Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Dear , you have been on one hell of a roller coaster ride. No one can criticize you for the way you have handled things. I hope your husband will make it. I am a believer in God, and the simple but beautiful fact that he will go when it is his time, and not one single minute before. The reason I am so faithful is inside of my story, if you have some time to kill please read it. http://onethreezeroonethree.blogspot.com/ It is about a wonderful friend and how I am alive today because of the lessons learned from her. I hope everything turns out ok, but as my daughter told me when I was first diagnosed with ESLD- " don't worry, everything will be OK in the end. If it's not OK, then it's not the end. " You husband is a wise man. Humans are all born with a beginning and and end. Between them is the thing called life and how we live it is who we are. Good luck. Welcome to our family. Love, Bobby ________________________________ To: livercirrhosissupport Sent: Mon, March 7, 2011 10:04:16 PM Subject: Hi From Wa. State Hello.. My name is . I am married to paul and we have 5 older children with families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I met paul when the 10 yr old was 5 months and we brought our daughter age 6 home from the hospital at birth. I am 58 & is 60:) I will not go into everything, but shorten things up which is why I wanted to join this group. In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at UWMC in Seattle to get on transplant list then. He passed all of the health tests, but was still turned down for transplant as the ss thought he was ambivalent. She asked him if he was scared to which he said " no, life is terminal and nobody is going to get out alive. " Even though his MELD was 18, he was not feeling in ill health, so he was not afraid. To make it short, he began to have health issues in the middle of 2009. Still his MELD score had dropped by then to 12. As time went by, he began to have other problems like anemia, low plateletts, etc. Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding problems (varices and confusion.) His MELD score went to 18. In November 2010, his doctor told him he needed to make up his mind about going back for transplant eval. asshe was not going to ask him again. At this time, he was in stage C. I never bothered him about his decision. I was so grateful for the training and the work I did as a Crisis Clinic Counselor. I simply let him know I loved him and wanted him around, but would respect any decision eh made. Liver transplant is so huge. had experienced many health problems in his life and also had a battle with Crohns from a young age. He did say YES to transplant and in Dec. 2011, start the procedure. However; he got sick fast and ddi not have all the testing done when eh was admitted to hospital for Pancreatitis in January. From there he plummeted downward and then went to the prettiest shade of yellow. I was married to the golden man of my dreams. As much as I pleaded with him, he simply would not lay that golden egg! His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were up there. He had to go to ER a couple of times for bleeding and finally on 2/3, he was rushed back to the hospital and then taken back to UWMC. His MELD then was 40. His kidneys were failing and something was going on with his heart and his blood was 'churning'. The transplant team decided to complete his testing and said he will not get out before he had a transplant. My life was turned upside down. He was the one that always handled the bills, etc. I knew he was dying. On 2/17, he was officially put on the list and was #1. Now our prayers were that a liver come up in time. On 2/23, UW doctor called me to say they had an offer of a liver. I said it was my husband's decision. This was from a 20 yr old donor who was an IV drug user. He said YES. And on 2/25, he had his transplant. He is still in the hospital and last night was put back into ICU with respiratory issues. So far, they cannot find anything. I have quite a bit of support. When this started, I put together a care plan, etc. as I am trained in the Wraparound iniatiative and have helped other families put together care teams. This does not stop me from being afraid. I am so scared at times. All this time, I have not broken down once, trying to be strong for our kids. I kn ow eventually, it will come..all the deep wracking sobs from within. The one thing I have hated most is( all the people who really mean well) saying " Everything will be alright " You see, things are not alright and they may never be alright. WOW have I learned a lot and I am grateful for this roller coaster ride as well because it is a learning experience. Even though there are going to be bumps and grin ds, I want to learn and hopefully be a support to others. I am sorry this si so long. Hope I have not bored you. Would like to make many friends though. Those on this group will understand... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 ,if you are looking for friends, you have just found a whole bunch of them, some who have gone through what you are going through, and some who are going through what your husband is going through and some who have been on both sides, caretakers and then find out they have the disease them selves like Bobby. I think what you have to remember is that you are not the counselor this time. Yes what you have learned might help some, but you also need a counselor yourself, like the social workers at the hospital, and this group. I am sure you have heard the saying about lawyers who handle their own cases having a fool for a client. And doctors shouldn't be treating themselves. You don't have to wait to have that breakdown, IMHO, the sooner the better, don't force yourself to be strong. You will actually be stronger after you let it all out. In 1988 I was physically attacked. I managed to fight the guy off, and cops arrested him. At that time, rape and attempted rape weren't talked about, it was shameful for the victim. Well, that was the best therapy for me. I needed to talk. And I did. If you feel like crying, then cry. There is no shame in crying. You might want to choose the place and time, but relieve all that stress or you will get sick yourself. The bathtub might be a good place, privacy, and all that water to wash off your face when you are done. I don't know if you are a believer or not, but if you are, just know that God has you in his arms and is cradling you like a baby. God Bless you. Jan > Hello.. > My name is . I am married to paul and we have 5 older children with families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I met paul when the 10 yr old was 5 months and we brought our daughter age 6 home from the hospital at birth. I am 58 & is 60:) > I will not go into everything, but shorten things up which is why I wanted to join this group. > In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at UWMC in Seattle to get on transplant list then. He passed all of the health tests, but was still turned down for transplant as the ss thought he was ambivalent. She asked him if he was scared to which he said " no, life is terminal and nobody is going to get out alive. " > Even though his MELD was 18, he was not feeling in ill health, so he was not afraid. > To make it short, he began to have health issues in the middle of 2009. Still his MELD score had dropped by then to 12. As time went by, he began to have other problems like anemia, low plateletts, etc. > Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding problems (varices and confusion.) His MELD score went to 18. In November 2010, his doctor told him he needed to make up his mind about going back for transplant eval. asshe was not going to ask him again. At this time, he was in stage C. > I never bothered him about his decision. I was so grateful for the training and the work I did as a Crisis Clinic Counselor. I simply let him know I loved him and wanted him around, but would respect any decision eh made. Liver transplant is so huge. had experienced many health problems in his life and also had a battle with Crohns from a young age. > He did say YES to transplant and in Dec. 2011, start the procedure. However; he got sick fast and ddi not have all the testing done when eh was admitted to hospital for Pancreatitis in January. From there he plummeted downward and then went to the prettiest shade of yellow. I was married to the golden man of my