Gastroenterologist/ hepatologist

Hello Lisa, @techi

Here is some information from Mayo's website about the two different specialists you mentioned, https://www.mayoclinic.org/departments-centers/gastroenterology-hepatology. I am also going to invite @contentandwell and @rosemarya as they have posted about high ammonia levels and also had liver problems. They might be able to share about their situations.

Teresa

@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

Thanks, @contentandwell, I knew that you were highly experienced in the matter of high ammonia levels and you could answer the question well. How is your knee surgery healing?

Teresa

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.

@hopeful33250 Teresa, my knee surgery is not doing well at all. I am in incredible pain 24/7. I get some relief from taking the narcotic but I do not want to become dependent on them so I put off until the pain is unbearable. I have two different types, one is obviously not as much of a threat when it comes to addiction because they can FAX the prescription to the pharmacy. The other needs a paper scrip that they send to me to get filled. It’s that one that I really hold off on. I managed to get through to about 3:30 today before I took it. It really does help to dull the pain. It is wearing off now but my goal is if to get through the rest of the night without taking another. My PT felt my physical progress was pretty good but he was concerned about my level of pain. I’ve had him two times before so he knows I am not a wimp and usually very resilient. I think they are concerned at the ortho’s office too since they booked me into Thursday. I can’t drive until I am off the narcotics but I have no desire to go out of the house or anything. If I don’t keep my leg up it hurts more. The pain has taken my appetite away so I am losing weight too, more than I want to at this point.
I will let you know how things turn out after I see the doctor. I wish I could see him before then but he’s out of the country. I know I am not going to be in good shape for my daughter’s wedding ceremony this month and her reception next month. I am really upset at myself about that. If I had any indication that I might not be I would have put the surgery off but they assured me that by then I would be great.
JK

@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

@contentandwell, I'm so sorry to hear about your knee pain. I hope you can make it to your daughter's wedding and reception. Is it possible that taking the pain medications on a regular basis, keeping a constant level in your system, will allow your pain to be relieved enough that you can attend the wedding and enjoy this special time? I'm sure you can withdraw when the reception is over. Just a thought. I know that when the pain is unbearable before you take the medications, it is more difficult to get it under control.

I certainly hope they figure out what is causing this level of pain. I appreciate all the responses you give people on various Connect areas. Your experiences are so very helpful. Thanks, Gail B

@contentandwell

I am so sorry that you are having so much pain. As I recall, you had knee surgery previously and you did OK. I hope that the doctor is able to come up with a reason for the pain and plan to take care of it before your daughter's wedding.

Take it easy on yourself - there is no way you could have known that is experience would be so difficult to recover from.

Praying for you and hoping for the best!

Teresa

I concur with gailb; taking your pain medicine when it has reached an unbearable level makes it much less effective. I have had chronic pancreatitis for 11 years and the primary symptom is excruciating pain. I do best when I take an extended release narcotic, so there is always a little in my system and then I have some fast acting for breakthrough pain. The level of my opiate usage has fluctuated from moderately high levels to almost none in reaction to my pancreas flares. I have read in various studies and been told by docs that if I am only taking what is necessary for my pain and not for any kind of euphoria, then you are not experiencing addiction. Dependence is a different matter and that is when your body gets used to having the drug and if you stop, you will have withdrawal symptoms. I can tell you they are not much fun, but with support and medical guidance, it can be done with minimal problems. Happens to me every time I move lower on my narcotics, but again, it is manageable and I have an addictive personality or genetic predisposition.

@contentandwell, I am sorry to learn that you are experiencing this sort of pain. I hope that the issue can be resolved for you.
Are you keeping your Transplant team informed of this situation? If you have not done so, I encourage you to do it. They need to know what is going on so they can an eye on that beautiful liver.
Rosemary