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Mother In Law Prognosis
My mother in law, 63 yrs old, was diagnosed with cirrhosis of the liver back in Dec 2015, I believe. We knew she had Hep C for years prior, and she drank wine every night. She began to experience ascites and edema, which is what brought her into the doctor in the first place and they told her she had cirrhosis. Since then, it seems like it's been quite a decline. She was evaluated at a transplant center over a month ago. We still haven't heard back whether she is a candidate, but I don't think she will be. She has other health problems like COPD, RA, and just isn't an active, "healthy" person I guess. She did quit drinking though. I feel like she's in denial or is just putting on a brave face for us, but she seems to be down playing it and talks about it as if she has the flu that she just needs to get over. Meanwhile, I've watched her lose muscle mass. Her arms are thin and frail and her belly is huge. She's been on diuretics for years and they aren't doing anything for her. She's actually going to get drained for the first time this week. Her eyes are yellow, her skin looks almost grayish. She sleeps a lot, maybe takes two or three long naps during the day. Everything that I read makes it sound like she's in end stage?? And I feel like she keeps getting put off by medical professionals. When she was evaluated at the transplant center they said she could start the new Hep C medication when she got home. She finally got to see her doctor last week and he goes "oh no, you have a different type, that Harvoni doesn't treat". Okay, why are we just learning this? Then, apparently there is a new drug coming out (this month I believe) but she can't start it until September? Meanwhile, she's going to keep declining the next 3 months?? I mean, we've seen a drastic change over the last few months, I can only imagine what another 3 will do. I've read a ton. But I'm still so confused. Will Hep C even help at this point? Once she's in the decompensated stage? Or is this a terminal thing? We need to prepare ourselves for all scenarios. Please offer your stories!!!
So, my mother in law seems to be doing better in some respects, but doing worse in other. She has felt tremendous relief from getting drained last month and her fluid build up has definitely gone down. While I know she lost some weight due to the draining, she says she's lost nearly 45 lbs since it, which was not even a full month ago. That seems like pretty drastic weight loss, which doesn't seem like a good sign. Is it possible that she's lost THAT much weight in fluid? Also, she's starting to show signs of HE. She's been showing some signs for quite a while now (even before her cirrhosis diagnosis, we noticed mild confusion, having trouble articulating and completing sentences, a little slurred speech), but lately she's actually done things that seem like she's a bit turned around. For instance, the other day she went to the store to get her face lotion that she's worn for like 20 years and only after she caked it all over her face and then later blow her nose and see color on the tissue, did she realized she purchased foundation and not the lotion. Then the other day she brought me over cupcakes, and later when my kids and I went to eat them, we had to spit them out. They were terrible! I don't say that to be mean - but they were lemon poppy muffins with chocolate frosting - something that HAD to be a mistake! These seem pretty minor in the grand scheme of things, I know, but that coupled with the drastic weight loss, grey color of her skin, and the yellow of her eyes...I'm just so worried. She lives alone and so the confusion thing is of major concern. And I feel terrible because she keeps asking to babysit my kids, and I don't know how to tell her that I'm not comfortable with that, as I don't know the extent of her complications. From what I understand, the HE symptoms can come on suddenly and my kids are only 5 and 8. I mean, people dealing with this disease shouldn't be watching children right? Ugh! This whole limbo/grey area is so difficult!!!
2 Comments
Does her hepatologist know she is having HE episodes and is she being treated with Lactulose?
If she is taking lactulose she needs to take enough to have 2 to 3 soft bowel movements a day this will remove the ammonia from her blood which is causing these symptoms.
http://he123.liverfoundation.org/treatment-basics/treatment-medications/lactulose/
Any luck getting her listed for transplant?
If she is taking lactulose she needs to take enough to have 2 to 3 soft bowel movements a day this will remove the ammonia from her blood which is causing these symptoms.
http://he123.liverfoundation.org/treatment-basics/treatment-medications/lactulose/
Any luck getting her listed for transplant?
I honestly don't know if she's taking Lactulose. I'm in a strange position of not wanting to poke and prod too much into her medical info. If it were MY mom, I'd have no problem, but it being my MIL, I don't feel I have the same rights to know everything. Plus, I don't think my MIL knows she's having these episodes. She seems to have an elevated mood lately - and seems to be excited about her weight loss. I think she's in denial. And my husband seems to equally be in denial and doesn't seem to want to talk about it; so I'm trying to respect his feelings. I think I was being "too honest" with him and it was causing him stress and I just don't know how to handle this. I tried asking her the other day if she ever got an answer from the transplant center about whether or not she'll be listed and she said no. It seems like an awfully long time for them to not have an answer. But again, I've never experienced this - so I don't know what's normal.
She's going back to the transplant center next month for another CT scan - and then she's supposed to get on a medication for her Hep C in September, but in the meantime, I don't know what to do.
Luckily the fluid hasn't come back after her paracentitis, but the weight loss seems a bit extreme. It definitely doesn't look like a "healthy" weight loss. But like I said, she seems to think it is, or she seems happy about it. I don't know....I hate to say it, but I don't see things turning around. I know people have come back from this, but it just seems like things are changing rapidly at this point.
