@hopeful33250 and @techi hi, i’m A bit late in joining in due to other, unrelated problems I am currently dealing with. I believe hepatologists are gastroenterologists with a further speciality. My hepatologist is part of the Gastrenology department.

Ammonia levels do not stay constantly high. Mine varied a lot, most days I was fine and functioned normally, I never got jaundiced at all, ever! Then I would have an HE episode and my level would be very high. The rest of the time I lived a normal life. If your doctor assumed because you looked and functioned fine on that day that you did not have an ammonia problem he is obviously not a specialist in these problems. My PCP also did not pick up on what my problem was because that was beyond his experience. He had me going to for a neurologist because he thought my HE episodes were a neurological problem and a hematologist because my platelet counts were low. The neurologist finally put the pieces together and had an ammonia test done when I was in the hospital from an HE episode.
I hope things go well on your appointment. Let us know what that doctor says.
JK

Thank you so much joy because you know l felt the Lord tell me something was just not right. And at first l was believing my doctors but the couldn't come up with any answers but l was mentally deranged and l would pass out and sometimes l could remember and sometimes l couldn't. Then this pass Jan when l fell out they said l hallicuated and when l got to the hospital and they did my lab the next thing they did was have the psychiatrist come to see me and the weird thing was they never told me any results of my lab. I found out they never ran a test on my ammonia level. I asked them but they were a little reluctance and said fine. It was strange my husband couldn't believe it. Then the er doctor called me 2 days later and said l had a uti and she would call in something in for me. So when l came to the Mayo clinic the internal meds doctor was great and she said you don't have any mental problems. When l saw the neurologist there she told me l have been a neurologist for along time and so l know about neurological issues. So I had a lot of test ran which l was happy l did. Everything for the most part came back normal. And when l saw the vascular meds doctor he just verified it wasn't me so l have an appointment tomorrow with a gastroenterologist/hepatologist and also one the following week at the Mayo Clinic so that's why l wanted to know if it fluctuates because when l just fell out l thought it was because it was high and when l went to the hospital it was ok. Also l been having a lot of bloating but the doctors here says that normal which l never had this much bloating. I've gained a lot of weigh since l last was at the Mayo in Sept. So that's not good at all and l am starting to have chest pain which l haven't had maybe over a year ago. So l will see what he says tomorrow. Have you had some of these symptoms? Well thank you for answering my questions this is all something new to me.

@techi When a doctor tells you something, like mental problems, it’s so scary. The PCP I had at the time of my first HE episode called me and told me ON THE PHONE that she thought I had Alzheimer’s! I went to the neurologist and he basically laughed at the inaccuracy of her diagnosis. I also happened to have an appointment with my endo who I had been going to for a couple of years and he too laughed at it! When, a year and a half later, they finally figured out that I had cirrhosis and that the confusion episodes were HE it was a relief despite not being a great diagnosis. I had a transplant in September 2016 and every day I get up and thank God that those days are over. It was scary living each day worrying that I might have an HE episode that day. Overall I really did not have that many but they were so scary that they really effected me.
I did have bloating in my feet (edema) but did not have ascites (belly) until about a month and a half before my transplant. I never had chest problems, nor have I heard of anyone who has, so that may be unrelated.
Will be looking forward to hearing how things proceed, please keep us posted. Knowing what is wrong is just such a huge relief.
JK

I just went to my new hepatologist and he explained everything about my portal vein. He told me that if there is no blood flowing out from the right portal vein that's suppose to flow from the vein to the liver then it's ok until you start bleeding. He told me sometimes that happens to people but that doesn't mean there's a problem. He wanted to get my films from the Mayo clinic to see what problems the doctor sees. He said he only has the records but he needs to see the film's and if there is a problem l can get the procedure done at the Mayo Clinic or he can do it. He also said you are the patient and we want the best for you. I really enjoyed his response so l am praying weather l should cancel my appointment for next week. What do you think? I know l have to make the final decison but after all the misdiagnosed I've been through its hard to decide.

@techy, Thank you for the uplifting update! I am happy for you that you are getting some answers.
Your new doctor sounds fabulous, too. I believe that you have hit the jackpot: He explained everything, and he wants the best for you, the patient.
I do not have the expertise, or qualifications to provide any direction about whether to keep or cancel next week appointment. I think that that is best left up to your current gastroenterologist/hepatologist and the Mayo doctor to decide.

Lisa, keep in touch.

Prayers and hugs are attached to this message!
Rosemary

@techi Lisa, your new doctor sounds great. Happy that you have found a “keeper”. I wish I could! I guess you have to decide which doctor you are more comfortable with. I don’t remember where you live but around here (Manchester NH vicinity) I no longer feel comfortable with the level of expertise of the local doctors and Boston is about 55 miles down the road. For me, it’s worth it to make that drive.
Good luck with your decision and with your diagnosis.
JK

I was suppose to go this weekend but my husband said if we are only going for a consultation it doesn't make sense to go right now. I texted the vascular department to find out was it only a consultation and the nurse said yes, so we said we would wait to see what this new doctor says so after l cancelled everything l looked on the doctors notes and it said procedure so l wish she would have said that but then l thought about it and l said she is only reading what's on the computer.so l have another appointment setup for Dec 28th if it's not snowing. And if this doctor here doesn't want to do the procedure then l will definitely have it done at the Mayo clinic. I want to trust him but l am afraid after they did it wrong the first time but he reassured me he would do it himself so it sounds reassuring. So he's waiting to get all the film's and he should get them by next week and l will know the following week. So l will keep you posted. Have a Happy Thanksgiving!!!