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
So much on your plate.. I hope your mother is on the road to recovery, and really sorry to hear about your husband's job situation... sometimes it feels like when it rains it just pours. From what you are describing, it sounds like the ascites is under control with the drain, but the overall fluid retention is "edema", which cannot be drained.
Essentially, Joe's cells are holding on to water, within the cell 'walls', so it's not like ascites where there is a pocket of fluid to drain. My understanding is that diuretics usually do the trick, so I can't comment on what might be causing Joe to still continue to swell since they did not find blockage.
With liver dysfunction, it's not uncommon for the kidneys to also be compromised; have you communicated with Cleveland Clinic about Joe's pain level ... perhaps they can help with analgesics since the diuretics are not giving him comfort? Considering everything, I do believe it is in Joe's best interest to be transferred to CC. Infection is not uncommon with fluid retention in cirrhosis; you didn't mention if Joe is running a temperature, but important to rule out infection with his symptoms.
I wish there was more I could say or do, Chelle, but I don't have much experience with the symptoms Joe is having. Unfortunately Hector is indisposed today so won't be able to weigh in, but I really hope the Cleveland transfer will make Joe more comfortable and get his symptoms under control. Sending you healing thoughts and prayers. ~eureka
Essentially, Joe's cells are holding on to water, within the cell 'walls', so it's not like ascites where there is a pocket of fluid to drain. My understanding is that diuretics usually do the trick, so I can't comment on what might be causing Joe to still continue to swell since they did not find blockage.
With liver dysfunction, it's not uncommon for the kidneys to also be compromised; have you communicated with Cleveland Clinic about Joe's pain level ... perhaps they can help with analgesics since the diuretics are not giving him comfort? Considering everything, I do believe it is in Joe's best interest to be transferred to CC. Infection is not uncommon with fluid retention in cirrhosis; you didn't mention if Joe is running a temperature, but important to rule out infection with his symptoms.
I wish there was more I could say or do, Chelle, but I don't have much experience with the symptoms Joe is having. Unfortunately Hector is indisposed today so won't be able to weigh in, but I really hope the Cleveland transfer will make Joe more comfortable and get his symptoms under control. Sending you healing thoughts and prayers. ~eureka
Joe has been very sick. He is in pain on his right side and he hurts all over. Vomiting and very sick. Legs swollen as well as his trunk. He is weak as well. He is still retaining fluid which the Dr. says is in the "Walls" and there was not enough to drain but the drain site is still leaking.
The local hospital is transfering Joe to the Cleveland Clinic. I guess his urine looks like grape juice but the scan showed no blockage. They said he may have an infection in his trunk. The dr. just increased his lasix to 80 mg. in am and 40 in pm and increased another from 5 to 10 mg. I can't remember the name of it. but, I am affraid. He is in agony! On top of it all, my husband has found out his last day of work is Friday, he is losing yet another job which means I can not take off to go to Cleveland! I have to go to work as it will all fall on me now. What is going on with my brother guys??? IS this common? The dr. said friday, it was uncommon to have all these diaretics and not be able to unrinate. I am feeling a little stressed to say the least!!! I don't know what's going on!!!
The local hospital is transfering Joe to the Cleveland Clinic. I guess his urine looks like grape juice but the scan showed no blockage. They said he may have an infection in his trunk. The dr. just increased his lasix to 80 mg. in am and 40 in pm and increased another from 5 to 10 mg. I can't remember the name of it. but, I am affraid. He is in agony! On top of it all, my husband has found out his last day of work is Friday, he is losing yet another job which means I can not take off to go to Cleveland! I have to go to work as it will all fall on me now. What is going on with my brother guys??? IS this common? The dr. said friday, it was uncommon to have all these diaretics and not be able to unrinate. I am feeling a little stressed to say the least!!! I don't know what's going on!!!
Hey everyone,
I am sorry I have not been on here for a bit but, I have been picking up extra hours at work with the holidays among us as well as the fact I needed a break from this situation for a minute. This has become a bit too much. My 86 y/o mother has landed in the hospital with pneumonia on top of the worry of Joe's condition. Joe's other sister, Sharon took him back to the Cleveland Clinic where the Dr. has said, although Joe had gained over 22 lbs in 2 week that there was not enough to "drain" from him and that the fluid was within the "walls". I was not there so I really don't understand. The spot that Dr. tried to drain is still leaking since the attempted drain. A question about that, if there is not enough to drain, is this a good thing?
