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4043517 tn?1374006573

Liver Biopsy Results

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.
31 Responses
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4043517 tn?1374006573
Thanks all for comments, I hope I'm not projecting my hopes for a caring informative doctor is not out of line. So much going on in my personal life right now, confusion has ensued.
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Avatar universal
I think it should be fine to bring 1 or 2 of your adult children into the appt. with you.  I always go with my husband to his appts.  We talk about his questions ahead of time, and I make a list of questions.  I bring a notebook and pen, and I take notes as we talk to the doctor.  I would even recommend that you consider making one or both of your adult children your emergency contacts and give them signed permission to hear any or all information.  That is what my husband has done, because he doesn't always remember or understand the details.  Therefore, since he's given me signed permission to ask about his medical conditions, I can call his doctor or his nurse practitioner directly to ask questions or receive information.  I have all of his lab slips and test results and reports from procedures in a portable file box dating from 2007 (diagnosis) to now, and I have notes in the same notebook from the same time period.  That way it is all handy in case I need to double check something or a question comes up.
I strongly recommend that you do bring at least one of your adult children with you, prepare questions ahead of time, and bring copies of your most recent labs and reports with you.  Hopefully your original doctor forwarded all of your records, including the slides from the liver biopsy, to the new doctor.
I'm glad to hear that you finally have an appt with a hepatologist.  You will be in good hands now.  Remember, as OH recommended above, do not eat any red meat, take a vitamin that doesn't contain iron, drink water, limit salt, until your appt., and then ask the hepatologist what you should be eating.  If you take Lactulose, you should be taking enough to have at least three soft stools per day as less than that will cause your ammonia levels to increase and make your hepatic encephalopathy worse.
Take care mckansas.  Keep us posted.
Helpful - 0
1494170 tn?1361750860
Yes definitely bring in at least one other person with you. I go to KU TP center as well and my wife usually goes in with me. I try and have any questions ready to ask my doctor and it helps if who ever you bring can help with taking notes and/or remembering what the doctor tells you. Sometimes the news we hear in there can be a bit overwhelming so it is good in my opinion to have help remembering and also with the notes, besides there is plenty of room for at least one other person.
Best of Luck
Helpful - 0
4043517 tn?1374006573
The question is also to others, I have an appointment (finally) with KU Transplant center on Dec. 7 and wanted to know if it's appropriate to bring 1or 2 people into the appointment with you, or should they wait while I see the hepatologist? Or, should I see them first by myself and then bring my adult children in with me on subsequent visits? I am not sure what to expect, what they will tell me, what I should be asking, etc..
Helpful - 0
223152 tn?1346978371
I looked at your profile and saw that ejoli has made contact with you.  Good. She is under care at a Kansas transplant center and has cleared the virus after her second treatment for Hep C, this time with Victrelis.  Unfortunately, she has developed decompensated cirrhosis.  She is a good person to make contact with and I hope she has been able to give you infromation so you can get an appointment soo.

Best of luck
frijojle
Helpful - 0
Avatar universal
Your GI is not advising you well in my opinion.  You have Cirrhosis with decompensated liver as you have ascites (swelling/fluid), hepatic encephalopathy, and dramatic weight loss.  He should have gotten you that appointment a month ago, and you would be in with a hepatologist in a transplant center now.
You must be your own advocate.  Make the appt.  Find out what you need.  Bring everything with you or send it in advance, but make copies for yourself first.  Bring someone with you to take notes as your new doctor advises you.
Advocate1955
Helpful - 0
4043517 tn?1374006573
Apparently the GI who was going to refer me over a month ago hasn't ever called back, thus my questions again regarding a contact. I do not trust this guy, so I will move forward with this information. The GI told me not to worry, wait until next year for treatment, but I AM worried as my internal organs feel like a package of worms squirming around and striking with poison filled tentacles at various targets in my gut. That's the only way I can explain it. Thanks again to all who gave me some new contacts to call, I truly appreciate it.
Helpful - 0
Avatar universal
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
Helpful - 0
163305 tn?1333668571
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!)
Helpful - 0
4043517 tn?1374006573
Thanks for the info. I search docs/hepatologists and nothing ever pops, just GI's.
Helpful - 0
1494170 tn?1361750860
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
Helpful - 0
Avatar universal
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  
Helpful - 0
4043517 tn?1374006573
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.
Helpful - 0
Avatar universal
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
Helpful - 0
4043517 tn?1374006573
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:)
Helpful - 0
446474 tn?1446347682
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
Helpful - 0
4043517 tn?1374006573
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.
Helpful - 0
3997096 tn?1349317861
hello welcome
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446474 tn?1446347682
"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
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Avatar universal
here is the link for the trial cited by Hector.

http://clinicaltrials.gov/ct2/show/NCT01687257?term=hepatitis+c+colorado&recr=Open&rank=29
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Avatar universal
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
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163305 tn?1333668571
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.

Helpful - 0
Avatar universal
  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.
  
    
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4043517 tn?1374006573
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.
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