Hello, my name is Alex. I’m 39 years old, and my husband, son, and I just moved to paris, France, from Houston in June. I’ll make a very long story short-I have had loose bowels since March, but only in the mornings. I had full labs in March and mid-May, and all was totally normal. I had a CT scan of the abdomen in mid-September, and it was negative for anything wrong. I came down with a virus October 3, and by that Saturday, October 6 (?), I was itching like crazy. I was also exhausted, nauseous, and lethargic. Itching continued, I saw my GP, and she ordered labs drawn. My liver enzymes were through the roof-ALT and AST 900/780 respectively. GGT 74, ALP 143. Bilirubin is measured differently here, but it wasn’t that high. Ended up in the hospital that Sunday for a bout of weird pain (lower down-felt like labor pains), so one week after the itching started, and everything had dropped a bit except for the conjugated bilirubin, which went up. Had ultrasound in the hospital that was totally normal. Labs the following day showed same trend, as did labs that Wednesday. Had an EUS last Thursday. They told me my bile duct was inflamed, and they started me on questra and Urso. I went to see my gastro today (after emailing to ask for clarification), and he said again that it was “inflamed”. I asked specifically if there was beading or scarring, and he said that the walk was thicker. I think he had no idea what I meant. I asked if it looked like PSC and he said, looking at me like I was crazy, “Well, yes, it’s PSC. We have ruled out all autoimmune diseases and the hepatitises, so it is PSC. But you’re at the beginning, and it progresses slowly. So don’t worry”. Ummmmm…yeah, not a good answer. I got more labs. Everything else has continued to drop (four days on Urso, five on Questra), except my bilirubin, which is still climbing. I’m itchy, yellow, and my poop is pale. So, here’s my questions:
- Has anyone gone back home to the states to get a care plan and then moved back to another country?
- I would go to NYC for treatment. Has anyone heard of Brett Fortune or Thomas Schiano?
- I have NO other symptoms besides climbing bilirubin-no pain, fatigue is fine, no fever, etc. This all came on in the space of 3 weeks. Is that possible?
- Would I be better off going to London for treatment or follow up, or should I go back home?
- Is my climbing bilirubin dangerous? What should I do?
We just got to Paris. We love it, and most importantly, my son loves it. He is 7 and a pediatric cancer survivor, and I don’t want to leave this city and pull him from his school if I don’t have to. I don’t have a lot of faith in my doctors here, though, so I need to at least devise a plan without them. We are thriving here, and it’s the opportunity of a lifetime, and I don’t want this to dictate the trajectory of our lives right now.
Thank you for your help and advice!!