dreams. As much as I pleaded with him, he simply would not lay that golden egg! > His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were up there. He had to go to ER a couple of times for bleeding and finally on 2/3, he was rushed back to the hospital and then taken back to UWMC. His MELD then was 40. His kidneys were failing and something was going on with his heart and his blood was 'churning'. The transplant team decided to complete his testing and said he will not get out before he had a transplant. > My life was turned upside down. He was the one that always handled the bills, etc. I knew he was dying. > On 2/17, he was officially put on the list and was #1. Now our prayers were that a liver come up in time. > On 2/23, UW doctor called me to say they had an offer of a liver. I said it was my husband's decision. This was from a 20 yr old donor who was an IV drug user. He said YES. And on 2/25, he had his transplant. He is still in the hospital and last night was put back into ICU with respiratory issues. So far, they cannot find anything. > I have quite a bit of support. When this started, I put together a care plan, etc. as I am trained in the Wraparound iniatiative and have helped other families put together care teams. > This does not stop me from being afraid. I am so scared at times. All this time, I have not broken down once, trying to be strong for our kids. I kn ow eventually, it will come..all the deep wracking sobs from within. > The one thing I have hated most is( all the people who really mean well) saying " Everything will be alright " > You see, things are not alright and they may never be alright. > WOW have I learned a lot and I am grateful for this roller coaster ride as well because it is a learning experience. Even though there are going to be bumps and grin ds, I want to learn and hopefully be a support to others. > I am sorry this si so long. Hope I have not bored you. Would like to make many friends though. Those on this group will understand... > > > > > > ------------------------------------ > > Group Email: livercirrhosissupport > web address: > http://groups.yahoo.com/group/livercirrhosissupport/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Hi : I'm Jackie. I was so interested in your story. My husband, , also was diagnosed with cirrhosis from an unknown cause. He had his transplant on May 26, 2010 and is doing well. We had quite a roller coaster ride too. As a matter of fact I am writing a book about our experience. I am hoping it will help others. I hope things begin to turn around and they can find a cause for your husband's respiratory problems. Please stay with us and keep us updated. You will find so many people here who truly care. It's ok to cry and let your feelings out. We all need to do that at times. When my husband was first diagnosed with liver cancer I felt all alone and that's what I told our pastor. He told me I was never alone, and that God was always with me. Of course, we don't feel like God is with us when we're in crisis because we can't physically see God. But he also told me another thing that helped us all. He told me that it's not good to hide my feelings of being scared. and I needed to share our feelings with each other and our two sons so that when one of us was vulnerable the others would maybe have the strength that we needed at that particular time. That was very good advice and got us thru some of our worst days. I hope I have been of some help to you. Hoping to hear from you again soon. Jackie Subject: Hi From Wa. State To: livercirrhosissupport Date: Tuesday, March 8, 2011, 12:04 AM  Hello.. My name is . I am married to paul and we have 5 older children with families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I met paul when the 10 yr old was 5 months and we brought our daughter age 6 home from the hospital at birth. I am 58 & is 60:) I will not go into everything, but shorten things up which is why I wanted to join this group. In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at UWMC in Seattle to get on transplant list then. He passed all of the health tests, but was still turned down for transplant as the ss thought he was ambivalent. She asked him if he was scared to which he said " no, life is terminal and nobody is going to get out alive. " Even though his MELD was 18, he was not feeling in ill health, so he was not afraid. To make it short, he began to have health issues in the middle of 2009. Still his MELD score had dropped by then to 12. As time went by, he began to have other problems like anemia, low plateletts, etc. Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding problems (varices and confusion.) His MELD score went to 18. In November 2010, his doctor told him he needed to make up his mind about going back for transplant eval. asshe was not going to ask him again. At this time, he was in stage C. I never bothered him about his decision. I was so grateful for the training and the work I did as a Crisis Clinic Counselor. I simply let him know I loved him and wanted him around, but would respect any decision eh made. Liver transplant is so huge. had experienced many health problems in his life and also had a battle with Crohns from a young age. He did say YES to transplant and in Dec. 2011, start the procedure. However; he got sick fast and ddi not have all the testing done when eh was admitted to hospital for Pancreatitis in January. From there he plummeted downward and then went to the prettiest shade of yellow. I was married to the golden man of my dreams. As much as I pleaded with him, he simply would not lay that golden egg! His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were up there. He had to go to ER a couple of times for bleeding and finally on 2/3, he was rushed back to the hospital and then taken back to UWMC. His MELD then was 40. His kidneys were failing and something was going on with his heart and his blood was 'churning'. The transplant team decided to complete his testing and said he will not get out before he had a transplant. My life was turned upside down. He was the one that always handled the bills, etc. I knew he was dying. On 2/17, he was officially put on the list and was #1. Now our prayers were that a liver come up in time. On 2/23, UW doctor called me to say they had an offer of a liver. I said it was my husband's decision. This was from a 20 yr old donor who was an IV drug user. He said YES. And on 2/25, he had his transplant. He is still in the hospital and last night was put back into ICU with respiratory issues. So far, they cannot find anything. I have quite a bit of support. When this started, I put together a care plan, etc. as I am trained in the Wraparound iniatiative and have helped other families put together care teams. This does not stop me from being afraid. I am so scared at times. All this time, I have not broken down once, trying to be strong for our kids. I kn ow eventually, it will come..all the deep wracking sobs from within. The one thing I have hated most is( all the people who really mean well) saying " Everything will be alright " You see, things are not alright and they may never be alright. WOW have I learned a lot and I am grateful for this roller coaster ride as well because it is a learning experience. Even though there are going to be bumps and grin ds, I want to learn and hopefully be a support to others. I am sorry this si so long. Hope I have not bored you. Would like to make many friends though. Those on this group will understand... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 , this is just a welcome note from me....will post more later. I am presently recovering from total knee replacements...5 weeks on one knee,and 2 weeks on the other--still lots of pain  in one knee. But,this isn't about me! You certainly have been on " The Beast " -roller coaster ride!! My husband was diagnosed almost 6 years ago with ESLD due to NASH. We've had our ups and downs...but for now he's holding his own...he has compensated liver function and for that we are very thankful. One thing I noticed in your post is that you have a terriufic sense of humor...that's probably What's  kept you sane!! I think you have have a sense of humor to with ESLD or it will drive you to the depths of depression. I have been so scared at times & cry at times for fear of losing him,but we have to keep forging ahead. What else can we do? I really want to say WELCOME !! You are going to love it here. We are family. I have been so thankful for finding this forum ......I guess it was almost 5 years ago. We listen to each other,give advice when asked,pray for each other,grieve with one another and love one another! We all have that common bond......and we , above all......understand!  