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cirrhosis questions
I am reaching out for answers on cirrhosis. My hubby has stage 4 level c. He has just about all of the complications and needed to have an emergency tips procedure to save his life. He is 46 yrs. old. He was taken by ambulance to the hospital after throwing up blood and having tingling in his arms. I think his liver was shutting down, when the lifesquad took him out of our home, he was gray. He is better with the tips and doc says his recovery is off the charts. However, lots of drawbacks and complications. He has lost 50 lbs, lost hair in the back of his head- bald patches, seems very malnourished- dry dry skin etc. He has some fluid in his lungs that he is constantly trying to expel, no voice- side effect from ventilator that was in his mouth for 2-3 days or more. He has been w/ out a voice for about 1 mos now. My question... this is from alcohol, the cirrhosis. What do you think his long term prognosis is? Do you think he will need a liver transplant?
COMMUNITY LEADER
The transplant center has a dietian that can help your husband with a diet that will keep in as healthy as possible. Diet is critical for patients with advanced cirrhosis. Us with advanced cirrhosis have problems with absorbing and processing nutrients. That is why at end stage we look like concentration camp survivors. Were you can see every bone in their body and all muscle mass is lost. We are literately are anorexic and starving.
Liver disease effects many body systems. As you said hair loss. Most of us lose all body hair before transplant. Some lose hair on their head as well. This is part of the process were we have too much estrogen. This causes a number of complications including loss of libido, ED, spider veins on the skin, growth of breast tissue etc.
'Many chronic liver diseases are associated with malnutrition. One of the most common of these is cirrhosis. Cirrhosis refers to the replacement of damaged liver cells by fibrous scar tissue which disrupts the liver's important functions. Cirrhosis occurs as a result of excessive alcohol intake, viral hepatitis, obstruction of the bile ducts, and exposure to certain drugs or toxic substances.
People with cirrhosis often experience loss of appetite, nausea, vomiting and weight loss, giving them an emaciated appearance.
Adults with cirrhosis require a balanced diet rich in protein, providing 2,000 to 3,000 calories a day to allow the liver cells to regenerate. Doctors must carefully prescribe the correct amount of protein for a person with cirrhosis. In addition, the physician can use two medications (lactulose and xifaxan) to control blood ammonia levels.
There are a number of complications of cirrhosis which can be helped through a modified diet.
Persons with cirrhosis often experience an uncomfortable buildup of fluid in the abdomen (ascites) or a swelling of the feet, legs, or back (edema). Both conditions are a result of portal hypertension (increased pressure in the veins entering the liver). Since sodium (salt) encourages the body to retain water, patients with fluid retention must reduce sodium to 2,000 or 1,500 mg per day and usually also require diuretics to manage fluid retension. In fact, most prepared foods contain liberal amounts of sodium, while fresh foods contain almost no sodium at all.
Red meat can cause Hepatitic Encephalopathy ("liver caused mental impairment." Patients become confused and some temporary loss of memory occurs) and should not be eaten. Cooked chicken and fish are good sources of protein along with vegetable protein and Ensure or Carnation Instant Breakfast when a patient find it difficult to eat.
The transplant dietian can help him with all of this.
Yes, I am #4 on the transplant list because of my liver cancer. My time is running out (I have had cancer for 22 months now) so I need a transplant soon to continue living. I should be find if a can get a liver. Unfortunately there haven't been any donor livers in the last month.
Hang in there!
Hector
Liver disease effects many body systems. As you said hair loss. Most of us lose all body hair before transplant. Some lose hair on their head as well. This is part of the process were we have too much estrogen. This causes a number of complications including loss of libido, ED, spider veins on the skin, growth of breast tissue etc.
'Many chronic liver diseases are associated with malnutrition. One of the most common of these is cirrhosis. Cirrhosis refers to the replacement of damaged liver cells by fibrous scar tissue which disrupts the liver's important functions. Cirrhosis occurs as a result of excessive alcohol intake, viral hepatitis, obstruction of the bile ducts, and exposure to certain drugs or toxic substances.
People with cirrhosis often experience loss of appetite, nausea, vomiting and weight loss, giving them an emaciated appearance.
