diuretic therapy consists of spironolactone 100 mg + furosemide 40 mg.

"More disturbingly I am a process engineer and lately I can hardly figure out easy stuff I used to do with no problem, look up parts, analyze data, evaluate production data, etc....My co-worker is covering for me right now, I feel really stupid at times and CRS (can't remember ****) seconds after being told-"

This is the classic signs of hepatic encephalopathy (HE). And there is treatment. Lactulose and Xifaxan. Will help manage your encephalopathy. I was the Sr Management of IT Operations and I could even answer the phone or remember what I had done or didn't do before I left work on medical disability due to chronic liver disease.

Diet changes:
No red meat should be eaten. It creates lots of toxins.
Consume well-cooked chicken and fish in addition to vegetable protein


"Chronic hepatitis C patients with advanced liver disease may develop hepatic encephalopathy, also called portal-systemic encephalopathy. This condition occurs when a heavily damaged liver is unable to filter toxins from the blood or when blood flow through the liver is blocked. The condition may occur in people with either acute fulminant hepatitis or long-term chronic liver disease. Few patients with chronic hepatitis C develop full-blown hepatic encephalopathy; however, some degree of brain impairment may occur in as many as three-quarters of those (estimated at 10-25 percent) who develop advanced liver cirrhosis. Hepatic encephalopathy is distinct from the more common “brain fog” that often experienced by people with HCV."

The severity of hepatic encephalopathy is measured on a five-point scale.
Grade 0 is indicated by minimal changes in memory, concentration, intellectual function, and coordination.
Grade 1 is characterized by increasing confusion and disorientation, forgetfulness, impaired intellectual function, decreased attention, agitation, lack of coordination, and disturbed sleep patterns (often day-night reversal). .
Grade 2 involves drowsiness, disorientation, loss of ability to perform mental tasks, personality and behavior changes, and increased motor symptoms such as asterixis.
Grade 3 is characterized by lethargy, somnolence (sleeping), loss of mental function, profound confusion, amnesia, aggression, asterixis, and hyperactive reflexes.
Grade 4 is indicated by coma. In the coma stage, respiratory or cardiovascular failure may occur.

Obvious point that is not always to obvious.
If you are working don't lost your health insurance. Stay on COBRA if you leave on disability. Talk to me or someone who knows about disability if you leave work. Cirrhosis can cost a lot of $$$. I have needed hundreds of thousands of dollars of appointments, tests, treatments, etc. and had had a transplant yet which I had to prove I had up to $1,000,000 coverage to be list for transplant. Whatever you do DON'T LOSE YOUR HEALTH INSURANCE!


Hang in there!
Hector

[marco126]

hello welcome

[mckansas]

Thank you for your encouragement and explanations, true I am still in shock and feeling sorry for myself. Once I get to the Transplant center many questions will be answered (hopefully), I am just angry that no one paid attention to my complaints I guess. I will get over it.

I do not plan on losing my health insurance, very important, just struggling since my husband lost his job/insurance due to the mitral valve replacement in April. I have always had excessive energy, working at my own business and the job that actually pays insurance and bills. I kept getting so tired over the last few years I started to chalk it up to old age, but now I know. I just got my real estate license last December because I was so tired I was thinking of another decent paying career I could slide into, but even that it taxing my brain lately.
Like I said, I have so good co-workers who will cover for me on the brain dead days or when I oversleep (like today) and my current plan is to build up about two week vacation by January so I can have a little breathing room before treatment, try to stay off disability as long as I can.

I will survive, don't know how long, but I ride my bike 10 miles/day, walk at work at least 5 miles/day usually around 7.5 miles so my exercise will keep me focused and strong. I'm just in a self pity party right now, but am dealing and facing reality.

[HectorSF]

You are doing great. You may have some tough years ahead but you will make it through. Transplant is a waiting game as will see.

You will get all your questions answered at the transplant center just continue to be pro-active and advocate for yourself. Win friends and influence people at the transplant center. It will be in your long-term best interest. There are many great people at the transplant center. You can't pay people to deal with this stuff. They are there to help you. This isn't easy for them either if you think about it. Be as outgoing as possible. Interact with everyone. In time you will get comfortable there. It is my second home. I feel cared for and comfortable there. The doctors and nurses like to see successful people taking care of themselves. It will make them want to help you even more.

That you can walk miles and ride a bike is beyond many of our imaginations. I am just glad to walk do the basics these days.

But we all must go though the  feeling sorry for ourselves phase, so we can move on and deal with our illness. You may experience many new emotions and thoughts. It is all part of this journey. This can be a catalyst for your own personal growth unlike any other you have encounter. It is up to you to find meaning in your own suffering. You can make it life affirming if you chose to. As we cancer folk say, "Cancer is a gift." It can be if you chose to make it an opportunity for finding out how strong you are. And a transplant is a chance at a second life. How many people have that opportunity? Very, very few.

Hang in there you are at the very start of a long journey. There will be ups and downs but you can handle it. You will learn you are way tougher than you could even imagine right now. And that is a good thing to know for the rest of your life. And no one can take that away from you ever.

You can always contact me along the way if you have any questions and I will try to help you.