Jill S.                                                                                  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. ________________________________ To: livercirrhosissupport Sent: Tue, March 8, 2011 12:04:16 AM Subject: Hi From Wa. State  Hello.. My name is . I am married to paul and we have 5 older children with families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I met paul when the 10 yr old was 5 months and we brought our daughter age 6 home from the hospital at birth. I am 58 & is 60:) I will not go into everything, but shorten things up which is why I wanted to join this group. In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at UWMC in Seattle to get on transplant list then. He passed all of the health tests, but was still turned down for transplant as the ss thought he was ambivalent. She asked him if he was scared to which he said " no, life is terminal and nobody is going to get out alive. " Even though his MELD was 18, he was not feeling in ill health, so he was not afraid. To make it short, he began to have health issues in the middle of 2009. Still his MELD score had dropped by then to 12. As time went by, he began to have other problems like anemia, low plateletts, etc. Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding problems (varices and confusion.) His MELD score went to 18. In November 2010, his doctor told him he needed to make up his mind about going back for transplant eval. asshe was not going to ask him again. At this time, he was in stage C. I never bothered him about his decision. I was so grateful for the training and the work I did as a Crisis Clinic Counselor. I simply let him know I loved him and wanted him around, but would respect any decision eh made. Liver transplant is so huge. had experienced many health problems in his life and also had a battle with Crohns from a young age. He did say YES to transplant and in Dec. 2011, start the procedure. However; he got sick fast and ddi not have all the testing done when eh was admitted to hospital for Pancreatitis in January. From there he plummeted downward and then went to the prettiest shade of yellow. I was married to the golden man of my dreams. As much as I pleaded with him, he simply would not lay that golden egg! His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were up there. He had to go to ER a couple of times for bleeding and finally on 2/3, he was rushed back to the hospital and then taken back to UWMC. His MELD then was 40. His kidneys were failing and something was going on with his heart and his blood was 'churning'. The transplant team decided to complete his testing and said he will not get out before he had a transplant. My life was turned upside down. He was the one that always handled the bills, etc. I knew he was dying. On 2/17, he was officially put on the list and was #1. Now our prayers were that a liver come up in time. On 2/23, UW doctor called me to say they had an offer of a liver. I said it was my husband's decision. This was from a 20 yr old donor who was an IV drug user. He said YES. And on 2/25, he had his transplant. He is still in the hospital and last night was put back into ICU with respiratory issues. So far, they cannot find anything. I have quite a bit of support. When this started, I put together a care plan, etc. as I am trained in the Wraparound iniatiative and have helped other families put together care teams. This does not stop me from being afraid. I am so scared at times. All this time, I have not broken down once, trying to be strong for our kids. I kn ow eventually, it will come..all the deep wracking sobs from within. The one thing I have hated most is( all the people who really mean well) saying " Everything will be alright " You see, things are not alright and they may never be alright. WOW have I learned a lot and I am grateful for this roller coaster ride as well because it is a learning experience. Even though there are going to be bumps and grin ds, I want to learn and hopefully be a support to others. I am sorry this si so long. Hope I have not bored you. Would like to make many friends though. Those on this group will understand... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Hi Bobbie, Thanks so much. I did read your blog early this morning and enjoyed it so much..the love and the passion was powerful. What a wonderful tribute to someone so beautiful. My husband had said " Nobody is going to tell me when I am going to die. It will be between God and me. " I do truly believe I have been on a roller coaster ride; but one so many have been on is familiar and sim ilar. The wonderful things that one learns is that while in a situation, you are not alone as someone else has probably been down that same road and maybe experienced things more severe. I believe there are always reasons why, even though we often do not understand why. I am optimistic my husband will make it, but not without the trials..after all, it is a huge thing. The body rejects a little thing like a sliver or splinter, let alone a foreign organ...Then God gave some men the ability to do amazing things and help others. God bless you.. > > Dear , you have been on one hell of a roller coaster ride. No one can > criticize you for the way you have handled things. I hope your husband will make > it. I am a believer in God, and the simple but beautiful fact that he will go > when it is his time, and not one single minute before. The reason I am so > faithful is inside of my story, if you have some time to kill please read it. > > > http://onethreezeroonethree.blogspot.com/ > > It is about a wonderful friend and how I am alive today because of the lessons > learned from her. I hope everything turns out ok, but as my daughter told me > when I was first diagnosed with ESLD- " don't worry, everything will be OK in the > end. If it's not OK, then it's not the end. " You husband is a wise man. Humans > are all born with a beginning and and end. Between them is the thing called life > and how we live it is who we are. Good luck. Welcome to our family. Love, Bobby > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Jan, Thanks for your reply and wisdom. I only know too well about lawyers handling their own cases:) I am sorry you think I am doing things totally on my own..I am not. I do have others around me. My main part was to put together a support team, people of our choosing and then put it to work. I do have a counselor friend I can talk to. I have always found it hard to break down until all is over..even when my oldest son was kidnapped at a young age, I did not break down till he was found. I had been down this road about 13 years ago, when my youngest brother age 33 had acute liver failure and I was one of his carergivers. His last few hours will forever haunt me and when my hubby was dx'd, it tore me down. I did not want to go through it again and I put it in my mind I had to be strong. (protect myself) Our social worker now, is the same one that turned him down last time and I felt she has learned some things also. I was very calm in explainin g to her that some people, like my husband, need a sense of humor in order to cope and it is not always a bad thing. However; she is not one I will turn to. just because. Thank you so much though for your comment. > > Hello.. > > My name is . I am married to paul and we have 5 older children with families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I met paul when the 10 yr old was 5 months and we brought our daughter age 6 home from the hospital at birth. I am 58 & is 60:) > > I will not go into everything, but shorten things up which is why I wanted to join this group. > > In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at UWMC in Seattle to get on transplant list then. He passed all of the health tests, but was still turned down for transplant as the ss thought he was ambivalent. She asked him if he was scared to which he said " no, life is terminal and nobody is going to get out alive. " > > Even though his MELD was 18, he was not feeling in ill health, so he was not afraid. > > To make it short, he began to have health issues in the middle of 2009. Still his MELD score had dropped by then to 12. As time went