The throat problem you mention is scary to me. Do you have GERD--gastric reflux or a hernia? One very dangerous complication of PBC is ruptured esophageal varices (the blood vessels in your esophagus blow up like balloons because the scarring in the liver won't let the blood through and the blood vessels rupture and that is how my grandmother died suddenly, doing housework, not even knowing she had enlarged esophageal varices or that her esophagus had eroded enoughthat they would rupture). That's why I freak out about
my neck. If you have reflux or any heartburn or hiccup acid or anything like that you need to get it treated and keep it under perfect control and you need to get an endoscopy to check to see how bad the erosion is if there is any, if you have this problem. They just put you on prilosec, but you need to know how bad it is because if its really bad there are other things they need to do as well. That is really scary, and being all alone, been there not too many months ago. You need to get the esophagus taken care of as a major priority, it can be life threatening. I sleep with my head elevated, which helps. My boyfriend cuts my food into tiny pieces for me so I don't choke, that is one nice thing he does and it really helps me alot. Please get the esophagus thing taken care of and get an endoscope and have them look down there and figure out whats wrong and get it treated. You do not want to have problems like my grandmother. It was not a nice way to go.
I've started my 24 hour urine and the lab tech that gave methe jug didn't put the boric acid in it because they didn't have any in the cabinet and she didn't feel like going upstairs to get more. She said, its no big deal she'll just put it in when I bring the urine back. I asked her what the purpose was for it and she said it was a preservative. Then I said, won't the urine I bring in be useless and spoiled since it didn't have the preservative? And she said, oh no no its fine. So now, who knows if the test will even be accurate. Well, I got more labs today and got my liver done and bilirubin so that worked out and now I will know on that side if I'm getting worse. You will find it comes in waves. Like you feel cruddy but stable, then all the sudden for a few months or even a year, all this bad stuff happens, like you get sick with weird stuff like the pneumonia and other serious stuff, then it goes away for a while,though you still feel cruddy, more cruddy than you did before, and so it goes. That's if you don't get it treated right. Hopefully your docs willget you on the right meds finally and you will start really getting better. That's what I'm hoping for too. Let me know what the doctor says about
the esophagus and I will keep bugging you until you get it done unless they have already done it, because it is very very very important. The lungs are too, but believe it or not, the esophagus with liver problems is really really maybe more serious. (((((hugs))))) and take care and know you are not alone, we are here and I will be thinking of you and praying for you.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments