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

Good news, @lynjoy2. Thank goodness for smart, caring daughters. 🙂

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.

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.

Rosemary is absolutely correct, especially about taking an extra set of ears to all appointments. The info can be a bit overwhelming.

@rosemarya, great post full of very helpful information!

@lynjoy2, it's so good that you are asking these questions now. I had a kidney transplant, and writing down questions for the transplant team in advance was helpful for me. I found that I never would have remembered all that I wanted to ask when I got to the actual appointments if I hadn't had them written out already. And although I listened very carefully to everything that was said to me at my appointments, and I was certain that I had absorbed it all, I found out that I actually hadn't absorbed it all. It seemed like every day my support person was telling me (or reminding me) about something that I was told during the appointments that I couldn't for the life of me remember hearing. So an extra set of ears was definitely helpful for me. Wishing you all the best!

I’m not sure. I know I’m seeing a liver specialist that does do transplants.

@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, 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?

I am not sure if it will affect your diabetes, are you already taking Prednisolone as that is the cause of my diabetes.
I appreciate your sincerity regarding my depression, I have tried every anti-depressant in the book and suffer most of the negative side effects. I have recently commenced medicinal cannabis however, it is being done carefully due to the fact anti-rejection medication clashes with it. It has proven to be beneficial but is a hard sell with the transplant doctors.

I am already a type 2 diabetic. Does that affect anything? I’m trying really hard to stay positive at least until I see the Dr. I feel sad you are so depressed. I suffer from depression too. Thankfully I have a great psychiatrist who has me on medication that helps.
Take care and I wish you the best.