A Hell of a Diet

"I highly recommend this diet!"

This is probably the second most common sarcastic phrase to come out of my father's mouth. For those wondering, "my mazel" is probably #3 and I'll keep you in suspense for now what #1 is.

I am an eater. Always have been and still am. Ask any family member, friend, or colleague that sits within earshot of me and they'll tell you that I can put away a serious amount of food. Since I was 7. I'm still very proud that I could amaze entire restaurants full of people with how much the "small blonde girl" ate.  I am not alone--this runs in the family. For those keeping count, my family eats and kvetches a lot. Dad falls in the 'family member that can eat' category. Well, he was an eater until his liver disease progressed.

Another terrible side effect that doesn't get discussed enough is how advanced cirrhosis is certainly effective at unintentional weight loss and malnutrition. In fairness, there are so many significant side effects of this disease that it's really hard to keep the 'top 5' list of worst symptoms straight. End stage liver disease (ESLD) causes lack of appetite, difficulty digesting properly, increased risk of infection, and all sorts of other issues relative to metabolism and absorption.


http://www.cghjournal.org/article/S1542-3565(11)01169-4/journalimage?src=fig&loc=gr1&ishighres=true&allhighres=true&free=yes

 As a lot of people, right around Thanksgiving and the end of the year I noticed that I was eating too much and I already had added extra [8+!!] pounds since coming back from my Honeymoon in August.

I'm not one to usually count calories, but I started to work a little harder at the gym and cut back on select food items after the New Year. However, I feel extremely guilty thinking how I could afford to lose a few pounds because I choose to overindulge yet my Dad could barely eat the past few times I've visited him. As usual these days, I really am taking a different approach to my own 'problems' when I realize how miserable my Dad's situation is.

From Medscape:

The majority of cirrhotic patients unintentionally follow a low caloric diet, a fact that is attributed to various side-effects observed in cirrhosis. Loss of appetite, which is currently attributed to the presence of cytokines such as tumor necrosis factor α (TNF- α) ... [is one of] the most common reasons. Also, early satiety due to impaired gastric accommodation and impaired expansion capacity of the stomach due to the presence of clinically evident ascites quite often lead to an inadequate nutrient intake.

Basically, because of the liver disease, Dad has no appetite. He has probably lost about 40 pounds, although it's tough to accurately measure as he's gained so much fluid from his ESLD (ascites will be another medical education post). Also, when he now eats, he almost immediately starts feeling miserable from severe abdominal pain and nausea (although some of the nausea is probably from the anti viral meds). He can have more pain since his ascites makes it difficult for his stomach to expand appropriately after eating.

Unfortunately, the list of symptoms related to lack of appetite/digestion doesn't end there--as if that wasn't enough. Impaired digestion is worse with people that have portal hypertension--which is of course one of the many symptoms of liver disease Dad definitely has. He has osteoporosis now also--he even had a broken foot during my wedding related to osteoporosis-- due to the malabsorption of nutrients related to his liver disease.

Metabolism overall is impacted: Dad's muscles have been atrophied significantly as he's been in a severe catabolic state (presumably, based on what I've read and seen in person). Between my last two visits with him, he has lost an incredible amount of muscle. [Why? A: The cirrhotic liver has reduced gluconeogenic capacity, and relatively short periods of fasting in cirrhotic patients lead to muscle breakdown with mobilization of skeletal muscle amino acids (refer to above figure)]

Why stop the list there? His low serum albumin levels (not used in the MELD scoring system, of course, but a very poor associated prognosis) are also worse due to these various abnormal metabolic states. He suffers from hypoglycemia frequently now.  Are we having fun yet?

One of the craziest things about all of this is that even though he doesn't feel like eating much, his body is actually demanding more calories than usual. Dad is in a hypermetabolic state--that is part of what is causing some of the symptoms I described above. This means that he has an increased demand for protein and calories, yet he's actually unable to eat even close to what he used to...or anything at all, these days...

Is anyone else out there feeling less focused on their own diet and weight right now? Feel a little guilty for complaining that you should lose a few pounds?

As so many of these medical education topics around cirrhosis go, this one is also incredibly frustrating from a standpoint of why we're still waiting for a transplant. What is so incredibly disheartening is that now that I've done a little more homework on why Dad is losing his appetite and having various metabolic symptoms, I have learned that the prognosis of someone with ESLD that exhibits cachexia (unintentional weight loss, loss of appetite, etc) is poor and significant. Many non-MELD classification systems use malnutrition to determine cirrhosis severity because of this. This includes the Japanese nutritional indexes (CONUT) to assign priority for organ allocation in liver transplantation. Yes--it's that important clinically, yet it's completely ignored as of today in the US. By the way, the old scoring systems in the US didn't use to ignore this. This link between malnutrition and prognosis has been known for at least 50 years! Yet, a study has found that:

[M]alnutrition as measured by a variety of parameters predicted survival independently of the MELD score in cirrhotic patients awaiting liver transplantation.

So, here we are again. Dad is completely miserable every single hour (including when he's wide awake in the middle of the night) because of all of the issues related to his liver disease and metabolism. Not only that (and that's enough! TRUST ME!), but it also means that his prognosis (including after transplant--if he gets one) is not as good. Yet, this doesn't get considered at all by anyone making organ allocation decisions. In Indiana or anywhere else in the US. All of this information and (new to me) knowledge is certainly enough to make me lose my appetite--at least temporarily.

My Mazel.