As of today, I had to call the Dr. because Joe is miserable. Bloated. Joe's Lasix was increased to 80 mg. in the a.m and 40 mg. in the evenings. His cramping has gotten better since eliminating one of the diaretics, the one with the potassium. He added another one that starts with an A but I can not remember the name of it. Anyway, He was on 5 mg. of that and also increased it to 10 mg. He will begin these increases today. (Saturday)
The Dr. did say it is not common for someone to take this much diaretic and not be able to urinate very much at all. Joe has a new scale which he will use every day to see if he is losing any weight but his legs and his belly are more swollen than I have ever seen them. He is having trouble breathing, even at rest. I think he would feel pretty good if it were not for all of the fluid retention. Although, he sleeps A LOT!
Thank you all so much for the contunued support. I have so many questions and so little time these days. I am feeling very anxious myself. I have been on edge and Sharon has been wonderful taking over. She is been working hard taking care of mom and Joe so please keep her in your prayers. She is an amazing woman with teenage grand-children she is raising and her husband was in a coma for 6 mos. after a surgery. So, she is burning the candles at both ends as well.
At work so I have to run, thanks a million everyone.
Much Love and Respect to All of You!
Michelle
I am sorry I have not been on here for a bit but, I have been picking up extra hours at work with the holidays among us as well as the fact I needed a break from this situation for a minute. This has become a bit too much. My 86 y/o mother has landed in the hospital with pneumonia on top of the worry of Joe's condition. Joe's other sister, Sharon took him back to the Cleveland Clinic where the Dr. has said, although Joe had gained over 22 lbs in 2 week that there was not enough to "drain" from him and that the fluid was within the "walls". I was not there so I really don't understand. The spot that Dr. tried to drain is still leaking since the attempted drain. A question about that, if there is not enough to drain, is this a good thing?
As of today, I had to call the Dr. because Joe is miserable. Bloated. Joe's Lasix was increased to 80 mg. in the a.m and 40 mg. in the evenings. His cramping has gotten better since eliminating one of the diaretics, the one with the potassium. He added another one that starts with an A but I can not remember the name of it. Anyway, He was on 5 mg. of that and also increased it to 10 mg. He will begin these increases today. (Saturday)
The Dr. did say it is not common for someone to take this much diaretic and not be able to urinate very much at all. Joe has a new scale which he will use every day to see if he is losing any weight but his legs and his belly are more swollen than I have ever seen them. He is having trouble breathing, even at rest. I think he would feel pretty good if it were not for all of the fluid retention. Although, he sleeps A LOT!
Thank you all so much for the contunued support. I have so many questions and so little time these days. I am feeling very anxious myself. I have been on edge and Sharon has been wonderful taking over. She is been working hard taking care of mom and Joe so please keep her in your prayers. She is an amazing woman with teenage grand-children she is raising and her husband was in a coma for 6 mos. after a surgery. So, she is burning the candles at both ends as well.
At work so I have to run, thanks a million everyone.
Much Love and Respect to All of You!
Michelle
Good point about the bread and cheese, OH.
We'll have to start calling it the BRA diet :).
Cheese is definitely on the "no" list too, Chelle, not only for salt, but dairy can increase ammonia and encephalopathy. Really hope Joe's doing better.
We'll have to start calling it the BRA diet :).
Cheese is definitely on the "no" list too, Chelle, not only for salt, but dairy can increase ammonia and encephalopathy. Really hope Joe's doing better.
In order to not consume sodium, all labels must be read for sodium content. Even some organic prepackaged salad contains salt. Things you'd never think of, have added sodium. Bread and cheese are often high in sodium.
So what can he eat? Preferably, freshly prepared food, vegetables, eggs, chicken, tofu, fruits, etc.
Good luck,
OH
So what can he eat? Preferably, freshly prepared food, vegetables, eggs, chicken, tofu, fruits, etc.
Good luck,
OH
Thanks Eureka! Good info.
(I have to catch an hour of sleep before going out today...zzzzzz)
Hector
(I have to catch an hour of sleep before going out today...zzzzzz)
Hector
Sorry to hear that Joe is so uncomfortable... he must NOT consume any sodium in order to help his condition improve. My understanding is the water pills do take some time to work, but if Joe's internal fluid sodium levels are high his body will continue to retain water.
You must explain to Joe that every piece of food and every drop of liquid he consumes that contains sodium (and Powerade falls into this category!) is going to make his pain worse. Since he is not urinating, he should drink 'moderate' amounts... enough to make sure he gets hydration, but so much as to add excess fluid, as it will only make his pain worse.
I wouldn't hesitate to leave another telephone message for the Cleveland Clinic; there should always be at least a physician on-call to answer urgent questions, and if Joe's discomfort is as he described, he may need some intervention or a visit to the ER if things don't improve.
Just a final thought, Chelle. As Bill mentioned, if fluid retention gets very bad for Joe they can intervene as necessary, but all interventional procedures carry some risk, so it is always best to use preventative strategies as much as possible to avoid having to pursue other therapies, though sometimes doing everything right isn't enough either.
