Meeting the liver specialist: What should I know or ask?

I also had cirrhosis of the liver from an autoimmune disease. I was diagnosed when I was 16. I had my liver transplant when I was 35. I am now 38 years post transplant. It is a lifetime treatment. I can truth say I feel very good. I think my doctors are even a little confused. The 1st year is the hardest because of higher doses of meds. Eventually you end up getting what you need and things get a lot better. Of course, in 38 years I am sure they have improved a lot of things. Just tell the doctors how you feel and if you feel you are going downhill. Best of luck to you.

Hi Rosemary,
Prior to receiving my transplant, I did have a history of depression. I lost my first wife at 32 years old to cancer, leaving me with three children 4 years old and younger. I chose to share custody with my parents as I was not coping well as we met at 14 years old. I managed to pick myself up and remarry and have two more children. Due to the fact it had been six years since my parents took custody of my first three children, we decided to leave them in the same school with their established friends and life. This always left me feeling an underlying guilt, but we believed it was best. Prior to the transplant I never had diabetes.
My transplant at this stage is doing well, I am seeing the lung transplant team every three months. I am not able to do everything I did prior to my transplant but have increased my capabilities more and more as time goes on. Ironically my oldest son is getting married today, something I would not have been there to enjoy if I had not had a transplant. One of the biggest issues I had to accept was that unlike a solid organ transplant, lung transplant recipients have a mortality rate much lower. In the first five years, fifty per cent of patients die. At ten years 87% die. But I do know of one man who is at 30 years and going strong, and others at 15 years. Initially this played on my mind constantly, but when you are over 50 years old and look around many don't even make it that far. I am at peace with the prospect of dying which essentially eliminates a major factor in my depression. I am finding things I can do as opposed to trying to do thing I can no longer do.
I appreciate you taking the time to respond to my comments, if I can help save one person, I have succeeded in my reason for contributing to the forum. It also helps me look at things from a different perspective and realise how lucky I am.

I saw the liver specialist and it was good news! No transplant right now. I do have stage 4 liver cirrhosis non alcoholic but he also said I have stage 1 MASH. I’m still not sure what that means. He didn’t give me a MELD score but he did lots of blood work. Plus I have to have a MRI of my liver and a endoscopy. If everything comes out good, then I see him every 6 months. I see him in a month to go over all the test results. Thanks to everyone who answered my post. I went with questions and took my daughter, who is a nurse, with me. She took excellent notes for me. It helped to go back after the appointment and read her notes.

@melbourneaussie69, I am sorry to read that you are struggling to enjoy your second chance life. I am also aware that other transplant members have dealt with varying levels of depression post transplant. One thing that I don't know is whether the inclination to depression was present prior to the transplant. And the same thinking applies to diabetes, because I am just a patient with an organ transplant with no medical expertise.
I must commend you for your positive message to @lynjoy2 and all of our transplant members to "Try and stay positive." I believe that is the key to daily life and future living.

How is the transplanted lung doing? Are you still in contact with the transplant team? Are you able to, (in spite of your depression) able to return to any activities that you enjoy? What is a positive that you might look forward to today?

@lynjoy2, Welcome to Mayo Connect. I remember being referred to a specialist when I was beginning my liver journey. And I remember how impressed I was with the amount of knowledge he had about the liver! I also entered the appointment with a list of questions for him, and want to suggest that you begin to write down every question that pops into your head, or anything that concerns you. Don't worry about the length - you can edit it on the 26th.
As a patient, you don't have to know anything - just be prepared to listen and learn. Take someone with you, if possible, as an extra set of ears. You will likely be nervous and that makes it hare to really concentrate or remember. The doctor might want labs drawn in advance of the visit, or want updates to your medical history and medications. But he will let you know in advance.

I received a liver and kidney transplant 16 years ago due to a progressive liver disease. The most important thing that I learned is that any question that I had was always a good one to ask my doctor. So to begin this conversation with you, let me ask you a question to help get your list started: What is your biggest fear or concern related to your liver right now?

@lynjoy2, Welcome to Mayo Connect. I remember being referred to a specialist when I was beginning my liver journey. And I remember how impressed I was with the amount of knowledge he had about the liver! I also entered the appointment with a list of questions for him, and want to suggest that you begin to write down every question that pops into your head, or anything that concerns you. Don't worry about the length - you can edit it on the 26th.
As a patient, you don't have to know anything - just be prepared to listen and learn. Take someone with you, if possible, as an extra set of ears. You will likely be nervous and that makes it hare to really concentrate or remember. The doctor might want labs drawn in advance of the visit, or want updates to your medical history and medications. But he will let you know in advance.

I received a liver and kidney transplant 16 years ago due to a progressive liver disease. The most important thing that I learned is that any question that I had was always a good one to ask my doctor. So to begin this conversation with you, let me ask you a question to help get your list started: What is your biggest fear or concern related to your liver right now?

@lynjoy2, You won't believe this! I was out for the day with my husband and when when he parked the car, we both opened our doors art the same time - and a gust of wind blew some of my note paper out the door. It went faster than I could run, and it was the sheet of paper with MY questions for the new doctor that I have an appointment with on Monday! I have to start over again. (I didn't make this up)

I used to teach. I was 59 when my disease advanced to needing a transplant. I transplanted at age 60, and made the decision to retire early. However I know of others who decided to go back to the classroom. One lady who lives in a neighboring school district returned to kindergarten classroom after her liver transplant and remained there until she retired at full age.

Your fears about a transplant are completely understandable. When I was on the UNOS list and waiting for my transplant, I was meeting with the transplant surgeon and said that I was really scared and didn't think that I could deal with the post surgery. The surgeon calmly replied that They would take care of everything, and that I just had to show up. Those words were true!

You can find some suggestions for questions in this link:
- Liver Disease
https://www.mayoclinic.org/diseases-conditions/liver-problems/diagnosis-treatment/drc-20374507
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I found this discussion where members have shared their experiences.
- Pre Liver Transplant and Nervous
https://connect.mayoclinic.org/discussion/prepost-liver-transplant/?pg=1#comment-798431
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lynjoy2, Will your appointment be with a specialist at a transplant center?