Aa
more swelling after paracintesis (sic)
Hi all: My husband had the paracentesis procedure done on Feb. 28. He saw his gi dr. less than a month later. She was taken back by his condition and said there should be no more waiting. She then turned to me and said "what are your plans?" OMG I almost fell off my chair. I said you're the doctor. What do you plan for him. As I mentioned before, I made an appointment for him to see a Hepatologist end of May. I'm afraid that date is too far away. Anyway, she sent him for blood work, and ultrasound (they said he had gallstones...) and two days later for the paracentisis. It is now only two weeks later and he seems to be developing bumps on top on his enlarged stomach with a slightly puffy line running up his chest from the stomach. He is complaining of upset stomach and has a bad taste, not burning, in his throat. I will appreciate any advice you may have. I don't know whether to wait until morning to call his doctor or call an ambulance, which I know he won't want to do. Thank you so much. mj
He has become very boney and his skin is hanging.
This is the wasting that happens because his liver is no longer able to process foods properly. Ensure is a very good protein drink. Easy to digest and lots of protein. He can have fats like butter. Just use saltless butter. Diet is number one, then he should increase his diuretics to reduce the fluid. At an advanced stage he could have refractory ascites where nothing will manage it. Hope he is not there yet.
-----------------------------------------------------------------------------------
Maintaining Health While Waiting for Transplant
http://www.dukehealth.org/repository/dukehealth/2010/02/05/13/31/36/5425/Liver-HealthWhileWaiting.pdf
"Malnutrition is also a significant complication of chronic liver disease. Following specific dietary guidelines can decrease all of these complications of liver disease. The guidelines are as follows:
Limit sodium (or salt) intake in your diet.
High sodium can lead to an increase in fluid buildup in the abdomen. Too much sodium can also cause fluid retention in other parts of your body, usually seen in the ankles. High sodium also causes increased blood pressure.
Never add salt to food. Keep the salt shaker
off the table.
Do not cook with salt or salt containing seasonings.
Use herbs and spices in cooking to replace salt.
Avoid foods with visible salt like crackers, chips,
pretzels, salted nuts, salted popcorn and salted
french fries.
Limit highly processed foods. Canned, preserved
and processed foods contain high amounts of
sodium. Watch out for processed meats, cheeses,
canned soups, frozen dinners, and pickles.
Limit dinner and side dish mixes that come with
sauce or seasoning packages (like Hamburger Helper,
Rice-a-Roni, macaroni and cheese, and au gratin
potato mixes).
Limit high sodium sauces (like soy sauce, canned
spaghetti sauce, and packaged sauce, gravy
and seasoning mixes).
Eat a healthy diet.
It is important that you are in good nutritional health
for liver transplant. You will recover faster and generally
do better. When your body doesn't receive the nutrients
it needs, it takes the protein from your muscles for energy.
This causes weight loss and decreases in muscle mass
and, therefore, strength. A balanced diet with adequate calories, proteins, fats, and carbohydrates can help the damaged liver regenerate new liver cells.
The diet should be high in complex carbohydrates (55-60% of calories), low in total fat (25-30% of calories) and moderate in protein (15 - 20% of
calories).
Five or six smaller meals should be eaten per day.
Choose a variety of fruits and vegetables daily.
Choose a variety of grains each day, especially
whole grains.
Choose a diet that is low in saturated fat
and cholesterol and moderate in total fat.
Choose beverages and foods to moderate your
intake of sugars.
Aim for a healthy weight.
Being overweight increases your risk of developing
diabetes, high blood pressure, and heart disease.
Obesity can also cause complications with surgical
wound healing following liver transplant. Eating a
healthy diet and being physically active every day
are very important for weight loss.
Being below your ideal body weight for your height
can also cause increases in malnutrition and surgical
complications. Eating a healthy diet and being
physically active are also very important to help gain
weight and improve muscle mass.