Bananas should be fine for Joe. My husband's TP nutritionist had once mentioned "BRAT" as a safe food diet cirrhotics: bananas, rice, apple sauce, toast. Hope that helps, and hope Joe can be comfortable soon.
Take care of yourself! ~eureka
You must explain to Joe that every piece of food and every drop of liquid he consumes that contains sodium (and Powerade falls into this category!) is going to make his pain worse. Since he is not urinating, he should drink 'moderate' amounts... enough to make sure he gets hydration, but so much as to add excess fluid, as it will only make his pain worse.
I wouldn't hesitate to leave another telephone message for the Cleveland Clinic; there should always be at least a physician on-call to answer urgent questions, and if Joe's discomfort is as he described, he may need some intervention or a visit to the ER if things don't improve.
Just a final thought, Chelle. As Bill mentioned, if fluid retention gets very bad for Joe they can intervene as necessary, but all interventional procedures carry some risk, so it is always best to use preventative strategies as much as possible to avoid having to pursue other therapies, though sometimes doing everything right isn't enough either.
Bananas should be fine for Joe. My husband's TP nutritionist had once mentioned "BRAT" as a safe food diet cirrhotics: bananas, rice, apple sauce, toast. Hope that helps, and hope Joe can be comfortable soon.
Take care of yourself! ~eureka
Mi Michele,
Sorry just saw this...
"he is still not Urinating"
He should call Cleveland Clinic ASAP! Cleveland Clinic should have given your brother an emergency phone number in case things got worst.(?)
Otherwise call
Liver Transplant
Jacqui LeMaster
Department Supervisor
Phone: 216.444.8770 or 800.223.2273 x48770
Maybe she can direct him.
Joe is now under the care of Cleveland Clinic. This is very IMPORTANT. They need to coordinate all of his medical care. Even at the local hospital.
JOE SHOULD GO TO ER NOW! His kidneys could be shutting down. This is not uncommon in patients with very advance liver disease. The longer he doesn't urinate the worse the damage to his kidneys. As I said Cleveland Clinic MUST oversee his care. Joe is very ill and you don't want the ER doing anything that can make his condition worse.
Sorry but advanced liver disease is very complicated ad I can't cover all issues in any group of postings. Michelle I will try to send you with a person message my direct info so you can reach me 24/7. Look at your personal messages. I am not always online.
Hector
Sorry just saw this...
"he is still not Urinating"
He should call Cleveland Clinic ASAP! Cleveland Clinic should have given your brother an emergency phone number in case things got worst.(?)
Otherwise call
Liver Transplant
Jacqui LeMaster
Department Supervisor
Phone: 216.444.8770 or 800.223.2273 x48770
Maybe she can direct him.
Joe is now under the care of Cleveland Clinic. This is very IMPORTANT. They need to coordinate all of his medical care. Even at the local hospital.
JOE SHOULD GO TO ER NOW! His kidneys could be shutting down. This is not uncommon in patients with very advance liver disease. The longer he doesn't urinate the worse the damage to his kidneys. As I said Cleveland Clinic MUST oversee his care. Joe is very ill and you don't want the ER doing anything that can make his condition worse.
Sorry but advanced liver disease is very complicated ad I can't cover all issues in any group of postings. Michelle I will try to send you with a person message my direct info so you can reach me 24/7. Look at your personal messages. I am not always online.
Hector
Ah gosh, Michelle...
I’m sorry to hear your brother is having so much trouble. It’s entirely possible Joe’s cramps are due to electrolyte imbalance due to his diuretics. I can’t comment intelligently on his inability to urinate, although this might be connected somehow to this as well. The problem is without lab results and proper knowledge there’s really no way to figure out what’s wrong. He might need to go to the ER tonight if he’s that uncomfortable.
The abdominal swelling might be due to ascites; occasionally doctors remove as much as 6-7 liters (quarts) of fluid via a procedure known as paracentisis:
http://en.wikipedia.org/wiki/Paracentesis
When this is severe the patient will have a greatly enlarged abdomen, looking quite pregnant; however often it’s to a lesser degree as well. However, his doctor in Cleveland checked him for this less than a week ago and he was negative for ascites, correct? Do we know if he has a firm diagnosis of cirrhosis yet?
He really needs to be seen by a doctor. If the pain or cramping persists, if he develops a fever or he becomes disoriented get him to ER for evaluation. they can order labs STAT if required and offer therapeutic care.
It’s hard to imagine bananas or fruit being an issue right now. Be sure to journal these problems so you or he can call the doctor in Cleveland again when possbile. Best to you all,
--Bill
I’m sorry to hear your brother is having so much trouble. It’s entirely possible Joe’s cramps are due to electrolyte imbalance due to his diuretics. I can’t comment intelligently on his inability to urinate, although this might be connected somehow to this as well. The problem is without lab results and proper knowledge there’s really no way to figure out what’s wrong. He might need to go to the ER tonight if he’s that uncomfortable.
