Just got the biopsy result

[Sona_akb]

😭😭 it’s written florid duct and periportal expansion, stage 2 PBC. Anybody with same stage? Now what to do?

[IAmTheGlue]

I'm sorry you did not get the results you were hoping for. What to do? Take your meds. Eat well. Exercise. Go on and live your life. I know it's easier said than done but that's all there is to do. Just go on. Try to find some peace with it all.

I'm in "early cirrhosis " with PBC/PSC overlap. That's all I can do. Find some peace and live your life. Stay strong ❤

[Sona_akb in reply to IAmTheGlue]

❤️❤️ I wish I can get to peace

[IAmTheGlue in reply to Sona_akb]

Mental health is as important as physical health. I believe that 100%. Meditate. Pray. Light a candle. Burn some sage. Go for a walk down the beach or through a city park. Get a therapist. Call up an old friend.

I've done all those things. Some help more than others, but none of it has been wasted effort.

I had surgery yesterday for an unrelated issue and I'm a little... down I guess right now. I have 10.. TEN.. upcoming dr appointments in the next 5 weeks and one of those is another surgery. I get sick to death of being poked and prodded. Believe me, I have dark days. I have days that I can barely drag myself out of bed but I still aim every day for peace. Find your peace. It may take you some time but keep searching. ❤ This is still a life worth living.

[Sona_akb in reply to IAmTheGlue]

I wish you to have a very easy surgery with amazing results ❤️❤️ Just wish if I could be like you. You’re completely right about mental health and power. I’ll try on your advice.

[Skypony]

Hi Sona, well done for getting through your biopsy and for finding this forum! It's clear that you are brave and resourceful, so you will get on well once the initial shock goes away. People can stay in one stage for a long time once they're having treatment that they respond to. This isn't cirrhosis, it's inflammation, which we all have to some degree. Many of us don't have biopsies so we never find out exactly what stage we are!

What to do? Keep using this forum and join the PBC Foundation. When you feel able, follow the advice you've been given here by lots of wise and kind people who understand how you're feeling.

Breath, smile, carry on with your life. Very best wishes.

[Sona_akb in reply to Skypony]

Thank you 🙏🏻 I don’t want to make a wish or hope anymore 😞 feeling numb.

[Skypony in reply to Sona_akb]

It's ok to feel numb - that's a normal response. it will get better

[ninjagirlwebb]

Urso will help it & the inflammation will be mitigated. Eat clean, exercise & follow up with a hepatologist.

You will be fine...2 is an early stage.

[Sona_akb in reply to ninjagirlwebb]

Hoping those would help❤️❤️Thank you for your nice sentences

[Ktltel]

Please, please listen to everyone who is talking to you. It will be ok. I know it doesn't seem like it. You've got to give yourself some time to wrap your head around all of this. I understand how difficult it must be to be so young with getting this news. Give yourself some time....continue to read all you can here. Join any and all PBC forums because I know, I've learned a wealth of information from many wonderful women in ALL age brackets. Stop looking at stats... You are you❤... everyone is different. I have been trying so hard to find out what stage I'm in... Just to know where I'm at, and so doctors have a baseline. 2 years ago I was told I didn't have PBC, but my labs said that I did... but a recent MRE says early stage 2. Then I find out, nope, gotta do the test again. Test was skewed for other reasons. And you know what? They think I'm a non-responder to URSO as well😔. But, I'll just do whatever comes next.... I'll do whatever "I" can, and do whatever "they" feel is the next thing for me to do that's best for me. That's all that we all do. And you will too sweetie!! You said you feel good, no symptoms right? .. Then continue on👣💞👠👗👙🛍💄🍏... Just a bit differently. Now it'll be with the knowledge that you and your doctors are gonna be watching your liver a bit closer.

I hope you continue to come on here and vent, share and learn❤❤. You aren't alone. 👭👭👭👭👭👭👭👭👭👭👭👭👭👭👭👭👭👭👭👭👭👭👬👬👬👬👬

Stella❤🙋

[Sona_akb in reply to Ktltel]

Dear Stella thank you for being so nice to me❤️❤️❤️ 😘😘😘😘😘😍😍😍😍😍❤️❤️❤️❤️🌸🌸🌸🌸🌸🌸🌸🌸🌸I think there’s lots of things I must learn from you and all other amazing new friends here, starting from diet and others...

[Lawyers]

Ask your doctor to explain it to you. I am stage two and my biopsy does not mention anything that was in yours.

[Sona_akb in reply to Lawyers]

I actually talked to the pathologist on phone, he was my professor in university. He explaned that inflammation has reached to periportal space which pathologically means stage2. I haven’t done fibroscan yet.

[Lawyers in reply to Sona_akb]

I just sent my results in two separate messages. Sorry if too long or confusing. Same as they were in 2004.

[Sona_akb in reply to Lawyers]

That’s very interesting I can compare it with mine. Thank you for sharing.

