New to this forum

Hi -- I am new to this forum. My mom (almost 70) contracted Hep C over 30 years ago thru blood transfusion. Probably more than 10 years ago she was diagnosed; she had a receptive gene-type and was successfully treated thru peg/interferon that eradicated HCV but not before the liver was permanently damaged by cirrhosis. She also, unfortunately, suffers from Crohn's disease and a number of food allergies (including nuts, fish, etc.). Nonetheless, she has enjoyed a number of additional years of well-being since the initial diagnosis, for which we are all thankful.

For the past 5 to 8 months, however, she has begun experiencing intensifying symptoms of what appears to me to be liver failure (i.e., "loopiness" associated with high ammonia, fluid retention (and difficulty breathing), etc.). Several months ago she was hospitalized for 2 weeks due to uncontrollable bloody diarreha (which was accompanied by a battle with c-diff). She has just now been hospitalized due to several weeks of uncontrollable nausea and vomiting (which I think may be caused by kidney failure as indicated by the need for 8 to 10 units of albumin that have helped significantly). She now is regularly registering an extremely low blood pressure (100/45) and I fear that she is gravely ill.

The problem is: (1) our family doesn't discuss the reality of the situation; and (2) the doctors don't discuss the fact that this is all part of the progression of her disease. Thus, I feel like I might be the "crazy" or "negative" one that is over reacting. Maybe it will all be better someday and I'm just melodramatic, but to me it seems like we are facing an inevitable decline.

My understanding is that my mother would not be a good candidate for transplant (but we don't talk about it). She is definitely frustrated and seemingly depressed, and I truly don't believe that she understand the future that she is facing. Most recently she said "I feel like I lost the last 5 months" because I haven't been feeling well or able to do activities of daily living. I feel that she's never going to be "normal" again and it would be better to face that and discuss that, but she's not really ready for or interested in having that conversation.

My dad also doesn't get it. So, I'm wondering if I should just drop it or if there is a way that I should get involved to help. Avoidance is getting tiring and uncomfortable.

Thanks.

Connie -- so glad to get your note. I've certainly tried to learn about the disease by internet but most of my family doesn't like to talk about it. All of the symptoms in their mind (e.g., confusion) are isolated rather than parts of the same disease. My mom has been treated by the same hepatologist for the entire time. He was great in the battle against Hep-C, but in recent years he seems not to be discussing any of the complications as part of the liver disease. So, each new development is viewed as a surprise and set-back rather than as an additional complication to be managed within context of the overall battle.

Anyway, my point of view on transplant is not well informed. I understood that when the patient is above a certain age, and when cirrhosis is not the only chronic disease, the consideration for transplantation was limited. Of course, the doctor has never talked about this either. Is it common for the doctor to bring it up or does the patient/family have to do all of the suggesting?

So, right now I have a few things on my mind that I'd like to ask questions about. I apologize that the thoughts are a bit disjointed, but here goes:

1. As I said, mom just spent three days in the hospital due to a month of "unexplained" daily nausea and vomiting. During this visit, she received 8 to 10 jars of albumin and also was on IV fluids. During the hospitalization, the nausea and vomiting were absent. She was released with some medication changes including elimination of rifaxamin (sp?). She also is not on lactalose (and she will refuse to ever go back on it because she blames this treatment for the emergence of bloody diarrhea and c-diff last fall). So, as I understand it, she is not being treated for the ammonia level at all right now. Within 12 to 15 hours of being home, the nausea and vomiting have started again. Do you think this is due to the absence of albumin? or increasing of ammonia level? or something environmental?

2. Speaking of environmental, I've come to the conclusion that, given the increasingly compromised condition of her liver and kidneys, she may in fact be getting worse and worse at home because my dad and sister still smoke in the car and the house while she's around. I am sure that second hand smoke is a really bad idea for someone as sick as my mom, but again, no one medical is saying that to the family. And I am basically viewed as an alarmist because I also think that the diet they choose -- full of packaged and processed foods -- is also contributing to her decline.

3. What exactly is a MELD score and why don't the doctors talk about that? I've read a bit, but it's not something that the professionals seem to be monitoring. Last fall when mom was in the hospital, my wife got the chance to ask one of the doctors attending and he said "it isn't that bad, around 12 to 15". But can you be really sick with a MELD that is "low"? How quickly does a MELD change? Are there other numbers that we should be paying attention to? I heard something referenced about BUN during this last hospitalization. And what's a Child-Pugh?

