Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Diane Thank you so much for you message. I really need to hear from people who have been through this. It is really hard to go through. I pray and read my scriptures a lot. It helps me to have more faith in the Lord. I love to ride my bike and go roller blading, but I haven't been able to with my mom here. She just can't be left alone for more than a very short period of time. She has had a UTI for a couple of days now. Wow she got so sick and confused the other day. All she has been doing today is sleeping. We had her blood taken yesterday to check her levels. The test has not come back yet. Can she sleep too much? Should I try and keep her awake or should I just let her sleep? > > > > Hello, My mother is 59 years old and was diagnosed with Advanced > Cirrhosis of the liver in feb. 2008. She has had several episodes of > Encephalopathy over the years. She has been in and out of the > hospital 7 times in 3 months. She also stayed at a care facility for > a month. She now lives with my husband, daughter and I. She has had 5 > varices banded, she has ascites, edema, UTI, encephalopathy and > dementia symptoms. She is now on 5 water pills daily and she takes 4 > doses of Lactulose. She has had to have fluid drained from her > stomach twice now. I really need some support and advice. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Hi Stefanie, As for sleeping too much, I don't know. As for keeping her awake, I have tried that with my husband, but with no good results. He is just so exhausted that he cannot stay awake. Also, when the toxins are high, it causes a coma-like state that requires him to sleep. Our doctor told us that, in the end, he most likely will sleep more and more and will just " sleep " himself into a coma. When that happens, death is immiment. He sometimes sleeps for 20+ hours at a time. When he is awake, he's very confused and disoriented and often sees and/or hears things that aren't there. He can be very easily agitated at those times as well. I'm sorry I can't offer more encouraging news, but I've learned that, for me at least, I do best to know exactly what to look for and what I need to prepare myself for in the future. If I can help you in any way, please feel free to contact me personally at dianechandler@... . God bless! Love and hugs........ Diane C. from TN > > > > > > Hello, My mother is 59 years old and was diagnosed with Advanced > > Cirrhosis of the liver in feb. 2008. She has had several episodes of > > Encephalopathy over the years. She has been in and out of the > > hospital 7 times in 3 months. She also stayed at a care facility for > > a month. She now lives with my husband, daughter and I. She has had 5 > > varices banded, she has ascites, edema, UTI, encephalopathy and > > dementia symptoms. She is now on 5 water pills daily and she takes 4 > > doses of Lactulose. She has had to have fluid drained from her > > stomach twice now. I really need some support and advice. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Diane, That is similar to what happened with my wife. She called me at work one day and told me to come home because she couldn't stay awake. I came home and she was very sleepy. At that time, I didn't know what to look for or have any clue. So I let her sleep. Then when she awoke she would become more confused. At one point I woke up and decided for some reason to check on her. When I couldn't wake her up I called 911. She was real close to a coma. At the hospital they gave her lactulose and she came back around and within a day seemed very normal. But her kidneys started to fail and she became very sleepy again. I sat by her bed side and let her sleep. I never tried to wake her. I think I was in denial for a long time. At one point she woke up suddenly as if surprised. Looked at me and settled down. I looked in her eyes and told her I loved her and she only nodded. Then closed her eyes and fell asleep. She stayed asleep until she fell into a coma and passed within 24hrs after that. I will never forget that day. When she woke up she looked around as if scared she was alone. When she realized I was there it was as if a calm came over her. I don't know how to describe it. But I never knew true love that strong until that moment. MaC Diane Chandler wrote: Hi Stefanie, As for sleeping too much, I don't know. As for keeping her awake, I have tried that with my husband, but with no good results. He is just so exhausted that he cannot stay awake. Also, when the toxins are high, it causes a coma-like state that requires him to sleep. Our doctor told us that, in the end, he most likely will sleep more and more and will just " sleep " himself into a coma. When that happens, death is immiment. He sometimes sleeps for 20+ hours at a time. When he is awake, he's very confused and disoriented and often sees and/or hears things that aren't there. He can be very easily agitated at those times as well. I'm sorry I can't offer more encouraging news, but I've learned that, for me at least, I do best to know exactly what to look for and what I need to prepare myself for in the future. If I can help you in any way, please feel free to contact me personally at dianechandler@... . God bless! Love and hugs........ Diane C. from TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 MaC, it is so sad. Just so sad. I'm sorry. I have too vivid an imagination, and can see Insoon's face in my mind. I'm glad there is a picture here of her. Plus, then I'll know who she is when I get there. I'll tell her how much you helped all these people who straggle in here to this group , lost and scared, and how you are like a shepherd . And I think you might be on to something about the spleen. There has been a bunch of spasms up there, and radiating to the shoulder. The white count was 4.3 (thous/mcl) and the monocytes were 176 (cells/mcl). Glucose was also out of range, at 129. Re: Re: liver Cirrhosis Diane, That is similar to what happened with my wife. She called me at work one day and told me to come home because she couldn't stay awake. I came home and she was very sleepy. At that time, I didn't know what to look for or have any clue. So I let her sleep. Then when she awoke she would become more confused. At one point I woke up and decided for some reason to check on her. When I couldn't wake her up I called 911. She was real close to a coma. At the hospital they gave her lactulose and she came back around and within a day seemed very normal. But her kidneys started to fail and she became very sleepy again. I sat by her bed side and let her sleep. I never tried to wake her. I think I was in denial for a long time. At one point she woke up suddenly as if surprised. Looked at me and settled down. I looked in her eyes and told her I loved her and she only nodded. Then closed her eyes and fell asleep. She stayed asleep until she fell into a coma and passed within 24hrs after that. I will never forget that day. When she woke up she looked around as if scared she was alone. When she realized I was there it was as if a calm came over her. I don't know how to describe it. But I never knew true love that strong until that moment. MaC Diane Chandler <dianechandler@ att.net> wrote: Hi Stefanie, As for sleeping too much, I don't know. As for keeping her awake, I have tried that with my husband, but with no good results. He is just so exhausted that he cannot stay awake. Also, when the toxins are high, it causes a coma-like state that requires him to sleep. Our doctor told us that, in the end, he most likely will sleep more and more and will just " sleep " himself into a coma. When that happens, death is immiment. He sometimes sleeps for 20+ hours at a time. When he is awake, he's very confused and disoriented and often sees and/or hears things that aren't there. He can be very easily agitated at those times as well. I'm sorry I can't offer more encouraging news, but I've learned that, for me at least, I do best to know exactly what to look for and what I need to prepare myself for in the future. If I can help you in any way, please feel free to contact me personally at dianechandler@ att.net . God bless! Love and hugs........ Diane C. from TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Bobby, Thanks, I feel like you are like a brother far away. You always say the right thing. I don't know what happened tonight. I just happened to relive that moment for some reason and posted it. It's been almost three years. But the memory is forever and ever lasting and will never leave me. I will always love her for the rest of my life. period. And if you do great her in Heaven she will bow to you with the grace of God. MaC Bob Aragon wrote: MaC, it is so sad. Just so sad. I'm sorry. I have too vivid an imagination, and can see Insoon's face in my mind. I'm glad there is a picture here of her. Plus, then I'll know who she is when I get there. I'll tell her how much you helped all these people who straggle in here to this group , lost and scared, and how you are like a shepherd . And I think you might be on to something about the spleen. There has been a bunch of spasms up there, and radiating to the shoulder. The white count was 4.3 (thous/mcl) and the monocytes were 176 (cells/mcl). Glucose was also out of range, at 129. Re: Re: liver Cirrhosis Diane, That is similar to what happened with my wife. She called me at work one day and told me to come home because she couldn't stay awake. I came home and she was very sleepy. At that time, I didn't know what to look for or have any clue. So I let her sleep. Then when she awoke she would become more confused. At one point I woke up and decided for some reason to check on her. When I couldn't wake her up I called 911. She was real close to a coma. At the hospital they gave her lactulose and she came back around and within a day seemed very normal. But her kidneys started to fail and she became very sleepy again. I sat by her bed side and let her sleep. I never tried to wake her. I think I was in denial for a long time. At one point she woke up suddenly as if surprised. Looked at me and settled down. I looked in her eyes and told her I loved her and she only nodded. Then closed her eyes and fell asleep. She stayed asleep until she fell into a coma and passed within 24hrs after that. I will never forget that day. When she woke up she looked around as if scared she was alone. When she realized I was there it was as if a calm came over her. I don't know how to describe it. But I never knew true love that strong until that moment. MaC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 MaC, Thank you for responding and sharing your story. Your lovely wife was so blessed to have you love her so completely. Though she died much too young, some people will live long lives and never have someone love them like that. We (you and Innoon, me and my husband) are blessed that we have had that. I looked at her pictures. She was a beautiful lady and obviously very happy. I know you will always love her and hold her close in your heart and watch her emerge through your little girl. God bless you and be with you always. Hugs....... Diane C. from TN Hi Stefanie, > > As for sleeping too much, I don't know. As for keeping her awake, I > have tried that with my husband, but with no good results. He is > just so exhausted that he cannot stay awake. Also, when the toxins > are high, it causes a coma-like state that requires him to sleep. > Our doctor told us that, in the end, he most likely will sleep more > and more and will just " sleep " himself into a coma. When that > happens, death is immiment. He sometimes sleeps for 20+ hours at a > time. When he is awake, he's very confused and disoriented and often > sees and/or hears things that aren't there. He can be very easily > agitated at those times as well. > > I'm sorry I can't offer more encouraging news, but I've learned that, > for me at least, I do best to know exactly what to look for and what > I need to prepare myself for in the future. > > If I can help you in any way, please feel free to contact me > personally at dianechandler@... . God bless! > > Love and hugs........ > > Diane C. from TN > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Thanks Diane, I do see a lot of her mother in her. It's amazing how even though her mom isn't her but she has the same mannerisms. MaC Diane Chandler wrote: MaC, Thank you for responding and sharing your story. Your lovely wife was so blessed to have you love her so completely. Though she died much too young, some people will live long lives and never have someone love them like that. We (you and Innoon, me and my husband) are blessed that we have had that. I looked at her pictures. She was a beautiful lady and obviously very happy. I know you will always love her and hold her close in your heart and watch her emerge through your little girl. God bless you and be with you always. Hugs....... Diane C. from TN Hi Stefanie, > > As for sleeping too much, I don't know. As for keeping her awake, I > have tried that with my husband, but with no good results. He is > just so exhausted that he cannot stay awake. Also, when the toxins > are high, it causes a coma-like state that requires him to sleep. > Our doctor told us that, in the end, he most likely will sleep more > and more and will just " sleep " himself into a coma. When that > happens, death is immiment. He sometimes sleeps for 20+ hours at a > time. When he is awake, he's very confused and disoriented and often > sees and/or hears things that aren't there. He can be very easily > agitated at those times as well. > > I'm sorry I can't offer more encouraging news, but I've learned that, > for me at least, I do best to know exactly what to look for and what > I need to prepare myself for in the future. > > If I can help you in any way, please feel free to contact me > personally at dianechandler@... . God bless! > > Love and hugs........ > > Diane C. from TN > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 Stefanie, I am so happy to learn that you have asked for help from your church. You need someone close by who can be there with little notice to help you through this. I'm ready and willing to do anything at all that I can, but I'm limited by distance. Venting to someone online is no substitute for someone being there present with you to offer support and sympathy. I'm so glad you had the faith to reach out to your church. I'm always here if you need me, just dtop me a line. Always praying for you......... Love and hugs........... Diane C. from TN > > > > > > > > > > > > > > Hello, My mother is 59 years old and was diagnosed with > > > > Advanced > > > > > > Cirrhosis of the liver in feb. 2008. She has had several > > episodes > > > > of > > > > > > Encephalopathy over the years. She has been in and out of the > > > > > > hospital 7 times in 3 months. She also stayed at a care > > facility > > > > for > > > > > > a month. She now lives with my husband, daughter and I. She > > has > > > > had 5 > > > > > > varices banded, she has ascites, edema, UTI, encephalopathy > > and > > > > > > dementia symptoms. She is now on 5 water pills daily and she > > > > takes 4 > > > > > > doses of Lactulose. She has had to have fluid drained from > > her > > > > > > stomach twice now. I really need some support and advice. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2008 Report Share Posted August 5, 2008 I agree. The paracentisis is the only thing that will give a person relief. I was taking quite a bit of lasix and it did nothing for the ascites, or my ankles anymore. I was so miserable with ascites before the first paracentisis that I couldn't even roll over in bed without a little help or a huge effort on my part. The paracentisis is a piece of cake. I think everything is a piece of cake anyway...lol. It is easy, but does have risks as CLE has stated. Boy, you sure feel good afterwards. I layed there and watched my belly deflate like a balloon while they did it. You can breathe so much better afterwards and you just feel more comfortable. While I'm on here, my labs from yesterday have dropped from what they were the week before. I have always been wondering if the injury I had to my cartlidge around my ribs on the right side two weeks ago had anything to do with my numbers going up, but the doctors don't seem to think it does. When I was in my local hospital in 2004, for colonitis or Typhoid Fever (the doctors couldn't agree what I had), my liver numbers (AST & ALT) jumped up big time then because of my illness, but they went back down once I started feeling better. I know the AST isn't specifically connected with the liver. It's also associated with the heart muscle, skeletal muscle cells, and other tissue. Pregnancy and excercise can even cause it to be elevated. My AST, ALT, GGT, Alk Phos, and bilirubin have all dropped from what they were last week, so that should mean that I'm not in rejection. Hopefully, they will continue to fall next week too. Take care. Penny > > > > > > > > > > Hello, My mother is 59 years old and was diagnosed with > > Advanced > > > > Cirrhosis of the liver in feb. 2008. She has had several > episodes > > of > > > > Encephalopathy over the years. She has been in and out of the > > > > hospital 7 times in 3 months. She also stayed at a care facility > > > for > > > > a month. She now lives with my husband, daughter and I. She has > > had 5 > > > > varices banded, she has ascites, edema, UTI, encephalopathy and > > > > dementia symptoms. She is now on 5 water pills daily and she > > takes 4 > > > > doses of Lactulose. She has had to have fluid drained from her > > > > stomach twice now. I really need some support and advice. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2008 Report Share Posted August 5, 2008 Hi Penny, Thanks for the word on the Cipro and I'm so happy to hear that your levels are down! WooooHooooo!!! I pray you have continued healing and that your body accepts the liver with no ill effects. God bless! Love and hugs........ Diane C. from TN > > > > > > > > > > > > Hello, My mother is 59 years old and was diagnosed with > > > Advanced > > > > > Cirrhosis of the liver in feb. 2008. She has had several > > episodes > > > of > > > > > Encephalopathy over the years. She has been in and out of the > > > > > hospital 7 times in 3 months. She also stayed at a care > facility > > > > > for > > > > > a month. She now lives with my husband, daughter and I. She > has > > > had 5 > > > > > varices banded, she has ascites, edema, UTI, encephalopathy > and > > > > > dementia symptoms. She is now on 5 water pills daily and she > > > takes 4 > > > > > doses of Lactulose. She has had to have fluid drained from > her > > > > > stomach twice now. I really need some support and advice. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2008 Report Share Posted August 5, 2008 Everytime I have one done my appetite increases. My Dr. usually gets the needle inserted then comes back periodically to check the flow. Two nurses are in there the whole time. You bet you can watch your stomach deflate. I have to go get one tomorrow. I asked the Dr. once in my most serious voice “Dr. what are those strange looking things on the end of my legs” Dumbfounded he said “What are you talking about” I said, “ those funny looking things” He said, “I don't know what you are talking about” I said “nevermind, I figured it out....it's my hoofs...hadn't seen those things in a while” He said, “you mean your feet, CLE, you have a way of saying everything,...dontcha? Take Care and God bless Subject: Re: liver Cirrhosis To: livercirrhosissupport Date: Tuesday, August 5, 2008, 4:40 PM I agree. The paracentisis is the only thing that will give a person relief. I was taking quite a bit of lasix and it did nothing for the ascites, or my ankles anymore. I was so miserable with ascites before the first paracentisis that I couldn't even roll over in bed without a little help or a huge effort on my part. The paracentisis is a piece of cake. I think everything is a piece of cake anyway...lol. It is easy, but does have risks as CLE has stated. Boy, you sure feel good afterwards. I layed there and watched my belly deflate like a balloon while they did it. You can breathe so much better afterwards and you just feel more comfortable. While I'm on here, my labs from yesterday have dropped from what they were the week before. I have always been wondering if the injury I had to my cartlidge around my ribs on the right side two weeks ago had anything to do with my numbers going up, but the doctors don't seem to think it does. When I was in my local hospital in 2004, for colonitis or Typhoid Fever (the doctors couldn't agree what I had), my liver numbers (AST & ALT) jumped up big time then because of my illness, but they went back down once I started feeling better. I know the AST isn't specifically connected with the liver. It's also associated with the heart muscle, skeletal muscle cells, and other tissue. Pregnancy and excercise can even cause it to be elevated. My AST, ALT, GGT, Alk Phos, and bilirubin have all dropped from what they were last week, so that should mean that I'm not in rejection. Hopefully, they will continue to fall next week too. Take care. Penny > > > > > > > > > > Hello, My mother is 59 years old and was diagnosed with > > Advanced > > > > Cirrhosis of the liver in feb. 2008. She has had several > episodes > > of > > > > Encephalopathy over the years. She has been in and out of the > > > > hospital 7 times in 3 months. She also stayed at a care facility > > > for > > > > a month. She now lives with my husband, daughter and I. She has > > had 5 > > > > varices banded, she has ascites, edema, UTI, encephalopathy and > > > > dementia symptoms. She is now on 5 water pills daily and she > > takes 4 > > > > doses of Lactulose. She has had to have fluid drained from her > > > > stomach twice now. I really need some support and advice. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2008 Report Share Posted August 5, 2008 Diane My mom went in to have a paracentisis done this morning. They only found a few pockets of fluid, not enough to drain today. She is so so so so confused right now. She keeps counting things and talking a bunch of jibberish. I don't know what to do. I have already given her 3 doses of lactulose today and she will get another one at 10pm. I wish the UTI would go away. The Hepatic Encephalopathy gets so bad every time she gets one. We signed up for home health, but I don't know if we are ready for Hospice yet. Today she started stuttering her words like she was going to have a seizure. She has only had one and that was at my reception on April 19, 2008. I am so scared, I couldn't sleep most of the night. I kept waking up with fear. Any advice you could give me. I was also wondering what state you lived in. I wish you