The abdominal swelling might be due to ascites; occasionally doctors remove as much as 6-7 liters (quarts) of fluid via a procedure known as paracentisis:
http://en.wikipedia.org/wiki/Paracentesis
When this is severe the patient will have a greatly enlarged abdomen, looking quite pregnant; however often it’s to a lesser degree as well. However, his doctor in Cleveland checked him for this less than a week ago and he was negative for ascites, correct? Do we know if he has a firm diagnosis of cirrhosis yet?
He really needs to be seen by a doctor. If the pain or cramping persists, if he develops a fever or he becomes disoriented get him to ER for evaluation. they can order labs STAT if required and offer therapeutic care.
It’s hard to imagine bananas or fruit being an issue right now. Be sure to journal these problems so you or he can call the doctor in Cleveland again when possbile. Best to you all,
--Bill
Hector and Eureka, Thank you so much for your help. I put a call into the doctor yesterday (Wednesday) about Joes muscle cramping and minimal output. Today he is in agony! He has been cramping all day, he has had a really bad day. His stomach is "tight" "Swollen". He sent me a photo of his stomach just a little bit ago and it is a little bigger than yesterday. In my opinion.
The cramping is making him out of his mind. He told me, he is still not Urinating. He feels as though he is drinking a lot and he is putting nothing out in comparison. He also said, "If I had a gun right now, I would shoot myself" I know he would not do that, but it is the pain talking.
He thinks it is the "water pills" that are making him cramp. He drinks water and it helps but, the pain soon returns. He is defacating fine as I discussed this with him after reading Hectors previous post.
I do not know what to do for him. It is 9:20 pm east coast time and I do not know how to help him, The agony in his voice is so hard to listen to. I told him to try a hot bath but he can not get into the tub.
the doc changed his water pills to taking them both at the same time in the morning as before he was taking one in the morning and one at night. It does appear this cramping started when he changed the time of his meds. Also, he said he took his pills at 4 this morning. It is now 9:22 pm. 18 hours later.
He did drink some poweade this morning. I told him to drink no more. He drank some yesterday as well. grrrrrr
I feel helpless!!!!!!! I wish the Doc. would have called back yesterday!!! Frustrated!
God Bless you everyone!
Michelle
The cramping is making him out of his mind. He told me, he is still not Urinating. He feels as though he is drinking a lot and he is putting nothing out in comparison. He also said, "If I had a gun right now, I would shoot myself" I know he would not do that, but it is the pain talking.
He thinks it is the "water pills" that are making him cramp. He drinks water and it helps but, the pain soon returns. He is defacating fine as I discussed this with him after reading Hectors previous post.
I do not know what to do for him. It is 9:20 pm east coast time and I do not know how to help him, The agony in his voice is so hard to listen to. I told him to try a hot bath but he can not get into the tub.
the doc changed his water pills to taking them both at the same time in the morning as before he was taking one in the morning and one at night. It does appear this cramping started when he changed the time of his meds. Also, he said he took his pills at 4 this morning. It is now 9:22 pm. 18 hours later.
He did drink some poweade this morning. I told him to drink no more. He drank some yesterday as well. grrrrrr
I feel helpless!!!!!!! I wish the Doc. would have called back yesterday!!! Frustrated!
God Bless you everyone!
Michelle
PS... and yes, absolutely laughter is always wonderful medicine. It's the joy that makes the spirit in the ill body keep on striving to get better.
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
I am absolutely overwhelmed by the incredible love, support and help that all medhelp members have shared throughout this post. It is like witnessing a miracle...and shows how much impact one can have on another's life. It actually brought me to tears as I read this and saw all the love, sharing of experiences and valuable advice given.
Chelle, I so admire your love, strength and support and Joe is very blessed to have you beside him through this and being his advocator. Hope you are keeping up your strength also as I am sure you must be exhausted, emotionally and physically.
Blessings to you all, Anita
Chelle, I so admire your love, strength and support and Joe is very blessed to have you beside him through this and being his advocator. Hope you are keeping up your strength also as I am sure you must be exhausted, emotionally and physically.
Blessings to you all, Anita
Thanks again, Everyone for the continues support and very kind words. I would hope every family has strong fmily values and are truly there for one another when it really counts.
Hector, "Michelle, Can you clarify what you mean here as I don’t understand exactly what you are asking. Thanks. “if everything is taken from Joe in such a short period of time, a possible relapse”?
“My thought is, Joe has stopped drinking, if everything is taken from Joe in such a short period of time, a possible relapse? Or, he will decide those things later as he has more accurate details of Joes condition? I could be wrong, just a thought.”