She's going back to the transplant center next month for another CT scan - and then she's supposed to get on a medication for her Hep C in September, but in the meantime, I don't know what to do.
Luckily the fluid hasn't come back after her paracentitis, but the weight loss seems a bit extreme. It definitely doesn't look like a "healthy" weight loss. But like I said, she seems to think it is, or she seems happy about it. I don't know....I hate to say it, but I don't see things turning around. I know people have come back from this, but it just seems like things are changing rapidly at this point.
So sorry to hear about your mother. She certainly sounds very sick.
I too have cirrhosis and FlyinLynn and I were both cured of Hep C with Harvoni, after other treatments did not work for us (called a relapse). My current treatment includes a small dose of Spironolactone (25 mg) a day to keep the fluids in check and I take Vitamins B12 and D
It's wonderful that you are doing so much research. As frightening as decompensation is, it's always best to know as much as you can so that you - or in this case - you, Misses 1, can be an effective advocate. That means insisting that the doctor spell everything out. Bring your written questions with you and write down what the doctor says.
Insist on a second or third opinion. Demand that treatment options be put forward and decided as soon as possible and if there is a 3 month period to wait for approval, ask why?
You may think you are annoying your doctors but sometimes that is part of advocacy
Though transplant lists in CA are long, you can register in another state. The ones with no helmet laws are ones that have a young fresh livers. Sad, I know, you'd think those states would figure that out. The point is, you don't have to be "listed" in just CA
Keep a journal and continue to ask questions!
Though a MELD score of 17 is not considered high enough to put your MIL on the top of the transplant list, other factors may give her extra points. Ask your doc to go to bat for you and if he/she won't, get a different doctor
Good luck to you and your loved one keep us posted
~ Linda
I too have cirrhosis and FlyinLynn and I were both cured of Hep C with Harvoni, after other treatments did not work for us (called a relapse). My current treatment includes a small dose of Spironolactone (25 mg) a day to keep the fluids in check and I take Vitamins B12 and D
It's wonderful that you are doing so much research. As frightening as decompensation is, it's always best to know as much as you can so that you - or in this case - you, Misses 1, can be an effective advocate. That means insisting that the doctor spell everything out. Bring your written questions with you and write down what the doctor says.
Insist on a second or third opinion. Demand that treatment options be put forward and decided as soon as possible and if there is a 3 month period to wait for approval, ask why?
You may think you are annoying your doctors but sometimes that is part of advocacy
Though transplant lists in CA are long, you can register in another state. The ones with no helmet laws are ones that have a young fresh livers. Sad, I know, you'd think those states would figure that out. The point is, you don't have to be "listed" in just CA
Keep a journal and continue to ask questions!
Though a MELD score of 17 is not considered high enough to put your MIL on the top of the transplant list, other factors may give her extra points. Ask your doc to go to bat for you and if he/she won't, get a different doctor
Good luck to you and your loved one keep us posted
~ Linda
Hi Sorry no one has commented so far I was hesitant to and hoping someone wiser than I would chime in.
First up let me say I am so very sorry to read about your mothers situation.
MELD score also called the Model For End-Stage Liver Disease is used to determine placement on the liver transplant list.
The score can range from 6 to 40 at most centers you need to have a score of 15 just to get on the list as the risk of dying from liver disease has to be greater than the risk of dying from the transplant procedure.
Most patients are around a MELD score of 30 or higher when they receive a transplant.
In her situation there is a bit of discussion as to whether to treat hep c and have the patient stay very sick but likely will not progress enough to be able to receive a transplant or hold off on treating hep c until after they receive a transplant and then treat the hep c. That would be a discussion to have with her doctor.
Cirrhosis is a very slowly acting condition people can go for many years before complete liver failure.
The sleeping a lot could be another symptom of cirrhosis called hepatic encephalopathy which is caused by a build up of ammonia in the blood due to the liver not functioning well there are medicines to help with this primarily Lactulose a sweet tasting liquid which is dose to cause the patient to have 2 to 3 soft bowel movements a day this medicine helps to remove the excess ammonia in this way but the dosing must be monitored carefully not enough and they will have HE symptoms too much and they can experience diarrhea leading to dehydration which can also trigger an episode of HE.
There are multiple subspecies of hep c called genotypes for example there are GT 1a, 1b, 2a, 2b etc. I believe there are a total of 16 quasispecies of hep c . Harvoni is currently used to treat Genotypes 1, 4, 5, and 6. There are other medicines used to treat genotypes 2 and 3 those medicines work very well also. New and better medicines are being approved every day.
