Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Susie - Welcome I am Jan, a 65 year old with cirrhosis of unknown origin. Unknown because they can't pin it down to one source. But, I have a family history of liver problems, was untreated and then undertreated for low thyroid for long periods of time, and I was extremely overweight for a time which was also related to the undertreatment of the thyroid condtion. I am in stage four as far as the last biopsy showed, but show little symptoms of advanced cirrhosis, and my blood work at the present time also doesn't show severe problems. The worst symptom is being tired all the time, waking up tired and unless I am in a situation where the adreneline really starts to flow, tired all the time. When the adreneline quits, then I am more tired than I would have been before it. But, I welcome the adreneline because that is when I can live, have some fun, almost forget all my medical problems (and I have artery problems - 6 stents in my heart, triple bypass last spring, carotid artery surgery, a stent to clear a path for my right leg, the thyroid I mentioned, neuropathy of hands and feet, arthritis with L1 to L5 and SI disks of the spine bone on bone, I know I have forgotten something) and a bad memory, feeling of being in a fog a great part of the time which is probably part of the cirrhosis. I am not on lactulose, beginning to wonder if I should be with the mental fog. I have some swelling in my legs and feet especially on the left side but no obvious acities. The best thing I have going for me is my faith, I know I am not alone even though it may seem so from my living situtation. And I refuse to give up my sense of humor, which can verge on the macabre at times. I was told when first diagnosed that I should stay out of crowds because of the decreased ability to fight anything off. After a bit of doing that, I found that depression was sneaking up on me so made the conscious decision to ignore that advice. Oh, forgot to tell you that I do not qualify for a transplant because of my age and other medical conditions. I have a 21 year old grandson who is living with me now. He had surgery for Chiari Malformation almost 3 years ago, the same condition Bobby's wife Sharon has (among others) I spent Wednesday with him in the emergency room because he has been having symptoms of a return for months, sometimes very severe so that he isn't able to work. He was calling it the flu, but nobody else in the house was catching it, and remember my vulnerability. I asked him repeatedly if the headaches and vomiting were like they were before his surgery, and he always denied it. But after two hours early Wednesday morning of almost constant dry heaves, I told him he wasn't going to work, that we were going to see a doctor even though he doesn't have insurance. The ct scan they did wasn't conclusive that this is what it is, but the symptoms are the same so they are treating him as if he is having a reoccurence, and sending him to a specialist. The one they suggested I don't care for, didn't seem to know what Chiari Malformation was when I mentioned it to him when I went to him for my neuropathy. He was 18 when he had the surgery, and the brain doesn't quit growing until a person is 25, and sometimes later, so it was something we were all aware of. But, he had been trying not to think about that possiblity. He told me in the er that he thought if he got through the surgery it would all be okay and he could start leading his life. Now he is wondering again. Yes, we had some serious conversation in that er room. But, we did a lot of laughing too, wondered sometimes what the staff was thinking, wondering why we were there if they hadn't seen his chart, wondering how we could laugh with this hanging over us. And the doctor who was treating him was the doctor who treated me the last time I was in the er, told me he thought I was having a heart attack and sent me off by helicopter to the Heart Institute Hospital in Phoenix because that is where I had my bypass. All of this above is leading to what I wanted to say ( I ramble a lot) For me the most important thing is to live while you are still living, take the best care of yourself you can, but don't limit yourself so much you might as well be dead. Now if you qualify for a transplant, that is a different story. Don't jeopardize that. But, I was told not to even go to church, that was four years or so ago. Too many people, too many germs. But my faith community is my life. You will also find that we have an active faith community here to. Join in if you like. Please don't be offended if you don't want to. We won't be. For many of us, that is what puts the fuel in our engines and we can't not talk about it. So, God Bless You and your brother. And give his wife a good quick kick in the pants.[?] I can't understand someone doing that. But, I guess we should be praying for her too. Your whole family sounds like a great bunch of people. Jan H On Sat, Jan 31, 2009 at 9:42 AM, abijann <no_reply > wrote: > Welcome to the group: > > I'm going to give you some links to go to that explains more about > this disease. On the group site there is a link section with sites > that have a lot more information. > > There are certain conditions that cirrhosis patients encounter > as the disease progresses. Most you can read about on these > websites. Just click on the links and they will take you there. > > (1)The liver makes proteins and also we get proteins from the foods > we eat. As the body uses these proteins, a byproduct is produced > known as Ammonia. The liver will take this ammonia and convert > it into a non toxic form known as Urea, so that it will be > removed from the body in the urine. Since the liver cells are > damaged or have started to die off, the functions that the liver > once did, also deteriorate. So the ammonia doesn't get changed > and it is in the blood and can go pass the blood brain barrier > and into the brain. This is true of other toxins also. > This causes confusion, disorientation, and can lead to a > coma if not treated. Others here have given and explained > the drugs to use for treatment. This condition is known > as ENCEPHALOPATHY. Encephalo stands for brain and pathy > stands for disease. > > (2)Another problem that can occur is Portal Hypertension. > The vein under the liver and that goes into the liver is > known as the Portal Vein. This is the vein where all the > blood from the abdomen goes to, to go into the liver to > be filtered. As the cells of the liver become damaged, > it can form scar tissue inside the liver that blocks the > flow of blood through the liver and to the cells of the liver. > So this blood tends to back up and cause pressure in this > vein. This is known as PORTAL HYPERTENSION. > What can happen then, is that the blood will then be pushed > into vessels that are not used to handling this amount of blood. > The body may also start to make more vessels known as collaterol > vessels to try and be sure that the blood get passed the liver > and into the heart. However, when the blood backs up into > these smaller vessel, there are weak spots there and they > can balloon outward (sort of like blowing up a balloon and > popping it) and they break open and bleed (vessels are known > as either VARICOSE VEINS OR VARIES). This is a > definite EMERGENCY. This bleeding has to be stopped. > Usually, the bleeding is in the esophagus and the patient will > throw up blood. It may look like streaks of blood, it may > be red, purple red, or like coffee grounds. The doctor will > go through the esophagus and can band them so the bleeding stops. > Some of these smaller other vessels may be seen in the > belly button area and the rectum, also. > > (3) The Spleen may become enlarged. That is also because of > the blood flow from the spleen to the liver is being backed > up. > > (4) The patient can develop fluid in the abdominal area. > This fluid is known as ASCITES. It is caused mostly because > the liver isn't able to make a protein well anymore that > usually keeps the fluids in a vascular system...but it now > seeps out...the protein is known as Albumin. It is also > known that the sodium level rises in the body when this > ascites develops. The fluid will keep collecting in the > abdominal region...this fluid can press on other organs: > the patient may not feel like eatting much because of the > pressure on the stomach. He may not be very comfortable, either. > He may start to have difficulty breathing. There is a > procedure that will take the fluid from the abdominal area, > known as PARACENTESIS. This will give the patient instant > relief. > > (5) The patient may have a build up of fluid in his extremities > also. The doctor will place him on a lower sodium diet and > may give him diuretics also. His sodium and potassium levels > need to stay within a certain range. That is because those > are the electrolytes that keep the heart beating in rhythm. > The doctor should be watching them closely. If this develops > in the legs and feet. Elevating the legs slightly will help. > Do not massage the areas...blood clots can develop and massaging > can move them out of this area and to the heart. > > (6) Patients can bleed alot easier now. That is because the > liver can no longer make clotting factors that helps the blood > to clot. You may notice that the patient bruises very easily > and develop what looks like blood blotches under the skin. > Try to remove anything that they can become harmed with. > Like removing rugs that don't have a rubber backing on or > pointed ends of furniture, etc. If they get cut, elevate > the area..if you can...and apply pressure for about 5 minutes. > If the bleeding continues, see the doctor. > > This information should give you a start of what can be > done for your brother and what could occur. > > There are many here who will help explain things to you...if > you have questions. Your brother has a wonderful sister. > > ............................................. > > All Liver Patients are told not to drink alcohol. Avoid > Grapefruit juice as this can interact with his medications. > > They are also told to inform the doctor of any medications > at all they are taking: this includes over the counter, > herbs, herbal teas, vitamins, minerals, supplements, > and prescriptions prescribed by other doctors. Most all > medications go through the liver first to be broken down > before going to the rest of the body. They are also told > to only take medications approved by the doctor or prescribed > by a doctor. Medications have to be adjusted according to > how much liver damage there is. > > Try to keep anyone who is sick, has been sick, or been around > others who have been sick...away from him. This will only > mean that he may end up taking more medications and will > reduce the chance of his body healing. > > He should be either with a Hepatologist or a Gastroenterologist. > > If he wants a liver transplant...here is also a site that > tells the process of being placed on the list: > > http://www.medicinenet.com/cirrhosis/article.htm > > http://www.mayoclinic.com/health/cirrhosis/DS00373 > > http://www.surgery.usc.edu/divisions/hep/patientguide/index.html > > I'm abijann. Again, Welcome to the group and I hope you and > your family will enjoy being with us. > > > -- Jan H Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Jan, You have been through so much and have such a positive outlook. Thats what I'm hoping for Jack. He spends so much time thinking about dying and very little time living. I recently purchased the book " The Last Lecture " by Randy Pausch for him in hopes that he would get encouragment from a man who was given 6 months to live. Randy inspired me..I had hoped he would inspire my brother. Unfortunatly his wife never gave him the book. I plan on getting it for him again soon. But I believe like you do that we have to get the most out of our life while we still can move about. Jack was always a very active man, that is until he got this news. Then he just seemed to sort of give up. I know that deep down inside though he still wants to do things and enjoy life. Thats another reason he has to read stories like yours and your grandson's. What an inspiration to not give up. Yep, my family is very close. We lost another brother to cancer 7 years ago. Thought I would never recover from that. But life does go on and I have wonderful memories of him. Its hard to watch another brother suffer so much. Thanks for sharing your life with us. I wish you the best!! > > > Welcome to the group: > > > > I'm going to give you some links to go to that explains more about > > this disease. On the group site there is a link section with sites > > that have a lot more information. > > > > There are certain conditions that cirrhosis patients encounter > > as the disease progresses. Most you can read about on these > > websites. Just click on the links and they will take you there. > > > > (1)The liver makes proteins and also we get proteins from the foods > > we eat. As the body uses these proteins, a byproduct is produced > > known as Ammonia. The liver will take this ammonia and convert > > it into a non toxic form known as Urea, so that it will be > > removed from the body in the urine. Since the liver cells are > > damaged or have started to die off, the functions that the liver > > once did, also deteriorate. So the ammonia doesn't get changed > > and it is in the blood and can go pass the blood brain barrier > > and into the brain. This is true of other toxins also. > > This causes confusion, disorientation, and can lead to a > > coma if not treated. Others here have given and explained > > the drugs to use for treatment. This condition is known > > as ENCEPHALOPATHY. Encephalo stands for brain and pathy > > stands for disease. > > > > (2)Another problem that can occur is Portal Hypertension. > > The vein under the liver and that goes into the liver is > > known as the Portal Vein. This is the vein where all the > > blood from the abdomen goes to, to go into the liver to > > be filtered. As the cells of the liver become damaged, > > it can form scar tissue inside the liver that blocks the > > flow of blood through the liver and to the cells of the liver. > > So this blood tends to back up and cause pressure in this > > vein. This is known as PORTAL HYPERTENSION. > > What can happen then, is that the blood will then be pushed > > into vessels that are not used to handling this amount of blood. > > The body may also start to make more vessels known as collaterol > > vessels to try and be sure that the blood get passed the liver > > and into the heart. However, when the blood backs up into > > these smaller vessel, there are weak spots there and they > > can balloon outward (sort of like blowing up a balloon and > > popping it) and they break open and bleed (vessels are known > > as either VARICOSE VEINS OR VARIES). This is a > > definite EMERGENCY. This bleeding has to be stopped. > > Usually, the bleeding is in the esophagus and the patient will > > throw up blood. It may look like streaks of blood, it may > > be red, purple red, or like coffee grounds. The doctor will > > go through the esophagus and can band them so the bleeding stops. > > Some of these smaller other vessels may be seen in the > > belly button area and the rectum, also. > > > > (3) The Spleen may become enlarged. That is also because of > > the blood flow from the spleen to the liver is being backed > > up. > > > > (4) The patient can develop fluid in the abdominal area. > > This fluid is known as ASCITES. It is caused mostly because > > the liver isn't able to make a protein well anymore that > > usually keeps the fluids in a vascular system...but it now > > seeps out...the protein is known as Albumin. It is also > > known that the sodium level rises in the body when this > > ascites develops. The fluid will keep collecting in the > > abdominal region...this fluid can press on other organs: > > the patient may not feel like eatting much because of the > > pressure on the stomach. He may not be very comfortable, either. > > He may start to have difficulty breathing. There is a > > procedure that will take the fluid from the abdominal area, > > known as PARACENTESIS. This will give the patient instant > > relief. > > > > (5) The patient may have a build up of fluid in his extremities > > also. The doctor will place him on a lower sodium diet and > > may give him diuretics also. His sodium and potassium levels > > need to stay within a certain range. That is because those > > are the electrolytes that keep the heart beating in rhythm. > > The doctor should be watching them closely. If this develops > > in the legs and feet. Elevating the legs slightly will help. > > Do not massage the areas...blood clots can develop and massaging > > can move them out of this area and to the heart. > > > > (6) Patients can bleed alot easier now. That is because the > > liver can no longer make clotting factors that helps the blood > > to clot. You may notice that the patient bruises very easily > > and develop what looks like blood blotches under the skin. > > Try to remove anything that they can become harmed with. > > Like removing rugs that don't have a rubber backing on or > > pointed ends of furniture, etc. If they get cut, elevate > > the area..if you can...and apply pressure for about 5 minutes. > > If the bleeding continues, see the doctor. > > > > This information should give you a start of what can be > > done for your brother and what could occur. > > > > There are many here who will help explain things to you...if > > you have questions. Your brother has a wonderful