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PBC Foundation
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Hepatologist Appt 🥰

For those who have been wondering, I finally had my appt yesterday. He isn’t the one I’ve been waiting for. Seemed the other one was taking a little too long. My GI’s NP made a phone call to Dr Mantry, head of Hepatology at

Methodist Liver Institute in Dallas. (Methodist denied him seeing me a few months ago because I am self pay). So Machelle worked her magic & he agreed to a consultation appt. After reviewing my records he said he has no concerns. I will continue OCA. The two vitamins he wants me to take are Vit A & Vit D (prescription). I expressed my concerns regarding fibroscan. He said BMI has a lot to do with accuracy & he does them daily & will probably want to do one himself at his Dallas office. I stil don’t want one., lol! There might be a biopsy in the future. No diet restrictions because he feels my liver is having no problems functioning , but I will still be sensible. NO RAW FISH. He feels weight loss is due to thyroid & definitely not the liver. So unless I have a problem, I see him 6 months & labs will be done at that time. He said if I get antsy & want them at 3 months, ok, but no need. So I am finally at total peace ☺️. I love this man & feel blessed.

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That's very encouraging news! It sounds like younare doing great!

Pam

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Yes. I have had many restless nights worrying. He told me maybe I would sleep last night after seeing him. Indeed I did😊

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I’m going to NYC on the 30th , lots of questions

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Ok. I wish you the best. 🙏🏻. Please stay in touch😊

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I sure will

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I’m so happy for you 🙏

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Thanks Arlie 🌹

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I'm very happy for you!

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Thank you. He was well worth the wait 😊

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Yay!! ❤❤. A bit of relief for you and us as well. Thanks for sharing. Please keep sharing. I'm still waiting to be accepted for Ocaliva. Feel ok. Labs in February. We will see.

Stella❤

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Yes ma’am. Makes such a difference when you know you are eye to eye with a specialist who knows his stuff. He was quite humorous a couple times. He was so easy. Really hoping OCA comes through soon for you. It should make things better. Stay in touch😊🦋

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Very encouraging

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Yes it is😊👍

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Whoot Whoot!!! So happy for you!!!

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😀. Thank you!!!

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So happy for you! It makes a huge difference when you have a doctor that you feel confident in. Sounds like he has eased your mind💕

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Yes he did. Thank you ☺️

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Hi gwill , i’ve been reading an MRE is replacing a biopsy , it detects the whole liver

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Hi Arlie! Been wondering about you. Yes it does. He may not do biopsy unless he feels a need. I know Dallas has the MRE & I will definitely ask him about it. For some reason he is confident with fibroscan. He asked if a dr performed my fibroscan. He seemed surprised that a technician did it. So how are you doing?

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I’m ok nervous until I go to NY , I started back on lactulose, the ammonia level is elevated

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I’m hoping you will feel much better so you can travel to see your sister & I can meet you. 😊

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I wish that also

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Thanks ninj

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I am so happy that you were able to see the hepatologist to ease your concerns. Sounds like you are in great hands. Have you done a biopsy before?

Carry on & continue to take good care of yourself.

Haley

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Thank you! I’ve never had a biopsy. But I felt so much trust with him I told I will let him do it if that need arises. 😊

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I had one to diagnose the pbc. I was apprehensive about getting one, but it was necessary.

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How much A and D did he prescribe? Were you low?

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10,000 IU A daily. 50,000 D weekly. No, Vit d hasn’t been checked in a while & it was normal. Dr said we have trouble absorbing those two.

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So happy to hear this news!

The value of having a kind, understanding, expert Dr who both has your back and possesses a sense of humour is enormous!

You can sleep peacefully now Gail.

Karen

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Hi Karaliz. Yes that’s so true. He was very late coming in the room but I got my time with him. 😊. Yes, I slept like a baby last night. Thank you so much🌹

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Karaliz...when we were discussing Ocaliva, I told him about you & the trial. 😊

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I wonder was he interested!

I have just discovered in fact through my research that OCA has been passed by the TGA here and will hopefully be available soon.

Great news all round!

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I was telling him my concerns with OCA & went on to tell him about you being in the trial & OCA had actually helped you. He stated, as we have read, most of the problems were with physicians & improper dosing. He has participated in several clinical trials as a site principal investigator & is also a consultant for many pharmaceutical companies. Is also involved in PBC research. That’s great news for Australia! 😊👍

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That certainly seems to be the consensus. Because I am receiving OCA offlabel ( ie post the trial but before it is commercially available) I was given a lot of literature related to the adverse events we were all made aware of. Incorrect dosing as you say was the main problem and I believe it may not be suitable for those with advanced cirrhosis ( I know of one person with decompensated cirrhosis who was taken out of the trial).

Yes indeed - I typed in OCA Australia and found the information !

Sleep tight.

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That’s awesome!!! Good things coming your way🙏🏻☺️ G’night

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I'm pleased for you. It sounds like you succeeded with your search for a doctor who Knows as well as Cares. You have a good contract now: you can do your stuff and relax knowing he'll do his. It's what we all need, and all we need? x

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Thank you😊. Yes I feel he is a good choice. After researching his background I felt comfortable. He is from Pakistan but speaks English relatively well. Now, if I had to be drugged & talk to him, I might have difficult time following him, lol! But yes, he is definitely who I need. As this was only a consultation, it was enlightening. Future will tell ☺️🦋

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So good to read your positive news.

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Thank you butterflyEi😊

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So pleased for you x

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Thank you😊

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Thank you!

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Such good news xx

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Yes ma’am. Thank you!😀

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