Aa
At a loss
Hello and thank you for taking the time to read this post. 10 days ago, my brother, who is 50, was diagnosed with chirrosis of the liver, Hep B and C. He was told his White blood platlets were 40 and was suppose to be 100. I don't know what that means really? Also, The trunk of his body is yellowish, the whites of his eyes are yellowing as well. We are not 10 days past the diagnosis and I am still trying to get him seen by a GI Dr. Everyone seems to be dragging their feet. I notice he is often tired, he is itchy at night, eating exsessivley but he is not at all overweight. His stomach was swollen, which is what first lead him to going to the hospital. He complains of his right side hurting him a lot. He is taking vitamins, some milk something or other that is suppose to help the liver. I just would like for someone to help me understand all of this, his general practice doctor told him she would suspect he had 6 to 9 mos. to live. How could she possibly know this? She is no expert, and certainly not God. Can someone please lead to to things he could do to boost the white blood platlets while I wait to get him in to a GI, can someone offer some suggestions about their experience or what I need to know, do, or expect. I am truly at a loss and I feel as though my hands are tied. Again, Thank you for your time.
Sincerely,
Chelle
Sincerely,
Chelle
Your brother is very lucky to have a sister like you, and it's so good that you're observing and learning and supporting him. Joe has a few challenges going on at the same time... his sobriety is a tremendous credit to his effort to get well, and the elevated ammonia levels can make him cranky and forgetful. It's important for the caregiver to have time away to recharge as well.
Just some logistical thoughts about what you said... no, no, NO powerade... start reading labels for ingredients. To minimize the edema and ascites he has to reduce salt intake and it's absolutely vital that he not consume more than 1000 mg a day of salt... the less the better. His ascites is adding to his discomfort, so important not to make it worse.
In addition to the things Hector mentioned above, the muscle cramping could also possibly be electrolyte imbalance or magnesium deficiency, but it's not something to guess at... it's important that you keep track of all of his symptoms and address them as necessary. Muscle wasting is very frequent with progressive liver disease, so it's essential that Joe stay as active as possible: walk, bike, swim... whatever he's up to doing physically, he should do.
If you find Joe develops constipation, which can worsen his symptoms, he can take a stool softener like Colace to help him have regular bowel movements, but remember that even over-the-counter products can be dangerous to someone with severe liver disease, so always check with his docs if he's having symptoms that you think need to be addressed.
When my husband was first diagnosed, I found this website a tremedous wealth of information:
http://emedicine.medscape.com/article/185856-overview
Registration is free, and very good, up-to-date information to help you better understand your brother's condition.
Have a wonderful Thanksgiving, and God bless you and your family. ~eureka
Just some logistical thoughts about what you said... no, no, NO powerade... start reading labels for ingredients. To minimize the edema and ascites he has to reduce salt intake and it's absolutely vital that he not consume more than 1000 mg a day of salt... the less the better. His ascites is adding to his discomfort, so important not to make it worse.
In addition to the things Hector mentioned above, the muscle cramping could also possibly be electrolyte imbalance or magnesium deficiency, but it's not something to guess at... it's important that you keep track of all of his symptoms and address them as necessary. Muscle wasting is very frequent with progressive liver disease, so it's essential that Joe stay as active as possible: walk, bike, swim... whatever he's up to doing physically, he should do.
If you find Joe develops constipation, which can worsen his symptoms, he can take a stool softener like Colace to help him have regular bowel movements, but remember that even over-the-counter products can be dangerous to someone with severe liver disease, so always check with his docs if he's having symptoms that you think need to be addressed.
When my husband was first diagnosed, I found this website a tremedous wealth of information:
http://emedicine.medscape.com/article/185856-overview
Registration is free, and very good, up-to-date information to help you better understand your brother's condition.
Have a wonderful Thanksgiving, and God bless you and your family. ~eureka
Hi Michelle!
I told him to drink Powerade a couple times a day. It has potassium.
* He should NOT take in extra potassium. The Spironolactone can cause too much potassium is retained. High levels of potassium can be dangerous. The best approach to diet is to eat a healthy normal diet. The only modifications should be low sodium, no red meat, moderately high protein (to minimize muscle wasting). This is the reason Spiro is combined with Furosemide (Lasix). They are given in particular dosages to retain the proper electrolytes balance.
