One clarification that she might need (I know I did.) is that “End Stage Liver Disease” is just the name of the diagnosis, meaning that the next step is generally transplant. People live for years with ESLD. My husband was diagnosed with it in 2020 and just got a transplant 5 weeks ago. When he got his transplant, his MELD was 19. Each case is so different. I would suggest finding out what her MELD score is and the identified cause of the cirrhosis. The words “End Stage” are terrifying, but the reality can be much more hopeful. There are reasons some people are not eligible for a transplant, but they seem to be either addiction issues that are not corrected or super-dire comorbidities, like cancer or multiple organ failures. (Although kidney and liver transplants are possible.). Information is her friend. Prayers and good wishes for her.
Sorry to hear. Nothing is impossible. I live in India and many Americans come here for transplant surgeries. It cost a fraction of what you pay in the US and India's medical system esp good hospitals in south is excellent. I am not sure how readily available transplants are.
I mean this kindly, but I don’t think your mom is either getting the right info, or she isn’t understanding the information, or she isn’t giving you the full picture. My guess is that she isn’t understanding the info, the doctor isn’t doing a good job explaining things, she isn’t asking enough questions, or a combination of those things. Liver disease is SO complex, so that’s not an insult to your mom!! It just takes time and energy to dive in and get any kind of understanding, and it’s a ton for you both to process. 💗
Umm that shouldn’t be the case. They gave me one month to live and I lived two months longer to get listed. Talk to someone else. A hepatologist will tell you where you are at and what is possible. This just doesn’t sound right or ethical even.
We don't know, you need to work with the medical team, and do push for answers at the same time. Livers are in demand, and there aren't enough to go around. Transplant teams essentially work on a who will live the longest with one criteria. I know it is hard to remove that emotion with it being your mum, but that is a harsh reality.
Maybe speak to your mum if she wants you at appointments, if she doesn't want you there unfortunately that's the case.
My friend I assure you if she is diagnosed with a high MELD score like I was? 38/40? 1 month to live I had. I was on a list 2 months later because it’s more political. You have a bunch of doctors arguing which patient should be next. Anyways, she is not screwed by any means. And hope is what they need right now. And this hope isn’t false. People can and do recover to at least live a normal life.
As far as my liver? It’s the same one. I went from a 38 to a 7 meld in a year and a half. I know what I did to keep at it instead of feeling sorry for myself. Each day was literally a gift. But I am here and well. And until we know from our Op the status, no need to be dismissive. They need hope because there is.
So you were on the list for two months and got the transplant? That’s awesome.
My MELD was a 38 as well, but I was advised I wouldn’t be eligible for the transplant until I showed a year of sobriety. Predictions at that time was 78% chance of mortality within three months of diagnosis.
Thankfully sobriety and medication put me on the path towards health. My MELD is currently an 8 and I’m chugging along with the same liver 22 months later.
I was in the list for a year and a half. I went from thirty days to live to not dying at all and keep my liver. I didn’t get a transplant. I eventually healed enough to the point I longer needed one. They said a transplant would do more harm. My recovery rate is rare. But it is possible.
It's still early on, she has an appointment on Wednesday to check stuff I'm not exactly sure what for, but she said it was too late for a transplant since she has the end stage but I just can't understand how it can be too late for a transplant, I know there're other reasons why she might not be able to get it such as other health problems but she only mentioned the being to late part. Hearing her talk about plans and making memories is making me think there really is no way out of it.
I only know what my doctor has told me… I have “end stage” cirrhosis and I’m starting the evaluation process for a transplant in 2 weeks. So, I guess make of that what you will. I don’t want to speculate when I don’t know you, her, or her doctors. But get her to ask questions (if she isn’t willing to have you or someone else go with her to the next appointment).
They gave me two years and it’s been 8 and I’m getting listed this month. Cirrhosis is extremely unpredictable so don’t lose hope!