Cheers!
Hector

[mckansas]

Ha ha, I have no choice but to walk miles each day. I work at Spirit Aerospace and those fuselage's are huge! That's why I started complaining a couple of years ago about my pain/fatigue to GP. I didn't understand why I felt so wiped out all day/everyday, but if I complain I won't have a job, so there's that. I ride to make myself strong as I had though I was being a big weenie about how crappy I feel. Now that I know it just makes me determined to push through it (maybe denial).  I figure if I can take the daily punishment I will be OK. The weekends are downtime though, I barely get out of bed:)

[Advocate1955]

Learning about a diagnosis of Hep C and Cirrhosis is a lot for anyone to handle.  You are not alone.  For my husband, learning about these diagnoses caused fear, anxiety, and during some periods of time, depression.  We work together to stay on top of the emotional/mental health part too.  I talk with him about changes in his emotional state that I observe through listening to things he says or through the way he behaves.  Then I point out things that I think we should consider telling his NP or his doctor about, so that they can guide and advise us or treat some of those symptoms, which in my opinion, can be devastating to a person, a couple, or a family.  As Hector said, managing this disease and its complications is a huge roller coaster, starting with the big down dip of learning about the diagnosis, and then all of the ups and downs of treatment, results, monitoring, etc.  Then adding that to all of the fear and worry about the future (whether it's your own health or a loved one's health), the stability of health insurance and the cost of medical care, etc.  It all has a huge impact.  Build a circle of support around yourself, beginning with your husband and other close friends and family, and extending out to the members of this forum as well as the "Cirrhosis of the Liver" forum, and as Hector advised the team at your transplant center.  The team at my husband's transplant center is truly a part of our lifeline.  They answer questions and call in prescriptions even when he's not on treatment.  He has been off treatment since April, saw his hepatologist in July, and will see her again, (being monitored closely because of HepC/Cirrhosis and family history of liver cancer), yet I called his hepatologist's NP when I had a question last week about a medication that his Primary Care doctor prescribed.  She called me back within 2 hours with a very clear answer.  It took 24 hours to get a call back from the Primary Care doctor's office.  Fortunately it was the same answer, so that built my confidence in the Primary Care doctor!  The team of support that you build around yourself now will be the team that will care for you and help you later as you go through your next assessments and care/treatment.  You will feel better as you come to know that they truly care about you and their responsive to your needs.  Ask them to be open, honest, and direct with you.  You will feel more confident in them if you trust that they are not sugar coating anything and being upfront with you.  Again, since you have some complications of Cirrhosis (ascites, encephalopathy), I encourage you to take a trusted family member or friend with you to your next appt to remind you of questions to ask and to take notes to help you remember.  That person will then be able to help you set up schedules for any new meds, shop for any new dietary changes, and keep files of all of your reports and labwork and future appts.  I have a file box set up just for my husband's medical paperwork from 2007 - present.  That way, if/when his illness begins to affect his ability to work, or if/when there is a question about a past treatment, I am able to look the information up quickly.  I also started keeping a little journal of notes in 2007 that I bring to every appt and write down results, findings, recommendations, treatment, etc.  I know that sounds like I may be overdoing it, but there is so much information, it is hard to remember everything, and since I keep the copies of records organized, and I write notes in a journal, I can piece it together, and support my husband in advocating for his health.  This may be a strategy that will help you feel less overwhelmed by the volume of information you are/will be receiving.  
Advocate1955

[mckansas]

Did you happen, or anyone for that matter, to find any hepatologist or recommended Hep C doctor in Kansas or within 500 miles of Wichita, Ks? Sure wouldn't mind speaking with someone else regarding my condition. Thanks in advance.

[nonsensical]

University of Kansas, located in Kansas City has a school of medicine, medical center and teaching hospital which includes gastroenterology and hepatology.  3 hours 6 mins/ Wichita to Kansas City 199.2 mi - I-70 W, I-335 S and I-35 S

Here are the numbers:

Gastroenterology and Hepatology
913-588-6019  

General Hepatology Clinic
913-588-4048  

Liver Treatment Center (Hepatology)
913.588.3294  

[gene53]

As nonsensical mentioned, the KU transplant center is probably the closest to you. I also have stage 4 cirrhosis and that is where I go. I am currently seeing Dr. Gilroy there.
Good luck

[mckansas]

Thanks for the info. I search docs/hepatologists and nothing ever pops, just GI's.

[orphanedhawk]

My suggestion would be for you to phone the liver treatment center nonsensical posted about.
Not everything is listed on the web ( believe it or not!)

[Advocate1955]

Here is the link to the University of Kansas, Transplant Services, Liver Transplant Department:
http://www.kumed.com/medical-services/transplant-services/liver-transplant

Here is the link to the University of Kansas, Gastroenterology & Hepatology Department:
http://www.kumed.com/medical-services/gastroenterology

Here is the link for Dr. Richard K. Gilroy there who specializes in Liver Transplantation:
http://www.kumed.com/find-doctor/gilroy-richard-k

Mckansas, you just can't afford to wait anymore.  If your general practitioner has not made an appointment for you yet, you need to contact either the Hepatology department or the Transplant Services Department right away and get an appointment.  The longer you wait, the longer it will take to get an appointment.
Advocate1955