I could go on and on. Obviously, I lack an outlet for informed dialogue. But I'll stop for now. Look forward to responses.

Hi TB, welcome to the forum for liver disease.

I am the caregiver of a transplant recipient and liver cancer survivor.

Unfortunately, Mike also has Hep C which is not cleared, so though he has a new lease on life (May 2011), he still has liver disease.

Liver disease is progressive and there is no real cure, bar transplant. There are many causes, but the disease has a pretty typical path...and unfoldes over decades. Mike was infected with Hepatitis C around 1970 and it took 40 years to GET him. He was a drinking man and that didn't help at all.

Eventually, the patients get very sick and will die without transplant from the inabilty of the body to properly process wastes....they will have Cirrhosis, jaundice, ascites, edema, hepatic encephalopathy, maybe varices in esophagus and/or stomach, hepatic hypertension, some also have rental failure, or liver cancer, etc.

It is not a pretty picture.

When Mike was so sick, we talked about his life and death choices...did he want treatment, extraordinary measures to sustain life even if he was brain dead, etc. We talked about his funeral, any estate issues, what he wanted in any obituary. We talked about everything because it became clear that he was not going to make it to tranaplant as sick as he was. We talked to the children. We talked to a lawyer.

He was settled with the inevitability of his death. The children were settled but sad. His friends and relatives came to visit from all over...better to say goodbye with him still alive than to come to a service afterwards when he was gone. He did not want a "real" funeral. Just a cremation.

Well, we didn't have to do any of that this time because the transplant came in time. When we do have to go through this, it is all decided.

But talking about it made us all feel better. None of us is going to get out of this world alive. We all will pass at some point. thinking things through is a good idea. Leave the family matters in some kind of peaceful order.

Good luck to you and your family. It sounds like she is pretty sick.

Carol

Post Edited (MamaLama) : 2/22/2012 4:38:14 PM (GMT-7)

Debbie, I think you confused bilirubin with BUN. Bili (for short) is the orange or yellowish pigment in bile. It's the accumulation of bili that causes jaundice. This happens when a liver becomes decompensated and can no longer efficiently remove toxins. BUN is blood urea nitrogen, a substance in the blood that provides a rough estimate of kidney function.

Hugs,
Connie

Thanks, everyone. I really have been questioning whether I'm just Chicken Little. But you've all been through it, and it seems that I might just be putting some of the pieces together more quickly than the rest of the family. This might be because I don't live it everyday (I live in a different city than Mom, Dad, and Sis). Now I just need to figure out if there's a way that I can help.

Thanks, Angie. I appreciate the encouragement. I will continue to find ways to guide and try to get to the next visit with hepatologist.

In the meantime, a comment above triggers another question I've been meaning to ask about antidepressants.

Mom was on zoloft or prozac or something like that for a number of years, but within the past year my Dad convinced her to drop it (because he blamed it for her sleepiness and lack of interest). I believe that the sleepiness etc. is part of the liver disease progression (but we've already been through that). So, I used to bring it up the issue of going back on the antidepressants every once in a while because Mom has gotten progressively more stressed and anxious and unhappy. But now she's convinced that it has bad side effects for her heart (which has never been an issue to this point).

Anyway, given the mental changes associated with HE, I'd kind of given up the subject because I didn't think they'd work anymore anyway. But your comment suggests that perhaps an antidepressant might mitigate some of the angry, edgy, unhappy moods that were never characteristic of my Mom. She is harder and harder to be around, though I certainly get that it sucks to be the patient suffering from one thing after another due to the progression of this disease.

Is treatment with anti-depressants something fairly common and effective for managing this phase of disease?

It is also commonplace for antidepressants to be given to those undergoing hep C treatment. Sometimes they are started ahead of the treatment, since they take some weeks to take effect.

Hugs,
Connie

Yes, Debbie, but you stated that bilirubin was a test of kidney function. It is not. It is the test that is elevated when one is jaundiced...has to do with bile and liver function, not kidneys. But MELD is calculated using INR, bilirubin, and creatinine.

Hugs,
Connie