by, he began to have other problems like anemia, low plateletts, etc. > > Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding problems (varices and confusion.) His MELD score went to 18. In November 2010, his doctor told him he needed to make up his mind about going back for transplant eval. asshe was not going to ask him again. At this time, he was in stage C. > > I never bothered him about his decision. I was so grateful for the training and the work I did as a Crisis Clinic Counselor. I simply let him know I loved him and wanted him around, but would respect any decision eh made. Liver transplant is so huge. had experienced many health problems in his life and also had a battle with Crohns from a young age. > > He did say YES to transplant and in Dec. 2011, start the procedure. However; he got sick fast and ddi not have all the testing done when eh was admitted to hospital for Pancreatitis in January. From there he plummeted downward and then went to the prettiest shade of yellow. I was married to the golden man of my dreams. As much as I pleaded with him, he simply would not lay that golden egg! > > His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were up there. He had to go to ER a couple of times for bleeding and finally on 2/3, he was rushed back to the hospital and then taken back to UWMC. His MELD then was 40. His kidneys were failing and something was going on with his heart and his blood was 'churning'. The transplant team decided to complete his testing and said he will not get out before he had a transplant. > > My life was turned upside down. He was the one that always handled the bills, etc. I knew he was dying. > > On 2/17, he was officially put on the list and was #1. Now our prayers were that a liver come up in time. > > On 2/23, UW doctor called me to say they had an offer of a liver. I said it was my husband's decision. This was from a 20 yr old donor who was an IV drug user. He said YES. And on 2/25, he had his transplant. He is still in the hospital and last night was put back into ICU with respiratory issues. So far, they cannot find anything. > > I have quite a bit of support. When this started, I put together a care plan, etc. as I am trained in the Wraparound iniatiative and have helped other families put together care teams. > > This does not stop me from being afraid. I am so scared at times. All this time, I have not broken down once, trying to be strong for our kids. I kn ow eventually, it will come..all the deep wracking sobs from within. > > The one thing I have hated most is( all the people who really mean well) saying " Everything will be alright " > > You see, things are not alright and they may never be alright. > > WOW have I learned a lot and I am grateful for this roller coaster ride as well because it is a learning experience. Even though there are going to be bumps and grin ds, I want to learn and hopefully be a support to others. > > I am sorry this si so long. Hope I have not bored you. Would like to make many friends though. Those on this group will understand... > > > > > > > > > > > > ------------------------------------ > > > > Group Email: livercirrhosissupport > > web address: > > http://groups.yahoo.com/group/livercirrhosissupport/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Hi Jackie, Thanks for the inspiration. WOW, so john also had idiopathic cirrhosis. When did he get liver cancer? You are the first person I have com e acrodd with an unknown cause. I think writing a book is a great idea. Many are interested and I wish you well on it. I took part a few years ago in writing a book cxalled " Autism: Heartfelt Thoughts From Mothers " as I was one of the moms and then I donated one to our local library. I know that crying is a great release..it will come in time. So far today, he is still in ICU and they were trying to get him up and moving. Has your husband gotten up to speed now? I worry most about his immune system sincewe have a child in school. The one in school never gets sick. The one at home is always sick though:) Thank you again, Jackie. hugs, > > > > Subject: Hi From Wa. State > To: livercirrhosissupport > Date: Tuesday, March 8, 2011, 12:04 AM > > > Â > > > > Hello.. > My name is . I am married to paul and we have 5 older children with families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I met paul when the 10 yr old was 5 months and we brought our daughter age 6 home from the hospital at birth. I am 58 & is 60:) > I will not go into everything, but shorten things up which is why I wanted to join this group. > In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at UWMC in Seattle to get on transplant list then. He passed all of the health tests, but was still turned down for transplant as the ss thought he was ambivalent. She asked him if he was scared to which he said " no, life is terminal and nobody is going to get out alive. " > Even though his MELD was 18, he was not feeling in ill health, so he was not afraid. > To make it short, he began to have health issues in the middle of 2009. Still his MELD score had dropped by then to 12. As time went by, he began to have other problems like anemia, low plateletts, etc. > Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding problems (varices and confusion.) His MELD score went to 18. In November 2010, his doctor told him he needed to make up his mind about going back for transplant eval. asshe was not going to ask him again. At this time, he was in stage C. > I never bothered him about his decision. I was so grateful for the training and the work I did as a Crisis Clinic Counselor. I simply let him know I loved him and wanted him around, but would respect any decision eh made. Liver transplant is so huge. had experienced many health problems in his life and also had a battle with Crohns from a young age. > He did say YES to transplant and in Dec. 2011, start the procedure. However; he got sick fast and ddi not have all the testing done when eh was admitted to hospital for Pancreatitis in January. From there he plummeted downward and then went to the prettiest shade of yellow. I was married to the golden man of my dreams. As much as I pleaded with him, he simply would not lay that golden egg! > His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were up there. He had to go to ER a couple of times for bleeding and finally on 2/3, he was rushed back to the hospital and then taken back to UWMC. His MELD then was 40. His kidneys were failing and something was going on with his heart and his blood was 'churning'. The transplant team decided to complete his testing and said he will not get out before he had a transplant. > My life was turned upside down. He was the one that always handled the bills, etc. I knew he was dying. > On 2/17, he was officially put on the list and was #1. Now our prayers were that a liver come up in time. > On 2/23, UW doctor called me to say they had an offer of a liver. I said it was my husband's decision. This was from a 20 yr old donor who was an IV drug user. He said YES. And on 2/25, he had his transplant. He is still in the hospital and last night was put back into ICU with respiratory issues. So far, they cannot find anything. > I have quite a bit of support. When this started, I put together a care plan, etc. as I am trained in the Wraparound iniatiative and have helped other families put together care teams. > This does not stop me from being afraid. I am so scared at times. All this time, I have not broken down once, trying to be strong for our kids. I kn ow eventually, it will come..all the deep wracking sobs from within. > The one thing I have hated most is( all the people who really mean well) saying " Everything will be alright " > You see, things are not alright and they may never be alright. > WOW have I learned a lot and I am grateful for this roller coaster ride as well because it is a learning experience. Even though there are going to be bumps and grin ds, I want to learn and hopefully be a support to others. > I am sorry this si so long. Hope I have not bored you. Would like to make many friends though. Those on this group will understand... > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 - I understand about the sense of humor. My cardio had just written me two prescriptions to replace old meds when he asked me if I needed any more drugs. I told him no, I wasn't in the business of selling them on the street, so I was just fine. We know each other very well after 12 years, so he understood