Your physician or dietitian will help you determine
what a healthy weight is for you. Your dietitian can
help you develop a meal plan for either weight loss
or weight gain.
You may need to limit your fluid intake.
Your physician will decide if this is necessary."
-------------------------------------------------------------------------------------------------
How long have you been ill and how long have you been waiting.
Decompensated/ End-Stage Liver Disease for almost 3 years.
How old are you?
59 years old.
Does age impact getting a liver?
No. Not unless the patient is over 70. Mostly it is a matter of how healthy the rest of the patient is. No cardio issues or other major health issues. No drug/alcohol addiction etc.
Cheers!
Hector
This is the wasting that happens because his liver is no longer able to process foods properly. Ensure is a very good protein drink. Easy to digest and lots of protein. He can have fats like butter. Just use saltless butter. Diet is number one, then he should increase his diuretics to reduce the fluid. At an advanced stage he could have refractory ascites where nothing will manage it. Hope he is not there yet.
-----------------------------------------------------------------------------------
Maintaining Health While Waiting for Transplant
http://www.dukehealth.org/repository/dukehealth/2010/02/05/13/31/36/5425/Liver-HealthWhileWaiting.pdf
"Malnutrition is also a significant complication of chronic liver disease. Following specific dietary guidelines can decrease all of these complications of liver disease. The guidelines are as follows:
Limit sodium (or salt) intake in your diet.
High sodium can lead to an increase in fluid buildup in the abdomen. Too much sodium can also cause fluid retention in other parts of your body, usually seen in the ankles. High sodium also causes increased blood pressure.
Never add salt to food. Keep the salt shaker
off the table.
Do not cook with salt or salt containing seasonings.
Use herbs and spices in cooking to replace salt.
Avoid foods with visible salt like crackers, chips,
pretzels, salted nuts, salted popcorn and salted
french fries.
Limit highly processed foods. Canned, preserved
and processed foods contain high amounts of
sodium. Watch out for processed meats, cheeses,
canned soups, frozen dinners, and pickles.
Limit dinner and side dish mixes that come with
sauce or seasoning packages (like Hamburger Helper,
Rice-a-Roni, macaroni and cheese, and au gratin
potato mixes).
Limit high sodium sauces (like soy sauce, canned
spaghetti sauce, and packaged sauce, gravy
and seasoning mixes).
Eat a healthy diet.
It is important that you are in good nutritional health
for liver transplant. You will recover faster and generally
do better. When your body doesn't receive the nutrients
it needs, it takes the protein from your muscles for energy.
This causes weight loss and decreases in muscle mass
and, therefore, strength. A balanced diet with adequate calories, proteins, fats, and carbohydrates can help the damaged liver regenerate new liver cells.
The diet should be high in complex carbohydrates (55-60% of calories), low in total fat (25-30% of calories) and moderate in protein (15 - 20% of
calories).
Five or six smaller meals should be eaten per day.
Choose a variety of fruits and vegetables daily.
Choose a variety of grains each day, especially
whole grains.
Choose a diet that is low in saturated fat
and cholesterol and moderate in total fat.
Choose beverages and foods to moderate your
intake of sugars.
Aim for a healthy weight.
Being overweight increases your risk of developing
diabetes, high blood pressure, and heart disease.
Obesity can also cause complications with surgical
wound healing following liver transplant. Eating a
healthy diet and being physically active every day
are very important for weight loss.
Being below your ideal body weight for your height
can also cause increases in malnutrition and surgical
complications. Eating a healthy diet and being
physically active are also very important to help gain
weight and improve muscle mass.
Your physician or dietitian will help you determine
what a healthy weight is for you. Your dietitian can
help you develop a meal plan for either weight loss
or weight gain.
You may need to limit your fluid intake.
Your physician will decide if this is necessary."
-------------------------------------------------------------------------------------------------
How long have you been ill and how long have you been waiting.
Decompensated/ End-Stage Liver Disease for almost 3 years.
How old are you?
59 years old.
