Tuesday's Tip

[DonnaBoll]

Monitoring our PBC can often be confusing and even scary at times - I know how often we hold our breaths waiting for lab results.

I know after diagnosis it is crucial for us to learn as much as we can about this rare disease. The problem all to often isn't doing the blood tests or even the scans (Fibroscans) but acting on those results. When a clinician gets information from our testing and does not follow up on - this is when a diagnosis is missed and the disease goes untreated all too often.

What can often be the solution is that we have a real responsibility to know what our blood values should be. After being diagnosed our work begins in many ways. We have to educate ourselves in what lab work we should be getting, how often, and what should be done - if anything - with those results, as well as what scans need to be done.

We have to do our homework.....are you familiar with the AASLD Guidelines and the EASL Guidelines for diagnosis and treatment of PBC? You can 'google' them. Tomorrow I will give you more information on these in our 'Wednesday's Word'.

[ninjagirlwebb]

It is a bit disappointing to me that everything you stated above should rest on the shoulders of the patient. While we should be educated about our condition so that we can be informed and be an active advocate for ourselves, I also feel that the medical personnel are not up to par if they don’t establish the protocol to help us manage pbc.

Having said that, for those who can…you must find a hepatologist who does all of the above on your behalf. Everything I know about tests, scans etc for pbc management comes from my hepatologist. This actually lessens my stress because I know he is doing what he should so that I can just live my life as business as usual as possible. Plus he always either calls me or lets me know the results and if any concerns the next day. Prior to my hepatologist, I had no idea that bloodwork results are available sometimes same day or next day.

If you are not getting what you need from your doctors, find doctors that do what they should.

[DonnaBoll Administrator in reply to ninjagirlwebb]

First of all, thank you for your reply. You are so right about physicians needing to be 'up to par' about managing our PBC - and doing so according to the correct protocols. We all want a doctor who we trust and know that they care for us as we should be. I wish this was true for every single PBC patient. Unfortunately it isn't. It is best to be seen by a hepatologist if at all possible, just as you said. In the US this is more easily done, I believe, as we have access to large medical centers nearly everywhere - or at least able to drive to them in a sensible time frame. However, many are still being cared for by primary or even GI doctors who really aren't familiar with PBC. The more I read from my UK members it seems to me that many are not able to 'get a referral' to a hepatologist or don't know, perhaps, they need to really see one. Believe me, there are plenty of us here in the US that are being treated by doctors who have no business taking care of PBC patients. We deserve the very best care from someone who cares and is knowledgeable. I attended a seminar once from The PBC Foundation and they stated that 50% of PBC patients are not on the correct dose of Urso. This is mind blowing to me. This should be one of the first steps, as you know, as soon after a diagnosis is made and done so according to the Urso calculator. Many physicians just aren't aware of how to treat PBC but have patients with it in their practice. Educating the medical community is an ongoing need anywhere that there are doctors who see PBC patients.

There is truly a feeling of relief when we know we are being cared for properly. The right to just live our best lives has to be one of our priorities. The PBC Foundation just launched their 90/90 Care campaign. Their goal is have 90% of those with PBC receiving at least 90% of the correct care. This is truly a huge initiative for them. The US could use this as well I'm sure. So many patients are not treated as they should be after diagnosis - or in many circumstances, even making the correct diagnosis in a timely manner.

Thank you again for your reply. I'm so glad you have a hepatologist that gives you a sense of security and truly cares.

[ninjagirlwebb in reply to DonnaBoll]

It is just mind boggling that doctors who dont know much about pbc are treating pbc patients unless there are no specialists available. My GI doctor who was also my pcp, knew his limitations and recommended my hepatologist to me. So I am grateful for his astute judgment on both the referral itself and the doctor he chose.

[DonnaBoll Administrator in reply to ninjagirlwebb]

You are very fortunate indeed in just having someone who realizes their limitations and acted upon them - serving in your best interest.

[ninjagirlwebb in reply to DonnaBoll]

Also you are to be commended on these posts for ensuring that we are getting the care we need. Kudos!

[DonnaBoll Administrator in reply to ninjagirlwebb]

Thank you so much for saying that. Having PBC myself for more than 20 years before my liver transplant, I can empathize with patients who struggle even getting a diagnosis as well as proper care. So many physicians just don't know enough about this disease to care for someone with it....

[lovesoccer]

Thank you for this post, Donna! It is especially timely as I find myself once again trying to find a specialist.

The science presented in the guidelines is fascinating (love the cell/molecular stuff). But I get where it can be daunting. Part of the specialists’ job is to make this information more digestible.

[DonnaBoll Administrator in reply to lovesoccer]

You are so right.... being overwhelmed at the beginning of a diagnosis is enough. When we start to invest our time in learning about this disease it can really be pushing us to our limits. It is important though, for us all to know the Standard of Care for PBC. I feel we need to be 'informed consumers', so to speak, about getting the care we need. Knowing what you can expect and how to interpret lab results is part of our physician's job for sure... but we need to understand so much as well.

[DonnaBoll Administrator in reply to lovesoccer]

I have often found one way to get help finding a doctor is to post here approximately where you live. Ask if anyone nearby can recommend someone. I know many members from another group that I know would be happy to help if they can. Feel free to send a private chat if that is more comfortable for you.