I was joking and laughed. But when I told my kidney doctor who is oriental and not the best English speaker that I didn't want to have a bone marrow test because they hurt, he took me literally until I told him that of course if he thought I needed it I would have it, anything to solve this anemia problem. And he laughed a little too when he realized I wasn't serious. But other people just don't seem to think it is appropriate to be joking around about serious situations. My grandson's brain was oozing out the back of his skull over his spine. When they went to have him evaluated for surgery, my son in law asked the doctor if they couldn't just turn him upside down and shake it back in there. I hope that social worker will continue to learn that just because we joke, doesn't mean we aren't serious when we have to be. For me, the snappy comebacks just come right out of mouth without me thinking about them, amaze myself sometimes. But it helps me to deal with difficult problems, and it is probably the same with your husband. I am glad you have a counselor you can go to. And maybe, if you both feel uncomfortable with the social worker you could ask for a differet one. I have had to learn to hire and fire doctors to get the quality of care I need. I am going to see if I can change doctors for the second time within a year after this last one made two bad calls in one visit. I was there, but I am not sure where he was. As to going it alone, some people do that, and it totally wears them out, they don't want other people to know how bad it is, or the patient doesn't want pity from his friends and relatives. It is great you already have support lined up. Jan > Jan, > Thanks for your reply and wisdom. I only know too well about lawyers handling their own cases:) I am sorry you think I am doing things totally on my own..I am not. I do have others around me. My main part was to put together a support team, people of our choosing and then put it to work. I do have a counselor friend I can talk to. I have always found it hard to break down until all is over..even when my oldest son was kidnapped at a young age, I did not break down till he was found. I had been down this road about 13 years ago, when my youngest brother age 33 had acute liver failure and I was one of his carergivers. His last few hours will forever haunt me and when my hubby was dx'd, it tore me down. I did not want to go through it again and I put it in my mind I had to be strong. (protect myself) > Our social worker now, is the same one that turned him down last time and I felt she has learned some things also. I was very calm in explainin g to her that some people, like my husband, need a sense of humor in order to cope and it is not always a bad thing. However; she is not one I will turn to. just because. > Thank you so much though for your comment. > > > > >> > Hello.. >> > My name is . I am married to paul and we have 5 older children with families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I met paul when the 10 yr old was 5 months and we brought our daughter age 6 home from the hospital at birth. I am 58 & is 60:) >> > I will not go into everything, but shorten things up which is why I wanted to join this group. >> > In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at UWMC in Seattle to get on transplant list then. He passed all of the health tests, but was still turned down for transplant as the ss thought he was ambivalent. She asked him if he was scared to which he said " no, life is terminal and nobody is going to get out alive. " >> > Even though his MELD was 18, he was not feeling in ill health, so he was not afraid. >> > To make it short, he began to have health issues in the middle of 2009. Still his MELD score had dropped by then to 12. As time went by, he began to have other problems like anemia, low plateletts, etc. >> > Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding problems (varices and confusion.) His MELD score went to 18. In November 2010, his doctor told him he needed to make up his mind about going back for transplant eval. asshe was not going to ask him again. At this time, he was in stage C. >> > I never bothered him about his decision. I was so grateful for the training and the work I did as a Crisis Clinic Counselor. I simply let him know I loved him and wanted him around, but would respect any decision eh made. Liver transplant is so huge. had experienced many health problems in his life and also had a battle with Crohns from a young age. >> > He did say YES to transplant and in Dec. 2011, start the procedure. However; he got sick fast and ddi not have all the testing done when eh was admitted to hospital for Pancreatitis in January. From there he plummeted downward and then went to the prettiest shade of yellow. I was married to the golden man of my dreams. As much as I pleaded with him, he simply would not lay that golden egg! >> > His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were up there. He had to go to ER a couple of times for bleeding and finally on 2/3, he was rushed back to the hospital and then taken back to UWMC. His MELD then was 40. His kidneys were failing and something was going on with his heart and his blood was 'churning'. The transplant team decided to complete his testing and said he will not get out before he had a transplant. >> > My life was turned upside down. He was the one that always handled the bills, etc. I knew he was dying. >> > On 2/17, he was officially put on the list and was #1. Now our prayers were that a liver come up in time. >> > On 2/23, UW doctor called me to say they had an offer of a liver. I said it was my husband's decision. This was from a 20 yr old donor who was an IV drug user. He said YES. And on 2/25, he had his transplant. He is still in the hospital and last night was put back into ICU with respiratory issues. So far, they cannot find anything. >> > I have quite a bit of support. When this started, I put together a care plan, etc. as I am trained in the Wraparound iniatiative and have helped other families put together care teams. >> > This does not stop me from being afraid. I am so scared at times. All this time, I have not broken down once, trying to be strong for our kids. I kn ow eventually, it will come..all the deep wracking sobs from within. >> > The one thing I have hated most is( all the people who really mean well) saying " Everything will be alright " >> > You see, things are not alright and they may never be alright. >> > WOW have I learned a lot and I am grateful for this roller coaster ride as well because it is a learning experience. Even though there are going to be bumps and grin ds, I want to learn and hopefully be a support to others. >> > I am sorry this si so long. Hope I have not bored you. Would like to make many friends though. Those on this group will understand... >> > >> > >> > >> > >> > >> > ------------------------------------ >> > >> > Group Email: livercirrhosissupport >> > web address: >> > http://groups.yahoo.com/group/livercirrhosissupport/ >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Hi : It's pretty amazing that got cirrhosis from an unknown cause. They ruled out every kind of hepatitis and all kinds of other stuff. It was interesting in retrospect though that one of his drs asked him if he had ever been overseas. He spent 1 1/2 years in the ines when he was in the air force in the 1960's. Hmm. He could have gotten bit by an insect in a tropical climate. That would do it. It could have laid dormant for years. He's a mosquito magnet anyway. But to answer your question the liver cancer was discovered by accident. He had had bleeding varices in July of 2007 and had to be checked for more varices on a regular basis. In January of 2009 they found no new varices but his liver dr was curious as to why his liver seemed a little more enlarged than previously. He wanted an ultrasound. Then he saw a grey area on the ultrasound and wanted a better look so he ordered an MRI. The MRI showed 3 tumors. When we went to the cancer surgeon he was amazed that they had been found. He said they usually don't find liver cancer until it's too late. So his liver dr saved his life. It's quite a story. Hoping your husband is a little stronger today. Give him a hug for us and tell him not to give up. Things will get better, we are hoping. Keep me posted, ok? Praying for you. Love, Jackie Subject: Re: Hi From Wa. State To: livercirrhosissupport Date: Tuesday, March 8, 2011, 8:58 PM  