PBC Foundation
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EGD & varicies

Just wanted to update everyone. I went in for my follow-up EGD this morning due to having two areas banded six weeks ago. Had to make sure they are healing properly. Unfortunately I needed three more areas banded. But on a good note, no bleeding😊. Just that my varicies have gotten a bit bigger & the doc feels that he has repaired the areas needed. Fingers crossed that my GI has this under control now. Im due back at Indiana University to see my heptologist on the 25th plus I am scheduled to have a ECO test done on my heart the same day. Keep the prayers coming❤️

Stay strong❣️

Shannon

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I'm glad you're not bleeding and your GI feels it is under control. 😊 And the 25th is rapidly approaching so I'm glad you won't have to wait much longer.

I'll be praying! ❤

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Oh Shannon,

I'm so glad they caught them in time. What is the Ocaliva supposed to be doing for a person at this stage? I hope you are keeping to a no sodium and sugar and fat-free regimen. It's so hard but, I realize it makes a difference doesn't it?

I'm glad you're seeing your doctor regularly. Seems things can change quickly and listening to your body can make such a difference.

Know that prayers go out for you daily. ❤

Keep posting... we're listening.

Stella ❤

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I am due again for bloodwork soon. The Ocaliva is helping to keep my hepatic panel numbers better. It had nothing to do with my varicies needing bands. I have no doubt that this is due to my stress level. I always tell everyone else to try to stay stress free, yet here I am stressed to the extreme. It's just a truly difficult time with only one income & appealing my disability claim. There's more going on but Im not getting into all that right now. Just some serious decisions that I need to make for myself & my girls. I know God is in control of all. It's just so confusing.

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Oh, OK👍. I don't understand how everything works and what that medication is supposed to do.

Sometimes it's hard not to stress. Besides being sick, we have life to contend with... and a lot of times life IS stressful. I understand that.

You are right, God has a purpose. We talk to him through prayer, He talks to us through his written word. I believe that.

Thinking of you.

As you say, and I'm trying to do,...Stay Strong ❤

Psalms. 3:5-6. (Psalms chapter 3, verses 5-6)👍

Stella ❤

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Thank you for the bible verses. I saved them to my bible app😉😊

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🙏

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Hi Shannon

Sorry to hear your news but glad they are keeping a close eye on you. You really shouldn't be under so much stress I know it's easy to say but maybe when you get your disability sorted out that's will be one less thing to worry about. Keep your chin up girl. We are here to listen anytime xx

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You are in my prayers Shannon ☺

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🙏. I hope you can get some help- friends, church community etc. sounds like you could use some "in-person" help.

You are shouldering a lot. Praying that new resources arrive to help you.

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Hi, sorry for disturbing...I have a question: how your doctors measure the stage of this disease? Following your LFT's, or by fibroscan? From where you know the stage of PBC? Here, in Romania we know very little about this disease and I'm very, very scared :(

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My dr measured by fibroscan.

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Thank you for your reply!

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Shannon,

Was thinking of you today- wondering how things went this week with your Eco test and dr appts? Hoping you are doing ok and that stressors have been reduced. 🙏

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Hello, I haven't been posting lately, just reading. I've had a rough week & am taking a bit if a break from everything. Today is my baby girls 9th birthday😍. It's a difficult one due to having no money to do much. But we'll get through. Im still pretty wiped out from traveling to see my hep doc. It usually takes a good while to bounce back. This month has been hard with the banding if varicies plus everything else. I'll be back once everything soaks in & my mind frame is back. I haven't been positive this week. Praying it passes, God has this, I know

❤️

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Shulsey...have missed seeing you post. You are one of our most positive & encouraging members. Take care & we’ll look forward to hearing from you soon. 🍁🌞

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Hi,

I understand wanting to be positive- just want to say that you are human and dealing with a lot and it's ok to be mentally down sometimes... it's normal reaction to all that's going on..

Also want to say-- you don't always have to be the cheerleader here-- we can lift you up as needed too. Do whatever you need to do to get through. No pressures. God bless.

And a big happy 9th birthday to dear daughter 🎂

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❤️

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Happy birthday to your little one and big hugs to you. Hope the week ahead is better for you!

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I just had an EGD 2 weeks ago. I have esophageal varices. Not bleeding. But I am concerned and nervous.

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I understand the worry. I found out about my having varicies the hard way. It was one year ago this past May. I had been down with the flu for close to two weeks. Tried to go back to work but felt extremely uncomfortable in the abdominal area plus I looked as if I was 7 months prego & my ankles swollen. My GI ordered a ultrasound, which I didn't make it to the appointment because the early morning hours of the next day I was laying in my bathroom floor puking straight blood. I was admitted into the step down unit of the hospital, had to have a two pint blood transfusion & had three areas banded with two of those areas still actively bleeding. It was really scary but as long as we keep our appointments & procedures current we shouldn't have any issues. I've had almost 8 areas banded since I found out I had grade 2 varicies. The main thing that is a no no is lifting & any strenuous activity. My heptologist placed me on a weight lifting limit of 25lbs. He says that anything that can cause me to strain can cause the varicies to burst causing a bleed. So far I haven't had any more bleeds because my heptologist & GI Dr's keep a close eye on my bloodwork. Plus having the EGD done on a regular basis. I hope this helps a bit. Yes, it is scary, but can be managed.

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I hope everything is going good for you. So far I have 2 protruding lesions of protruding esophageal varices. It makes me really nervous. We just have to take it a day at a time.

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