Does age impact getting a liver?
No. Not unless the patient is over 70. Mostly it is a matter of how healthy the rest of the patient is. No cardio issues or other major health issues. No drug/alcohol addiction etc.
Cheers!
Hector
Thanks, Bill. He had esophageal bleeding 5 years ago...It's been down hill ever since. Plus, he did not stop drinking right away. Just cut down. Not good. Thanks for the condition that you think he may have. Another person said the same thing. He will be seeing a hepatologist, but not soon enough...end of May. Thanks so much for your advice. mj
Hi Hector: I've corresponded with you before. I'm sorry you are going thru this horrible disease. He is not able to even go out to dinner. He eats once a day. I cook the meals and watch his salt. I do not cook w/salt but he has a little butter sometimes. It looks like he'll burst at any minute, plus he has a hernia that is as big as a large tomatoe. I took your advice and he has an appointment with a hepatologist. First date I could get was end of May. I keep calling to check for cancellations to not avail. He has become very boney and his skin is hanging. Sorry, hate to be so graphic. How long have you been ill and how long have you been waiting. How old are you? Does age impact getting a liver? Prayers to all who are suffering. mj
First and foremost. Your husband needs to see a hepatologist at a liver transplant center. ASAP! His GI is not qualified nor has the resources to care for your husband's condition. End-Stage Liver Disease.
"bumps on top on his enlarged stomach with a slightly puffy line running up his chest from the stomach."
It sounds to me you are able to see the collateral veins in his abdomen. All patients with End-Stage Liver Cancer have this complication of cirrhosis. They are called "Caput medusae". I don't want to bore with the technical aspects but this is another indication that your husband is not receiving proper treatment for his condition.
"He is complaining of upset stomach and has a bad taste, not burning, in his throat" He could have GERD or some other digestive condition.
Your husband needs to be seen at a transplant center (there are a number of very good ones in Boston) ASAP! Otherwise he will be continually be going in and out of the hospital and his condition will only get worse.
I don't want to scare you but you must realize that your husband is in the final stage of liver disease? It is only a matter of time before his liver fails.
He needs to get listed at a liver transplant center ASAP so he can get a transplant to continue living.
Also did the GI tell you are your husband that the fluid in his abdomen can get infected and can be life-threatening. There are so many other things that may be going on due to complications of his cirrhosis that can life threatening.
On a practical level.. is you husband taking diuretics for his ascites (fluid build-up in the abdomen? He should eat no processed foods. No restaurant food. It is full of salt/sodium. It causes his abdomen to fill with fluid. No canned food especially canned soups which are full of sodium. No canned food unless it says "No salt". He should only be eating vegetables, fruits grains and no red meat. He should be eating less than 2,000 or 1,500 mg of sodium per day or he will continue to need paracentesis on a regular basis which as I say can be fatal.
There are too many things your husband must do to feel as well as possible and only a transplant center can care for him.
Do whatever you have to do tomorrow but realize if you don't get your husband to a transplant center soon he's life is is danger.
How do I know this? I also have End-Stage Liver Disease and have many of your husband's symptoms myself. I am current waiting to a liver transplant to save my live as time is short when liver diseases progresses to End-Stage.
Best of luck to you both!
Hector
"bumps on top on his enlarged stomach with a slightly puffy line running up his chest from the stomach."
It sounds to me you are able to see the collateral veins in his abdomen. All patients with End-Stage Liver Cancer have this complication of cirrhosis. They are called "Caput medusae". I don't want to bore with the technical aspects but this is another indication that your husband is not receiving proper treatment for his condition.
"He is complaining of upset stomach and has a bad taste, not burning, in his throat" He could have GERD or some other digestive condition.
Your husband needs to be seen at a transplant center (there are a number of very good ones in Boston) ASAP! Otherwise he will be continually be going in and out of the hospital and his condition will only get worse.
I don't want to scare you but you must realize that your husband is in the final stage of liver disease? It is only a matter of time before his liver fails.