Hi Jackie, Thanks for the inspiration. WOW, so john also had idiopathic cirrhosis. When did he get liver cancer? You are the first person I have com e acrodd with an unknown cause. I think writing a book is a great idea. Many are interested and I wish you well on it. I took part a few years ago in writing a book cxalled " Autism: Heartfelt Thoughts From Mothers " as I was one of the moms and then I donated one to our local library. I know that crying is a great release..it will come in time. So far today, he is still in ICU and they were trying to get him up and moving. Has your husband gotten up to speed now? I worry most about his immune system sincewe have a child in school. The one in school never gets sick. The one at home is always sick though:) Thank you again, Jackie. hugs, > > > > Subject: Hi From Wa. State > To: livercirrhosissupport > Date: Tuesday, March 8, 2011, 12:04 AM > > >  > > > > Hello.. > My name is . I am married to paul and we have 5 older children with families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I met paul when the 10 yr old was 5 months and we brought our daughter age 6 home from the hospital at birth. I am 58 & is 60:) > I will not go into everything, but shorten things up which is why I wanted to join this group. > In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at UWMC in Seattle to get on transplant list then. He passed all of the health tests, but was still turned down for transplant as the ss thought he was ambivalent. She asked him if he was scared to which he said " no, life is terminal and nobody is going to get out alive. " > Even though his MELD was 18, he was not feeling in ill health, so he was not afraid. > To make it short, he began to have health issues in the middle of 2009. Still his MELD score had dropped by then to 12. As time went by, he began to have other problems like anemia, low plateletts, etc. > Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding problems (varices and confusion.) His MELD score went to 18. In November 2010, his doctor told him he needed to make up his mind about going back for transplant eval. asshe was not going to ask him again. At this time, he was in stage C. > I never bothered him about his decision. I was so grateful for the training and the work I did as a Crisis Clinic Counselor. I simply let him know I loved him and wanted him around, but would respect any decision eh made. Liver transplant is so huge. had experienced many health problems in his life and also had a battle with Crohns from a young age. > He did say YES to transplant and in Dec. 2011, start the procedure. However; he got sick fast and ddi not have all the testing done when eh was admitted to hospital for Pancreatitis in January. From there he plummeted downward and then went to the prettiest shade of yellow. I was married to the golden man of my dreams. As much as I pleaded with him, he simply would not lay that golden egg! > His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were up there. He had to go to ER a couple of times for bleeding and finally on 2/3, he was rushed back to the hospital and then taken back to UWMC. His MELD then was 40. His kidneys were failing and something was going on with his heart and his blood was 'churning'. The transplant team decided to complete his testing and said he will not get out before he had a transplant. > My life was turned upside down. He was the one that always handled the bills, etc. I knew he was dying. > On 2/17, he was officially put on the list and was #1. Now our prayers were that a liver come up in time. > On 2/23, UW doctor called me to say they had an offer of a liver. I said it was my husband's decision. This was from a 20 yr old donor who was an IV drug user. He said YES. And on 2/25, he had his transplant. He is still in the hospital and last night was put back into ICU with respiratory issues. So far, they cannot find anything. > I have quite a bit of support. When this started, I put together a care plan, etc. as I am trained in the Wraparound iniatiative and have helped other families put together care teams. > This does not stop me from being afraid. I am so scared at times. All this time, I have not broken down once, trying to be strong for our kids. I kn ow eventually, it will come..all the deep wracking sobs from within. > The one thing I have hated most is( all the people who really mean well) saying " Everything will be alright " > You see, things are not alright and they may never be alright. > WOW have I learned a lot and I am grateful for this roller coaster ride as well because it is a learning experience. Even though there are going to be bumps and grin ds, I want to learn and hopefully be a support to others. > I am sorry this si so long. Hope I have not bored you. Would like to make many friends though. Those on this group will understand... > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Hi Jill, I am sorry for your pain with knees. I pray you get better soon. I can only imagine how you feel. I know I was miserable when I broke my tib fib, let alone have messed up knees. What is NASH? Is your husband on a list? With that the docs do not want you to take herbs, etc. which I understand at times. The one thing my hubby did was to drink 4 ounces of lemon juice a day as it is a liver cleanse and also helped with kidney stones. The 'beast' ride can be so rough at times. I do think a sense of humpor helps, and I also think there is a time for that and a time to be serious. Wish you the best and I look forward to hearing from you again. BTW, It is about you also. Maybe this group is not about us, but all of us are important and it seems we are all family here:) > > , this is just a welcome note from me....will post more later. I am > presently recovering from total knee replacements...5 weeks on one knee,and 2 > weeks on the other--still lots of pain  in one knee. But,this isn't about me! > You certainly have been on " The Beast " -roller coaster ride!! My husband was > diagnosed almost 6 years ago with ESLD due to NASH. We've had our ups and > downs...but for now he's holding his own...he has compensated liver function and > for that we are very thankful. One thing I noticed in your post is that you have > a terriufic sense of humor...that's probably What's  kept you sane!! I think you > have have a sense of humor to with ESLD or it will drive you to the depths of > depression. I have been so scared at times & cry at times for fear of losing > him,but we have to keep forging ahead. What else can we do? I really want to > say WELCOME !! You are going to love it here. We are family. I have been so > thankful for finding this forum ......I guess it was almost 5 years ago. We > listen to each other,give advice when asked,pray for each other,grieve with one > another and love one another! We all have that common bond......and we , above > all......understand!  Jill S. >                                  >  >  >  >  >  >  >  >       >                                    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. > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Tue, March 8, 2011 12:04:16 AM > Subject: Hi From Wa. State > >  > Hello.. > My name is . I am married to paul and we have 5 older children with > families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I > met paul when the 10 yr old was 5 months and we brought our daughter age 6 home > from the hospital at birth. I am 58 & is 60:) > I will not go into everything, but shorten things up which is why I wanted to > join this group. > > In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at > UWMC in Seattle to get on transplant list then. He passed all of the health > tests, but was still turned down for transplant as the ss thought he was > ambivalent. She asked him if he was scared to which he said " no, life is > terminal and nobody is going to get out alive. " > > Even though his MELD was 18, he was not feeling in ill health, so he was not > afraid. > To make it short, he began to have health issues in the middle of 2009. Still > his MELD score had dropped by then to 12. As time went by, he began to have > other problems like anemia, low plateletts, etc. > Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding > problems (varices and confusion.) His MELD score went to 18. In November 2010, > his doctor told him he needed to make up his mind about going back for > transplant eval. asshe was not going to ask him again. At this time, he was in > stage C. > I