Doctors mistake watch out.

@adah, Ammonia on the brain can become very serious if not controlled with medications. Cleveland Clinic has posted on their website an excellent explanation about ammonia's affect on the brain in an article "Hepatic Encephalopathy". Most everyone with liver disease needs to read this article.

@techi, thank you for your post. Great information. Also, we can also attribute our ancestors living a lot longer than we do now due to living in an environment that wasn't polluted with toxic chemicals of all kinds among other things. And our minds can affect our bodies' wellness in a powerful way. It is good to strive to reach peace, joy and love in our lives which is medicine to our bodies. Be well, my friend!

@adah, here ya go: http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/hepatology/hepatic-encephalopathy/

@adah I used to be a companion to an elderly woman who had a liver problem that caused this type of ammonia problem that damaged her brain. She became an alcoholic later in life causing the liver problem. The result of the ammonia was she had no short term memory and was always lonely, and then she wanted to drink even more. I had to make sure she'd eaten enough for the day before she would have a drink, and I controlled how much she could have. If I wasn't doing that, she would drink until she passed out and never eat. She would visit me next door, then leave, and 10 minutes later she was back not remembering at all that we had visited, so that was a repeating pattern. That behavior caused a lot of interference in her family and I tried to distract her. She didn't need to drink at all if she had attention, but she couldn't remember any of it. She told me her long term memory stories about her life over and over, and I just pretended that I was hearing it for the first time.

Thanks

Hi, adah, Have you met, contentandwell? She has experienced hepatic encephopathy as a result of liver disease which elevated her amonia levels.
@contentandwell, I want to tag you to this conversation.

@adah @techi @jenniferhunger @rosemarya
Hi to all. I am so sorry to hear of the mistreatment some of you have had at the hands of doctors. I hope when that happens that you change doctors as soon as possible. I would not say I have been mistreated by uncaring doctors, but I have been misdiagnosed by a doctor who basically did not put enough effort into being a doctor. I changed as soon as I could find a good doctor who was accepting new patients.
I suffered from hepatic encephalopathy when I had cirrhosis, prior to my transplant. It is a terrible thing to suffer with. Cirrhosis, as I am sure most of you know, is not always caused by alcohol. It can be caused by hepatitis or fatty liver, and a few other things. Those are the three most common causes. Thankfully it does not cause permanent damage from everything I have been told and it did not with me. I am not sure of what the other causes of HE are. What do they think cause your HE episodes, Lisa?
My HE episodes were distinct, I did not have a constant fog as some do. Some of my episodes were mild. I was able to go to bed for a few hours and wake up fine. There were some more serious ones that put me in the hospital. One was serious enough that I was basically in a stupor.
The local hospital that I went to was not great at all so I can totally understand your problems with some hospitals. The treatment there by most of the nurses was deplorable. I have been in my transplant hospital, Massachusetts General, not only for my transplant but three other times. The nurses there were incredibly caring. I hope you can find a major medical center close to where you are. I would suspect that the care there would be very much better than the local hospitals you have referred to where your care was not the best. If you can find a "magnet hospital" they generally have the best nursing care.
If you have any questions about HE, please feel free to ask. I will answer whatever I can. I was on lactulose initially, then after going to a hepatologist she put me on xifaxan and I was able to go without lactulose for almost a year. Then I had another HE episode so I had to resume taking lactulose along with the xifaxan.
JK

@contentandwell JK, I'm sorry you were misdiagnosed too, but by sharing our stories, we teach others the importance of asking questions, learning as much as you can about your condition, and 2nd, 3rd, 4th opinions.... and firing a doctor who isn't helping you. That doesn't feel good, and you start over searching for help. Doctors don't always tell you everything they are thinking, and I always get my medical records from my visits and look up everything they write about me and I learn a lot. That can also tell you if they are venturing the wrong direction, and if they are not listening to the patient, how can a patient get the right care? It's all based of honest communication, and mistakes can be made so easily. Doctors are human and can be distracted or irritated and that affects how much they will understand from you the patient. I try to vet them as best I can by reading their research and I look for things like teaching at medical society conferences to find the leaders in the field.