"Spironolactone is a diuretic, which is commonly referred to as a "water pill." It is known as an "aldosterone antagonist," which means it blocks aldosterone receptors. Aldosterone is a hormone in the body that causes the body to retain water. By blocking aldosterone, spironolactone increases the amount of salt and water that the kidneys remove from the blood. This extra salt and water is passed out through urine. By increasing the amount of water removed from the blood, spironolactone causes a decrease in blood volume. Because of this effect, spironolactone can lower blood pressure and also help with water retention.
Spironolactone is a "potassium-sparing" diuretic, which means that it does not cause low potassium levels in the blood (like many other diuretics). In fact, spironolactone usually increases potassium levels, an effect which can be used to treat low potassium levels (hypokalemia)."
"Spironolactone is effective for treating water retention. The medicine is also approved to treat a special kind of water retention called ascites. Ascites is the accumulation of fluid in the abdominal cavity and is usually the result of liver disease."
"Output" = urinating. Okay, now I understand. That is not too much of an issue. Defecating is, as I mentioned before.
Stomach Pain, His belly is much bigger than normal. For Joe, he looks as though he is 4 mos. pregnant. So, I wonder if the pain is associated with the edema or the fact that he is eating a lot right now. My understanding is that people often lose weight with these diseases,
* Yes, the fluid retention of the abdomen is called "ascites". Again this is normal for person with End Stage Liver Disease. It is one of the primary complications that we have. It is very uncomfortable. Depending how extensive it is it can make it difficult to breathe and eat too as it can push against the diaphragm and stomach.
The diuretics should also reduce the ascites. As I said for me it takes about 1 week to notice any difference and about 2 weeks for the abdomen to go back to near normal. If the bloating was extreme there would have drain it at the hospital so that is good news.
* Viread is THE drug used to treat hepatitis B. And is relatively new. Three years since approval by FDA for hep C. Cleveland Clinic knows what they are doing. This is the drug your brother should be on.
The Viread won't make him feel better but will slow or stop the continual damage that hep B is inflecting on his liver.
"VIREAD works by interfering with the normal working of an enzyme that is essential for the hepatitis B virus (HBV) to be able to reproduce itself. VIREAD may help lower the amount of hepatitis B virus in your body by lowering the ability of the virus to multiply.1 VIREAD will not cure HBV. VIREAD may improve the condition of your liver." There is no "cure" for hep B like there is for hep C but it help to manage the disease.
What will make him feel better is the diuretics, lactulose and Xifaxan (Rifaximin). Is here taking any other meds? Maybe Nadolol?
Happy Thanksgiving!
Hector in Connecticut, for now.
I told him to drink Powerade a couple times a day. It has potassium.
* He should NOT take in extra potassium. The Spironolactone can cause too much potassium is retained. High levels of potassium can be dangerous. The best approach to diet is to eat a healthy normal diet. The only modifications should be low sodium, no red meat, moderately high protein (to minimize muscle wasting). This is the reason Spiro is combined with Furosemide (Lasix). They are given in particular dosages to retain the proper electrolytes balance.
"Spironolactone is a diuretic, which is commonly referred to as a "water pill." It is known as an "aldosterone antagonist," which means it blocks aldosterone receptors. Aldosterone is a hormone in the body that causes the body to retain water. By blocking aldosterone, spironolactone increases the amount of salt and water that the kidneys remove from the blood. This extra salt and water is passed out through urine. By increasing the amount of water removed from the blood, spironolactone causes a decrease in blood volume. Because of this effect, spironolactone can lower blood pressure and also help with water retention.
Spironolactone is a "potassium-sparing" diuretic, which means that it does not cause low potassium levels in the blood (like many other diuretics). In fact, spironolactone usually increases potassium levels, an effect which can be used to treat low potassium levels (hypokalemia)."
"Spironolactone is effective for treating water retention. The medicine is also approved to treat a special kind of water retention called ascites. Ascites is the accumulation of fluid in the abdominal cavity and is usually the result of liver disease."
"Output" = urinating. Okay, now I understand. That is not too much of an issue. Defecating is, as I mentioned before.
Stomach Pain, His belly is much bigger than normal. For Joe, he looks as though he is 4 mos. pregnant. So, I wonder if the pain is associated with the edema or the fact that he is eating a lot right now. My understanding is that people often lose weight with these diseases,
* Yes, the fluid retention of the abdomen is called "ascites". Again this is normal for person with End Stage Liver Disease. It is one of the primary complications that we have. It is very uncomfortable. Depending how extensive it is it can make it difficult to breathe and eat too as it can push against the diaphragm and stomach.
The diuretics should also reduce the ascites. As I said for me it takes about 1 week to notice any difference and about 2 weeks for the abdomen to go back to near normal. If the bloating was extreme there would have drain it at the hospital so that is good news.
