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.

[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.

[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]

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:)

[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]

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.

[marco126]

hello welcome