Not sure what to expect next! Any info will help!

[tiggergirlz]

I do not even know how to start...My father was diagnosed with NASH (Non-Alcoholic) Cirrhosis a few years ago, this was a result of all of the medications he took after his heart transplant 11 years ago.  He is an insulin dependent diabetic, which has been minimally regulated since the transplant.  Numbers vary from 49 to 600's.  He was born with only one kidney and the other is functioning at only 25%.  In the past two months he has been diagnosed with refractory ascites, requiring him to have a paracentises every two weeks training 9-12 liters of fluid each time.  Because of his age (71) and his additional medical issues he is not a transplant candidate.  Last week he had the TIPS procedure and had great vitals during and when he was sent home.  A few days after he was very weak and sleeping constantly with absolutely no appetite.  On Sunday evening, 5 days after the procedure he became very groggy and disoriented, i realized when he was putting his insulin needle in the finger pricker that things were not right and immediately took his insulin kit away from him, and helped him administer his shot.  We called the dr and he said keep an eye on him over night that it could be he had just woken up and was not alert.  He lives alone since my mom passed away 4 years ago, so we took him to my house and i stayed up with him over night.  Like clockwork he arose from sleeping about every 10 minutes would stand up and wonder until i took him back to bed,  at one point he very labored said he couldn't breath so we called 911, he was admitted to the hospital and found his ammonia levels to be 79, during his time in the ER he increasingly became more confused, agitated and disoriented.  The immediately began him on high doses of lactulose, about 12 hours after the episode began he started to come out of it, realizing he lost a big chunk of time.  It is now a day and a half after he started to come out of it and he still doesn't seem all together back to normal yet.  I am not looking for any miracle answer but only some insight to what to expect from here, doctors only seem to give you a sugar coated answer.  I lost my mother in law 3 weeks ago to cancer only 6 weeks after she was diagnosed, I have two children 12 and 8 and they are very close to my dad and want to prepare them but do not know what to explain or what to help them to expect.  Can anyone give me an idea of what will happen from here?  I just want to be realistic and ready for what is coming next, if i knew what that was.....Please help :(

[rpooo]

Hello Tiggergirlz and welcome to MedHelp.
I think his most effective treatment option will be the role his diet plays. His diet has now just become very complicated since the TIPS procedure, as if it wasn't already complicated enough to manage his diabetes and NASH now he needs to be even more sensitive to ingesting foods that contain harmful toxins that his liver is no longer able to filter. The use of medications as Hector explained above will also play a key role in this.

Normally all of the blood in the body will eventually pass through the liver. This is important because the liver needs to pull out any bad things in the blood, such as toxins, and remove them from the body. Some of these toxins are drugs, like penicillin and Tylenol, and other toxins are things that the body needs but is done with, like damaged cells, proteins and old hormones. Pesticides, herbicides and hormones are often used in food production. The liver prepares all of these types of toxins to be removed from the body. However, when the liver is damaged, these toxins can't be removed and they start to accumulate creating problems.

Transjugular intrahepatic portosystemic shunt or (TIPS) is a shunt (tube) placed between the portal vein which carries blood from the intestines and intraabdominal organs to the liver and the hepatic vein which carries blood from the liver back to the vena cava and the heart. It is used primarily (but not exclusively) in patients with cirrhosis in which the scar tissue within the liver causes partial blockage of flow of blood passing through the liver from the portal vein to the hepatic vein. The blockage increases the pressure in the portal vein, which is called portal hypertension. As a result of the increase in pressure, portal blood flows preferentially through the branches of the portal vein to veins coming from abdominal organs that normally drain into the portal vein. These organs connect with veins that do not empty into the portal vein and thus bypass the liver. Thus, much of the flow of blood bypasses the liver.

I hope this information will help you gain a better understanding of your fathers condition. Talk with his hepatologist to recommend a dietician if he doesn’t already have one. HE or Hepatic Encephalopathy can become a life threatening condition if left untreated or becomes severe. To learn more about HE please visit the link below:

http://www.nlm.nih.gov/medlineplus/ency/article/000302.htm

I wish you and your family the very best. Take care.

