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Hep C and cirrhosis. Please help.
My uncle, 54, had been diagnosed with hep c and cirrhosis on July. He most probably got it during a blood transfusion in about 1995. He is having fluid in foot for about two years though the doctors couldnt predict cirrhosis till now. He is having fluid in stomach too like pregnant but I dont know for how much time since he was a bit fat earlier too. The doctors said his cirrhosis is 'managable'.
He was given pegasys in July and had fever and weakness . He also traveled quite a bit due to work. Two weeks later, he ate some questionable food and got food poisoning(The doctor hadnt warned us about such things). He got a lot of muscle wasting and looks EXTREMELY weak. Also he developed severe back pain and is having trouble sleeping getting up etc. We have been going to doctors for a long time and had a lot of tests taken but they couldnt give a reason for the back pain. They dont seem to check him properly and just send him away to make more money. One day theyll say to do exercise the next theyll say do nothing at all. He recently had an enormous swelling in his foot and they just tell him to keep it elevated. I think his liver might be causing more weakness and he doesnt seem strong if something happens.
What should we do? Also, how long will his lever function before a transplant is required? I read that 30% people die within five tears of cirrhosis. Thanks.
He was given pegasys in July and had fever and weakness . He also traveled quite a bit due to work. Two weeks later, he ate some questionable food and got food poisoning(The doctor hadnt warned us about such things). He got a lot of muscle wasting and looks EXTREMELY weak. Also he developed severe back pain and is having trouble sleeping getting up etc. We have been going to doctors for a long time and had a lot of tests taken but they couldnt give a reason for the back pain. They dont seem to check him properly and just send him away to make more money. One day theyll say to do exercise the next theyll say do nothing at all. He recently had an enormous swelling in his foot and they just tell him to keep it elevated. I think his liver might be causing more weakness and he doesnt seem strong if something happens.
What should we do? Also, how long will his lever function before a transplant is required? I read that 30% people die within five tears of cirrhosis. Thanks.
'45% damaged through various tests like ct scan etc.'
This is not how liver disease is measured. Liver disease is measured by a liver biopsy. The stage of the liver disease is how the degree of liver damage is assessed. Stage 4 being cirrhosis. Then cirrhosis is broken down into various degrees of liver functionality. The percent of the liver that is still functioning normally is not how liver disease spoken of. The symptoms and the complications of cirrhosis are an indication of how damaged the liver is. Only people with advanced cirrhosis have major ascites, muscle wasting and sleep problems. There are medicines available to manage many of the complication your Uncle is experiencing. Diuretics for ascites and fluid retention. antibiotics to prevent infections. Back pain develops because the fluid in the abdomen pushes on the back. It can make breathing difficult and eating food difficult too as there is no room for the stomach to expand when the abdomen is full of fluid.
His diet could also help as OH mentioned. A low sodium/salt diet will reduce fluid retention. More protein (vegetable protein or cooked fish or chicken) will could help with his loss of muscle mass.
I am sorry, I know it is difficult navigating the Indian health system. But it sounds like you understand how to get access for services and New Delhi does have some of the best services available in the country.
Good luck
Hector
This is not how liver disease is measured. Liver disease is measured by a liver biopsy. The stage of the liver disease is how the degree of liver damage is assessed. Stage 4 being cirrhosis. Then cirrhosis is broken down into various degrees of liver functionality. The percent of the liver that is still functioning normally is not how liver disease spoken of. The symptoms and the complications of cirrhosis are an indication of how damaged the liver is. Only people with advanced cirrhosis have major ascites, muscle wasting and sleep problems. There are medicines available to manage many of the complication your Uncle is experiencing. Diuretics for ascites and fluid retention. antibiotics to prevent infections. Back pain develops because the fluid in the abdomen pushes on the back. It can make breathing difficult and eating food difficult too as there is no room for the stomach to expand when the abdomen is full of fluid.
His diet could also help as OH mentioned. A low sodium/salt diet will reduce fluid retention. More protein (vegetable protein or cooked fish or chicken) will could help with his loss of muscle mass.
I am sorry, I know it is difficult navigating the Indian health system. But it sounds like you understand how to get access for services and New Delhi does have some of the best services available in the country.