were close, I could really use some help. Stefanie > > > > > > > > > > > > > > > > Hello, My mother is 59 years old and was diagnosed with > > > > > Advanced > > > > > > > Cirrhosis of the liver in feb. 2008. She has had several > > > episodes > > > > > of > > > > > > > Encephalopathy over the years. She has been in and out of > the > > > > > > > hospital 7 times in 3 months. She also stayed at a care > > > facility > > > > > for > > > > > > > a month. She now lives with my husband, daughter and I. > She > > > has > > > > > had 5 > > > > > > > varices banded, she has ascites, edema, UTI, > encephalopathy > > > and > > > > > > > dementia symptoms. She is now on 5 water pills daily and > she > > > > > takes 4 > > > > > > > doses of Lactulose. She has had to have fluid drained > from > > > her > > > > > > > stomach twice now. I really need some support and advice. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2008 Report Share Posted August 5, 2008 Stefanie, I am so sorry about your Mom. I am also concerned that perhaps she may need to be hospitalized. If she has already decided against further hospitalizations, then I think, yes you are ready for Hospice. They will give you some relief and let you at least get some comfortable sleep. Honey, I'm sorry but the only advice I can give you is to start letting her go. Believe me, I know how hard that is. However, it is a wonderful gift to her from you and it is the only real thing you can do for yourself. You have to find a way to begin saying goodbye. For me, starting that process helped me to see my Mom as the gift she always had been to our family. It also helped me start the grieving process. I had to force myself to see her suffering for what it was doing to her, not to me. I had to realize that the only way she could get relief was through release. To tell you the absolute truth, in those final days, I had begun to see that I couldn't go on much longer like it was. I knew that I had to let her go, so she could leave in peace and both of our suffering could begin to come to an end. I miss her every day of my life. I ache to see her smiling face and hear her humming as she went about her daily work. I listen to and watch videos and hear her voice and see her smiling and know that's the Momma I want to remember when I'm old. Not the Momma that was withered with sickness and racked by pain, but the Momma that couldn't quit smiling just because her family was near her. When I started the letting go, I began to see her as that person again and it helped me so much in the process of letting her go to her eternal rest. I live in Western Tennessee. I know your are suffering. I'm praying for you Stefanie. I really do think you should consider a 911 call to take her back to the hospital. If for no other reason than to get the Hospice referral and get that set up before she returns home again. Give yourself a break, Stefanie. If her doctor is worth his/her salt, they will admit her and let you get a handle on some things before releasing her back to your home. You may also need to consider that you're not going to be able to do this at home. She may need to be admitted to an inpatient hospice care program. Somewhere where you can come in and stay as long as you can and then go home for some rest or just take a walk to catch your breath. There'll always be someone there to take care of your Mom and it will give you a bit of freedom. Even if you don't want to consider it as a final solution, you might consider it as a respite solution on a temporary basis. I so wish I could be more help. My thoughts and prayers are with you. Love and hugs........ Diane C. from TN > > > > > > > > > > > > > > > > > > Hello, My mother is 59 years old and was diagnosed with > > > > > > Advanced > > > > > > > > Cirrhosis of the liver in feb. 2008. She has had several > > > > episodes > > > > > > of > > > > > > > > Encephalopathy over the years. She has been in and out of > > the > > > > > > > > hospital 7 times in 3 months. She also stayed at a care > > > > facility > > > > > > for > > > > > > > > a month. She now lives with my husband, daughter and I. > > She > > > > has > > > > > > had 5 > > > > > > > > varices banded, she has ascites, edema, UTI, > > encephalopathy > > > > and > > > > > > > > dementia symptoms. She is now on 5 water pills daily and > > she > > > > > > takes 4 > > > > > > > > doses of Lactulose. She has had to have fluid drained > > from > > > > her > > > > > > > > stomach twice now. I really need some support and advice. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2008 Report Share Posted August 5, 2008 Stefanie, You need to contact Hospice in your area. Or at least have her current doctor determine if she is ready for Hospice. A doctor should be telling you this. With encephalopathy she can go into an hepatic coma at any time depending on the severity. In my opinion, she should be in a hospital so they can do tests and evaluate her and try to get the encephalopathy under control. Also how are her kidneys? When you say she has a UTI have they tested her kidney function to make sure it was normal? When the kidney starts to become damaged or when bilirubin gets in the blood the urine will turn dark. MaC stefanieputnam wrote: Diane My mom went in to have a paracentisis done this morning. They only found a few pockets of fluid, not enough to drain today. She is so so so so confused right now. She keeps counting things and talking a bunch of jibberish. I don't know what to do. I have already given her 3 doses of lactulose today and she will get another one at 10pm. I wish the UTI would go away. The Hepatic Encephalopathy gets so bad every time she gets one. We signed up for home health, but I don't