Randy

[pugdaddy]

It sounds as though this 'team' (of very appropriate specialists) may not have been communicating with one another as well as they should have been.  Nor apparently was there sufficient communication with the patient.  As Hector and Shelley have noted, both your father and you (his family) should have been forewarned about these very predictable incidents.  The unfortunate result...a lot more fear and anxiety than you should have been subjected to.  Best wishes going forward for you, and esp your father

[tiggergirlz]

Thanks for your replies, I should have mentioned he has a team of drs at Unniveraity of Penn including hepatologist, endocrinologist, heart transplant team and about 4 others, his family Dr of 40 years is also part of the Penn circle.  He is also anemic and requires Aranesf shots every two weeks. So we are in touch with all those you mentioned.

[HectorSF]

Your father health can only be manged by a liver transplant center. They will help him manage his condition as best as is possible. He is suffering all the complications of decompensated cirrhosis and needs proper care (hepatologist) and meds to manage his complications from his advanced liver disease.

It doesn't matter that he can't get a liver transplant. The transplant centers will take care of him. No other doctors can help your dad at this point. So to help your dad the best thing you can do is have him cared for at a transplant center.

Your father has the most typical complications of liver disease. Ascites and hepatic encephalopathy (HE). Apparently you were unaware that the TIPS procedure (which will help him manage his ascites) can cause an episode of HE in at least 1/2 of TIPS patients. This should have been planned for by treating him with Lactulose and maybe Rifaximin if his insurance covers it and the doctor should have told you that there was a likelihood of his ammonia and other toxins increasing and causing the symptoms you describe which led to his hospitalization. "sleeping constantly with absolutely no appetite.  On Sunday evening, 5 days after the procedure he became very groggy and disoriented"

"Hepatic encephalopathy is seen in about 1 in 3 patients who undergo creation of a transjugular intrahepatic portosystemic shunt (TIPS). Typically, post-TIPS encephalopathy symptoms are well controlled through the use of Rifaximin or Lactulose."

"Subtle signs of hepatic encephalopathy are observed in nearly 70% of patients with cirrhosis. Symptoms may be debilitating in a significant number of patients. Overt hepatic encephalopathy occurs in about 30-45% of patients with cirrhosis. It is observed in 24-53% of patients who undergo portosystemic shunt surgery (TIPS)."

"After ascites, hepatic encephalopathy is the second most common reason for hospitalization of cirrhotic patients in the United States."

Get your dad connected up with a liver transplant center as soon as possible to prevent further suffering and they will tell you, as your father's primary caregiver, how you can best take care of your dad.
Good luck to you and your dad!
Hector

[Sevetts]

If he gets on top of things, diet, exercise, medications and a good attitude, he could live for a long time.  No one can really say.  The best people to answer that would be his Doctors / a Hepatologist.  They are really the only ones that can tell you.

[Sevetts]

He had an Hepatic Encephalaphy episode it sounds like.  The ammonia level really isn't that high.  And as I have learned, ammonia levels are not the only reason/thing that brings on HE.  Many things can.  I'm hoping Randy or Hector will come on and give you the list.  they are very good about that.

I also have diabetes and have issues with HE and a bit of ascites.  I am trying to get them under control with my diet.  Diet is Very important.  Along with medication of course.  It is very, very important that he gets his diabetes under control.  that big of a jump is dangerous.  It should not be fluxuating that much nor should it ever be that high, ever.  He should also be on a NO salt diet, No red meat, watch his protiens, no extra iron.  Fresh foods are so much better than packaged and fresh fruits and vegetables.  He should also be having at least 2-3 good bowel movements a day, every day.  And if he's not under the care of a Hepatologist, he needs to be as soon as possible.  His diabetes being that out of control worries me.

I wish you the best Please keep us posted
Shelley