sister. > > > > ............................................. > > > > All Liver Patients are told not to drink alcohol. Avoid > > Grapefruit juice as this can interact with his medications. > > > > They are also told to inform the doctor of any medications > > at all they are taking: this includes over the counter, > > herbs, herbal teas, vitamins, minerals, supplements, > > and prescriptions prescribed by other doctors. Most all > > medications go through the liver first to be broken down > > before going to the rest of the body. They are also told > > to only take medications approved by the doctor or prescribed > > by a doctor. Medications have to be adjusted according to > > how much liver damage there is. > > > > Try to keep anyone who is sick, has been sick, or been around > > others who have been sick...away from him. This will only > > mean that he may end up taking more medications and will > > reduce the chance of his body healing. > > > > He should be either with a Hepatologist or a Gastroenterologist. > > > > If he wants a liver transplant...here is also a site that > > tells the process of being placed on the list: > > > > http://www.medicinenet.com/cirrhosis/article.htm > > > > http://www.mayoclinic.com/health/cirrhosis/DS00373 > > > > http://www.surgery.usc.edu/divisions/hep/patientguide/index.html > > > > I'm abijann. Again, Welcome to the group and I hope you and > > your family will enjoy being with us. > > > > > > > > > > -- > Jan H > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 hey susie  you also may want to call hospice. they have a charity that will pay for that. i have hospice here. they gave my husband 2 to 6 months. but if he can make it for a liver he may be hee awhile longer. but its all in gods hands. so iam so bless to have him as long as i have had him. hes starting to suffer alot more now. he use to do everything befre he got sick and he feels he has let me down. and i told him don't ever say that. because iam here with you until the end. i have taken him to florida ohio smokie mountains nagshead and all the trips he wants. i will do anything to make him happy. but hospice is alot of help and good to answer all your questions too. linda Subject: Re: Susie To: livercirrhosissupport Date: Saturday, January 31, 2009, 7:48 PM Jan, You have been through so much and have such a positive outlook. Thats what I'm hoping for Jack. He spends so much time thinking about dying and very little time living. I recently purchased the book " The Last Lecture " by Randy Pausch for him in hopes that he would get encouragment from a man who was given 6 months to live. Randy inspired me..I had hoped he would inspire my brother. Unfortunatly his wife never gave him the book. I plan on getting it for him again soon. But I believe like you do that we have to get the most out of our life while we still can move about. Jack was always a very active man, that is until he got this news. Then he just seemed to sort of give up. I know that deep down inside though he still wants to do things and enjoy life. Thats another reason he has to read stories like yours and your grandson's. What an inspiration to not give up. Yep, my family is very close. We lost another brother to cancer 7 years ago. Thought I would never recover from that. But life does go on and I have wonderful memories of him. Its hard to watch another brother suffer so much. Thanks for sharing your life with us. I wish you the best!! > > > Welcome to the group: > > > > I'm going to give you some links to go to that explains more about > > this disease. On the group site there is a link section with sites > > that have a lot more information. > > > > There are certain conditions that cirrhosis patients encounter > > as the disease progresses. Most you can read about on these > > websites. Just click on the links and they will take you there. > > > > (1)The liver makes proteins and also we get proteins from the foods > > we eat. As the body uses these proteins, a byproduct is produced > > known as Ammonia. The liver will take this ammonia and convert > > it into a non toxic form known as Urea, so that it will be > > removed from the body in the urine. Since the liver cells are > > damaged or have started to die off, the functions that the liver > > once did, also deteriorate. So the ammonia doesn't get changed > > and it is in the blood and can go pass the blood brain barrier > > and into the brain. This is true of other toxins also. > > This causes confusion, disorientation, and can lead to a > > coma if not treated. Others here have given and explained > > the drugs to use for treatment. This condition is known > > as ENCEPHALOPATHY. Encephalo stands for brain and pathy > > stands for disease. > > > > (2)Another problem that can occur is Portal Hypertension. > > The vein under the liver and that goes into the liver is > > known as the Portal Vein. This is the vein where all the > > blood from the abdomen goes to, to go into the liver to > > be filtered. As the cells of the liver become damaged, > > it can form scar tissue inside the liver that blocks the > > flow of blood through the liver and to the cells of the liver. > > So this blood tends to back up and cause pressure in this > > vein. This is known as PORTAL HYPERTENSION. > > What can happen then, is that the blood will then be pushed > > into vessels that are not used to handling this amount of blood. > > The body may also start to make more vessels known as collaterol > > vessels to try and be sure that the blood get passed the liver > > and into the heart. However, when the blood backs up into > > these smaller vessel, there are weak spots there and they > > can balloon outward (sort of like blowing up a balloon and > > popping it) and they break open and bleed (vessels are known > > as either VARICOSE VEINS OR VARIES). This is a > > definite EMERGENCY. This bleeding has to be stopped. > > Usually, the bleeding is in the esophagus and the patient will > > throw up blood. It may look like streaks of blood, it may > > be red, purple red, or like coffee grounds. The doctor will > > go through the esophagus and can band them so the bleeding stops. > > Some of these smaller other vessels may be seen in the > > belly button area and the rectum, also. > > > > (3) The Spleen may become enlarged. That is also because of > > the blood flow from the spleen to the liver is being backed > > up. > > > > (4) The patient can develop fluid in the abdominal area. > > This fluid is known as ASCITES. It is caused mostly because > > the liver isn't able to make a protein well anymore that > > usually keeps the fluids in a vascular system...but it now > > seeps out...the protein is known as Albumin. It is also > > known that the sodium level rises in the body when this > > ascites develops. The fluid will keep collecting in the > > abdominal region...this fluid can press on other organs: > > the patient may not feel like eatting much because of the > > pressure on the stomach. He may not be very comfortable, either. > > He may start to have difficulty breathing. There is a > > procedure that will take the fluid from the abdominal area, > > known as PARACENTESIS. This will give the patient instant > > relief. > > > > (5) The patient may have a build up of fluid in his extremities > > also. The doctor will place him on a lower sodium diet and > > may give him diuretics also. His sodium and potassium levels > > need to stay within a certain range. That is because those > > are the electrolytes that keep the heart beating in rhythm. > > The doctor should be watching them closely. If this develops > > in the legs and feet. Elevating the legs slightly will help. > > Do not massage the areas...blood clots can develop and massaging > > can move them out of this area and to the heart. > > > > (6) Patients can bleed alot easier now. That is because the > > liver can no longer make clotting factors that helps the blood > > to clot. You may notice that the patient bruises very easily > > and develop what looks like blood blotches under the skin. > > Try to remove anything that they can become harmed with. > > Like removing rugs that don't have a rubber backing on or > > pointed ends of furniture, etc. If they get cut, elevate > > the area..if you can...and apply pressure for about 5 minutes. > > If the bleeding continues, see the doctor. > > > > This information should give you a start of what can be > > done for your brother and what could occur. > > > > There are many here who will help explain things to you...if > > you have questions. Your brother has a wonderful sister. > > > > ............ ......... ......... ......... ...... > > > > All Liver Patients are told not to drink alcohol. Avoid > > Grapefruit juice as this can interact with his medications. > > > > They are also told to inform the doctor of any medications > > at all they are taking: this includes over the counter, > > herbs, herbal teas, vitamins, minerals, supplements, > > and prescriptions prescribed by other doctors. Most all > > medications go through the liver first to be broken down > > before going to the rest of the body. They are also told > > to only take medications approved by the doctor or prescribed > > by a doctor. Medications have to be adjusted according to > > how much liver damage there is. > > > > Try to keep anyone who is sick, has been sick, or been around > > others who have been sick...away from him. This will only > > mean that he may end up taking more medications and will > > reduce the chance of his body healing. > > > > He should be either with a Hepatologist or a Gastroenterologist. > > > > If he wants a liver transplant.. .here is also a site that > > tells the process of being placed on the list: > > > > http://www.medicine net.com/cirrhosi s/article. htm > > > > http://www.mayoclin ic.com/health/ cirrhosis/ DS00373 > > > > http://www.surgery. usc.edu/division s/hep/patientgui de/index. html > > > > I'm abijann. Again, Welcome to the group and I hope you and > > your family will enjoy being with us. > > > > > > > > > > -- > Jan H > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Susie - you are welcome. Glad I could help. Jan H On Sat, Jan 31, 2009 at 5:48 PM, susiefoss@... < susiefoss@...> wrote: > Jan, > You have been through so much and have such a positive outlook. Thats > what I'm hoping for Jack. He spends so much time thinking about dying > and very little time living. I recently purchased the book " The Last > Lecture " by Randy Pausch for him in hopes that he would get > encouragment from a man who was given 6 months to live. Randy > inspired me..I had hoped he would inspire my brother. Unfortunatly > his wife never gave him the book. I plan on getting it for him again > soon. But I believe like you do that we have to get the most out of > our life while we still can move about. Jack was always a very active > man, that is until he got this news. Then he just seemed to sort of > give up. I know that deep down inside though he still wants to do > things and enjoy life. Thats another reason he has to read stories > like yours and your grandson's. What an inspiration to not give up. > Yep, my family is very close. We lost another brother to cancer 7 > years ago. Thought I would never recover from that. But life does go > on and I have wonderful memories of him. Its hard to watch another > brother suffer so much. > Thanks for sharing your life with us. I wish you the best!! > > > > > > > Welcome to the group: > > > > > > I'm going to give you some links to go to that explains more about > > > this disease. On the group site there is a link section with sites > > > that have a lot more information. > > > > > > There are certain conditions that cirrhosis patients encounter > > > as the disease progresses. Most you can read about on these > > > websites. Just click on the links and they will take you there. > > > > > > (1)The liver makes proteins and also we get proteins from the > foods > > > we eat. As the body uses these proteins, a byproduct is produced > > > known as Ammonia. The liver will take this ammonia and convert > > > it into a non toxic form known as Urea, so that it will be > > > removed from the body in the urine. Since the liver cells are > > > damaged or have started to die off, the functions that the liver > > > once did, also deteriorate. So the ammonia doesn't get changed > > > and it is in the blood and can go pass the blood brain barrier > > > and into the brain. This is true of other toxins also. > > > This causes confusion, disorientation, and can lead to a > > > coma if not treated. Others here have given and explained > > > the drugs to use for treatment. This condition is known > > > as ENCEPHALOPATHY. Encephalo stands for brain and pathy > > > stands for disease. > > > > > > (2)Another problem that can occur is Portal Hypertension. > > > The vein under the liver and that goes into the liver is > > > known as the Portal Vein. This is the vein where all the > > > blood from the abdomen goes to, to go into the liver to > > > be filtered. As the cells of the liver become damaged, > > > it can form scar tissue inside the liver that blocks the > > > flow of blood through the liver and to the cells of the liver. > > > So this blood tends to back up and cause pressure in this > > > vein. This is known as PORTAL HYPERTENSION. > > > What can happen then, is that the blood will then be pushed > > > into vessels that are not used to handling this amount of blood. > > > The body may also start to make more vessels known as collaterol > > > vessels to try and be sure that the blood get passed the liver > > > and into the heart. However, when the blood backs up into > > > these smaller vessel, there are weak spots there and they > > > can balloon outward (sort of like blowing up a balloon and > > > popping it) and they break open and bleed (vessels are known > > > as either VARICOSE VEINS OR VARIES). This is a > > > definite EMERGENCY. This bleeding has to be stopped. > > > Usually, the bleeding is in the esophagus and the patient will > > > throw up blood. It may look like streaks of blood, it may > > > be red, purple red, or like coffee grounds. The doctor will > > > go through the esophagus and can band them so the bleeding stops. > > > Some of these smaller other vessels may be seen in the > > > belly button area and the rectum, also. > > > > > > (3) The Spleen may become enlarged. That is also because of > > > the blood flow from the spleen to the liver is being backed > > > up. > > > > > > (4) The patient can develop fluid in the abdominal area. > > > This fluid is known as ASCITES. It is caused mostly because > > > the liver isn't able to make a protein well anymore that > > > usually keeps the fluids in a vascular system...but it now > > > seeps out...the protein is known as Albumin. It is also > > > known that the sodium level rises in the body when this > > > ascites develops. The fluid will keep collecting in the > > > abdominal region...this fluid can press on other organs: > > > the patient may not feel like eatting much because of the > > > pressure on the stomach. He may not be very comfortable, either. > > > He may start to have difficulty breathing. There is a > > > procedure that will take the fluid from the abdominal area, > > > known as PARACENTESIS. This will give the patient instant > > > relief. > > > > > > (5) The patient may have a build up of fluid in his extremities > > > also. The doctor will place him on a lower sodium diet and > > > may give him diuretics also. His sodium and potassium levels > > > need to stay within a certain range. That is because those > > > are the electrolytes that keep the heart beating in rhythm. > > > The doctor should be watching them closely. If this develops > > > in the legs and feet. Elevating the legs slightly will help. > > > Do not massage the areas...blood clots can develop and massaging > > > can move them out of this area and to the heart. > > > > > > (6) Patients can bleed alot easier now. That is because the > > > liver can no longer make clotting factors that helps the blood > > > to clot. You may notice that the patient bruises very easily > > > and develop what looks like blood blotches under the skin. > > > Try to remove anything that they can become harmed with. > > > Like removing rugs that don't have a rubber backing on or > > > pointed ends of furniture, etc. If they get cut, elevate > > > the area..if you can...and apply pressure for about 5 minutes. > > > If the bleeding continues, see the doctor. > > > > > > This information should give you a start of what can be > > > done for your brother and what could occur. > > > > > > There are many here who will help explain things to you...if > > > you have questions. Your brother has a wonderful sister. > > > > > > ............................................. > > > > > > All Liver Patients are told not to drink alcohol. Avoid > > > Grapefruit juice as this can interact with his medications. > > > > > > They are also told to inform the doctor of any medications > > > at all they are taking: this includes over the counter, > > > herbs, herbal teas, vitamins, minerals, supplements, > > > and prescriptions prescribed by other doctors. Most all > > > medications go through the liver first to be broken down > > > before going to the rest of the body. They are also told > > > to only take medications approved by the doctor or prescribed > > > by a doctor. Medications have to be adjusted according to > > > how much liver damage there is. > > > > > > Try to keep anyone who is sick, has been sick, or been around > > > others who have been sick...away from him. This will only > > > mean that he may end up taking more medications and