Hi @jacinta, if you are seeing a hemotologist at Mayo Clinic, I encourage you to contact the Office of Patient Experience to discuss your situation. They can help mediate. Find out more here as well as contact information for all Mayo Clinic locations: https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Some patients really appreciate the email functionality through the patient portal and ease of use of electronic communication through the Mayo Clinic app. If this is not your preferred communication method, please talk to your nurse about it. We want to help improve your faith in your care.
Jacinta, I also noticed that you are not following the Primary Sclerosing Cholangitis (PSC) blog here on Connect. I think you might be interested in this blog written by Mayo experts:
– Primary Sclerosing Cholangitis (PSC) https://connect.mayoclinic.org/page/psc/
You'll also see that there is a conference for PSC patients and caregivers being held in Rochester, MN June 20-23, 2019. See more info here: https://connect.mayoclinic.org/page/psc/newsfeed-post/15th-annual-conference-for-psc-patients-and-caregivers-in-rochester-mn/
@djallan, Hi and Welcome to Mayo Connect. I am happy that you have joined this discussion.
I am a transpant recipient. I celebrated 10th year anniversary last montt (April). What brings you to here? Are you a recipient, a patient, a caregiver or loved one? I invite you to pour a cup of tea or coffee and join the conversation.
Hello @foustr68, Welcome to Connect. There is an existing discussion for Primary biliary cholangitis (PBC) where you can meet other members and learn how they are managing PBC. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion.
> Groups > Transplants > Primary Biliary Cholangitis and Autoimmune Hepatitis
— https://connect.mayoclinic.org/discussion/primay-biliary-cholagitis-and-autoimmune-hepattitis/
You can also find more information that may help answer some of your questions on the following sites. I'm also tagging @rosemarya who may be able to answer your questions.
Primary biliary cholangitis – Symptoms and causes – Mayo Clinic
— https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
Primary Biliary Cholangitis – NORD (National Organization for Rare Diseases)
— https://rarediseases.org/rare-diseases/primary-biliary-cholangitis/
Have you asked your doctor about your question on taking medications and if a change in diet would help?
Liked by Rosemary, Volunteer Mentor
No, I haven't had the opportunity to talk to her. I was just told I have it and what I should take.
Thanks for all the info.
Was just diagnosed with this. Have lots of questions. Can anyone help.
Will the medication they gave me help me feel better.
Do I have to take the medication for the rest of my life?
Does changing my diet help?
Are just a few.
Hi @foustr68 I'd like to join @johnbishop in welcoming you to Connect. You may have noticed I moved your post to this existing discussion on Primary Biliary Cholangitis that John suggested so that you could connect with others who have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.
@rosemarya @jacinta and @djallan may be able to offer you support and answer questions you have.
Back to you @foustr68 what medication did your doctor prescribe?
Hi, @foustr68. I have some experience with a liver disease, and I would like to offer my knowledge and experience as a patient. I can understand how confused you must be right now.
My girlfriend who had Primary Biliary Cholangitis (PBC) took Ursodiol and her PBC remained stable for her lifetime. (She died at 84). She received her original diagnosis from her Gastroenterologist (GI) who monitored her regularly thru routinely scheduled labs. She also had regularly scheduled labs drawn. I wish there was more that I knew about her experience except to say that she led a normal life and always gave me a thumbs-up after her appointments. I had a different liver disease and I took Ursodiol.
What led to this diagnosis? Are you experiencing symptoms now?
@foustr68, I have had you on my mind recently. Today I had my own routine labs drawn and I am waiting to see the results – always a time of anxiety for me!
I lived with a liver disease for nearly 9 years prior to a transplant, and I remember the fear and the feeling of aloneness. I also fought a whole army of well meaning friends and family who offered well intentioned, but potentially harmful cures for me. I would like to offer my support during this journey. Have you seen your doctor yet to learn about this condition and how it affects you? Has the URSO had any effect on how you feel?
Liked by JK, Alumna Mentor
@jacinta
I have a Hematologist who never picks up the phone to discuss my condition. She also believes that twice a year is enough to see her and get blood work done. When I do see her, she sees me for 20 minutes and never looks into my eyes.
Her Nurse hasn’t a clue and believes it’s alright to e-mail through “my chart.” I have sent a few condescending messages questioning why she won’t pick up the phone to answers a few simple questions to give me peace of mind. I also told her she was “cold” and in the wrong profession. She never takes responsibilities for her errors. She consistently blames other people. I find it difficult in dealing with liars. She doesn’t understand what PSC is.
I just don’t know who to turn to now. My faith in my Doctor and Nurse is soul destroying