Hi new friends. I've delayed in hooking back in with this community because I needed some time to adjust to the news and heal from surgery. I am a bit complicated - I have an immune deficiency, called CVID (Common Variable Immune Deficiency). I do weekly infusions of immune replacement therapy. The CVID leaves me vulnerable to cancers, severe infections, raging inflammation, digestive diseases...and, you guessed it, PBC. I've had a time of grieving the fact that I have two rare diseases. I also had a terrible recovery from the gallbladder surgery and liver biopsy, because I am a sucky healer (two collapsed lungs, hematoma on the liver, cellulitis, and a complete wound dehiscence.) My gastro put me on the Ursodiol right away. It's complicated because my gastro has never had a PBC patient with CVID, and my immunologist has never had a CVID patient with PBC. BUT....I am in the process of being accepted by NIH in Bethesda Maryland (the National Institute of Health) and will be in the largest cohort of patients with both rare diseases on the US. This is a huge answer to prayer and has given me lots of hope and comfort. I think i am ready to jump into this community and learn all I can to be healthy. The main issue I have now is profound fatigue. (I am still recovering from surgery, complications, infection, and newly diagnosed to PBC.) I
My question is this - is this fatigue/weakness part of the pbc journey? And what about weight loss? I am dropping weight pretty quickly and am already quite petite.
I am grateful this community exists...Hope you have a great Tuesday!