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Cirrhosis of the Liver: What to expect when waiting for a transplant?
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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My old pcp dropped the ball. With me I was having consistent elevated liver tests. Only when they were really high was I sent to liver doctor. I need a new one. My current pcp gave me a referral to go see him. I need to go. I hope it turns out okay with you.
For me TIPS was truly a life saver and has bought me more time before inevitable transplant. Specifically, I was having portal tension/pressure that would lead to my varicies in my esophagus to erupt. This internal bleeding would lead to many close calls in emergency room. I am fortunate not to have any complications with tips such as infections or having to get it opened up more in 10 years. Usually the surgeon will start with small bypass first and enlarge later if need be. Hope all goes well for your husband. 🙏
It truly depends on just how sick you are and it is of utmost importance to have a Gastroenterologist who will act quickly on your behalf and get you to a Hepatologist. Even better would be a Transplant Hepatologist at a Transplant Hospital.
All of this takes time and key is having great doctors who will be strong advocates for you. In my case I was exceptionally blessed and the process went very quickly. I had non alcohol cirrhosis which ultimately came from being a diabetic. I’m available to help. I’m not great at posting her but will do my best. There’s always talking on the phone if that works better for you.
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3 ReactionsThank you so much. I looked up the doc. He is a hepatologist who works with a transplant team. My pcp said he does not do colonoscopies like a gi does but I’m not really concerned about that right now.
I have a genetic disease that can cause liver and lung issues. I will call his office this week to schedule an appointment. For all I know It could take a month to get in to see him.
Thank you for your time. I appreciate it.
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1 ReactionThank you @crystalfaye
Because of your urging, i scheduled an appt with a hepatologist who specializes in both. It’s for August but at least I’m in. I have a cd of my MRI and just need a screen shot of the fibroscan report. She said I’m probably due for another fibroscan. So the appt is an hour. ☺️ 🙏🏻
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1 ReactionKeep calling for cancellations and let the receptionist know how you are so unsettled and need some answers.
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3 ReactionsHello this is Jackie. I had a liver transplant 10/20/20 at Mount Sinai in New York. I was diagnosed with cirrhosis in end of November 2019 Dr saw on MRI and a small tumor.she immediately sent me to new York. I was seen and
Diagnosed in January 2020. It was bad. I had two cancer tumors treated. No chemo.
Dr. In New York in January immediately put me on transplant list .had it October 2020. But.from January to October I had a lot of scary moments. Build up if ammonia in your brain and I was acting like I was drunk.thete are meds u can take to get rid of that. U need to see a liver specialist as soon as possible.
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3 ReactionsTo mylifebe4you. Get going on a hospital that can take u immediately.transplant 10/20/20 Mount Sinai in n.y. they were wonderful. Fabulous.smart doctors had a whole team taking care of me.social worker.nutrisionist.other doctors.was a god send. U have a long road to go. I also did not do drugs.no hepatitis.no abuse of liquor.no family member. Plz keep looking for someone to take u very soon.there are symptoms that can crop up before surgery and can dangerous .I feel for u.anything I can do let me know.
How long. Did you have to wait for a liver?
I was blessed. Only 3 weeks after making the list. I was helped by being hurt. OK, what is he talking about? The last major test to hurdle before transplant was a heart catherization. The cardiologist said that he needed to use contrast, which was hard on kidneys. My kidneys were in bad shape already on dialysis. Well, days after the procedure, my kidneys shut down. My meld score shot from 25 to 29 and 6 weeks later I received both liver and kidney in a 13.5 hour operation. So because of the catherization it mysteriously helped get transplanted sooner because of the elevated Meld score.
I was so blessed after a very rough road.
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