What should I know?

Posted by lynjoy2 @lynjoy2, 2 days ago

I was just recently diagnosed with stage 4 cirrhosis of the liver non alcoholic. I see the liver specialist on March 27th. What should I know? What questions should I ask this doctor?

Interested in more discussions like this? Go to the Transplants Support Group.

The fact you are considering or getting a liver transplant is much better than getting a lung transplant with less complications and a better prognosis. Ask what medications you will be required to take for the rest of your life and their side effects. Will you be a diabetic (Type 2)? Ask for an outlook on the likelihood of it occurring again.
After you get it try and stay positive and avoid slipping into depression, I did (lung transplant) and it has consumed my thoughts rather than enjoying my second chance.

REPLY

@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?

REPLY

Rosemary,
I guess my biggest fear is having to have a transplant and all that entails.
Also, will this affect my work, I am a teacher.

REPLY
@melbourneaussie69

The fact you are considering or getting a liver transplant is much better than getting a lung transplant with less complications and a better prognosis. Ask what medications you will be required to take for the rest of your life and their side effects. Will you be a diabetic (Type 2)? Ask for an outlook on the likelihood of it occurring again.
After you get it try and stay positive and avoid slipping into depression, I did (lung transplant) and it has consumed my thoughts rather than enjoying my second chance.

Jump to this post

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.

REPLY

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.

REPLY

@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
.
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
.
lynjoy2, Will your appointment be with a specialist at a transplant center?

REPLY
@melbourneaussie69

The fact you are considering or getting a liver transplant is much better than getting a lung transplant with less complications and a better prognosis. Ask what medications you will be required to take for the rest of your life and their side effects. Will you be a diabetic (Type 2)? Ask for an outlook on the likelihood of it occurring again.
After you get it try and stay positive and avoid slipping into depression, I did (lung transplant) and it has consumed my thoughts rather than enjoying my second chance.

Jump to this post

@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?

REPLY
Please sign in or register to post a reply.