Liver transplant - Let's support each other

Thank u for ur kind words once again. Well, 2 things come to mind that I need from the doctor. One,what has happened to my eating. I’m never hungry and always nauseated. I eat about !00-max 500 calories a day. I can’t stop the weight loss. I feel like I’m disappearing! No doctor has helped with this. Oh,I has a colonoscopy 2 weeks ago. He said my nausea could be from excessive scar tissue. He called yesterday and said he needed another test done on me. He said he needs to investigate my stomach.(I also need someone to go and listen with me cause I forget or don’t understand. He already did an endoscope where they put a t.v. down my essopegus. Spelled wrong!. Anyway,didn’t that test check out the stomach already. I’m not sure what the test is called but I’m sure I will get the info soon. The second thing is I want them to run tests on my memory! Somehow,I don’t know how,I truly believe I’m suffering from permanent brain damage due to the HE. We will see what happens on the 26th when I see my liver doctor. I don’t even know how often I should have my blood drawn. I go 6-7 months without testing and no one has told me otherwise. They suck at following up. This appointment is with the liver team at University. After this check up I might just switch to Hopkins. Can u think of anything else I should tell them or ask them?

I was treated at the University of Maryland. That’s where our shock trauma is located. I also had the opportunity to go to John Hopkins. Most people out of state have heard of Hopkins. Have u? My post treatment was great the first 8 months maybe. Then it went to hell.I never hardly hear from them. I do have an appointment with the liver people on November 26th. Wonder if they will say or do anything about what’s happening to me. I doubt it highly. Will let u know!

I am disabled now because i had 4 back surgeries .i have not had a transplant yet. I'm on the waiting list

@rowdyramsey Of course you can go Hopkins. Patients often forget, they are the consumer. The doctors and hospitals work for you, they get paid by the patient or the patient's insurance.
Please call their transplant department and tell them you are post-transplant and need a second opinion. When you are able to get in there, please post and let us know what they have to say.
JK

I have not tried Hopkins. I didn’t know I could just switch like that. I’m post transplant of 4 and a half yrs. Can I do that? Just switch? I’d love to! Everything you say about being tired sounds normal to me. Everyday of my life I struggle with having no energy. I can’t stand even getting up to go to the bathroom. It gets that bad sometimes. Takes me hours in the morning to get ready for the day. I’m only 51 and I hate it! If I didn’t take meds to get me going in the morning,I’d never leave the house! The medicine gives me energy and wakes my body up enough to get threw the day. So,fatige I do understand. I think that’s spelled wrong.sorry!

I do. They let me take breaks when i want and sometimes i go in the bosses office and play cribbage while i rest.... I leave if i get to tired and nap at times in the lunch room

Regarding fatigue prior to transplant....I got to the point where I got to the kitchen to do household chores and needed a nap afterwards. I was still able to get to the grocery store but would only walk through the produce isle since walking around the entire store was a challenge due to terrible cramping.

Post liver transplant my fatigue and leg pain vanished. The other day I went for a 5 mile walk and wasn’t even tired. I still cannot believe it and am just very grateful to all the amazing doctors out there.

Good article, @rosemarya Thanks for the link. I do have fatigue pretty much always. I attribute it to inadequate sleep since I get up so many times during the night. My husband thinks it's too much exercise but I think I am more tired when I don't get exercise. I mentioned to my PCP not long ago that I was tired all the time and frequently took a nap in the afternoon. His response was "what's wrong with that?".
Prior to transplant I definitely needed naps. At one point it was so bad I would have to stop and take a break on my way up the stairs and then I discovered that was due to my hemoglobin and hematocrit counts being extremely low, and I had gotten somewhat anemic. I know I was extremely tired initially following transplant too. I think, for me anyway, that anytime my body is recuperating or fighting something off, I do get extremely tired. My recent fracture left me tired a lot.
I went to my club this morning and did about an hour and 15 minutes in the water and right now I am fighting off the desire to go upstairs and take a nap.

@rowdyramsey Johns Hopkins is right up there with Mayo and Mass General in being well known. I believe it, along with those two and Cleveland Clinic, is one of the top four hospitals in the country. Have you gone there? If you are not satisfied with your care at U Maryland I would definitely advise you to go there for a consult. Your problems are somewhat unique and as non-medical people, we really cannot advise you beyond that suggestion to get another opinion. I hope that when you have your appointment on the 26th it will be fruitful.
JK