Hep c treatment could help but that is best discussed with her doctor who knows her situation. From the sounds of what yoe have described she may be experiencing decompensated cirrhosis but people still can go for years being decompensated.
she certainly need to be under the care of a doctor associated with a liver transplant center. She needs to not drink or smoke and avoid salt. Hopefully she id taking diuretics and has been evaluated for esophageal varicies with upper endoscopy. She also need to be careful with OTC pain medicines she should only take Tylenol for pain and less than 1200 mg / day if ok with her doctor and not take any meds her doctor does not know about and approve. No aspirin or Aleve ect as this can cause bleeding and she is at risk of bleeding due to her cirrhosis
Just to add I am not a medical person I am a patient who had hep c probably for 37 years but was cured last year. I was diagnosed with cirrhosis in Jan 2008 but am still compensated so far but I will continue to be at risk of developing HCC (hepatocellular carcinoma aka liver cancer)
I hope some of this helps Hopefully Hector will chime in he is very knowledgeable about hep c, cirrhosis, liver cancer, and transplant he has been there and back again
Good luck
Lynn
First up let me say I am so very sorry to read about your mothers situation.
MELD score also called the Model For End-Stage Liver Disease is used to determine placement on the liver transplant list.
The score can range from 6 to 40 at most centers you need to have a score of 15 just to get on the list as the risk of dying from liver disease has to be greater than the risk of dying from the transplant procedure.
Most patients are around a MELD score of 30 or higher when they receive a transplant.
In her situation there is a bit of discussion as to whether to treat hep c and have the patient stay very sick but likely will not progress enough to be able to receive a transplant or hold off on treating hep c until after they receive a transplant and then treat the hep c. That would be a discussion to have with her doctor.
Cirrhosis is a very slowly acting condition people can go for many years before complete liver failure.
The sleeping a lot could be another symptom of cirrhosis called hepatic encephalopathy which is caused by a build up of ammonia in the blood due to the liver not functioning well there are medicines to help with this primarily Lactulose a sweet tasting liquid which is dose to cause the patient to have 2 to 3 soft bowel movements a day this medicine helps to remove the excess ammonia in this way but the dosing must be monitored carefully not enough and they will have HE symptoms too much and they can experience diarrhea leading to dehydration which can also trigger an episode of HE.
There are multiple subspecies of hep c called genotypes for example there are GT 1a, 1b, 2a, 2b etc. I believe there are a total of 16 quasispecies of hep c . Harvoni is currently used to treat Genotypes 1, 4, 5, and 6. There are other medicines used to treat genotypes 2 and 3 those medicines work very well also. New and better medicines are being approved every day.
Hep c treatment could help but that is best discussed with her doctor who knows her situation. From the sounds of what yoe have described she may be experiencing decompensated cirrhosis but people still can go for years being decompensated.
she certainly need to be under the care of a doctor associated with a liver transplant center. She needs to not drink or smoke and avoid salt. Hopefully she id taking diuretics and has been evaluated for esophageal varicies with upper endoscopy. She also need to be careful with OTC pain medicines she should only take Tylenol for pain and less than 1200 mg / day if ok with her doctor and not take any meds her doctor does not know about and approve. No aspirin or Aleve ect as this can cause bleeding and she is at risk of bleeding due to her cirrhosis
Just to add I am not a medical person I am a patient who had hep c probably for 37 years but was cured last year. I was diagnosed with cirrhosis in Jan 2008 but am still compensated so far but I will continue to be at risk of developing HCC (hepatocellular carcinoma aka liver cancer)
I hope some of this helps Hopefully Hector will chime in he is very knowledgeable about hep c, cirrhosis, liver cancer, and transplant he has been there and back again
Good luck
Lynn
1 Comments
Thank you so much for your response. This has been a roller coaster. She has bad days where I feel the outcome won't be good, but then it's followed by a week where you'd barely know she was sick.
She was drained last week and they removed 4 liters. They said it could come back in 3 months, or as little as 3 weeks. Time will tell, I suppose. The way I understand, the quicker it shows back up, the lower the liver is functioning? But I could be wrong.
I've also read that ascites, in and of itself, is associated with poor outcomes. I'm probably reading too much, but in my opinion, knowledge is power.
My husband is her only child, and his father died when he was young. She's his only parent/immediate family and we're all she has, too. The thought of her not being around is strange and sad.
She is under the care of a heptologist (sp?), so that's good. But like I said, I feel like she's kind of being put off sometimes.
she has not heard back from the transplant center about whether she will be put on the list, but like I said, she has some odds stacked against her. Not to mention, we're in CA where the average wait time is like 6 years....
She was drained last week and they removed 4 liters. They said it could come back in 3 months, or as little as 3 weeks. Time will tell, I suppose. The way I understand, the quicker it shows back up, the lower the liver is functioning? But I could be wrong.
I've also read that ascites, in and of itself, is associated with poor outcomes. I'm probably reading too much, but in my opinion, knowledge is power.
My husband is her only child, and his father died when he was young. She's his only parent/immediate family and we're all she has, too. The thought of her not being around is strange and sad.
She is under the care of a heptologist (sp?), so that's good. But like I said, I feel like she's kind of being put off sometimes.
she has not heard back from the transplant center about whether she will be put on the list, but like I said, she has some odds stacked against her. Not to mention, we're in CA where the average wait time is like 6 years....
I just discovered her MELD score is 17. Is that good or bad? Someone? Anyone??
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