Cirrhosis of the Liver: What to expect when waiting for a transplant?

Hello, @mylifebe4u, and Welcome to Connect. You are to be commended for your decision to go the the Urgent Care and to follow-up with the doctor afterwards. I am really happy to see that you will now be going for an appointment with a specialist at a University Hospital where you can get next level of care.
I know that you are scared and anxious as you await the Dec appointment, but I can assure you that you will be amazed at the amount of knowledge and information that a specialist will be able to share with you. My advice: Take your husband with you. Take notes. Prepare a list of questions that you and he want to ask.
You are eager for a diagnosis or cause, but it might take a while and require more tests.
When I was in the process of diagnosis, and during my time with a progressive liver disease I was instructed to do 3 basic things: Maintain a healthy and active life style; No over counter medicines or herbs/supplements unless approved by doctor; No alcohol. It looks like you are already working on this!

You have one month until your appointment, so how are you feeling? Will you have to travel a distance for the appointment? Has the doctor office sent any kind of agenda for the appointment, any labs, tests, consults?

Wow! I'm sure that was an immediate change of life moment. I know exactly how you feel, I have been there in 2020. I had severe cirrhosis that affected my kidneys as well. My GI doctor even told my wife there was nothing more she could do for me and I could go anytime. She then referred me to UW hospital for a multiple organ transplant if I lived that long, well obviously I did and I did! There will be many tests ahead for you, but keep the faith that God will be your consulting physician, and I'm sure you will be just fine. Do as the doctors instruct you and trust that they want you well. That's what they do for a living.
Calm down, it might sound easy to say but it will make the process easier to accept.
God be with you

Hello , I have been diagnosed with liver cirrhosis in June, 2021. In August , this year I was told that my cirrhosis has progressed to a stage 4 , but my #s are too low to be added to the transplant waiting list . In the meantime I have developed a innguinal hernia on my left side . I have seen a general surgeon at end of June , 2022 . I was told that it cannot be operated on because of my liver condition . Since June , 2022 the hernia has grown to the size of a mini football . Now it affects other functions . I am being told that there is nothing else that could be done. I am also going to a large university hospital in my home state . I have followed my doctors advice in all aspects of life . My next hepatologist /liver specialist appointment is @ the end of March , 2023 . I'm affraid I will not make it to that appointment . Any advice ? Thank you , Chris

@cs1964, I want to welcome you to Connect. As I understand your message, you were diagnosed in 2021, and now are suffering with both cirrhosis and a large inoperable hernia.

Considering that it is now November, and your appointment is not until March, I advise you to Contact the Hepatologist/liver specialist now, and not wait until March. It is important that the liver specialist is kept informed of any changes in your condition. Does he know of your current status?

Here is a discussion where you will find other liver patients who have discussed their hernia experiences.
Incisional hernia after transplant: Anyone else?
https://connect.mayoclinic.org/discussion/incisional-hernia/
Chris, Please contact your liver specialist, do not take the risk of waiting too long. Let me know what you find out.

Good morning , Rosemary and thank you for reply and advice . My liver specialist is aware of all of my additional health conditions . As I have mentioned I have most all my procedures done at the same major university hospital in my area and all of my results are listed in a chart that is associated with this medical center . Well, two weeks ago I was given a 3 to 6 months timeframe by my family doctor . I am 59 YO and not ready to give up , but given the choices I have , I wonder if I should still be fighting . I do want to thank you for your advice and words of encouragement .

I just had scopes done ( Endo & Colon). They did find grade 1 Varces in my Esophagus and Portal Hypertension. They are starting on a Beta Blocker.

I went through the same thing since 2014 when I was diagnosed with Cirrhosis, the causes are basically due to Alcohol and fatty liver. In my case, it took 6 years until my transplant May 14-2020, that gives you an idea of how long you can live with Cirrhosis, do not be afraid, follow the instructions, eat well and do a lot of exercise with your legs and arms, you will need them having it very strong helps after the transplant. I also have Varices Esophagus and Portal I use Nadolol a beta blocker if you need more info and support contact me through this support group

Call Mayo clinic - there are 3 in the US (AZ, FL, MN). There may be more possibilities for you.
October 21, 2021 my liver enzymes were tested and the next morning I got a call that my liver enzymes were way off the chart high and I was to see a gall bladder surgeon in 1 week. The surgeon asked for an MRI. October 26 I got a call from the gall bladder surgeon that I had bile duct cancer and I was to see the head surgeon at the U of AZ Cancer Center. November 2 she told me it looked like inoperable bile duct cancer and that I have "2 months maybe 2 years to live and radiation with chemo was my only path until my body couldn't take it any more". The surgeon also said "I was too old for Mayo to consider me as a transplant candidate." My friends said Mayo just needs to know how full of life I am. The diagnosis was confirmed by November 12 after an endoscopic imaging.
Unbeknownst to me a friend who works with the medical profession and my general practioner's physician assistant had contacted Mayo Clinic. So when I called Mayo they said I was already registered to be considerd for a transplant. Though cancer cells were never confirmed the MRIs and other images got me a December 17 appointment at Mayo.
My life went into a rapid pace. About 2 weeks of interviews, testing and imaging I was reviewed by the transplant board. January 3 2022 my case was reviewed. January 5th I was told I was on transplant list as inactive until I finished radiation and chemo (Jan 29 to Feb 28); a laporotomy to test my nodes to be sure no cancer had spread (April 1). April 17 I was told I was active on the transplant list and my MELD score jumped from a level 6 to 26. The nurse said I "will hear soon from the donor team". I thought she meant a few weeks or months. Less than 48 hours later I was contacted that they had a liver from a brain dead patient and that the family was letting their loved one pass the next day. I was in Mayo hospital that night and had a new liver the next morning.
It's worth the call to Mayo. Be ready to have medical records especially images sent to them. It is amazing how asking even though you may think the answer will be no, how many times the answer surprises you with a yes. I wish you the best whatever the answer. Barbara

Wow! That is quite a miraculous journey. Mayo Clinic is an amazing place. I also have received such superb care from my team in Jacksonville. I try to let them know every time I go for check ups how much they all mean to their patients. Congratulations on your new beginning. Thank you for sharing your experience and encouraging others by doing so.

That's terrible, so sorry to hear you are going thru that. Without and advice from my Dr.s, I looked into it and decided to completely change what I eat. I only eat fruit, veggies, fish, chicken and a few nuts. I have limited my dairy and I eat plain oats with honey in it. Every since I have cut out all bad sugars, sodium, and any and all processed foods, I feel 100% better. I am hoping this is enough to stop the progression long enough for me to get to the Specialist at the University. I was just put on a Beta Blocker, this should also help. I wish you the best.