Mayo Clinic Connect
Hi this is Mahdi
@jacinta, I have no wisdom to share with you, however I completely understand your current itching misery. My itching became almost unbearable for a period of time. My GI prescribed a bile binder cholestyramine that helped me somewhat. I also used any kind of anti itch lotion and bath additive that I could find. My favorites were Sarna anti itch lotion, and Aveeno soothing bath oil. Door frames became my best buddy as I would use them as scratching posts.
I am upset that you are getting such an unprofessional reactio from that nurse. Does your specialist's nurse have any idea of how serious PSC can be? I often found that since it is a rare disease, that many medical professioinals are unaware of it and don't know what to do with it. Here is what I found on the Mayo Transplant Pages> Primary Sclerosing Cholangitis (PSC)>Aboiut PSC.
"Primary Sclerosing Cholangitis (PSC), a cholestatic liver disease characterized by persistent and progressive inflammation and scarring of the bile ducts, remains a puzzling disease.
Despite progress to develop new treatments, there is no effective medical therapy for this condition.
The disease affects about 1 in 10,000 people, more men than women, and is usually diagnosed during middle-age (around age 40).
50 percent of those diagnosed with the disease present no symptoms; abnormal liver function test results are the only indicator of disease. For patients presenting symptoms, the disease reveals itself through fatigue, jaundice, itching and abdominal pain from liver damage, with 70-80 percent of patients suffering from inflammatory bowel disease (most commonly ulcerative colitis)." https://connect.mayoclinic.org/page/psc/tab/about-psc/
Jacinta, Are you being monitored by a gastroenterologist (GI) who has experience with PSC, or a Hepatologist? How often is your MELD score updated? With PSC, in my situation, the MELD was at a steady low until it started to rise very quickly and my health declined rapidly. With your bile ducts being blocked, and no more ERCP's what is the doctor suggestion for your future treatment?
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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
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/
Liked by Rosemary, Volunteer Mentor, John, Volunteer Mentor
If you are that unhappy find another Doctor!
Liked by Colleen Young, Connect Director
@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.
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.
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
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
Primary Biliary Cholangitis – NORD (National Organization for Rare Diseases)
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.
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?
Ursodiol 300 mg. 1500 mg per day
Liked by John, Volunteer Mentor
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?
Liked by Colleen Young, Connect Director, John, Volunteer Mentor, JK, Alumna Mentor
@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
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