know if we are ready for Hospice yet. Today she started stuttering her words like she was going to have a seizure. She has only had one and that was at my reception on April 19, 2008. I am so scared, I couldn't sleep most of the night. I kept waking up with fear. Any advice you could give me. I was also wondering what state you lived in. I wish you were close, I could really use some help. Stefanie > > > > > > > > > > > > > > > > Hello, My mother is 59 years old and was diagnosed with > > > > > Advanced > > > > > > > Cirrhosis of the liver in feb. 2008. She has had several > > > episodes > > > > > of > > > > > > > Encephalopathy over the years. She has been in and out of > the > > > > > > > hospital 7 times in 3 months. She also stayed at a care > > > facility > > > > > for > > > > > > > a month. She now lives with my husband, daughter and I. > She > > > has > > > > > had 5 > > > > > > > varices banded, she has ascites, edema, UTI, > encephalopathy > > > and > > > > > > > dementia symptoms. She is now on 5 water pills daily and > she > > > > > takes 4 > > > > > > > doses of Lactulose. She has had to have fluid drained > from > > > her > > > > > > > stomach twice now. I really need some support and advice. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2008 Report Share Posted August 6, 2008 Diane Thank you so much for the advice. My mom is getting more confused by the minute. Last night was pretty bad, she could not even form a complete thought. Our Bishop came and gave her a blessing last night. He is also a doctor and he agrees that we need some help. Today I am going to get in touch with my mom's Gastro. doc. and see if she is eligible for a liver transplant. We are also thinking strongly about trying hospice. I talked to my older sister and she agrees with the decision. Now I need to talk to my other sister and see how she feels so we can proceed. My husband had to stay up with my mom to watch her last night. Tonight is my night. I can't believe that such a normal infection for most people can cause so much trouble for my mother. My Bishop said that my mother is physically just living on the edge and when she gets a little infection it can just throw her over board. I think we will give hospice a try and if it is not sufficient for any of us than we will have to place her back at Kolob care facility. I sure hope hospice works so she can be around her family like she wants to. My mom has been talking a lot about Heavenly Father and her Scriptures. I now I need to learn to let go of her. I am really struggling with that. I believe that is the biggest reason she came to live with us, is so that I can learn to love her enough to let her go. I am just so scared. I am afraid once I let her go in my mind than she will actually leave. Thanks for the support Your friend Stefanie > > > > > > > > > > > > > > > > > > > > Hello, My mother is 59 years old and was diagnosed > with > > > > > > > Advanced > > > > > > > > > Cirrhosis of the liver in feb. 2008. She has had > several > > > > > episodes > > > > > > > of > > > > > > > > > Encephalopathy over the years. She has been in and > out of > > > the > > > > > > > > > hospital 7 times in 3 months. She also stayed at a > care > > > > > facility > > > > > > > for > > > > > > > > > a month. She now lives with my husband, daughter and > I. > > > She > > > > > has > > > > > > > had 5 > > > > > > > > > varices banded, she has ascites, edema, UTI, > > > encephalopathy > > > > > and > > > > > > > > > dementia symptoms. She is now on 5 water pills daily > and > > > she > > > > > > > takes 4 > > > > > > > > > doses of Lactulose. She has had to have fluid drained > > > from > > > > > her > > > > > > > > > stomach twice now. I really need some support and > advice. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2008 Report Share Posted August 6, 2008 Mac We are looking into hospice today. Thank you for the concern. On her last lab results my moms kidney are functioning, but they are low. Our Emergency room here is so stupid. She has been there 7 times in 3 months. Most of the time they would just admit her and just babysit her without taking any tests. It was a struggle to get them to do anything for her. It is so awful when we take her there. I know it is an option, but one that our whole family dreads. My sister got so upset at the doctors for not taking tests or doing anything. They ended up kicking her out of the emergency room. She is now restricted from going there other than if it is her personal self that is sick. Stefanie > > > > > > > > > > > > > > > > > > Hello, My mother is 59 years old and was diagnosed with > > > > > > Advanced > > > > > > > > Cirrhosis of the liver in feb. 2008. She has had several > > > > episodes > > > > > > of > > > > > > > > Encephalopathy over the years. She has been in and out of > > the > > > > > > > > hospital 7 times in 3 months. She also stayed at a care > > > > facility > > > > > > for > > > > > > > > a month. She now lives with my husband, daughter and I. > > She > > > > has > > > > > > had 5 > > > > > > > > varices banded, she has ascites, edema, UTI, > > encephalopathy > > > > and > > > > > > > > dementia symptoms. She is now on 5 water pills daily and > > she > > > > > > takes 4 > > > > > > > > doses of Lactulose. She has had to have fluid drained > > from > > > > her > > > > > > > > stomach twice now. I really need some support and advice. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2008 Report Share Posted August 6, 2008 Hi Stefanie, I am so happy to hear that one of your sisters has already agreed to try the hospice program. I sure hope your other sister is agreeable as well. I truly believe it is the right option both for your Mom and for you and your family. I am so thankful your Bishop was able to visit and to encourage you. The fact that he is also a physician makes his advice even more helpful. I believe you have already made the largest step in beginning the " letting go " process. You realize the need for it and, though it's hard for you, you are realistic about that and not in denial. With the Father's help, you can face this and I belive you are already in the process of doing so. I pray things go well over the next day or so and that you can get your Mom settled with hospice care. You will be so amazed at how much just the comfort of knowing you have real help will make a difference in your stress levels. As always, I love you my friend and I am praying for you. God bless! Love and hugs.......... Diane C. from TN > > > > > > > > > > > > > > > > > > > > > > Hello, My mother is 59 years old and was diagnosed > > with > > > > > > > > Advanced > > > > > > > > > > Cirrhosis of the liver in feb. 2008. She has had > > several > > > > > > episodes > > > > > > > > of > > > > > > > > > > Encephalopathy over the years. She has been in and > > out of > > > > the > > > > > > > > > > hospital 7 times in 3 months. She also stayed at a > > care > > > > > > facility > > > > > > > > for > > > > > > > > > > a month. She now lives with my husband, daughter and > > I. > > > > She > > > > > > has > > > > > > > > had 5 > > > > > > > > > > varices banded, she has ascites, edema, UTI, > > > > encephalopathy > > > > > > and > > > > > > > > > > dementia symptoms. She is now on 5 water pills daily > > and > > > > she > > > > > > > > takes 4 > > > > > > > > > > doses of Lactulose. She has had to have fluid drained > > > > from > > > > > > her > > > > > > > > > > stomach twice now. I really need some support and > > advice. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2008 Report Share Posted August 16, 2008 Thanks Bobby, I appreciate the information. I will talk to our hospice nurse. So you also have Cirrhosis of the liver? Did you have it while taking care of Ardis? Stefanie > > > > > > > > > > Diane > > > > > Wow it has been a hard two weeks. My mom had Encephalopathy so so > > > > bad......... .I left her in the ER to call my husband and when I > came > > > > back in the ER I found her walking around half naked and > dragging her > > > > torn up clothes bag around on her foot........ ..They would not > admit > > > > her to the hospital. Well I ended up calling the rehabilitation > > > > center.....She was there for about 5 days. She is now back at home > > > > and on hospice. The hospice people are so helpful, I love > > > > them........ .. > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2008 Report Share Posted August 16, 2008 Stefanie, My mom used the Hospice morphine for about a week at a pretty low dose and did fine. What are your concerns about using the morphine? Hope your picnic was wonderful. Pamela Re: liver Cirrhosis Hey Bobby what is agonal breathing? I have never heard of that before. The hospice made us a kit for my mother for when she gets really ill and it has morphine in it. I am very scared of her using morphine. I also have a question for you. When Ardis became very confused what did the Doctors prescribe for her to take to calm her down? My mother can't take Ativan, Clonipin, or several other relaxants because they give her the opposite effect when she is confused. She gets anxious, angry and uncontrollable. If you have any suggestions please let me know thanks. Stefanie > > > > > > > > Diane > > > > Wow it has been a hard two weeks. My mom had Encephalopathy so so > > > bad......... .I left her in the ER to call my husband and when I came > > > back in the ER I found her walking around half naked and dragging her > > > torn up clothes bag around on her foot........ ..They would not admit > > > her to the hospital. Well I ended up calling the rehabilitation > > > center.....She was there for about 5 days. She is now back at home > > > and on hospice. The hospice people are so helpful, I love > > > them........ .. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2008 Report Share Posted August 16, 2008 You know, I was. I didnt even know it though until she was in the hospital the very last time. I sat with her every day, even when I was suppose to be at work. My flower gardens were two blocks from University of Colorado health sciences center, and I would do a little weeding, and disappear to " use the restroom " . I was a horticulturist for the city of Denver. I have learned things in this group that lead me to believe that I have been sick since 2001 or so. This is from my blog back in June. It tells of how I realized I was in trouble. http://billybobswildride.blogspot.com/2008/06/catching-up.html My doctors kept telling me that I wasn't sick, and after Ardis died, I picked up the bottle again and drank hard for another month and a half before hitting total rock bottom. I quit cold turkey around September 11, 2006, and developed DT's, and had to be hospitalized in an inpatient facility. I had my liver biopsy when they took out my gallbladder in late November, 2006. Re: liver Cirrhosis Thanks Bobby, I appreciate the information. I will talk to our hospice nurse. So you also have Cirrhosis of the liver? Did you have it while taking care of Ardis? Stefanie > > > > > > > > > > Diane > > > > > Wow it has been a hard two weeks. My mom had Encephalopathy so so > > > > bad......... .I left her in the ER to call my husband and when I > came > > > > back in the ER I found her walking around half naked and > dragging her > > > > torn up clothes bag around on her foot........ ..They would not > admit > > > > her to the hospital. Well I ended up calling the rehabilitation > > > > center.....She was there for about 5 days. She is now back at home > > > > and on hospice. The hospice people are so helpful, I love > > > > them........ .. > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Stefanie, I am so glad you're going to have the day to get out and enjoy yourself! That gives me such a sense of refreshing for you! I pray your picnic was wonderful and that it helped to relax you a bit. I am also so very happy to hear that your Mom is having such a good day. It always makes us feel better when our loved one is feeling better and we can feel a bit hopeful. I know I do need to upload a couple of pics, but I just haven't gotten around to it yet! Truth be told, I just HATE pictures of myself! In my mind's eye, I try to see myself as the person I try to be and that doesn't include obese and lily white. Unfortunately, that's exactly what I am!!! UUGGGGHHHHH!!!! Anyway, I will get some pics up in the next few days, I promise! Praying your weekend is a wonderful one! Love and hugs............. Diane > > > > > > > > Diane thank you so much for your support.............. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Hi Everyone, my wife was/is a Hospice Nurse who is also stage 4 ALF. A lot of people think that morphine will make them addicts and all the other things that people see on TV shows. Actually the morphine will take the pain away, and they base the amount given on what the patient tells them about the pain. Yes as time goes on and the pain increases the amount of morphine given will increase but the idea behind Hospice is to make the patient pain free as much as possible, and to have a quality of life at home or in the hospital(yes they do go to hospitals), that will allow them to live and die with diginity. God Bless Kurt Subject: Re: Re: liver Cirrhosis To: livercirrhosissupport Date: Saturday, August 16, 2008, 9:19 PM Stefanie, My mom used the Hospice morphine for about a week at a pretty low dose and did fine. What are your concerns about using the morphine? Hope your picnic was wonderful. Pamela Re: liver Cirrhosis Hey Bobby what is agonal breathing? I have never heard of that before. The hospice made us a kit for my mother for when she gets really ill and it has morphine in it. I am very scared of her using morphine. I also have a question for you. When Ardis became very confused what did the Doctors prescribe for her to take to calm her down? My mother can't take Ativan, Clonipin, or several other relaxants because they give her the opposite effect when she is confused. She gets anxious, angry and uncontrollable. If you have any suggestions please let me know thanks. Stefanie > > > > > > > > Diane > > > > Wow it has been a hard two weeks. My mom had Encephalopathy so so > > > bad......... .I left her in the ER to call my husband and when I came > > > back in the ER I found her walking around half naked and dragging her > > > torn up clothes bag around on her foot........ ..They would not admit > > > her to the hospital. Well I ended up calling the rehabilitation > > > center.....She was there for about 5 days. She is now back at home > > > and on hospice. The hospice people are so helpful, I love > > > them........ .. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 My husband cannot take Morphine; it causes him to hallucinate and become extremely aggitated. Is there something else they could give him once he reaches the stage to need that? Diane C. from TN > > Hi Everyone, my wife was/is a Hospice Nurse who is also stage 4 ALF. > A lot of people think that morphine will make them addicts and all the other things that people see on TV shows............ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Hi Diane, yes there is, but not sure what it is. My wife is not available or I would ask her. Tell the Hospice Nurse and they can help you out. God Bless Kurt Subject: Re: liver Cirrhosis To: livercirrhosissupport Date: Sunday, August 17, 2008, 8:49 AM My husband cannot take Morphine; it causes him to hallucinate and become extremely aggitated. Is there something else they could give him once he reaches the stage to need that? Diane C. from TN > > Hi Everyone, my wife was/is a Hospice Nurse who is also stage 4 ALF. > A lot of people think that morphine will make them addicts and all the other things that people see on TV shows....... ..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Diane Our day in the mountains yesterday was refreshing. It stormed and rained on us while we were there. I have always loved the rain. My mom is now back to being confused. Her urine test came back and her red blood cell count is up and there is still bacteria. I can not figure out why antibiotics are not clearing it up. She has had the UTI for about 4 weeks now. She started a new series of antibiotics today. I sure hope Hospice can help us tonight if her confusion gets worse. For some reason she seems to get so demanding and upset and me when she is like this. Right now she can't seem to stop talking. Most of what she says does not make sense although her words are very clear, her understanding is off the wall. I so want to have good times with her, but it is so hard when she is yelling at me. I know it is not her, its the liver. I wish I could give her mine and make her better. I feel like I have no control over anything right now. I wish I could go back in time and make everything better again. I know, it is wishful thinking. I know I need to turn everything over to the Lord and learn to let go. It is just so hard to do. Your friend Stefanie > > > > > > > > > > Diane thank you so much for your support.............. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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