Adults with cirrhosis require a balanced diet rich in protein, providing 2,000 to 3,000 calories a day to allow the liver cells to regenerate. Doctors must carefully prescribe the correct amount of protein for a person with cirrhosis. In addition, the physician can use two medications (lactulose and xifaxan) to control blood ammonia levels.
There are a number of complications of cirrhosis which can be helped through a modified diet.
Persons with cirrhosis often experience an uncomfortable buildup of fluid in the abdomen (ascites) or a swelling of the feet, legs, or back (edema). Both conditions are a result of portal hypertension (increased pressure in the veins entering the liver). Since sodium (salt) encourages the body to retain water, patients with fluid retention must reduce sodium to 2,000 or 1,500 mg per day and usually also require diuretics to manage fluid retension. In fact, most prepared foods contain liberal amounts of sodium, while fresh foods contain almost no sodium at all.
Red meat can cause Hepatitic Encephalopathy ("liver caused mental impairment." Patients become confused and some temporary loss of memory occurs) and should not be eaten. Cooked chicken and fish are good sources of protein along with vegetable protein and Ensure or Carnation Instant Breakfast when a patient find it difficult to eat.
The transplant dietian can help him with all of this.
Yes, I am #4 on the transplant list because of my liver cancer. My time is running out (I have had cancer for 22 months now) so I need a transplant soon to continue living. I should be find if a can get a liver. Unfortunately there haven't been any donor livers in the last month.
Hang in there!
Hector
Thanks Hector for so much great information. His meld score was around 18 before tips and doc said around 11 after tips. I am sorry to hear you have liver cancer. did I see somewhere on here that you are going to be getting a transplant? I hope this is true. You seem very strong, stay strong, I am sure it is pulling you thru this. We are in Dallas, some of the top drs in the country are here, and we go every week right now for a follow up with his hepatologist. I guess my uncertainty is what is the long term. Is he going to be tired all the time? Trying to figure out what he can eat and it won't give him an upset stomach. Explaining to my kids that this is what dad is going to be like now. We are lucky to have him still with us, but this is a tough disease, because it seems so unpredictable! I am hoping for all of the best for you too!
COMMUNITY LEADER
'his bilirubin has been dropping, was 3 now it is 2.8. Do you know if this is high bilirubin?'
Yes, it is high but not terribly high. About 1.1 is the top of the normal range. My bilirubin is typically 4.0 - 5.0. When I am close to 5.0 My eyes and skin are yellowish.
The most important number concerning transplant and mortality is the MELD score.
What is your husband's MELD score? It will tell you how critical his liver disease is.
------------------------------------------------------------------------------
What is MELD? How will it be used?
The Model for End-Stage Liver Disease (MELD) system is a numerical scale used for adult liver transplant candidates. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests.
Lab values used in the MELD calculation:
Bilirubin, which measures how effectively the liver excretes bile;
INR (formally known as the prothrombin time), measures the liver’s ability to make blood clotting factors;
Creatinine, which measures kidney function. Impaired kidney function is often associated with severe liver disease.
Within the MELD continuous disease severity scale, there are four levels. As the MELD score increases, and the patient moves up to a new level, a new waiting time clock starts. Waiting time is carried backwards but not forward. If a patient moves to a lower MELD score, the waiting time accumulated at the higher score remains. When a patient moves to a higher MELD score, the waiting time at the lower level is not carried to the new level. The clock at the new level starts at 0. (Example: Patient has a MELD score of 15 and has been at level 11-18 for 100 days. With new laboratory tests, the patient’s MELD score is 22. The patient moves to a new MELD level of 19-24. The patient’s waiting time at this new level starts at 0 days). Waiting time is only used as a tie-breaker when patients have the same MELD score.
The four MELD levels are:
greater than or equal to 25
24-19
18-11
less than or equal to 10
Lab Test Frequency
MELD score greater than or equal to 25; Labs needed every 7 days
MELD score 24-19; Labs needed every 30 days
MELD score 18-11; Labs needed every 90 days
MELD score less than or equal to 10; Labs needed every year
--------------------------------------------------------------------------------------------------
My point was not whether your husband could or couldn't get on the transplant list now. A transplant center has the only specialists that can care for him and manage the complications of cirrhosis. The reality is that very few patients get listed and then get a transplant within months. Many of us wait for years to get a transplant. In the meantime we try to stay as healthy as possible so we suffer less and we need more and more treatments as our diseases progress to stay alive long enough to wait for a liver transplant.
