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

Posted by mylifebe4u @mylifebe4u, Nov 7, 2022

Hello - This is my first time to do this; however, I'm looking for some possible advice. I am 54 and have always been very healthy. I started feeling bad back at the end of May when I decided to go to an Urgent Care center to be looked at. They took blood and when I received the results, it said that my Liver levels were in critical state and to go see a Dr. I did. They took more blood, did an Ultra Sound (which was normal), did a CT scan and did a Biopsy. The results: Stage 4 cirrhosis of the Liver. They have no explanation as to how I got it. I don't drink, it's not hereditary and I'm not over weight. It's now November. They referred me down to a larger University Hospital to see a better specialist; however, I cannot get in until Dec. 8th! I am scared! How long can I last waiting to be seen? What should I do in the mean time? I did some reading and I have cut almost everything out of my diet and with that, I am feeling a whole lot better but I know I still need a Transplant and need to get in. I'm (and my husband & family) are going crazy waiting. Would really appreciate and and all help. Thank you!

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I just had an MRI ELASTOGRAPHY and it showed stage 4 Fibrosis. Dr's PA called and said you need to see Hepatologist. The Hepatologist was away and I am scared also. I read this is a terminal illness. I live in NY. I have reached out to another hospital and the earliest date is May 26th. I am also besides myself. I have several autoimmune disorders, GI, and Neurological. I had my gallbladder removed and I read this can cause scarring of the liver. I also wrote to the Mayo Clinic in Florida to see if they can help. Awaiting a call back. I have terrible left sided pain. My mom died of Colin Cancer. I'm really scared. Try and see if any other good hospital can rake you. My liver enzymes have always been slightly high. Prior CT scan 2017 showed possible Chirrosis, but said to correlate with liver enzymes. My liver should have been checked yearly This is a silent disease. I'll pray for you

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@firecat

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

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Did you need a transplant. I am so scared, as I am newly diagnosed. I just pray

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@guillermos

I am sorry about your health. Isuffered overnight a collapse (vomiting blood ) that in the middle of COVID put me in the ER. Very similar to ur problem. I went immediately to the best local hospital who detected and knew my problem. Medicine kept me alive but I was immediately included in the liver recipient list. Was called 4 times but only the last qualified me to received a transplant. 6 hrs operation and so far the liver is improving with my organs -no rejection- the recovery has been hard for me, 5 mo. And going once a week for blood ck, that was easy but I developed strong tremors that force me back in ER where I am now… if you have strong wish to live, do 2 thing, get a great doctor to give you medicine to “keep u alive n out of complications, 2 ask to be included in the National registration of liver recipients…. I truly hope u have a good insurance because gets expensive. Hugs going your way. Namaste

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Who do you ask to be included in the National registration of liver recipients?

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@henrydeboer

Im just about to start. I will leave some very caring doctors in New York to move to Florida to the mayo clinic. In hopes of getting on a liver donor list. my meld score is approx 16 (done by my wife) Don't know what to expect. Keep you all posted.

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I live in NY. Did you try NY Presbyterian Hospital or Mt. Sinai? I am also trying to book an appointment in Florida, not sure if I can move, but I would certainly try if the opportunity came my way. I wish you the best

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I have congenital hepatic fibrosis. This disease was diagnosed 15 years ago, and has led to many different procedures such as TIPS and emergency room visits with bacteria infections. I did at one time enjoy a glass of wine or a cold beer after working in the yard, but obviously no longer. YOU are not alone in this journey. The mental aspect will wear on you or the fear of not knowing when the next emergency room visit will happen. I try and stay focused on the positives, thankful to be here and contributing to society -working, family, and friends. The transplant may some day come, although my MELD is low, but we must continue to be as healthy as possible-physically and mentally.

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@terriishere1

I just had an MRI ELASTOGRAPHY and it showed stage 4 Fibrosis. Dr's PA called and said you need to see Hepatologist. The Hepatologist was away and I am scared also. I read this is a terminal illness. I live in NY. I have reached out to another hospital and the earliest date is May 26th. I am also besides myself. I have several autoimmune disorders, GI, and Neurological. I had my gallbladder removed and I read this can cause scarring of the liver. I also wrote to the Mayo Clinic in Florida to see if they can help. Awaiting a call back. I have terrible left sided pain. My mom died of Colin Cancer. I'm really scared. Try and see if any other good hospital can rake you. My liver enzymes have always been slightly high. Prior CT scan 2017 showed possible Chirrosis, but said to correlate with liver enzymes. My liver should have been checked yearly This is a silent disease. I'll pray for you

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Call Mount Sinai, when we were looking at transplant hospitals in NY, they were able to accommodate us with an appointment quickly. We know someone who had a liver transplant there and they were very happy with the care they gave. We have a home in Florida and decided Mayo would be better for us. We waited about a month for our first appt.

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@nemo1

I was diagnosed stage 3 via the fibroscan and had MRI - no tumors found. Did upper endoscopy looking for ascites (sp). None found. I have a genetic disease called alpha 1 antitripsan deficiency that can cause liver and lung problems. If I’m deficient they can do infusions. I thought my life was about over. As it is now, I keep having to put out medically related “fires”. So in that respect I’ve been preoccupied. I have to find another liver doctor. I’m scared to learn what he will tell me. Its very frightening. With so many health issues, I’m not sure I’m gonna come out ahead of it all. I’m feeling my mortality. I’m sorry this isn’t a very helpful post. Just wanted to let you know you are not alone. Mine was found a couple of years ago.

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Please find a hepatologist who specifically specializes in liver cirrhosis and transplantation.

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@lcd

I have congenital hepatic fibrosis. This disease was diagnosed 15 years ago, and has led to many different procedures such as TIPS and emergency room visits with bacteria infections. I did at one time enjoy a glass of wine or a cold beer after working in the yard, but obviously no longer. YOU are not alone in this journey. The mental aspect will wear on you or the fear of not knowing when the next emergency room visit will happen. I try and stay focused on the positives, thankful to be here and contributing to society -working, family, and friends. The transplant may some day come, although my MELD is low, but we must continue to be as healthy as possible-physically and mentally.

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How was your TIPS procedure? Did it help you? My husband has cirrhosis and decompensated liver. His ascites is bad I has hoping a TIPS procedure would help him. The last draining they got 8 liters. Thank you

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@terriishere1

Did you need a transplant. I am so scared, as I am newly diagnosed. I just pray

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Yes, I received both a liver and kidney February 10th 2021, and a second kidney transplant on November 12th that same year. First kidney let me down. Don't be scared, let the lord take your hand, he will walk you through both the good and the bad. Just take a deep breath and be patient. I know it sounds easy, but remember I am talking from experience.
God bless you on your journey 🙏

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@crystalfaye

Please find a hepatologist who specifically specializes in liver cirrhosis and transplantation.

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I was referred. I have to call his office and make an appointment.

Thank you for your suggestion.

When does transplant come into the picture?

Thanks!

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