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Scared: liver has a coarsened echotexture
Liver Diseases | Last Active: Aug 31 2:01am | Replies (9)Comment receiving replies
@trissa - Welcome to Connect where you will be able to learn from and share with other patients who have experience with liver disease.
As you begin your liver health journey, I want to share something that I was told early on my diagnosis/treatment - Everyone can experience different symptoms, even if patients have the same diagnosed liver disease. So, your healthcare team is going to always be your most accurate source of information about 'you' as you continue forward. (Even today, 16 years post transplant, my PCP adheres to whatever my transplant team recommends) And, patience is going to be a necessity, although not easy!
I remember when I was referred to specialist, that I had the same fear and desire for a diagnosis as you are experiencing. I wanted to read all that I could read about the possibilities. My favorite 'Go To' for reliable information, even before I was a patient there, is Mayo Clinic. Here is the link to Liver Disease where you can learn about Symptoms, Causes, Diagnosis, and Treatment:
- Liver Disease
https://www.mayoclinic.org/diseases-conditions/liver-problems/symptoms-causes/syc-20374502
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@trissa - During your pre appointment time, I would encourage you to begin to make a list of questions that you want to ask at your appointment. Are you currently experiencing any symptoms?
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Thanks Rosemary. I understand that patience is needed…scheduling and tests can only happen so quickly even at Mayo (where my care is being handled).
I am disappointed that from what I can tell on my own, there’s a pretty finite set of potential diagnoses (3) for my labs & biopsy and despite asking my Mayo provider for help understanding the diagnosis *possibilities*, the answer was only that a MRCP was needed. I didn’t appreciate that this has left me in the position of relying on Google to learn what the MRCP is used to diagnose, what a negative might mean, what other diagnoses seem to still be on the table given how my labs are reading. Any data regarding what they’re looking for and what the *options* are at this point for diagnosis has been Internet-generated because they’ve left me in the dark. And my main point is that I agree with OP that it is scary.
Maybe they can’t talk about scenarios due to liability concerns. But I would have rather heard “We aren’t ever allowed/able to discuss diagnosis *scenarios*. We need a definitive diagnosis first,” rather than the platitudes to stay positive. There are answers to my questions, but they are not being shared. At a minimum, wouldn’t you think they could have provided lifestyle advice (diet & such)? Again…it’s all been from Dr. Google.
My next appointment will be with radiology for the MRCP and I don’t think it is reasonable to expect the radiologist to know these answers. And during my last conversation with the Nurse Practitioner (my only contact in the Transplant department), I did ask him. I understand the value of preparing questions in advance as you suggest…they’re just not being answered when asked.
I am entirely asymptomatic. The issue was found during routine annual labs and the advanced testing proceeded from there.
I appreciate this forum as well as your welcome and advice. Sorry I am not in a great state of mind right now.