Advanced Decompensated Cirrhosis has many complications that can be fatal. Your husband has already experienced some of them. Variceal bleeding whether vomiting or defecating blood, Infected ascites fluid, hepatic encephalopathy coma, uncontrollable infections, fluid in his lungs, etc. Also since your husband has alcoholic cirrhosis he has an increased chance of developing liver cancer (HCC). I hope he is having surveillance every 6 months with an ultrasound and AFP blood test. If not caught early, liver cancer is one of the deadliest cancers. The only cure is a liver transplant before the cancer spreads or too large or too many tumors grow. I have liver cancer and I can tell you it is nothing you ever want to have happen to anyone you care about.
Without adequate care of a hepatologist and a team of other specialist doctors (like the Interventional Radiologists (IR) that did his TIPS procedure) I'm afraid your husband's prognosis is poor.
Good luck!
Hector
Yes, it is high but not terribly high. About 1.1 is the top of the normal range. My bilirubin is typically 4.0 - 5.0. When I am close to 5.0 My eyes and skin are yellowish.
The most important number concerning transplant and mortality is the MELD score.
What is your husband's MELD score? It will tell you how critical his liver disease is.
------------------------------------------------------------------------------
What is MELD? How will it be used?
The Model for End-Stage Liver Disease (MELD) system is a numerical scale used for adult liver transplant candidates. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests.
Lab values used in the MELD calculation:
Bilirubin, which measures how effectively the liver excretes bile;
INR (formally known as the prothrombin time), measures the liver’s ability to make blood clotting factors;
Creatinine, which measures kidney function. Impaired kidney function is often associated with severe liver disease.
Within the MELD continuous disease severity scale, there are four levels. As the MELD score increases, and the patient moves up to a new level, a new waiting time clock starts. Waiting time is carried backwards but not forward. If a patient moves to a lower MELD score, the waiting time accumulated at the higher score remains. When a patient moves to a higher MELD score, the waiting time at the lower level is not carried to the new level. The clock at the new level starts at 0. (Example: Patient has a MELD score of 15 and has been at level 11-18 for 100 days. With new laboratory tests, the patient’s MELD score is 22. The patient moves to a new MELD level of 19-24. The patient’s waiting time at this new level starts at 0 days). Waiting time is only used as a tie-breaker when patients have the same MELD score.
The four MELD levels are:
greater than or equal to 25
24-19
18-11
less than or equal to 10
Lab Test Frequency
MELD score greater than or equal to 25; Labs needed every 7 days
MELD score 24-19; Labs needed every 30 days
MELD score 18-11; Labs needed every 90 days
MELD score less than or equal to 10; Labs needed every year
--------------------------------------------------------------------------------------------------
My point was not whether your husband could or couldn't get on the transplant list now. A transplant center has the only specialists that can care for him and manage the complications of cirrhosis. The reality is that very few patients get listed and then get a transplant within months. Many of us wait for years to get a transplant. In the meantime we try to stay as healthy as possible so we suffer less and we need more and more treatments as our diseases progress to stay alive long enough to wait for a liver transplant.
Advanced Decompensated Cirrhosis has many complications that can be fatal. Your husband has already experienced some of them. Variceal bleeding whether vomiting or defecating blood, Infected ascites fluid, hepatic encephalopathy coma, uncontrollable infections, fluid in his lungs, etc. Also since your husband has alcoholic cirrhosis he has an increased chance of developing liver cancer (HCC). I hope he is having surveillance every 6 months with an ultrasound and AFP blood test. If not caught early, liver cancer is one of the deadliest cancers. The only cure is a liver transplant before the cancer spreads or too large or too many tumors grow. I have liver cancer and I can tell you it is nothing you ever want to have happen to anyone you care about.
Without adequate care of a hepatologist and a team of other specialist doctors (like the Interventional Radiologists (IR) that did his TIPS procedure) I'm afraid your husband's prognosis is poor.
Good luck!
