I'm new to using forums, so I apologize in advance if I'm doing this incorrectly. I'm so scared and frustrated. My brother is 36 and was, up until the last month, a healthy, vivacious, happy man. He started losing weight in December of 2008, and his doctor attributed it to stress. In total, he has lost around 70 lbs in 9 months. He's 6'5", and was a bit overweight, so when he began losing weight it didn't seem completely alarming. A month ago, he became very lethargic, had zero energy, and his skin turned yellow. At that point, a doctor recommended he have a liver biopsy, and he was originally diagnosed with autoimmune hepatitis which caused liver disease. It was recommended that he schedule an appointment with a hepatologist immediately. We were told the hepatologist's office average 7-10 days to review the files to determine whether they would see him. A few days later, he became very confused, was slurring his words and looked terrible, so my Mom took him to the emergency room. That evening, he couldn't tell time, flush a toilet or operate a tv remote. He was in the hospital for 7 days, and during his visit, we were informed that he did not have autoimmune hepatitis as they had originally thought. Rather, he has alcoholic cirrhosis (although he was never a heavy drinker). He took lactulose 2X a day, which seemed to help moderately, although he remained very sleepy, and occasionally confused depending on the time of the day. My brother is a very quick-witted man, so it's a far contrast from the brother we're use to being around. It's breaking our heart to see him in this condition.
He never did see hepatologist during his stay, nor have we had conclusive information relayed to us about his liver biopsy. The doctor told us that he would need to come back in 6 months for further tests, and in the interim, attend alcoholics anonymous classes, and continue to see his primary care physician. The day after he was released, he collapsed in the bathroom and hit his head. His blood pressure had dropped dangerously low. An ambulance took him to the emergency room, where he stayed overnight for further tests. He was again released the following day and was told to move slowly from a laying, to a sitting and/or standing position. During his time at home, we ensure he was on a very low sodium diet (under 2,000 mg). 3 days later, he again collapsed from low blood pressure. We decided to take him to a different emergency room because he didn't seem to be getting the care/treatment he needed at the first hospital. The new doctors determined that his sodium levels were too low.
He's been at the second hospital for 5 days. My Mom tracked his MELD score, using an online calculator, and it has varied from 31 to 32. Based on my online research, he his gravely ill. I just don't know who to talk to, and where I can get a straight answer.
He was in a great deal of abdominal pain yesterday, so they gave him some morphine. Since then, he's been so tired he can barely speak. The doctors said he may need his body cavity drained, so they gave him vitamin k in preparation, which didn't do the trick. Today, he's had 2 plasma injections to get him ready to drain fluid. I'm not sure what this means. Now, the last communication I received is that this hospital is taking him back to the first hospital so that he can see the hepatologist. Why didn't he see the hepatologist the first go around? Why doesn't anyone care enough to want to treat him? What can I do? I'm so scared and feel completely helpless. I truly feel as though my family and I are useless and that my brother is all alone. Any suggestions would be greatly appreciated. I've been trying to stay positive and supportive through this entire process, but right now, I just feel broken down and so very sad for my brother. His MELD score is so alarming to me, I can't understand why his doctors aren't treating this as an urgent matter. It's as though no one wants to take responsibility for treating him.
Side Note: My brother took a very popular weight loss drug for over 2 years. I won't type the brand, as I'm not sure if it's against the forum's rules. The FDA recently recalled the drug because it was linked to serious liver damage. More than one doctor has indicated that this could have attributed to my brother's liver failure (toxins found in biopsy), however, since he admitted to being a mild/moderate drinker, his disease will still be labeled as Alcoholic Cirrhosis. Therefore, he will not be a liver transplant candidate for 6 months.
Thank you for reading my post and for offering any kind words/prayers,
KC, welcome to the forum. PG has given you some great advice. I am sorry your brother is so terribly sick. I would also suspect the weight loss drug for his liver disease. With a MELD score that high, he should go to the top of the transplant list. Of course, as you stated, the problem is their labeling him with alcoholic cirrhosis and requiring 6 mos. of documented AA meetings or alcohol counseling, depending on the transplant center.
It doesn't seem to me that he has been getting the best of care. When he initially started losing weight w/o dieting, blood work should have been done. That might've shown abnormal liver enzymes. At this point, it is imperative that he be under the care of a hepatologist. Most liver patients need to be on a low-salt or no salt diet to prevent retention of fluid. However, if it drops too low, that also causes problems. Getting the electrolytes in balance is very difficult with liver patients.
Either your brother hid his actual alcohol consumption from everyone and lied about how much he drank (something that alcoholics do) or something else caused his liver disease. You need to find out which it is.
My thoughts will be with you and your entire family.
Lostsad, yes, MELD scores do fluctuate, although usually not by much. With proper nutrition and care, he could conceivably drop down into the 20s...but still needing transplant. Try to focus on his overall condition rather than the MELD score, though.
So sorry to hear what care and Doctors are doing. It is hard to get on a transplant list. It took my husband about two years. But he is on it now and all most to the top with a meld score of 13, but because of his liver cancer he gets placed at a score of 22. You can get placed with different hospital that may let him on their list. You can be put on more than one list at a time if you are able to go thought the admitting process for that transplant center. The wait list can be difference lengths depending on where you live. It's because some areas people are better at being donors. Also they can do living donor transplants too. Not all centers do them. I know that California and Colorado do and Oregon does not. You just never know what will happen. He was too sick last year to be placed, but his score is higher this year and he is doing better on some days. I really did not think we would get this far. So there is always some hope even if it looks bad.
Hi, Vasquez! Good to see you posting and that your husband is on a transplant list. Hopefully, he will get a liver soon. As you may have read, I also had liver cancer. However, because it had metastasized to the inferior vena cava, I was not a transplant candidate. Thankfully, with treatment and a rt. liver lobectomy, I am still here today and cancer free for 2+ years.
Please try to keep us updated on your husband. I know you are busy with work and kids.
Post Edited (hep93) : 10/21/2009 3:01:15 PM (GMT-6)