never bothered him about his decision. I was so grateful for the training and > the work I did as a Crisis Clinic Counselor. I simply let him know I loved him > and wanted him around, but would respect any decision eh made. Liver transplant > is so huge. had experienced many health problems in his life and also had a > battle with Crohns from a young age. > He did say YES to transplant and in Dec. 2011, start the procedure. However; he > got sick fast and ddi not have all the testing done when eh was admitted to > hospital for Pancreatitis in January. From there he plummeted downward and then > went to the prettiest shade of yellow. I was married to the golden man of my > dreams. As much as I pleaded with him, he simply would not lay that golden > egg! > His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were > up there. He had to go to ER a couple of times for bleeding and finally on 2/3, > he was rushed back to the hospital and then taken back to UWMC. His MELD then > was 40. His kidneys were failing and something was going on with his heart and > his blood was 'churning'. The transplant team decided to complete his testing > and said he will not get out before he had a transplant. > My life was turned upside down. He was the one that always handled the bills, > etc. I knew he was dying. > On 2/17, he was officially put on the list and was #1. Now our prayers were that > a liver come up in time. > On 2/23, UW doctor called me to say they had an offer of a liver. I said it was > my husband's decision. This was from a 20 yr old donor who was an IV drug user. > He said YES. And on 2/25, he had his transplant. He is still in the hospital and > last night was put back into ICU with respiratory issues. So far, they cannot > find anything. > I have quite a bit of support. When this started, I put together a care plan, > etc. as I am trained in the Wraparound iniatiative and have helped other > families put together care teams. > This does not stop me from being afraid. I am so scared at times. All this time, > I have not broken down once, trying to be strong for our kids. I kn ow > eventually, it will come..all the deep wracking sobs from within. > The one thing I have hated most is( all the people who really mean well) saying > " Everything will be alright " > > You see, things are not alright and they may never be alright. > WOW have I learned a lot and I am grateful for this roller coaster ride as well > because it is a learning experience. Even though there are going to be bumps and > grin ds, I want to learn and hopefully be a support to others. > I am sorry this si so long. Hope I have not bored you. Would like to make many > friends though. Those on this group will understand... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Jan, I loved this about your son in law. Your come back was great to and you are right about some who are more serious. A couple of years ago, had to see a cardio also and he was so sick of docs then. The cardio told him to come back in 3 months and said " Why? Don't you have your boat paid for yet? " I watched his cardio turn beat red and swore he was going to get a coronary LOL.. The next thing I knew..we were actually being escorted pout of the building! A day later, he got a certified letter saying he had to find someone else! We still chuckle over it. But then there are times, I have gotten really mad at him for not being serious. I would say that was when eh was trying to get on the list the first time. Not for what he said to the social worker, but it was joke after joke. I was steamin g as I do not thin k he has ever been serious. He even wanted our wedding day to be 4/1 to which I said NO! There is a time for bein g serious also..oh hum, I guess that is why I love him and that is why I want to throttle him:) I am still chuckling that you were not in the business of selling drugs LOL...I have fired docs also. As for the social worker, I plain old do not want one:) If I need anythin g, I will ask her..but that is it. I do not really want to discuss my feelings with her..I look forward to more with you:) > >> > Hello.. > >> > My name is . I am married to paul and we have 5 older children with families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I met paul when the 10 yr old was 5 months and we brought our daughter age 6 home from the hospital at birth. I am 58 & is 60:) > >> > I will not go into everything, but shorten things up which is why I wanted to join this group. > >> > In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at UWMC in Seattle to get on transplant list then. He passed all of the health tests, but was still turned down for transplant as the ss thought he was ambivalent. She asked him if he was scared to which he said " no, life is terminal and nobody is going to get out alive. " > >> > Even though his MELD was 18, he was not feeling in ill health, so he was not afraid. > >> > To make it short, he began to have health issues in the middle of 2009. Still his MELD score had dropped by then to 12. As time went by, he began to have other problems like anemia, low plateletts, etc. > >> > Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding problems (varices and confusion.) His MELD score went to 18. In November 2010, his doctor told him he needed to make up his mind about going back for transplant eval. asshe was not going to ask him again. At this time, he was in stage C. > >> > I never bothered him about his decision. I was so grateful for the training and the work I did as a Crisis Clinic Counselor. I simply let him know I loved him and wanted him around, but would respect any decision eh made. Liver transplant is so huge. had experienced many health problems in his life and also had a battle with Crohns from a young age. > >> > He did say YES to transplant and in Dec. 2011, start the procedure. However; he got sick fast and ddi not have all the testing done when eh was admitted to hospital for Pancreatitis in January. From there he plummeted downward and then went to the prettiest shade of yellow. I was married to the golden man of my dreams. As much as I pleaded with him, he simply would not lay that golden egg! > >> > His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were up there. He had to go to ER a couple of times for bleeding and finally on 2/3, he was rushed back to the hospital and then taken back to UWMC. His MELD then was 40. His kidneys were failing and something was going on with his heart and his blood was 'churning'. The transplant team decided to complete his testing and said he will not get out before he had a transplant. > >> > My life was turned upside down. He was the one that always handled the bills, etc. I knew he was dying. > >> > On 2/17, he was officially put on the list and was #1. Now our prayers were that a liver come up in time. > >> > On 2/23, UW doctor called me to say they had an offer of a liver. I said it was my husband's decision. This was from a 20 yr old donor who was an IV drug user. He said YES. And on 2/25, he had his transplant. He is still in the hospital and last night was put back into ICU with respiratory issues. So far, they cannot find anything. > >> > I have quite a bit of support. When this started, I put together a care plan, etc. as I am trained in the Wraparound iniatiative and have helped other families put together care teams. > >> > This does not stop me from being afraid. I am so scared at times. All this time, I have not broken down once, trying to be strong for our kids. I kn ow eventually, it will come..all the deep wracking sobs from within. > >> > The one thing I have hated most is( all the people who really mean well) saying " Everything will be alright " > >> > You see, things are not alright and they may never be alright. > >> > WOW have I learned a lot and I am grateful for this roller coaster ride as well because it is a learning experience. Even though there are going to be bumps and grin ds, I want to learn and hopefully be a support to others. > >> > I am sorry this si so long. Hope I have not bored you. Would like to make many friends though. Those on this group will understand... > >> > > >> > > >> > > >> > > >> > > >> > ------------------------------------ > >> > > >> > Group Email: livercirrhosissupport > >> > web address: > >> > http://groups.yahoo.com/group/livercirrhosissupport/ > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Jackie, Most (including me) had always figured cirrhosis was from drinking or drugs. Many ar4e