Good luck
Hector
Thanks for the feedback. The doctor was saying in July(before taking pegasys) that his liver is 45% damaged through various tests like ct scan etc. Is this bad? Can pegasys aggravate it? We will try to get him tested asap. I live in India, New Delhi btw. We have contacted liver specialists too. Healthcare is not much good here...
Thanks for the feedback. The doctor was saying in July(before taking pegasys) that his liver is 45% damaged through various tests like ct scan etc. Is this bad? Can pegasys aggravate it? We will try to get him tested asap. I live in India, New Delhi btw. We have contacted liver specialists too. Healthcare is not much good here...
OH is 100% correct.
Your Uncle it qualified to be listed for a liver transplant. He should go to the nearest liver transplant center ASAP. They are the only ones that can help him now. All of his symptoms are symptoms of End-Stage Liver Disease. The back pain is from the fluid in his abdomen. The fluid in the abdomen is called ascites. The swelling in his foot is fluid buildup like that in his abdomen. Sleeping problems are common in all patients with End-Stage Liver Disease. He is prone to infections viral, bacterial and fungal. It he has an infection and i fever he should go an ER. He may need to be treated with IV anti-biotics.
'The doctors said his cirrhosis is 'managable'.'
His cirrhosis is not being managed from the information you posted otherwise he would be in the shape he is in and would have been referred to a transplant center by now. Is he being screen every 6 months for liver cancer? That is another complication that can occur in patients with cirrhosis of the liver. It is also fatal if he don't get a transplant.
how long will his lever function before a transplant is required?
No one can say as he is not been properly diagnosed and treated. Ascites can get infected which can be life-threatening. He probably has other complication he is not aware of such as varices. They are blood vessels that can burst and cause vomiting of blood which is also highly dangerous. He needs to be under the care of a transplant program ASAP as complication from End-Stage Liver Disease can be deadly. His condition is very serious and obviously whoever is treating him has not communicated this fact to him.
Good luck to you and your Uncle!
Hector
Your Uncle it qualified to be listed for a liver transplant. He should go to the nearest liver transplant center ASAP. They are the only ones that can help him now. All of his symptoms are symptoms of End-Stage Liver Disease. The back pain is from the fluid in his abdomen. The fluid in the abdomen is called ascites. The swelling in his foot is fluid buildup like that in his abdomen. Sleeping problems are common in all patients with End-Stage Liver Disease. He is prone to infections viral, bacterial and fungal. It he has an infection and i fever he should go an ER. He may need to be treated with IV anti-biotics.
'The doctors said his cirrhosis is 'managable'.'
His cirrhosis is not being managed from the information you posted otherwise he would be in the shape he is in and would have been referred to a transplant center by now. Is he being screen every 6 months for liver cancer? That is another complication that can occur in patients with cirrhosis of the liver. It is also fatal if he don't get a transplant.
how long will his lever function before a transplant is required?
No one can say as he is not been properly diagnosed and treated. Ascites can get infected which can be life-threatening. He probably has other complication he is not aware of such as varices. They are blood vessels that can burst and cause vomiting of blood which is also highly dangerous. He needs to be under the care of a transplant program ASAP as complication from End-Stage Liver Disease can be deadly. His condition is very serious and obviously whoever is treating him has not communicated this fact to him.
Good luck to you and your Uncle!
Hector
He needs to be seen by a hepatologist ( a liver doctor) at a transplant center, asap.
If you tell us where you're located someone might be able to suggest a good hepatologist.
You're right, the swelling can be from his liver. Obviously his doctor isn't helping him properly.
Be sure he eats a healthy very low salt diet, preferably organic, and no red meat. Avoid processed foods. He should take a multivitamin without iron to help him get his nutritional needs.
For a list of doctor's recommended by our members, check out this link:
Look specifically for hepatologists.
http://www.medhelp.org/posts/Hepatitis-C/Who-is-your-good-doctor-/show/1715783
If you tell us where you're located someone might be able to suggest a good hepatologist.
You're right, the swelling can be from his liver. Obviously his doctor isn't helping him properly.
Be sure he eats a healthy very low salt diet, preferably organic, and no red meat. Avoid processed foods. He should take a multivitamin without iron to help him get his nutritional needs.
For a list of doctor's recommended by our members, check out this link:
Look specifically for hepatologists.
http://www.medhelp.org/posts/Hepatitis-C/Who-is-your-good-doctor-/show/1715783
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