* Viread is THE drug used to treat hepatitis B. And is relatively new. Three years since approval by FDA for hep C. Cleveland Clinic knows what they are doing. This is the drug your brother should be on.
The Viread won't make him feel better but will slow or stop the continual damage that hep B is inflecting on his liver.
"VIREAD works by interfering with the normal working of an enzyme that is essential for the hepatitis B virus (HBV) to be able to reproduce itself. VIREAD may help lower the amount of hepatitis B virus in your body by lowering the ability of the virus to multiply.1 VIREAD will not cure HBV. VIREAD may improve the condition of your liver." There is no "cure" for hep B like there is for hep C but it help to manage the disease.
What will make him feel better is the diuretics, lactulose and Xifaxan (Rifaximin). Is here taking any other meds? Maybe Nadolol?
Happy Thanksgiving!
Hector in Connecticut, for now.
To ALL OF YOU,
First of all, as today is Thanksgiving Day, I would like to take a minute to let you all know how thankful we are to each of you. Your thoughtful words, your encouragement, sharing your knowledge with us has left me without proper words to describe my gratitude. Today I celebrate each of you. Giving thanks for you.
Hector,
I am very sorry to hear you did not rest well. I hope tonight is a better night for you.
Joe's mental health is pretty good overall. At times he is forgetful, while telling me a story about something, often he will stop and ask me, where was I? or What was I going to say. Some days are better than others in regards to this. His mood, wow! He is often grumpy, irritable. It does a person good to have a break from him lol. He realizes this, he is apologetic afterwards, he is a bit testy at times. I chalk some of this up to depression, and the transition he is going through being sober. He is only a month in, so hopefully once Joe's health is stable, his mood will get better. We find ourselves laughing a lot at times, and he says. ahhhh it feels good to laugh!!!! He will say it with a sigh, almost as a relief.
"Edema", I think I have a better understanding of this. As I said to Bill, I am a worry wart by nature and I have been so fearful this meant something that could take his life and I not know how to help him, or overlook something. I feel better knowing this is common and the diuretics' will help with this.
The Cramping: Thank you for your clear explanation of this. It makes me feel better to know this too is common. I told him to drink Powerade a couple times a day. It has potassium and electrolytes it is so I thought it would be more helpful than just plain water?
Output, I am not sure what is causing that either unless he was so dehydrated that his body is simply retaining the water? It happened the same day he complained of the cramping. Yesterday, he had non cramping. I did not hear him complain about output either.
Bowel Movements, I have not ask, and he has not spoken of this. I will ask him about that one. If he is not having them regular, should he take a laxative or something?
Stomach Pain, His belly is much bigger than normal. For Joe, he looks as though he is 4 mos. pregnant. So, I wonder if the pain is associated with the edema or the fact that he is eating a lot right now. My understanding is that people often lose weight with these diseases, Joe eats all day, and when he wakes up through the night. The Doctor laughed and told him to keep on eating. lol Yes, the CT scan, X-RAYS, Ultrasound, were done. However, the file would not open for the specialist. So, I don't know about the possibity of cancer.
The Meds, Viread 300 mg. Joe got his medication yesterday. Now, hopefully he will see some improvements in how he feels?
I appreciate your previous offer to try to help Joe get his meds. He was able to get on a charity where they will pay for his medication for 1 year. Do we know anything about this medication Viread? Is this a common medication, has anyone had any experience wit his?
Again, I appreciate all of you. I printed out all of your kind words and help from this thread to share with my family today. I know they will also be as touched as Joe and I are by all of this.
Have A Happy and Save Thanksgiving,
First of all, as today is Thanksgiving Day, I would like to take a minute to let you all know how thankful we are to each of you. Your thoughtful words, your encouragement, sharing your knowledge with us has left me without proper words to describe my gratitude. Today I celebrate each of you. Giving thanks for you.
Hector,
I am very sorry to hear you did not rest well. I hope tonight is a better night for you.
Joe's mental health is pretty good overall. At times he is forgetful, while telling me a story about something, often he will stop and ask me, where was I? or What was I going to say. Some days are better than others in regards to this. His mood, wow! He is often grumpy, irritable. It does a person good to have a break from him lol. He realizes this, he is apologetic afterwards, he is a bit testy at times. I chalk some of this up to depression, and the transition he is going through being sober. He is only a month in, so hopefully once Joe's health is stable, his mood will get better. We find ourselves laughing a lot at times, and he says. ahhhh it feels good to laugh!!!! He will say it with a sigh, almost as a relief.