As I googled, pathologist was completely right about descriptions and staging. He is the best liver specific pathologist in my country and works together with liver transplant team

[Lawyers]

Mine just says Unknown hepatitis with mild inflammatory activity (Grade 1) and stage 2 Fibrosis (Trichome stain). Periodic Acid Schiff Stain with diastase digestion reveals no alpha 1-Antytrypsin type globules. Iron Stain reveals trace. Diagnosis AIH. Cholestasis is present. Granulomas are absent. Liver of normal size and spleen of normal size with some sludge in gallblader with CT they used while doing biopsy. Read the same as it did in 2004. No mention of my Portal Vein etc. To me I have some inflamation and fibrosis that has not progressed. They will not do fibroscan because of inaccuracies. But they got new MRE. PBC diagnosed June due to high ALP. Those were my first liver tests since 2009. Took a long break. Could not handle testing anymore. So now I have overlap. On Urso since August. Will get more labwork when my new insurance kicks in in a month. I see transplant heptologist in Charleston, SC. Thank you for your explanation.

[Lawyers]

Sorry missed some pages:

Date Collected: 6/22/2018 10:34

Diagnosis

A. LIVER, CORE BIOPSY:

· CHRONIC HEPATITIS, ETIOLOGY: UNKNOWN HEPATITIS WITH MILD INFLAMMATORY

ACTIVITY (GRADE 1) AND STAGE 2 FIBROSIS (TRICHROME STAIN).

· PERIODIC ACID SCHIFF STAIN WITH DIASTASE DIGESTION REVEALS NO

ALPHA-1-ANTITRYPSIN TYPE GLOBULES

· IRON STAIN REVEALS TRACE STAINABLE IRON

Chronic Hepatitis Grading and Staging Reference: Batts KP, Ludwig J. Chronic

Hepatitis: An update on terminology and reporting. Am J Surg Pathol 19:

1409-1417, 1995.

Tissue Source

A:Liver, Needle Biopsy - Not Transplant: Liver Biopsy

Clinical Information

Diagnosis(es) or ICD10 Code: Autoimmune hepatitis.

History: Itching.

Gross Description

A. The specimen is received in formalin, labeled with the patient's name and

hospital number with additional labeling as LIVER BIOPSY. It is given an

accession number. It consists of four cores of tan-yellow soft tissue

measuring from 0.8 cm up t

o 1.9 cm. The specimen is entirely submitted in

cassettes A1 and A2.

Jones, Ryan Michael

Intraoperative Diagnosis

Microscopic Description

The liver biopsy is adequate for evaluation.

The overall liver architecture is intact.

Fibrosis: (Trichrome stain): STAGE 2 Periportal fibrosis

There is mostly lymphocytic inflammatory infiltrate, mildly expanding the

portal triad with rare eosinophils and plasma cells. Lymphoid aggregates are

not identified. The bile ducts are intact. There is no lymphocytic,

neutrophilic infiltrate extending into the bile ducts. No bile ductular

proliferation is present. The portal veins are intact.

Within the liver lobule:

Ballooning degeneration (lobular disarray): rare

Necrosis:

Apoptosis: rare

Piecemeal necrosis: mild

Coagulative necrosis: none

Lobular Inflammation:

Lymphocytic: rare

Plasma cells: none

Neutrophilic: none

Steatosis: none

Mallory's hyaline: not identified

Glycogenated nuc

lei: present, few

Iron is present, trace.

Periodic acid schiff stain with diastase (D-PAS) reveals scattered positive

Kupffer cells.

Intracytoplasmic hepatocellular (D-PAS) globules are absent.

Cholestasis is present.

Granulomas are absent.

SK /PH /PH /WELSH /WELSH

Certification Statement

I certify that I personally conducted the diagnostic evaluation of the above

specimen(s) and have rendered the above diagnosis(es).

Cynthia T Welsh, M.D. (1-4497)

(Electronically signed by)

Verified: 06/26/2018 16:09

WELSH/SK

General Information

Collected:

06/22/2018 10:34 AM

Resulted:

06/26/2018 4:10 PM

Ordered By:

Claudio J. Schonholz, MD

Result Status:

Final result

Maybe you professor can understand this.

[Sona_akb in reply to Lawyers]

I haven’t print of mine at the moment but will put it here for comparison ❤️ That’s interesting that your fibrosis remained in stage 2. Am I right?

[Lawyers in reply to Sona_akb]

That is what they say. I have my results from 2004. Hope they are right.

[Sona_akb in reply to Lawyers]

Wish mine would be stable like yours. Are you taking urso ? How old are you ? I’m 31

[Lawyers in reply to Sona_akb]

I am 61 almost 62. Started with AIH in 1998. I don't why they are the same. My doctor was surprised also. I have no symptoms. Except snxieth and depression be cause of Possible PBC. Yes on Ursudiol since August. Not sure if it is doing anything. My insurance got changed. Will have to wait till after December to get bloodwork. Was thinking if she ding mu results a d slides to Mayo or John Hopkins for second opinion.

[Sona_akb in reply to Lawyers]

Good for you to be asymptomatic🌸🌸 if you are not experiencing any side effects of urso so it’s safer to continue

[Lawyers in reply to Sona_akb]

Thank you. Hope you stay 2 for a very long time also. You are very nice.