Hector
COMMUNITY LEADER
Hi Kathy,
He can register with the transplant center and begin treatment it will be up to the center to list him if and when they feel it is necessary although they will not list him until he has six months of documented sobriety. When a person is first diagnosed with alcoholic cirrhosis you will see the most improvement in the beginning since the source (alcohol) causing the damage has been removed. After that hopefully what your left with is a liver capable meeting the body’s needs.
Another idea to consider is with ever blood lab test or imaging test request a copy. There is normally no charge. Bring home the lab results and place them in a folder and repeat with every test. Get familiar with how to read the test and what each item means. Compare one to the last and set a reasonable goal to change the results to bring it back in to range. This can be done through diet and exercise. It can be quite rewarding at times and he is the one to benefit. You can even go as far as to create a spreadsheet like I have done here to gain a better overview of his condition. http://www.medhelp.org/user_photos/show/308346?personal_page_id=1830091
You seem very motivated and that’s great! You’re on the right track. Take care,
Randy
He can register with the transplant center and begin treatment it will be up to the center to list him if and when they feel it is necessary although they will not list him until he has six months of documented sobriety. When a person is first diagnosed with alcoholic cirrhosis you will see the most improvement in the beginning since the source (alcohol) causing the damage has been removed. After that hopefully what your left with is a liver capable meeting the body’s needs.
Another idea to consider is with ever blood lab test or imaging test request a copy. There is normally no charge. Bring home the lab results and place them in a folder and repeat with every test. Get familiar with how to read the test and what each item means. Compare one to the last and set a reasonable goal to change the results to bring it back in to range. This can be done through diet and exercise. It can be quite rewarding at times and he is the one to benefit. You can even go as far as to create a spreadsheet like I have done here to gain a better overview of his condition. http://www.medhelp.org/user_photos/show/308346?personal_page_id=1830091
You seem very motivated and that’s great! You’re on the right track. Take care,
Randy
his bilirubin has been dropping, was 3 now it is 2.8. Do you know if this is high bilirubin?
Hi Hector
I know quite a bit about cirrhosis. I wanted to get opinions from others who have been thru this. Thanks for your input
I know quite a bit about cirrhosis. I wanted to get opinions from others who have been thru this. Thanks for your input
Hi Randy
Thanks so much for your reply. I have been researching cirrhosis and feel I am becoming very knoweldgable at this point. I did want feedback from some that have been thru this, and I appreciate it so much. I do have a question... can he register on a list if it has been under 6mos since he stopped drinking? He quit drinking right before we had to call 911, so it has been just about a month. Dont we have to wait until he has been sober for 6mos to get on a list?
Thanks so much for your reply. I have been researching cirrhosis and feel I am becoming very knoweldgable at this point. I did want feedback from some that have been thru this, and I appreciate it so much. I do have a question... can he register on a list if it has been under 6mos since he stopped drinking? He quit drinking right before we had to call 911, so it has been just about a month. Dont we have to wait until he has been sober for 6mos to get on a list?
COMMUNITY LEADER
Hello Kathyboo and welcome to MedHelp!
I am sorry to hear about your husband’s condition. I too have alcoholic cirrhosis. Diagnosed in March 2010.
What is TIPS?
Transjugular intrahepatic portosystemic shunt or (TIPS) is a shunt (tube) placed between the portal vein which carries blood from the intestines and intra-abdominal 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 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. If these veins going to the other organs enlarge, they are referred to as variceal veins or varices. Varices that form in the stomach and esophagus may rupture and bleed. This is most like what took place the night your husband was rushed to the hospital.
Stage 4 grade C is the final stage of cirrhosis but it is very possible to survive for many years. Let me explain to you how liver disease works, the short version.. Everything we ingest kills off liver cells but this is okay because this is how the liver works and it has an amazing ability to heal itself. Problem is when we abuse alcohol it kills off massive amounts of liver cells and the liver cannot produce new ones quick enough so scar tissue begins to form. We first call this fibrosis and in more severe cases cirrhosis. I cannot stress to you enough how important it is for your husband to maintain his sobriety for the rest of his life with no exceptions. Otherwise his disease will continue to advance and the outcome will be fatal.