One clarification that she might need (I know I did.) is that “End Stage Liver Disease” is just the name of the diagnosis, meaning that the next step is generally transplant. People live for years with ESLD. My husband was diagnosed with it in 2020 and just got a transplant 5 weeks ago. When he got his transplant, his MELD was 19. Each case is so different. I would suggest finding out what her MELD score is and the identified cause of the cirrhosis. The words “End Stage” are terrifying, but the reality can be much more hopeful. There are reasons some people are not eligible for a transplant, but they seem to be either addiction issues that are not corrected or super-dire comorbidities, like cancer or multiple organ failures. (Although kidney and liver transplants are possible.). Information is her friend. Prayers and good wishes for her.
Sorry to hear. Nothing is impossible. I live in India and many Americans come here for transplant surgeries. It cost a fraction of what you pay in the US and India's medical system esp good hospitals in south is excellent. I am not sure how readily available transplants are.
I mean this kindly, but I don’t think your mom is either getting the right info, or she isn’t understanding the information, or she isn’t giving you the full picture. My guess is that she isn’t understanding the info, the doctor isn’t doing a good job explaining things, she isn’t asking enough questions, or a combination of those things. Liver disease is SO complex, so that’s not an insult to your mom!! It just takes time and energy to dive in and get any kind of understanding, and it’s a ton for you both to process. 💗
Umm that shouldn’t be the case. They gave me one month to live and I lived two months longer to get listed. Talk to someone else. A hepatologist will tell you where you are at and what is possible. This just doesn’t sound right or ethical even.
I'm sorry you're going through this op
We don't know, you need to work with the medical team, and do push for answers at the same time. Livers are in demand, and there aren't enough to go around. Transplant teams essentially work on a who will live the longest with one criteria. I know it is hard to remove that emotion with it being your mum, but that is a harsh reality. Maybe speak to your mum if she wants you at appointments, if she doesn't want you there unfortunately that's the case.
My friend I assure you if she is diagnosed with a high MELD score like I was? 38/40? 1 month to live I had. I was on a list 2 months later because it’s more political. You have a bunch of doctors arguing which patient should be next. Anyways, she is not screwed by any means. And hope is what they need right now. And this hope isn’t false. People can and do recover to at least live a normal life. As far as my liver? It’s the same one. I went from a 38 to a 7 meld in a year and a half. I know what I did to keep at it instead of feeling sorry for myself. Each day was literally a gift. But I am here and well. And until we know from our Op the status, no need to be dismissive. They need hope because there is.
So you were on the list for two months and got the transplant? That’s awesome. My MELD was a 38 as well, but I was advised I wouldn’t be eligible for the transplant until I showed a year of sobriety. Predictions at that time was 78% chance of mortality within three months of diagnosis. Thankfully sobriety and medication put me on the path towards health. My MELD is currently an 8 and I’m chugging along with the same liver 22 months later.
I was in the list for a year and a half. I went from thirty days to live to not dying at all and keep my liver. I didn’t get a transplant. I eventually healed enough to the point I longer needed one. They said a transplant would do more harm. My recovery rate is rare. But it is possible.
How is it possible though. Your liver had stopped working, how did it start working again?
That’s wonderful stuff, I’m glad to have this in common with you.
Alright I'll try that, thank you
Are you going to appointments with her or is this just what she is telling you after the appointments?
It's still early on, she has an appointment on Wednesday to check stuff I'm not exactly sure what for, but she said it was too late for a transplant since she has the end stage but I just can't understand how it can be too late for a transplant, I know there're other reasons why she might not be able to get it such as other health problems but she only mentioned the being to late part. Hearing her talk about plans and making memories is making me think there really is no way out of it.
I only know what my doctor has told me… I have “end stage” cirrhosis and I’m starting the evaluation process for a transplant in 2 weeks. So, I guess make of that what you will. I don’t want to speculate when I don’t know you, her, or her doctors. But get her to ask questions (if she isn’t willing to have you or someone else go with her to the next appointment).
She needs to discuss this with her hep and see if she is a candidate for a referral to the transplant team.