What I was trying to say as my thought on the doc. not restricting Joe's diet may be, that it is because of his recent sobriety. Maybe the doc. felt it best at that time to allow him red meats etc. in order to prevent Joe from feeling as thoughso many things were being taken from him all at once. If someone gets overwhelmed by anything, they can relapse. My thought was, I was wondering if this was not the reason to not restrict diet and do it very slowly?
Yesterday Joe's upper legs were swollen. His hands are cramping. He drank a little less than a gallon of water yesterday because he thought the hand cramps were from dehydration. 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. I have not spoken to him yet today as he went to spend the night with out mother. I think to give me a break as he is irritable.
Hector, "Michelle, Can you clarify what you mean here as I don’t understand exactly what you are asking. Thanks. “if everything is taken from Joe in such a short period of time, a possible relapse”?
“My thought is, Joe has stopped drinking, if everything is taken from Joe in such a short period of time, a possible relapse? Or, he will decide those things later as he has more accurate details of Joes condition? I could be wrong, just a thought.”
What I was trying to say as my thought on the doc. not restricting Joe's diet may be, that it is because of his recent sobriety. Maybe the doc. felt it best at that time to allow him red meats etc. in order to prevent Joe from feeling as thoughso many things were being taken from him all at once. If someone gets overwhelmed by anything, they can relapse. My thought was, I was wondering if this was not the reason to not restrict diet and do it very slowly?
Yesterday Joe's upper legs were swollen. His hands are cramping. He drank a little less than a gallon of water yesterday because he thought the hand cramps were from dehydration. 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. I have not spoken to him yet today as he went to spend the night with out mother. I think to give me a break as he is irritable.
Sounds like good news from Cleveland. I am glad to hear that your brother's prognosis is better than what you thought last week. Thank goodness you got in so quickly and got to a good center for treatment. It sounds like there will be lots of tests and follow up with Joe's new doctor. It can be a long road finding out the specifics and getting on a treatment plan, but it also sounds like the doctor is optimistic. Hopefully this will help you and Joe feel more optimistic too. Overall, hepatitis is generally a slow moving disease, so if Joe's liver damage is not severe, there will be time to treat and make informed decisions with his new doctor. Best wishes, and keep us posted.
Advocate1955
Advocate1955
Hi Chelle,
My very best to you and your brother. You are a blessing of a sister! Thank you for walking with him through this. I don't have anything to add to the expertise shown here, but I wanted to say how proud I am to be associated with such wonderful, caring strangers, who worked so hard to see a better outcome for your brother. This is truly self-less. When society so often has little respect for our fellow man, this reminds us that all is not lost.
God bless you for going the extra mile!! I am sharing this with the prayer group, as an example of what happens when we work together and do not lose faith.
My very best to you and your brother. You are a blessing of a sister! Thank you for walking with him through this. I don't have anything to add to the expertise shown here, but I wanted to say how proud I am to be associated with such wonderful, caring strangers, who worked so hard to see a better outcome for your brother. This is truly self-less. When society so often has little respect for our fellow man, this reminds us that all is not lost.
God bless you for going the extra mile!! I am sharing this with the prayer group, as an example of what happens when we work together and do not lose faith.
Hi Michelle!
Here are my comments on your post...
“It sounded very hollow when he did that”.
He could be checking for the hardness and shrinkage of the liver and for ascites (fluid stored in the abdomen). It usually gives a thud sound when tapped of the sides of the abdomen.
“He than had Joe sit up and put his arms straight out while holding his hands upright. It appeared he was looking at the steadiness of Joes hands and arms”?
This is a test for hepatic encephalopathy (he-PAT-ik en-sef-ah-LOP-ah-the)) (HE). Persons with HE except Minimum HE will display an involuntary flapping of their hands.
“Telling us of the red meat possibilities. Told us if he ever became confused to go to the ER immediately.
Again this is due to HE. The liver normally filters toxins such as ammonia created when digesting red meat for example. But when a person has advanced liver disease the liver is unable to perform all of its functions well and the toxins get into the blood and flow to the brain.
Here are the signs to look for. NOTE: The patient himself will not know they are behaving oddly most of the time. Only someone else can see it. It is like the drunk driver who thinks he is driving great while in reality he is weaving all over the road.
Here are the signs of HE to watch for, from mild to extreme.
*Short attention span
*Drowsiness
*Changes in sleeping habits and difficulty in speaking or writing may occur.
*Confusion and amnesia (inability to recall past events).
*The breath may have a musty sweet odor.
*Flapping motion of the hands when the arms are outstretched and muscle stiffness may also occur.
*Sleepiness, decreased awareness, and coma may occur with severe hepatic encephalopathy.