"Edema", I think I have a better understanding of this. As I said to Bill, I am a worry wart by nature and I have been so fearful this meant something that could take his life and I not know how to help him, or overlook something. I feel better knowing this is common and the diuretics' will help with this.
The Cramping: Thank you for your clear explanation of this. It makes me feel better to know this too is common. I told him to drink Powerade a couple times a day. It has potassium and electrolytes it is so I thought it would be more helpful than just plain water?
Output, I am not sure what is causing that either unless he was so dehydrated that his body is simply retaining the water? It happened the same day he complained of the cramping. Yesterday, he had non cramping. I did not hear him complain about output either.
Bowel Movements, I have not ask, and he has not spoken of this. I will ask him about that one. If he is not having them regular, should he take a laxative or something?
Stomach Pain, His belly is much bigger than normal. For Joe, he looks as though he is 4 mos. pregnant. So, I wonder if the pain is associated with the edema or the fact that he is eating a lot right now. My understanding is that people often lose weight with these diseases, Joe eats all day, and when he wakes up through the night. The Doctor laughed and told him to keep on eating. lol Yes, the CT scan, X-RAYS, Ultrasound, were done. However, the file would not open for the specialist. So, I don't know about the possibity of cancer.
The Meds, Viread 300 mg. Joe got his medication yesterday. Now, hopefully he will see some improvements in how he feels?
I appreciate your previous offer to try to help Joe get his meds. He was able to get on a charity where they will pay for his medication for 1 year. Do we know anything about this medication Viread? Is this a common medication, has anyone had any experience wit his?
Again, I appreciate all of you. I printed out all of your kind words and help from this thread to share with my family today. I know they will also be as touched as Joe and I are by all of this.
Have A Happy and Save Thanksgiving,
Hi Michelle.
I wasn't able to sleep so I am half awake writing this but I did want to get back to you before I go out today. So please forgive typos an abrupt transitions of thought....
Thanks for the clarification about the diet issue. All doctors are different so you may be correct. I don't have experience in the area of alcoholism and liver disease so you may be right.
Are Joe's mental symptoms very bad? I thought I recalled you mentioning some obvious symptoms of HE? Confusion and disorientation etc? Not everyone with liver disease has hepatic encephalopathy and it can manifest from minimal changes to extreme changes in mood and behavior in people that do have HE.
Also I believe Joe was prescribed lactulose and Xifaxan during his visit? They should take affect within a few days an will help to minimize any HE he may have.
A few other comments on some questions and statement yo made if I might....
"upper legs were swollen"
* This is called "edema" or fluid build-up. The diuretics will help to reduce the fluid but it could take a week or two for full affect. So this should improve soon. It is not dangerous just ugly for us that experience it. Especially if you are vain like me. ha ha
"His hands are cramping".
* This is another common symptoms of ESLD. You are correct, dehydration can and can cause this. So Joe needs to drink plenty of water. A potassium and sodium imbalance caused by the diuretics can also cause cramping. The doctor will constantly monitor Joe's blood tests to make sure this doesn't happen and modify the diuretic dosage to reduce an imbalance. Also cramping can happen for no known reason. People with ESLD in time learn to live with cramping. Cramps tend to come and go at various times and we just learn to get through it. But first it is good to see if their is a known reason for the cramping and then correct it, if possible. Cramping can be very painful. Many a night I have jump out of bed due to leg cramps and then tried to walk then off. Lots of 4 letter words usually accompany cramping. At least with me. ;-)
"He also said his output was very minimal yesterday/\. I am not sure what is causing this. He is on 2 water pills. He also complains of his upper stomach, under his breast bone on the left side hurting him."
* The some common affect of not having 3-4 bowel movements a day is increased HE. As the ammonia will build up in his intestine and then good into the blood which will go to his brain. That is the importance of "keeping things moving". This is potentially the thing that is the most concerning of all his symptoms. Boating and cramping though unpleasant, are not harmful per se, HE can be dangerous. As it can lead to erratic behavior, stupor and coma in the worse case. Also drinking plenty of water helps to keep bowel movements regular.
"He also complains of his upper stomach, under his breast bone on the left side hurting him"
* Frankly this is difficult to say what the pain is from. Contrary to popular belief there are no nerves in the liver itself. Did he mention the pain to his Cleveland Clinic doc? What did the doc say? When are livers are cirrhotic the liver shrinks so it is actually smaller than earlier in the disease when the liver in inflamed and larger. There are other tissues around the liver that do have nerves in them. I assume that Joe has had a CT scan or MRI with contrast to look for liver cancer?