He needs to get listed at a liver transplant center ASAP so he can get a transplant to continue living.
Also did the GI tell you are your husband that the fluid in his abdomen can get infected and can be life-threatening. There are so many other things that may be going on due to complications of his cirrhosis that can life threatening.
On a practical level.. is you husband taking diuretics for his ascites (fluid build-up in the abdomen? He should eat no processed foods. No restaurant food. It is full of salt/sodium. It causes his abdomen to fill with fluid. No canned food especially canned soups which are full of sodium. No canned food unless it says "No salt". He should only be eating vegetables, fruits grains and no red meat. He should be eating less than 2,000 or 1,500 mg of sodium per day or he will continue to need paracentesis on a regular basis which as I say can be fatal.
There are too many things your husband must do to feel as well as possible and only a transplant center can care for him.
Do whatever you have to do tomorrow but realize if you don't get your husband to a transplant center soon he's life is is danger.
How do I know this? I also have End-Stage Liver Disease and have many of your husband's symptoms myself. I am current waiting to a liver transplant to save my live as time is short when liver diseases progresses to End-Stage.
Best of luck to you both!
Hector
“...It is now only two weeks later and he seems to be developing bumps on top on his enlarged stomach with a slightly puffy line running up his chest from the stomach...”
Your husband might be developing ‘caput medusae’; Some pictures are available on this page:
https://www.google.com/search?q=Caput+medusae+abdomen&btnG=Search&hl=en&safe=off&biw=1024&bih=653&gbv=2&tbm=isch&ei=6KmDT5_pJILc2gXVrOH0CA&sa=N
If this is the situation it isn’t usually an emergency and can probably be dealt with at the next routine appointment.
Probably the most immediate, dangerous situation for your husband are gastric or esophageal bleeds; these occur as a result of elevated blood pressure in the portal tract (portal hypertension) and if these burst a life-threatening situation can occur. Has he had an EGD (endoscope) recently to determine if any varices were present in the esophagus? If not, he should discuss this with his physician.
Recurrent ascites isn’t unusual; he might require multiple paracentisis to help manage the swelling.
If there is any doubt about his condition, he should go to the ER for evaluation; none of us are physicians in this discussion group. I’m sorry to hear of your husband’s condition; hopefully he’ll be evaluated for transplant soon. Best of luck to you both,
--Bill
Your husband might be developing ‘caput medusae’; Some pictures are available on this page:
https://www.google.com/search?q=Caput+medusae+abdomen&btnG=Search&hl=en&safe=off&biw=1024&bih=653&gbv=2&tbm=isch&ei=6KmDT5_pJILc2gXVrOH0CA&sa=N
If this is the situation it isn’t usually an emergency and can probably be dealt with at the next routine appointment.
Probably the most immediate, dangerous situation for your husband are gastric or esophageal bleeds; these occur as a result of elevated blood pressure in the portal tract (portal hypertension) and if these burst a life-threatening situation can occur. Has he had an EGD (endoscope) recently to determine if any varices were present in the esophagus? If not, he should discuss this with his physician.
Recurrent ascites isn’t unusual; he might require multiple paracentisis to help manage the swelling.
If there is any doubt about his condition, he should go to the ER for evaluation; none of us are physicians in this discussion group. I’m sorry to hear of your husband’s condition; hopefully he’ll be evaluated for transplant soon. Best of luck to you both,
--Bill
Hi sorry you and husband are going through this. Sounds like your husbands liver disease has progressed to a very serious condition. The reason your GI doc reacted the way they did is because most GI's don't deal with that many severe liver cases.
Get your husband to a hepatologist, even if that means going to a university teaching hospital's ER. There is usually a liver clinic with Hepatologist on staff.
Hope it works out.
Get your husband to a hepatologist, even if that means going to a university teaching hospital's ER. There is usually a liver clinic with Hepatologist on staff.
Hope it works out.
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