will > > > reduce the chance of his body healing. > > > > > > He should be either with a Hepatologist or a Gastroenterologist. > > > > > > If he wants a liver transplant...here is also a site that > > > tells the process of being placed on the list: > > > > > > http://www.medicinenet.com/cirrhosis/article.htm > > > > > > http://www.mayoclinic.com/health/cirrhosis/DS00373 > > > > > > http://www.surgery.usc.edu/divisions/hep/patientguide/index.html > > > > > > I'm abijann. Again, Welcome to the group and I hope you and > > > your family will enjoy being with us. > > > > > > > > > > > > > > > > > -- > > Jan H > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 I wasn't at the hospital when he was taken...my sister says she thinks they said 176 on the sodium??? He is still acting strange. He keeps telling me that he can't think straight. He also keeps repeating the same request over and over. He's super quiet and hardly speaking at all. He hasn't slept much .. they gave us a sedative to give him tonight. We haven't given it to him yet. He is also experiencing swelling in his feet and ankles but the doctors say thats just the liver problems. Thanks for the info about BP....I'll check that. I know that its always very low when he goes to the hospital or doctor visits. Thanks for any help....we are all at a loss as to what to do... > > If he is on diuretics, they may have adjusted his medications he > is taking. I wish I could be of more help. If I knew what his > sodium level was and more of what had gone on...I could tell you more. > > It would be great if you had a blood pressure machine.. > He should have his blood pressure taken daily, anyway. If the > blood pressure stays close to his normal range, then it would > not be much of a concern...but if it suddenly changes where it > starts to drop...then it is a definite problem. Normal range is > considered 120/80...but it may be different in a person with > cirrhosis. When a person's sodium level drops down close to > critical range ... the blood pressure will start to also drop down. > Then this is an emergency where you need to get him to the hospital > fast. > > You can compare what your machine results are to what the doctor > office says it is and see if it is reading okay. > > Please let me know how you make out with this. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Hi  Remember even with the pill to help him sleep, he may not be able to.......I can take my sleeping pill and wander the house all night not trying to wake up my sons. Lyncia  Subject: Re: Susie To: livercirrhosissupport Date: Sunday, February 1, 2009, 7:39 PM I wasn't at the hospital when he was taken...my sister says she thinks they said 176 on the sodium??? He is still acting strange. He keeps telling me that he can't think straight. He also keeps repeating the same request over and over. He's super quiet and hardly speaking at all. He hasn't slept much .. they gave us a sedative to give him tonight. We haven't given it to him yet. He is also experiencing swelling in his feet and ankles but the doctors say thats just the liver problems. Thanks for the info about BP....I'll check that. I know that its always very low when he goes to the hospital or doctor visits. Thanks for any help....we are all at a loss as to what to do... > > If he is on diuretics, they may have adjusted his medications he > is taking. I wish I could be of more help. If I knew what his > sodium level was and more of what had gone on...I could tell you more. > > It would be great if you had a blood pressure machine.. > He should have his blood pressure taken daily, anyway. If the > blood pressure stays close to his normal range, then it would > not be much of a concern...but if it suddenly changes where it > starts to drop...then it is a definite problem. Normal range is > considered 120/80...but it may be different in a person with > cirrhosis. When a person's sodium level drops down close to > critical range ... the blood pressure will start to also drop down. > Then this is an emergency where you need to get him to the hospital > fast. > > You can compare what your machine results are to what the doctor > office says it is and see if it is reading okay. > > Please let me know how you make out with this. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 I found with my husband that his B/P was always lower than other adults his size. I think this was partly due to the fact that they had him on meds to lower the pressure in his veins due to the varices. It would sometimes get as low as 60/48. I never took Terry to the ER because he had already decided that he was ready to die. However, if Jack wants to live and intends to try for a transplant, I would not advise leaving him at home when his pressure is below 80/60. Anthing close to that range should signal a trip to the ER unless his doctor advises otherwise. Unfortunately, confusion, sleep disturbances and swelling of his extremities is common in liver disease. You should discuss these with Jack's doctor for the best advice on how to treat them. Keeping his legs elevated as much as possible will help alleviate the swelling in his feet and ankles. As for the confusion, be sure he's getting his lactulose as directed. Also, it may be necessary for his doctor to adjust his dosing. Be sure to call the doctor tomorrow. I'm sorry I can't offer more help. I'm praying for all of you. Tell Jack to hang in there and fight the disease. Don't let the liver win! Warm hugs............ Diane ________________________________ To: livercirrhosissupport Sent: Sunday, February 1, 2009 7:39:08 PM Subject: Re: Susie I wasn't at the hospital when he was taken...my sister says she thinks they said 176 on the sodium??? He is still acting strange. He keeps telling me that he can't think straight. He also keeps repeating the same request over and over. He's super quiet and hardly speaking at all. He hasn't slept much .. they gave us a sedative to give him tonight. We haven't given it to him yet. He is also experiencing swelling in his feet and ankles but the doctors say thats just the liver problems. Thanks for the info about BP....I'll check that. I know that its always very low when he goes to the hospital or doctor visits. Thanks for any help....we are all at a loss as to what to do... > > If he is on diuretics, they may have adjusted his medications he > is taking. I wish I could be of more help. If I knew what his > sodium level was and more of what had gone on...I could tell you more. > > It would be great if you had a blood pressure machine.. > He should have his blood pressure taken daily, anyway. If the > blood pressure stays close to his normal range, then it would > not be much of a concern...but if it suddenly changes where it > starts to drop...then it is a definite problem. Normal range is > considered 120/80...but it may be different in a person with > cirrhosis. When a person's sodium level drops down close to > critical range ... the blood pressure will start to also drop down. > Then this is an emergency where you need to get him to the hospital > fast. > > You can compare what your machine results are to what the doctor > office says it is and see if it is reading okay. > > Please let me know how you make out with this. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Thanks Diane, We have to take him to the doc tomorrow. We'll see what more they can do. He does hope for a liver transplant but he's also so confused that none of us know exactly what he wants or needs. I'm hoping to get more incite tomorrow when we talk to the doctor. Thanks for your help and support. You have all been so much help to us. > > > > If he is on diuretics, they may have adjusted his medications he > > is taking. I wish I could be of more help. If I knew what his > > sodium level was and more of what had gone on...I could tell you > more. > > > > It would be great if you had a blood pressure machine.. > > He should have his blood pressure taken daily, anyway. If the > > blood pressure stays close to his normal range, then it would > > not be much of a concern...but if it suddenly changes where it > > starts to drop...then it is a definite problem. Normal range is > > considered 120/80...but it may be different in a person with > > cirrhosis. When a person's sodium level drops down close to > > critical range ... the blood pressure will start to also drop > down. > > Then this is an emergency where you need to get him to the hospital > > fast. > > > > You can compare what your machine results are to what the doctor > > office says it is and see if it is reading okay. > > > > Please let me know how you make out with this. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Your right Lyncia...he took the sleeping pill over an hour ago and he still isn't tired...still acting about the same. > > > > If he is on diuretics, they may have adjusted his medications he > > is taking. I wish I could be of more help. If I knew what his > > sodium level was and more of what had gone on...I could tell you > more. > > > > It would be great if you had a blood pressure machine.. > > He should have his blood pressure taken daily, anyway. If the > > blood pressure stays close to his normal range, then it would > > not be much of a concern...but if it suddenly changes where it > > starts to drop...then it is a definite problem. Normal range is > > considered 120/80...but it may be different in a person with > > cirrhosis. When a person's sodium level drops down close to > > critical range ... the blood pressure will start to also drop > down. > > Then this is an emergency where you need to get him to the hospital > > fast. > > > > You can compare what your machine results are to what the doctor > > office says it is and see if it is reading okay. > > > > Please let me know how you make out with this. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Just to share......The first month that I was brought back from Florida to Texas, I was pretty much out of it and had so so so so much confusion.  When I finallly did get some sleep and nurishment, I was better...but the confusion didn't all go away......Watch his meds and be sure he takes them correctly....especially the Lactulose.  Lyncia  Subject: Re: Susie To: livercirrhosissupport Date: Sunday, February 1, 2009, 9:27 PM Thanks Diane, We have to take him to the doc tomorrow. We'll see what more they can do. He does hope for a liver transplant but he's also so confused that none of us know exactly what he wants or needs. I'm hoping to get more incite tomorrow when we talk to the doctor. Thanks for your help and support. You have all been so much help to us. > > > > If he is on diuretics, they may have adjusted his medications he > > is taking. I wish I could be of more help. If I knew what his > > sodium level was and more of what had gone on...I could tell you > more. > > > > It would be great if you had a blood pressure machine.. > > He should have his blood pressure taken daily, anyway. If the > > blood pressure stays close to his normal range, then it would > > not be much of a concern...but if it suddenly changes where it > > starts to drop...then it is a definite problem. Normal range is > > considered 120/80...but it may be different in a person with > > cirrhosis. When a person's sodium level drops down close to > > critical range ... the blood pressure will start to also drop > down. > > Then this is an emergency where you need to get him to the hospital > > fast. > > > > You can compare what your machine results are to what the doctor > > office says it is and see if it is reading okay. > > > > Please let me know how you make out with this. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 I took mine then....but still it is going to be a long night for me.......I lay in bed, then go to the recliner, then back to bed.....then to the couch......then if I am lucky go to sleep around 4 or 5 am..........Let him sleep when he can......which sometimes isn't very much......I am lucky to have a good liver institute in the Dallas area............and wonderful sons that are used to their mother's unusual ways....... Lyncia  Subject: Re: Susie To: livercirrhosissupport Date: Sunday, February 1, 2009, 9:29 PM Your right Lyncia...he took the sleeping pill over an hour ago and he still isn't tired...still acting about the same. > > > > If he is on diuretics, they may have adjusted his medications he > > is taking. I wish I could be of more help. If I knew what his > > sodium level was and more of what had gone on...I could tell you > more. > > > > It would be great if you had a blood pressure machine.. > > He should have his blood pressure taken daily, anyway. If the > > blood pressure stays close to his normal range, then it would > > not be much of a concern...but if it suddenly changes where it > > starts to drop...then it is a definite problem. Normal range is > > considered 120/80...but it may be different in a person with > > cirrhosis. When a person's sodium level drops down close to > > critical range ... the blood pressure will start to also drop > down. > > Then this is an emergency where you need to get him to the hospital > > fast. > > > > You can compare what your machine results are to what the doctor > > office says it is and see if it is reading okay. > > > > Please let me know how you make out with this. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Hi Susie, I'm sorry to hear that your brothers situation. I'm glad you found this group though. There are wonderful people here that love to help each other. I'm MaC. My wife passed away from Cirrhosis in Nov 2005 and I came to this group looking for answers and ended up staying ever since. I've read all of your post and your brother has several symptoms of liver failure or end stage liver disease (cirrhosis). He should have been referred to a transplant hospital at the onset of these symptoms. Only a transplant team at a transplant hospital can evaluate him and place him on the transplant listing. It seems from your posts that he is only seeing a general practitioner or regular doctor. That is why they are only treating the main symptoms and not being aggressive in his treatment. He is currently suffering from Hepatic Encephalopathy which is causing his mental confusion. This can lead to a coma and in most cirrhotic cases will without a transplant. He also is suffering from Edema in the feet and ankles. To any normal hepatologist this would have been a warning sign of the damage to liver and the need to be evaluated for a transplant. You also stated that he has had a paracentisis. That is the draining of the fluid in the stomach called ascites. Ascites is a very late stage symptom and should have most certainaly alerted the doctor for the need of a transplant referral. Most people with development of ascites have a poor prognosis without a transplant. I will post another post with links to the symptoms your brother may be experiencing. But first, if you are taking him to the doctor tomorrow, there are things you need to do and ask. One is to ask how to become his medial proxy or find out what papers he can sign now, that will help you make medical decisions when he cannot. This is very important. Without this doctors may not release medical information to you or your family. He will need to sign release forms now, before he becomes to ill to do so. Secondly, ask the doctor his specialty. Ask the doctor, why he has not been referred for an EVALUATON for a liver transplant. Ask the doctor, if he is not an hepatologist how much experience he has dealing with the liver and it's symptoms, etiology and diagnosis. If very little, ask who he is consulting with in regards to treatment. This may put the doctor off, but may help in getting brother referred to the right doctor. It is very important that your brother is being treated by the right doctor. General Practioners may know about how to treat certain symptoms but may not know enough about the disease itself to know how to go any further. You brother has a very good chance at a transplant if he is evaluated by the right doctors. But time is of the essence. This is when as caregivers you need to be a bit aggressive with the doctors. Not rude, but aggressive. Ask questions, ask for lab results, ask for treatment options, ask, ask, ask ask, questions. Don't assume the doctor knows everything. They don't and sometimes they need to be pushed into making a decision that is right for you and your family. I hate to say this, but some doctors will give up on patients when they know they are dying. MaC " susiefoss@... " wrote: Thanks Diane, We have to take him to the doc tomorrow. We'll see what more they can do. He does hope for a liver transplant but he's also so confused that none of us know exactly what he wants or needs. I'm hoping to get more incite tomorrow when we talk to the doctor. Thanks for your help and support. You have all been so much help to us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Hi Susie, If his sodium was 176, that is high. My sodium was low before my transplant and I was on diuretics. Low is usually below 135. When I was put in the hospital, they replaced my sodium and all my electrolytes by IV. As Mac and others have said, it is very important to get him a referral for a transplant from a gastroenterologist or, better yet, a hepatologist, the sooner the better. Penny > > > > If he is on diuretics, they may have adjusted his medications he > > is taking. I wish I could be of more help. If I knew what his > > sodium level was and more of what had gone on...I could tell you > more. > > > > It would be great if you had a blood pressure machine.. > > He should have his blood pressure taken daily, anyway. If the > > blood pressure stays close to his normal range, then it would > > not be much of a concern...but if it suddenly changes where it > > starts to drop...then it is a definite problem. Normal range is > > considered 120/80...but it may be different in a person with > > cirrhosis. When a person's sodium level drops down close to > > critical range ... the blood pressure will start to also drop > down. > > Then this is an emergency where you need to get him to the hospital > > fast. > > > > You can compare what your machine results are to what the doctor > > office says it is and see if it is reading okay. > > > > Please let me know how you make out with this. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 I was wrong about the number. It was 127. I plan on asking the doctor tomorrow many questions. He does see a GI and he has an appt with him on Friday. We plan on asking him to get moving quickly on the transplant referral. This waiting around is not doing Jack any good. We are not sure if he's confused, depressed over his wife leaving him, or something worse. He is hardly talking at all today. Its been a very bad day and I only hope we get some answers tomorrow. Thanks again to everyone ... I've read all of your messages and they have helped a lot in knowing what we need to do now. > > > > > > If he is on diuretics, they may have adjusted his medications he > > > is taking. I wish I could be of more help. If I knew what his > > > sodium level was and more of what had gone on...I could tell you > > more. > > > > > > It would be great if you had a blood pressure machine.. > > > He should have his blood pressure taken daily, anyway. If the > > > blood pressure stays close to his normal range, then it would > > > not be much of a concern...but if it suddenly changes where it > > > starts to drop...then it is a definite problem. Normal range is > > > considered 120/80...but it may be different in a person with > > > cirrhosis. When a person's sodium level drops down close to > > > critical range ... the blood pressure will start to also drop > > down. > > > Then this is an emergency where you need to get him to the > hospital > > > fast. > > > > > > You can compare what your machine results are to what the doctor > > > office says it is and see if it is reading okay. > > > > > > Please let me know how you make out with this. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Thanks MaC, You've been very helpful to us. I read your post to my mother and sister and we are thankful for all you said. Jack is seeing a GI but so far they haven't seemed interested in anything but giving him too many drugs. We plan on getting firm with them and getting something done for him soon! Sorry about your wife. I can see how this group has helped you so much. In just a couple of days they have helped my family tremendously. Thank You Susie Thanks Diane, > > We have to take him to the doc tomorrow. We'll see what more they can > do. He does hope for a liver transplant but he's also so confused > that none of us know exactly what he wants or needs. I'm hoping to > get more incite tomorrow when we talk to the doctor. > > Thanks for your help and support. You have all been so much help to > us. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 I'm glad I could be of some help. With his edema, try to keep him off of his feet as much as possible. Elevating the feet will help. Such as having him sit on the couch with his feet propped up with a pillow etc. for a couple of hours a day. A low sodium diet would be about 1800mg of sodium a day BUT not less! Matter of fact I would stick with the RDA of 2000mg a day unless a doctor says to go lower. The point of the low sodium is to help prevent the build up of fluid on the abdomen (ascites) and that's it. But you said that he is taking diuretics for this so you have to be careful. Some diuretics can also in trade hurt the kidneys, so even though it sounds funny, make sure he is drinking fluids. Just remember the fluid you drink doesn't effect the fluid that builds up in the abdomen. The fluid you drink will also help keep the body from getting dehydrated which not only hurts the liver cells but also hurts the kidneys. Lastly, ask the doctor to have an endioscopic procedure done to check for varices veins. Especially if he is having trouble eating or swallowing phlem. The doctor may not want to do this if there is no evidence of bleeding. But just remind him that it only takes one bleeding episode to die from and there is now way of knowing if he has varices (which 90% of cirrhosis patients have) without checking. Matter of fact this is one of the first things an hepatologist would do at this point. Especially with ascites which is a direct sign of Portal Hypertension which also causes varices. Hang in there and try to take it one day at a time. Be patient with the doctors and staff. They may not react as fast as you want them. The key is to have them react in the way that you want them to. Being, doing the right tests, labs and accomplishing the proper referrals. Its important to communicate with his doctors. They need to know that you are involved. You may also want to read the hospitals patients bill of rights. They can give this to you any and every time you ask. Keep us posted and let us know how it goes. I'll keep your family in my prayers. MaC " susiefoss@... " wrote: Thanks MaC, You've been very helpful to us. I read your post to my mother and sister and we are thankful for all you said. Jack is seeing a GI but so far they haven't seemed interested in anything but giving him too many drugs. We plan on getting firm with them and getting something done for him soon! Sorry about your wife. I can see how this group has helped you so much. In just a couple of days they have helped my family tremendously. Thank You Susie Thanks Diane, > > We have to take him to the doc tomorrow. We'll see what more they can > do. He does hope for a liver transplant but he's also so confused > that none of us know exactly what he wants or needs. I'm hoping to > get more incite tomorrow when we talk to the doctor. > > Thanks for your help and support. You have all been so much help to > us. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 I agree with MaC and some others. my husband's gastroenterologist referred him to a hepatic specialist at The Cleveland Clinic Foundation. Even his GI felt he needed to be with a more knowledgeable specialist. Hi, I'm Jill. My husband has ESLD stage 4 with sustained liver function.He has lots of esophageal varices that his specialist bands every few months,has enlarged liver and spleen,low platelet count. Thankfully he doesn't have ascites yet and his legs and ankles aren't swelling yet. Good luck and Susie. We're all in this boat together.                                                                           Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. Subject: Re: Susie To: livercirrhosissupport Date: Monday, February 2, 2009, 12:09 AM I was wrong about the number. It was 127. I plan on asking the doctor tomorrow many questions. He does see a GI and he has an appt with him on Friday. We plan on asking him to get moving quickly on the transplant referral. This waiting around is not doing Jack any good. We are not sure if he's confused, depressed over his wife leaving him, or something worse. He is hardly talking at all today. Its been a very bad day and I only hope we get some answers tomorrow. Thanks again to everyone ... I've read all of your messages and they have helped a lot in knowing what we need to do now. > > > > > > If he is on diuretics, they may have adjusted his medications he > > > is taking. I wish I could be of more help. If I knew what his > > > sodium level was and more of what had gone on...I could tell you > > more. > > > > > > It would be great if you had a blood pressure machine.. > > > He should have his blood pressure taken daily, anyway. If the > > > blood pressure stays close to his normal range, then it would > > > not be much of a concern...but if it suddenly changes where it > > > starts to drop...then it is a definite problem. Normal range is > > > considered 120/80...but it may be different in a person with > > > cirrhosis. When a person's sodium level drops down close to > > > critical range ... the blood pressure will start to also drop > > down. > > > Then this is an emergency where you need to get him to the > hospital > > > fast. > > > > > > You can compare what your machine results are to what the doctor > > > office says it is and see if it is reading okay. > > > > > > Please let me know how you make out with this. