One Life: A PBC Update

101ceb3c-5ae7-490a-8e78-b0ca3ca8bc7aAfter much testing, I finally had a follow-up with my gastroenterologist, who sees me for my PBC diagnosis.  Previously, she had acted like I did not have PBC and we argued extensively over it.  Ultimately, she made me do an unnecessary liver biopsy just so that I could prove to her that I am not a hypochondriac, and that I do, in fact, have this rare autoimmune liver disease that will eventually land me on the transplant list.  I’m still a little resentful over the fact that she did not believe me or my medical records, but I am trying to move forward from here.  In all other respects, she is a good doctor.  I just think that she was too cautious with my case, but that’s neither here nor there at this point.

7a3a2fc8-3b30-4941-b1f6-6bb84d2e9e91We went over all of the tests and bloodwork that she has ordered for me in the last 6 months.  Everything is looking great so far!  I am still responding to Ursodiol, which is the only FDA approved medication for PBC in the United States.  Not every patient responds to this medication.  Some can not tolerate it and for others it just won’t help their liver enzyme numbers.  I am one of the lucky ones who both tolerate and respond to it.  My liver enzymes were back in the normal range within 6 weeks and that was practically unheard of according to my doctor at the time.  It’s such a blessing to know that the medication is still working like a dream.

b8c1c581-f90d-4272-85c9-5fc59cfe32c6This particular doctor is also seeing me for the esophageal dysmotility that is caused by my scleroderma.  Initially, we were going to do another EGD to see what the issue is.  However, after further review of the swallow test, it appears that the problem is more in my throat than the esophagus.  Rather than undergo another unnecessary procedure, we have decided not to do it at this time.  I was over the moon with excitement that I don’t have to deal with the anxiety of yet another procedure.  Now I must be referred to an ENT and speech therapy to deal with the choking and gagging problem that I have been experiencing lately.

66148fb4-fe33-4dc8-a2c9-35fbe39c004bNow that most of the liver testing is out of the way, I am ready to settle into a twice yearly schedule, which is what my doctor and I agreed on.  I am not comfortable waiting an entire year to find out if my liver disease has taken a turn for the worse.  Every 6 months makes more sense to me.  I feel like it is best to err on the side of caution when it comes to my health.  So far that seems to be working in my case.  I don’t drink alcohol, I don’t take medications or drugs that would be harmful to my liver.  I eat as well as I can, drink insane amounts of water and get as much exercise as possible.  I take my medications as prescribed and follow most of my doctors’ orders.  All I can do at this point is live my best life every day because that is all that we will ever be given… One life.

Stay safe autoimmune warriors and friends and family!  Love and light now and always.

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