Okay so Joe has Hepatitis B. They are still testing with he has Hepatitis C also. Good to know.
To read more about Hepatitis B and Joe's drug follow this link.
http://www.viread.com/en/learn_about_hepatitis_b.aspx
“The doc also said, he thinks what is happening was that Joe has recently contracted this hep B or that the hep B is what is causing the liver to show these some symptoms of the cirrhosis.”
If you don’t mind I would like to help you clarify the above two statements for your own understanding. Joe could have recently been infected by hepatitis B. That is possible, but cirrhosis (scaring of the liver) takes 20-40 years to develop. So this means something, Hepatitis B, C, alcohol or many other things that can cause advanced liver disease over decades has damaged his liver.
“He wants to do an endoscopy and a colonoscopy.
This is to look for varices. They occur in persons with cirrhosis. When the liver becomes scared, the blood that normally passes up from the lower body through the liver must find another path to get back to the heart. So what happens is the blood flow through other vessels that are not designed to carry this extra amount of blood. So they can burst due to the increase blood pressure. This is a dangerous complication of cirrhosis as it can cause a person to bleed out if they don’t get to an ER and have the bleeding stopped.
“Eventually he will have another CT scan of his liver. Not sure when. but, the Doctor could not open the CD ROM from the hospital with the Ultrasound, CT Scans, Xrays and whatever else was on there”.
This is usually caused by an incompatibility between the formatting of the CD between the two hospitals. The Clinic’s doctor wants to see Joe’s liver. All persons with cirrhosis can develop liver cancer (HCC) like myself. Especially persons infected with Hepatitis B. (I was exposed to both Hep B and C). So the doctor is doing the right thing. Even if he gets the imaging data from the other hospital(s) Cleveland Clinic probably has better, higher resolution machines which can see more of what may be going on.
“When we were leaving the office, the Doctor gave Joe a hug...”
This is the type of doc that everyone should have! Great!!!
-----------------------------------------------------------------------------------------------------
****Tenofovir Dixoproxil 300 mg****
VIREAD® (VEER-ee-ad)
(tenofovir disoproxil fumarate)
Gilead the manufacturer has the “Advancing Access” program. Joe may be able to get it for FREE.
With the VIREAD My Access program you can get financial assistance if you’re:
• Insured with a high co-pay
• Uninsured and pay cash
• Uninsured with a low income
Here is the number to call to see if he qualifies for the program.
VIREAD calling 1-877-627-0415 today to see if you qualify for the My Access program.
He will probably need to prove how much he makes so he needs to be prepared. I would just tell them that he is in a desperate situation ad he really needs.
FYI: If there is any problem let me know as I have a friend who used to work at Gilead until about 6 months ago and I may be able to find out who’s in charge and I will advocate for Joe myself. They are about 45 miles from where I live. I can’t promise anything but I will do what I can.
Also...I'm sure your doc told Joe about the possible serious side effects of this drug, but here they are so you have them in writing.
Call your healthcare provider right away if you get the following symptoms which could be signs of lactic acidosis:
• feeling very weak or tired
• have unusual (not normal) muscle pain
• have trouble breathing
• have stomach pain with
• nausea (feel sick to your stomach)
• vomiting
• feel cold, especially in your arms and legs
• feel dizzy or lightheaded
• have a fast or irregular heartbeat
---------------------------------------------------------------------------------------------------------
“…muscle loss and that the protein intake was good and at this point the benefit outweighs the risks”.
This is what happens to all patients with End-Stage Liver Disease. So it is important to maintain good protein levels. Chicken and fish are good sources of protein. Also the protein drink “Ensure” makes a drink (you can find it at CVS, Walgreens and some supermarkets) that many patients use. It provides up to 30 grams of protein per bottle and comes in chocolate, vanilla and strawberry and tastes great in my opinion. Many very patients are enable to eat but the can still drink their Insure.
Michelle, Can you clarify what you mean here as I don’t understand exactly what you are asking. Thanks. “if everything is taken from Joe in such a short period of time, a possible relapse”?
“My thought is, Joe has stopped drinking, if everything is taken from Joe in such a short period of time, a possible relapse? Or, he will decide those things later as he has more accurate details of Joes condition? I could be wrong, just a thought.”
You did an awesome thing to help you brother and support him when the medical people really let him down. You should be very proud of yourself. Wow what a great sister and person you are!!! Take care of yourself. Keep posting when you have new questions or updates and everyone here in this community will help your brother step by step. You are now headed in the right direction and the doctor sounds awesome too.
(((hugs)))
Hector
Here are my comments on your post...
“It sounded very hollow when he did that”.
He could be checking for the hardness and shrinkage of the liver and for ascites (fluid stored in the abdomen). It usually gives a thud sound when tapped of the sides of the abdomen.