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 No way will I be leaving...you guys have been so helpful to us. Jack already told me that he's planning on getting on here and getting to know all of you. He's doing amazing today. So nope, can't get rid of us!!! ;-) love, Susie > > I'm so glad that your brother is doing well. I hope you can > convince him to join us here. I think he would really enjoy it > and feel so much better that others share what he is going through... > however, I hope that doesn't mean that you and will leave us... > we want you here, also. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Yippeeeee!!!!! ________________________________ To: livercirrhosissupport Sent: Tuesday, February 3, 2009 4:42:46 PM Subject: Re: Susie No way will I be leaving...you guys have been so helpful to us. Jack already told me that he's planning on getting on here and getting to know all of you. He's doing amazing today. So nope, can't get rid of us!!! ;-) love, Susie > > I'm so glad that your brother is doing well. I hope you can > convince him to join us here. I think he would really enjoy it > and feel so much better that others share what he is going through... > however, I hope that doesn't mean that you and will leave us... > we want you here, also. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Thank you for the information. I'm going to discuss all of this with Jack and our family. We just don't want the doctors taking forever to just get him on the list. They said it takes a long time..but that they will begin the process of referring him....its all new to us. But thanks...each of these posts help us a lot! > > Each transplant patient is listed on the transplant list according to > how sick they are and how long they have to live without having a > transplant. The transplant team of doctors don't want to transplant > someone too far down on the list cause these patients might get > better and go back down on their MELD score to lower on the list. > They might live longer without the need of the transplant than if > they were transplanted early on and something takes place that > the organ they receive doesn't work or something happens during > surgery. Transplant surgery is very high risk compared to many other > surgeries, because the patient cannot live without a liver and once > they remove it..that may be it. They can try to locate another > organ fast if the organ doesn't function and have done that in > some cases. Most of the time, though, they have thoroughly > examined the organ before hand to be sure they approve the organ > is good enough to transplant. An organ can only be out of the > donors body a certain time period before it becomes no good to > transplant. > > Different transplant centers have a different amount of people > on their transplant list, also. Some people try to be listed > in two different places, but then they have to go through > two evaluations processes cause one transplant center may > not accept the results of testing from another center. Some > insurance won't cover it also. If it is at all possible, > it is best to be listed at the closest to home first. This > is because of seeing doctors that may be with the hospital > frequently after the transplant in which the patient will > need to be driven to those appointments and also, if something > serious happens before the transplant, they can be transported > much faster to the Transplant center from your local hospital. > Some local hospitals are not familiar with handling transplant > patients and they will immediated transport them to the > other hospital, after they contact the Transplant Center there. > > There are many patients who are listed with more than one > Center...it depends on what the patient wants. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 Thank You....I hope we get something set up soon. > > It sometimes depends on how well the doctor is associated with > the Transplant Center. If your brother needs evaluation as > soon as possible, he would talk to the main doctors down > there and then he would be evaluated much sooner. If he is > going through their secretaries, that may be what is holding > everything up. The doctor has to talk directly to the other > doctors or nurses there and they usually have special openings > if the patient need to be seen sooner. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 THANK YOU! > > > If you need the number where they make appointments for Transplant > Patients at > > the Transplant Center, Here is a page that has that information: > > http://www.ucsfhealth.org/adult/medical_services/organ_transplants/liv er\ > /index.html > <http://www.ucsfhealth.org/adult/medical_services/organ_transplants/li ve\ > r/index.html> > > At most transplant dept., the number is special from the others parts of > the hospital. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 You have read my mind. I plan on talking to his doctor and saying just what you said. If he isn't going to get on the ball..then I will. I have the numbers now and the info needed. Jack just doesn't have the strength to fight this battle...so I will! > > You need to learn to start to squeak. The more you squeak the more > annoying you will become. The more the other person will start > to do anything they can just to get you to stop the annoying > squeaking. The squeaking wheel gets oiled. The ones that don't > squeak will end up with nothing. You have to do this early and > keep it up, otherwise you might regret it or you will end up > yelling instead. > > You might tell this doctor that you are going to call the > transplant hospital and see if you cannot get an early appointment > with a hepatologist there, but you rather he would do that since > he is your brother's doctor. > > One doctor talking to another doctor directly will accomplish > more than going through a secretary or because a doctor has > his secretary handle the appointments. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2009 Report Share Posted February 17, 2009 All very true and thanks...I'll make sure to become more pro-active in getting things straight with the doctors, and have them write it all down. Thanks for the advice.. > > If the doctor wants you to follow instructions in your loved ones care, > then you should require " them " to write those instructions out on > their pads and hand it to you. Having it in writing by them enforces > that the instruction are made by them and they are responsible for > the correct care. Telling you by word of mouth doesn't cut it. > They are having you make the decisions and then it become your > responsibility of how he is taking care of and If something goes > wrong, they have a way out of it. Put this responsibility > where it should be...back on them where it belongs. > > Having diarrhea can cause your loved ones electrolyte balance > to go out of proper range. Therefore, you can tell the doctor > you are worried about that happening and you need to know when > you should take him to the ER or what to look for if he isn't > doing well. > > They should write out how much lactulose he should regularly be > taking, how much you should increase it during a certain time period and > when you are to know that he should be taken to the hospital to > be checked out. > > Doctors are human...they are not in authority just because > they have medical training...you are paying them for their > services. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 Thank you..I agree with you that it probably differs depending on what medicines he's on. I'm going to write his doctor an email and see what he says. Thanks for all the facts though..I really appreciate them... Susie > > Unless we know all his medical conditions besides the need of a liver, > we might not be able to answer this. > > If someone is taking an Iron supplement, then it is best to take > it with water and put off the milk, as milk can prevent it from > being absorbed well. > > Orange juice is high in potassium, so if someone has a kidney problem... > the doctor might say to lower their potassium in the diet. Also, > some people may be on a diuretic and it depends what " type " they are > taking if they should have extra potassium or not. > > Medications are best taken with only water, unless a patient is told > otherwise and usually a full glass of it. > Grapefruit juice is known to increase the amount of some medication > in the blood and can cause them to go toxic in the body...so it is > best to stay clear of that. I've heard that orange juice may do > the same thing but at a lower extent. However, if someone is > taking iron pills, the doctor may want to have them drink orange > juice cause, unlike milk, it helps in the absorption of iron. > > This is just for some people's reference. He definitely has > to call the doctor and find out for sure...no one here can tell > him that. > Quote Link to comment Share on other sites More sharing options...
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