Cirrhosis commonly occurs in two stages, compensated and decompensated. In first stage of liver damage, the liver still has the ability to function normally or compensate for the damage. When extensive damage occurs and the liver can no longer function normally, decompensation occurs. You can read more about decompensated symptoms at http://www.livestrong.com/article/210239-decompensated-liver-disease-symptoms/
Decompensated symptoms in many cases can be treated but as the disease progresses they will become more severe and unmanageable. Treatments involve medication, diet, exercise and abstinence. The objective is to stop any further advancement and the areas of the liver that are not permanently damaged may recover. Although it is possible the amount of damage is too great and the liver cannot recover in which case liver transplant should be considered.
Regardless it is important your husband registers with a transplant center in order to receive the best treatment available. This does not mean he needs a transplant but quality of treatment he will receive will far outweigh treatment from any other facility no matter how good the intentions.
Since your husband has had the TIPS procedure it is important you both learn about Hepatic Encephalopathy (HE). http://www.nlm.nih.gov/medlineplus/ency/article/000302.htm
So as you can see there are many variables to consider and everyone’s body will react differently making prognosis near impossible to make at this point. I hope this helps you out, there is a lot to learn about cirrhosis and it will be important you both are active in learning as much as you can. Please feel welcome to post as often as you like and our members will be glad to help! I hope the best for you both!
Randy
COMMUNITY LEADER
'What do you think his long term prognosis is?'
Only a hepatologist can evaluate that.
Yes, he needs a liver transplant and he should be listed ASAP!
You should find that nearest liver transplant center and have his doctor or you should setup up an appointment to be evaluated for a liver transplant soon. Waiting is very dangerous!
Hopefully he has stopped drinking. As many transplant center require 6 months to 1 year abstinence from alcohol to be listed for a liver transplant.
I am afraid you husband is very ill and will need a liver transplant soon in order to continue living. The complications he is having such as vomiting blood can be life-threatening.
'He has lost 50 lbs, lost hair in the back of his head- bald patches, seems very malnourished- dry dry skin etc. '
These are all complication from advanced liver disease.
Hasn't someone told you all this before?
'fluid in his lungs' = Hepatic Hydrothorax
The vast majority of patients with hepatic hydrothorax have end-stage liver disease. Hydrothorax is uncommon, and is found in 4–6% of all patients with cirrhosis and up to 10% in patients with decompensated cirrhosis. Although ascites is usually present, hydrothorax can occur in the absence of ascites. Most of them require liver transplantation. Until the performance of transplantation, other therapeutic modalities should be applied in order to relieve symptoms and prevent pulmonary (lung) complications
Whoever did his TIPS procedure knows his liver is failing and without a transplant his prognosis is poor. TIPS is not done for any other reason but very advanced liver disease.
I would call a transplant center tomorrow. Time is of the essence. Many complications of advanced cirrhosis can be fatal.
Best of luck.
Hector
I am currently waiting for a life saving liver transplant.
Only a hepatologist can evaluate that.
Yes, he needs a liver transplant and he should be listed ASAP!
You should find that nearest liver transplant center and have his doctor or you should setup up an appointment to be evaluated for a liver transplant soon. Waiting is very dangerous!
Hopefully he has stopped drinking. As many transplant center require 6 months to 1 year abstinence from alcohol to be listed for a liver transplant.
I am afraid you husband is very ill and will need a liver transplant soon in order to continue living. The complications he is having such as vomiting blood can be life-threatening.
'He has lost 50 lbs, lost hair in the back of his head- bald patches, seems very malnourished- dry dry skin etc. '
These are all complication from advanced liver disease.
Hasn't someone told you all this before?
'fluid in his lungs' = Hepatic Hydrothorax
The vast majority of patients with hepatic hydrothorax have end-stage liver disease. Hydrothorax is uncommon, and is found in 4–6% of all patients with cirrhosis and up to 10% in patients with decompensated cirrhosis. Although ascites is usually present, hydrothorax can occur in the absence of ascites. Most of them require liver transplantation. Until the performance of transplantation, other therapeutic modalities should be applied in order to relieve symptoms and prevent pulmonary (lung) complications
Whoever did his TIPS procedure knows his liver is failing and without a transplant his prognosis is poor. TIPS is not done for any other reason but very advanced liver disease.
I would call a transplant center tomorrow. Time is of the essence. Many complications of advanced cirrhosis can be fatal.
Best of luck.
Hector
I am currently waiting for a life saving liver transplant.
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