Liver transplant - Let's support each other

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

Then I will do it! I will let you know what happens! Thanks

Thank you for updating me. Let me know if u have questions or concerns. Now that I know you have not had the transplant,your messages make a whole lot more sense!

@rowdyramsey, I will be thinking about you next week when you meet with the liver people. Actually, I am thinking about you now as I imagine that you are anxiously awaiting and planning for the appointment.

-Do you have someone who can go with you to the appointment? I find that I need an extra set of ears to help me remember and understand what the doctor says.
-Do you have any questions that you want to ask? It helps me to make a written list ahead of time, and then I list them in the order of importance to me, just in case time runs out.
-In your response you mentioned that you "wonder if they will say or do anything about what’s happening to me". I would not leave this important information to chance. Please take the information with you, because they need this history amd medications involved. in order to better address your current liver health.

What questions do you have as you prepare? How can I and the members of this group help you to prepare for this visit?

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?

@rowdyramsey You have come up with some great things to ask. May I suggest you write all this down, don't rely on your memory! I know for me, I get wrapped up in the appt and then forget to address something, or don't hear what dr is saying. And write down their answers to you. Be sure you can take someone with you so it will help you get all the information exchanged. Can you handle something like Ensure products, that will give you some nutrition? We will be waiting to hear how it goes for you next week.
Ginger

Thank you so much for responding. I will be taking my husband of 20 yrs with me to the docs. I also need to write it down like you suggested . I will keep posting for advise and fellowship. The fellowship is crucial! Thanks to all who contribute!

Make that list!!! Take your husband and review the questions with him beforehand. His input is important too! As soon as your appt is finished, sit down and go over the list and the answers with your husband.
Get your bloodwork done whenever YOU want. Build a relationship with your PCP and share your concerns. Those blood test results help your peace of mind and give you quick info on any changes. Your PCP can then share with your liver specialists.
You are in charge of YOUR life!
If you have opportunity....go to Hopkins!!
Good luck!

That’s exactly what I need. To have a relationship with my PCP. I’ve never had that! I’m leaning more towards Hopkins everyday. Besides,they can help with my eating disorder among other things. Hopkins would definitely be able to help with that. Their known through out the world for their eating disorder unit! Yes,Hopkins sounds better and better all the time! Thanks for helping me realize this.I love being able to share with you and the others. I have learned a lot and actually it’s starting to feel like fellowship. Something I found empty in life is being filled by being apart of this group. Thanks to all❤️