I have been in the medical field all
my life and I truly believe a doctors job is very difficult. They see so many patients a day, and work at a very fast pace. I too have been undiagnosed with an auto-immune disease for 15 years, but with the help of my neurologist, endocrinologist at Mayo Clinic and my own research, I finally feel I have a great team! So never give up, just become part of your care team!

@57hypo I'm glad you advocated for yourself until you found a good doctor to help you, and it's no surprise to me that you found that at Mayo. I also joined my surgeon's team so to speak and did everything I could to guarantee the success of my recovery. That is exactly how I thought a bout it... that it was a team effort and we all needed each other to make it work.

I agree. Doctors have stressful jobs and that stress affects both the physician and the patient's care. I would not be able to face the trauma they see and work with in their jobs, and the sadness of loosing patients in spite of the best that medicine could offer, so we as patients need to keep that in perspective. They are human just like us. I always approach my physicians with gratitude and kindness, and I believe that this helps both of us. It helps me dissipate my worries, and my doctor knows I appreciate them and this leads to better care. I have found that by being genuinely kind to any of my doctors, that I really do get their focused attention, and I can relax and enjoy their company as well as have a productive appointment. It's amazing what kindness can do.

Here is a story about a surgeon that I didn't want to operate on me.

One of the surgeons I saw prior to coming to Mayo was very arrogant and would not spend more than 5 minutes with me. He looked at my MRI by himself before he came into the room, didn't review it with me, only did one test of my hand strength, and wouldn't answer my questions, and ran out. What he did accomplish in that 5 minutes was to present my situation as significant spinal cord compression that needed an urgent fix and he started some serious anxiety for me as a fearful patient. I had to talk to his PA to ask questions, and that was only after they have finished procedures for the day by phone, and it was apparent to me that the guy just wanted to go home for the day. When I went back for a follow up to go forward, I was having dizziness and leg pain. Only the PA saw me, then he disappeared, and came back to tell me that the doctor wanted me to go to a rehab specialist first, and resolve the leg pain, and after that, he could do my surgery. I had also requested to do a blood test for immune reactions to materials in implants, and they refused to authorize it, even though I would pay out of pocket. I scheduled the rehab appointment, but when I got there through some mistake, I didn't have an appointment. At that point, I gave up.

This surgeon owned his own surgery center with a group of doctors, and did multiple surgeries like what I needed a day ( 30 minute procedures) and there were no choices for the patient , except to do the surgery with the specific hardware and implant that he wanted to use the same on every patient. I knew that my leg pain was caused by the spine problem in my neck because it turned on, or turned off the pain when I turned my head. No one would listen to that. This doctor didn't recognize my symptoms and relate them to my condition. All the surgeons I saw before Mayo, missed the same thing and I found medical literature with cases similar to mine with these unusual symptoms. This surgeon constantly sent quality of life surveys to me that continued for 2 years. I would have explained that I'd resolved the problem and recovered, but his surveys were only multiple choice. I'm glad I wasn't a patient on his assembly line. From this, I learned what I didn't want or trust in a spine surgeon. I knew enough about it to ask intelligent questions, but they didn't care. I just don't think patients should be treated this way. I have to wonder if the limited time each patient gets is to try to maximize profits at his surgery center. It seems they want to rush you through surgery as long as there are no complicating factors.

So, for the very wonderful Mayo surgeon who did help me in a procedure that took an hour and a half (for his part) with a half hour prep time, I wrote a complimentary letter about him and my care to the CEO. I gave him a copy of that, and a copy of the CEOs personal letter back to me. I thanked him face to face for helping me right before we went into surgery, and because he was so kind and helped me overcome my fears about surgery, and because he saved my physical ability to work as an artist, I painted his portrait as a gift. I'd also explained in a letter I wrote to him why it was so important for me to do that, and I thanked him. He trusted me and posed for some photos at a followup, and from that, I painted his portrait. He absolutely loved the painting and now has it in his home to enjoy forever, and I have a doctor committed to my care for any further needs, and he gave me the choice not to have hardware or foreign materials placed on my spine. That's my story and you can find it on the Sharing Mayo Clinic blog in the link below. Now who would you pick if was your choice?
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/