PBC Foundation

Worst EXPERIENCE!!

I apologize this may be long. I was referred to a GI who specializes in Hepatology because of my blood work results. At my first visit with him he diagnosed PBC and ordered a liver biopsy to confirm and get a baseline and also scheduled a colonoscopy because he said I was overdue one. Ok, no problem.

I got the biopsy the week before Xmas and no phone call with the results. I assumed it was because of the holiday. After the holiday I called and the nurse apologized and said the results were back the day I had the procedure and the dr would call me back that day.

No phone call but 2 hours later the results appeared online on the patient portal. It was all medical language, sounded scary and didn’t make a lot of sense but my SIL is a nurse and she helped me decipher. Still no Dr phone call!!

Then a week later I get a call from his nurse telling me I have an infection and he is calling me in a medication. Infection?? She later changed that to inflammation(??). She said it was not an emergency but to start taking the medication (Ursodiol) and the dr wanted to speak with me before my colonoscopy and would explain it then.

Fast forward to my colonoscopy, no one seemed to know what I was talking about, even the dr. He acted like my husband and I were being hysterical for asking to speak to him before the procedure. We explained the phone call and he was STILL rude. Had me crying before my procedure. I got a very basic, short tempered explanation of PBC with no personalization or comment on my results. He asked me twice if I read the results he published, like that is all I needed to know.

I am going to ask my GP to refer me to a different doctor. What should I look for, how should I decide on a doctor for PBC? I want to have a doctor picked out when I go back to her for the referral!!

7 Replies
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Try to find a major hospital with a hepatology dept & identity a doctor who has experience with PBC. Then try to read reviews about the doctor & choose one that way.

I usually just go with my Primary Doctor's referrals for any specialists. Only once, I didn't like a doctor he recommended so I found someone else. But seems like that isn't working for you.

Or if there is another doctor you trust, maybe call them & see if they can make any recommendations.

It's hit or miss either way.

Good Luck!

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So sorry about your bad experience with the doctors! Myself, I never had a hepatologist. I'm seeing by my regular gastroenterologist for PBC. She and my primary doctor diagnosed me very quickly with PBC by the results of the bloodwork and the liver biopsy. I started on Urso shortly after being diagnosed. Both of my doctors are really nice, positive and keep me well informed on all of my tests. Start with finding a good GP (referrals by your friends, neighbors, family) and he/she will refer you to the right specialist. I'm sure you'll find a doctor who will be attentive, knowledgeable and keep you informed. Stay positive!

Best of luck to you!

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Hi Rebekahw74

Your profile does not show which country you are in but as you say you need to ask your GP for a referral I am assuming you may be in the UK. Professor David Jones is at the Freeman Hospital in Newcastle and is a leading authority on PBC. If you are in his area or can travel perhaps you can get a referral. For myself I am in the south of England and there is a very kind hepatologist at QA Hospital Cosham (Portsmouth). If neither of these are an option then the PBC Foundation may be able to give you the information you seek.

I myself experienced a very rude and unkind specialist back in 2007 who dismissed me from the care of his department and I went without treatment for about 5 years, not even any help from the GP because I did not ask for help having been given the impression that I had nothing of importance. There are some strange specialists out there!

let us know how you get on.

best wishes

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I totally agree there are strange specialist... The worse bed side manor. Mind acts like there's nothing to worry about. I am glad when there's an emergency and he has me see one of his partners. Happened twice and both times they was much nicer. I'm glad you have a a very kind dr now. I hope going without treatment for 5 years didn't hurt your health. It's ashame drs can be so uncaring. I feel I'm easy money and just a paycheck to them. 💰

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I’m am not sure where you are located, but I am in the US and I lucked out because I happen to live one hour from a hospital with the 4th largest transplant program in the country. This hospital has an affiliated Medical Group of specialists and I chose a Hepatologist from that Medical Group.

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I live in the Miami area. I am thinking of going to the Cleveland clinic.

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OK... I’m an hour south of Tampa and Tampa General Hospital has the 4th largest transplant program in the country... Cleveland clinic is awesome, so any large hospital that has a large transplant program usually has an affiliated medical group which works hand in hand with the hospital. Tampa’s group is called Tampa General Medical Group. The great thing about getting into their affiliated medical group is the fact that you will be already in their pipeline and when the time comes to be put on a transplant list they will do it automatically.

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