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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@missi

First let me see thank you so much for sharing and for validating. I am so grateful that I found you all. How do I get screened for cancer?

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I found Mayo Jacksonville doing online research, sent fax records to get an appointment. It took a few months to get in, but I am so glad I did. My doc does regular screenings for liver cancer and blood work as well as other tests. When I first got there I was shocked to find out I was a transplant candidate. Three years later, I am on the transplant list and waiting to see what my doctors say about going active. I did have a tumor that was treated with ablation that reached the 2cm mark. They watched that until it got to that size, then treated so I would qualify for exception points. Too much information here. You are early yet. Try to get to a reputable transplant center of your choice, get an appointment, and your journey will take its own path. Everyone is different. Best of luck to you.

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@missi

I am not feeling ill at all from my liver disease, yet and so thankful. I'm so sorry that you've had to have a tumor removed. How long have you been on the waiting list? Am I supposed to get myself on the waiting list ? Thank you for being so kind and responding to me. It really is so comforting knowing that there are others out there that understand because it really feels a bit lonely. I guess what I mean in that is that no one I have met can understand enough to validate. And being able to talk with other people is so validating and comforting. Thank you so much.

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I know the feeling. You are in good company here. So glad my experience can help someone else. I have been on the list with exception points since March 2023. I am inactive right now waiting for the best time to go active based on my doctors’ advice.

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Hello

I am still alive after a liver transplant and have been for the past 4 1/2 years.
Liver diseases do not have any symptoms and appear unexpectedly.
In my instance, it appeared during my annual physical exam, and the timing was perfect for the diagnosis.
When a defect is discovered, the only option according to hospital doctors is a transplant.
During the early stages of cirrhosis, one may feel OK, but as time passes, the face may become jaundiced and fluid may accumulate in the stomach.
This spells disaster. There is no other option but to travel to a facility that does liver transplants and begin the treatment process.
A transplant procedure could be difficult.
Doctors decide when it is appropriate to do a transplant.
They must also find someone with the appropriate blood group, weight, and match for the transplant to be effective.
Assuming your Meld scores are in the range of 28, this will take at least 8 months after you are placed on the waiting list.
So, once you realize you need assistance, don't lose time.
Please go to the hospital right away and begin your therapy.
You only get one chance at life; with a donated liver, you will have two.
God Bless

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