“He than had Joe sit up and put his arms straight out while holding his hands upright. It appeared he was looking at the steadiness of Joes hands and arms”?
This is a test for hepatic encephalopathy (he-PAT-ik en-sef-ah-LOP-ah-the)) (HE). Persons with HE except Minimum HE will display an involuntary flapping of their hands.
“Telling us of the red meat possibilities. Told us if he ever became confused to go to the ER immediately.
Again this is due to HE. The liver normally filters toxins such as ammonia created when digesting red meat for example. But when a person has advanced liver disease the liver is unable to perform all of its functions well and the toxins get into the blood and flow to the brain.
Here are the signs to look for. NOTE: The patient himself will not know they are behaving oddly most of the time. Only someone else can see it. It is like the drunk driver who thinks he is driving great while in reality he is weaving all over the road.
Here are the signs of HE to watch for, from mild to extreme.
*Short attention span
*Drowsiness
*Changes in sleeping habits and difficulty in speaking or writing may occur.
*Confusion and amnesia (inability to recall past events).
*The breath may have a musty sweet odor.
*Flapping motion of the hands when the arms are outstretched and muscle stiffness may also occur.
*Sleepiness, decreased awareness, and coma may occur with severe hepatic encephalopathy.
Okay so Joe has Hepatitis B. They are still testing with he has Hepatitis C also. Good to know.
To read more about Hepatitis B and Joe's drug follow this link.
http://www.viread.com/en/learn_about_hepatitis_b.aspx
“The doc also said, he thinks what is happening was that Joe has recently contracted this hep B or that the hep B is what is causing the liver to show these some symptoms of the cirrhosis.”
If you don’t mind I would like to help you clarify the above two statements for your own understanding. Joe could have recently been infected by hepatitis B. That is possible, but cirrhosis (scaring of the liver) takes 20-40 years to develop. So this means something, Hepatitis B, C, alcohol or many other things that can cause advanced liver disease over decades has damaged his liver.
“He wants to do an endoscopy and a colonoscopy.
This is to look for varices. They occur in persons with cirrhosis. When the liver becomes scared, the blood that normally passes up from the lower body through the liver must find another path to get back to the heart. So what happens is the blood flow through other vessels that are not designed to carry this extra amount of blood. So they can burst due to the increase blood pressure. This is a dangerous complication of cirrhosis as it can cause a person to bleed out if they don’t get to an ER and have the bleeding stopped.
“Eventually he will have another CT scan of his liver. Not sure when. but, the Doctor could not open the CD ROM from the hospital with the Ultrasound, CT Scans, Xrays and whatever else was on there”.
This is usually caused by an incompatibility between the formatting of the CD between the two hospitals. The Clinic’s doctor wants to see Joe’s liver. All persons with cirrhosis can develop liver cancer (HCC) like myself. Especially persons infected with Hepatitis B. (I was exposed to both Hep B and C). So the doctor is doing the right thing. Even if he gets the imaging data from the other hospital(s) Cleveland Clinic probably has better, higher resolution machines which can see more of what may be going on.
“When we were leaving the office, the Doctor gave Joe a hug...”
This is the type of doc that everyone should have! Great!!!
-----------------------------------------------------------------------------------------------------
****Tenofovir Dixoproxil 300 mg****
VIREAD® (VEER-ee-ad)
(tenofovir disoproxil fumarate)
Gilead the manufacturer has the “Advancing Access” program. Joe may be able to get it for FREE.
With the VIREAD My Access program you can get financial assistance if you’re:
• Insured with a high co-pay
• Uninsured and pay cash
• Uninsured with a low income
Here is the number to call to see if he qualifies for the program.
VIREAD calling 1-877-627-0415 today to see if you qualify for the My Access program.
He will probably need to prove how much he makes so he needs to be prepared. I would just tell them that he is in a desperate situation ad he really needs.
FYI: If there is any problem let me know as I have a friend who used to work at Gilead until about 6 months ago and I may be able to find out who’s in charge and I will advocate for Joe myself. They are about 45 miles from where I live. I can’t promise anything but I will do what I can.
Also...I'm sure your doc told Joe about the possible serious side effects of this drug, but here they are so you have them in writing.
Call your healthcare provider right away if you get the following symptoms which could be signs of lactic acidosis:
• feeling very weak or tired
• have unusual (not normal) muscle pain
• have trouble breathing
• have stomach pain with
• nausea (feel sick to your stomach)
• vomiting
• feel cold, especially in your arms and legs
• feel dizzy or lightheaded
• have a fast or irregular heartbeat
---------------------------------------------------------------------------------------------------------
“…muscle loss and that the protein intake was good and at this point the benefit outweighs the risks”.