Gee, I am sorry I don't think I can be helpful about liver pain. If it is a problem I would call Cleveland Clinic and see if they can explain the possible cause to Joe.
Good to hear from you.
Happy Thanksgiving!!!
Hector
I wasn't able to sleep so I am half awake writing this but I did want to get back to you before I go out today. So please forgive typos an abrupt transitions of thought....
Thanks for the clarification about the diet issue. All doctors are different so you may be correct. I don't have experience in the area of alcoholism and liver disease so you may be right.
Are Joe's mental symptoms very bad? I thought I recalled you mentioning some obvious symptoms of HE? Confusion and disorientation etc? Not everyone with liver disease has hepatic encephalopathy and it can manifest from minimal changes to extreme changes in mood and behavior in people that do have HE.
Also I believe Joe was prescribed lactulose and Xifaxan during his visit? They should take affect within a few days an will help to minimize any HE he may have.
A few other comments on some questions and statement yo made if I might....
"upper legs were swollen"
* This is called "edema" or fluid build-up. The diuretics will help to reduce the fluid but it could take a week or two for full affect. So this should improve soon. It is not dangerous just ugly for us that experience it. Especially if you are vain like me. ha ha
"His hands are cramping".
* This is another common symptoms of ESLD. You are correct, dehydration can and can cause this. So Joe needs to drink plenty of water. A potassium and sodium imbalance caused by the diuretics can also cause cramping. The doctor will constantly monitor Joe's blood tests to make sure this doesn't happen and modify the diuretic dosage to reduce an imbalance. Also cramping can happen for no known reason. People with ESLD in time learn to live with cramping. Cramps tend to come and go at various times and we just learn to get through it. But first it is good to see if their is a known reason for the cramping and then correct it, if possible. Cramping can be very painful. Many a night I have jump out of bed due to leg cramps and then tried to walk then off. Lots of 4 letter words usually accompany cramping. At least with me. ;-)
"He also said his output was very minimal yesterday/\. I am not sure what is causing this. He is on 2 water pills. He also complains of his upper stomach, under his breast bone on the left side hurting him."
* The some common affect of not having 3-4 bowel movements a day is increased HE. As the ammonia will build up in his intestine and then good into the blood which will go to his brain. That is the importance of "keeping things moving". This is potentially the thing that is the most concerning of all his symptoms. Boating and cramping though unpleasant, are not harmful per se, HE can be dangerous. As it can lead to erratic behavior, stupor and coma in the worse case. Also drinking plenty of water helps to keep bowel movements regular.
"He also complains of his upper stomach, under his breast bone on the left side hurting him"
* Frankly this is difficult to say what the pain is from. Contrary to popular belief there are no nerves in the liver itself. Did he mention the pain to his Cleveland Clinic doc? What did the doc say? When are livers are cirrhotic the liver shrinks so it is actually smaller than earlier in the disease when the liver in inflamed and larger. There are other tissues around the liver that do have nerves in them. I assume that Joe has had a CT scan or MRI with contrast to look for liver cancer?
Gee, I am sorry I don't think I can be helpful about liver pain. If it is a problem I would call Cleveland Clinic and see if they can explain the possible cause to Joe.
Good to hear from you.
Happy Thanksgiving!!!
Hector
You mentioned that Joe's feet and legs are swollen. This could be edema from ascites. I am not a doctor, but it would be good to keep a watch on that. If he is retaining fluid, his body is having difficulty moving fluids around, which can increase and become serious. I would recommend that he keep drinking water, walk and move around at least once an hour, decrease or cut out salt, and call the doctor to see if there is anything else that he should do. It could be that he is adjusting to the new diuretic and the new time that he takes the diuretic, but your best bet is to call the new doctor and ask for advice.
Advocate1955
Advocate1955
Hi Michelle,
Again, good luck to you and your brother Joe. When you have a moment look in the upper right hand portion of your screen. You’ll see ‘Inbox | Logout | My Shortcuts; there might be private messages waiting for you there. You can access these by clicking on Inbox if you like.
Best to you and Joe and have a good holiday-
--Bill
Again, good luck to you and your brother Joe. When you have a moment look in the upper right hand portion of your screen. You’ll see ‘Inbox | Logout | My Shortcuts; there might be private messages waiting for you there. You can access these by clicking on Inbox if you like.
Best to you and Joe and have a good holiday-
--Bill
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