This is what happens to all patients with End-Stage Liver Disease. So it is important to maintain good protein levels. Chicken and fish are good sources of protein. Also the protein drink “Ensure” makes a drink (you can find it at CVS, Walgreens and some supermarkets) that many patients use. It provides up to 30 grams of protein per bottle and comes in chocolate, vanilla and strawberry and tastes great in my opinion. Many very patients are enable to eat but the can still drink their Insure.
Michelle, Can you clarify what you mean here as I don’t understand exactly what you are asking. Thanks. “if everything is taken from Joe in such a short period of time, a possible relapse”?
“My thought is, Joe has stopped drinking, if everything is taken from Joe in such a short period of time, a possible relapse? Or, he will decide those things later as he has more accurate details of Joes condition? I could be wrong, just a thought.”
You did an awesome thing to help you brother and support him when the medical people really let him down. You should be very proud of yourself. Wow what a great sister and person you are!!! Take care of yourself. Keep posting when you have new questions or updates and everyone here in this community will help your brother step by step. You are now headed in the right direction and the doctor sounds awesome too.
(((hugs)))
Hector
So pleased for you and your brother that the visit to Cleveland went well and that you got good news there! Because 'acute' (recent) viral hepatitis infection can mimic some of the symptoms of cirrhosis, your brother's condition could be reflecting recent exposure; however, it's also possible that he actually has cirrhosis from chronic (long-term active) infection, so the additional testing should provide more information. If it's recent infection, that would be a good thing, because many adults who are exposed to hbv do not become chronic.
The endoscopy and colonscopy are important tests in case Joe actually has cirrhosis. Because liver stiffening up in cirrhosis can cause what's known as "varices" (collateral blood vessels that can burst and bleed), it is a routine test for folks with suspected cirrhosis. Both procedures can be done simultaneously, and they are done under sedation, so Joe need not worry about any discomfort... the worst part will be the prep, really.
If further testing does not confirm cirrhosis, your brother may not need additional imaging; the truth is, pictures and images don't really have high sensitivity in detecting cirrhosis. The gold standard for staging liver disease is biopsy, but it's also possible that the additional testing ordered may give the doctor additional indication one way or another. However, if cirrhosis is present, imaging should be done regularly every 3-6 months (MRI/CT or ultrasound) to rule out other concerns.
I agree with OH that Joe should avoid red meat unless cirrhosis is ruled out completely, and to keep salt to a minimum. As far as caffeine, he can enjoy -- there seems to be evidence that coffee is actually good for the liver -- I try to get my husband to drink coffee, but he hates it lol. The muscle wasting is a major concern in cirrhosis, so if Joe wants protein, he should fill up; he'll just have to get used to asking 'where's the beef?' :)
One of the things you can do at home to help keep an eye on Joe is to check his feet, ankles, and calves for swelling (edema) and to check his weight daily; water retention (ascites) usually shows itself in rapid weight gain, so it's OK if Joe puts on a pound or two the week after Turkey day, but if he's putting on 5-10 pounds a week, you know to hide the salt shakers and call the doc.
With the good news from Cleveland, I hope you and your brother can really enjoy Thanksgiving! Best wishes.~eureka
The endoscopy and colonscopy are important tests in case Joe actually has cirrhosis. Because liver stiffening up in cirrhosis can cause what's known as "varices" (collateral blood vessels that can burst and bleed), it is a routine test for folks with suspected cirrhosis. Both procedures can be done simultaneously, and they are done under sedation, so Joe need not worry about any discomfort... the worst part will be the prep, really.
If further testing does not confirm cirrhosis, your brother may not need additional imaging; the truth is, pictures and images don't really have high sensitivity in detecting cirrhosis. The gold standard for staging liver disease is biopsy, but it's also possible that the additional testing ordered may give the doctor additional indication one way or another. However, if cirrhosis is present, imaging should be done regularly every 3-6 months (MRI/CT or ultrasound) to rule out other concerns.
I agree with OH that Joe should avoid red meat unless cirrhosis is ruled out completely, and to keep salt to a minimum. As far as caffeine, he can enjoy -- there seems to be evidence that coffee is actually good for the liver -- I try to get my husband to drink coffee, but he hates it lol. The muscle wasting is a major concern in cirrhosis, so if Joe wants protein, he should fill up; he'll just have to get used to asking 'where's the beef?' :)
One of the things you can do at home to help keep an eye on Joe is to check his feet, ankles, and calves for swelling (edema) and to check his weight daily; water retention (ascites) usually shows itself in rapid weight gain, so it's OK if Joe puts on a pound or two the week after Turkey day, but if he's putting on 5-10 pounds a week, you know to hide the salt shakers and call the doc.
With the good news from Cleveland, I hope you and your brother can really enjoy Thanksgiving! Best wishes.~eureka
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