surprised when I tell them has never had a drink or tried drugs. Good thing the tumors were found on (it was meant to be) My sister's husband died of liver cancer 5 years ago (probably drinking) and he also had Hep c, but he did not have cirrhosis. When they found the cancer, it was pretty fast from there. I worry about my ssiter as she is a reall;y heavy drinker and has had pancreatitis. She will not get checked as they wanted her to. I cannot really fault her in some ways, I am not sure I would want to know either:) The varices are so wicked. My husband has had a raspy voiuce since 2007 and now it seems louder and I wonder if the varices have anything to do with it. I am hoping to get some news on him today. I will see him tomorrow though. I feel bad I cannot see him more and I know he expects our kids to be taken care of. As it is, when eh comes home, we will have to travel twice a week up there and gas is not cheap:) hugs to you and yours. > > > > > > From: M <Mom2Braxton@> > > Subject: Hi From Wa. State > > To: livercirrhosissupport > > Date: Tuesday, March 8, 2011, 12:04 AM > > > > > >  > > > > > > > > Hello.. > > My name is . I am married to paul and we have 5 older children with families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I met paul when the 10 yr old was 5 months and we brought our daughter age 6 home from the hospital at birth. I am 58 & is 60:) > > I will not go into everything, but shorten things up which is why I wanted to join this group. > > In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at UWMC in Seattle to get on transplant list then. He passed all of the health tests, but was still turned down for transplant as the ss thought he was ambivalent. She asked him if he was scared to which he said " no, life is terminal and nobody is going to get out alive. " > > Even though his MELD was 18, he was not feeling in ill health, so he was not afraid. > > To make it short, he began to have health issues in the middle of 2009. Still his MELD score had dropped by then to 12. As time went by, he began to have other problems like anemia, low plateletts, etc. > > Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding problems (varices and confusion.) His MELD score went to 18. In November 2010, his doctor told him he needed to make up his mind about going back for transplant eval. asshe was not going to ask him again. At this time, he was in stage C. > > I never bothered him about his decision. I was so grateful for the training and the work I did as a Crisis Clinic Counselor. I simply let him know I loved him and wanted him around, but would respect any decision eh made. Liver transplant is so huge. had experienced many health problems in his life and also had a battle with Crohns from a young age. > > He did say YES to transplant and in Dec. 2011, start the procedure. However; he got sick fast and ddi not have all the testing done when eh was admitted to hospital for Pancreatitis in January. From there he plummeted downward and then went to the prettiest shade of yellow. I was married to the golden man of my dreams. As much as I pleaded with him, he simply would not lay that golden egg! > > His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were up there. He had to go to ER a couple of times for bleeding and finally on 2/3, he was rushed back to the hospital and then taken back to UWMC. His MELD then was 40. His kidneys were failing and something was going on with his heart and his blood was 'churning'. The transplant team decided to complete his testing and said he will not get out before he had a transplant. > > My life was turned upside down. He was the one that always handled the bills, etc. I knew he was dying. > > On 2/17, he was officially put on the list and was #1. Now our prayers were that a liver come up in time. > > On 2/23, UW doctor called me to say they had an offer of a liver. I said it was my husband's decision. This was from a 20 yr old donor who was an IV drug user. He said YES. And on 2/25, he had his transplant. He is still in the hospital and last night was put back into ICU with respiratory issues. So far, they cannot find anything. > > I have quite a bit of support. When this started, I put together a care plan, etc. as I am trained in the Wraparound iniatiative and have helped other families put together care teams. > > This does not stop me from being afraid. I am so scared at times. All this time, I have not broken down once, trying to be strong for our kids. I kn ow eventually, it will come..all the deep wracking sobs from within. > > The one thing I have hated most is( all the people who really mean well) saying " Everything will be alright " > > You see, things are not alright and they may never be alright. > > WOW have I learned a lot and I am grateful for this roller coaster ride as well because it is a learning experience. Even though there are going to be bumps and grin ds, I want to learn and hopefully be a support to others. > > I am sorry this si so long. Hope I have not bored you. Would like to make many friends though. Those on this group will understand... > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Nash is Non-Alcoholic Steato Hepatitis...basically it's liver failure caused by high cholesterol,high blood pressure,diabetes combined....hey everyone.,am I missing anything? All these things combined eventually take a toll on your l,iver and that's what happened to Ed. He is not listed yet because his MELD is only 10 and he has sustained compensated liver function...meaning his liver is damaged but is still working well enough to keep his body going. We are so thankful for that. However,his hepatologist says it could completely fail in 6 weeks,6 months or 6 years....we just don't know. There will be signs....like ascites. He does have esophageal varices which he gets banded regularly and some other complications...but we live each day to be a good one and are very grateful for our life together. Hmmmm...I'll sugest the lemon jiuce to him as he has kidney and gall stones! It may help! I need to go put an ice pack on my knee and hook the TENS unit to it.....trying to get the swelling down!                                                                            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. ________________________________ To: livercirrhosissupport Sent: Wed, March 9, 2011 11:26:16 AM Subject: Re: Hi From Wa. State  Hi Jill, I am sorry for your pain with knees. I pray you get better soon. I can only imagine how you feel. I know I was miserable when I broke my tib fib, let alone have messed up knees. What is NASH? Is your husband on a list? With that the docs do not want you to take herbs, etc. which I understand at times. The one thing my hubby did was to drink 4 ounces of lemon juice a day as it is a liver cleanse and also helped with kidney stones. The 'beast' ride can be so rough at times. I do think a sense of humpor helps, and I also think there is a time for that and a time to be serious. Wish you the best and I look forward to hearing from you again. BTW, It is about you also. Maybe this group is not about us, but all of us are important and it seems we are all family here:) > > , this is just a welcome note from me....will post more later. I am > presently recovering from total knee replacements...5 weeks on one knee,and 2 > weeks on the other--still lots of pain  in one knee. But,this isn't about me! > > You certainly have been on " The Beast " -roller coaster ride!! My husband was > > diagnosed almost 6 years ago with ESLD due to NASH. We've had our ups and > downs...but for now he's holding his own...he has compensated liver >function and > > for that we are very thankful. One thing I noticed in your post is that you >have > > a terriufic sense of humor...that's probably What's  kept you sane!! I >think you > > have have a sense of humor to with ESLD or it will drive you to the depths of > depression. I have been so scared at times & cry at times for fear of >losing > > him,but we have to keep forging ahead. What else can we do? I really want to > say WELCOME !! You are going to love it here. We are family. I have been so > thankful for finding this forum ......I guess it was almost 5 years ago. We > listen to each other,give advice when asked,pray for each other,grieve with one > > another and love one another! We all have that common bond......and we , above > all......understand!  Jill S. >                     \              >  >  >  >  >  >  >  >       >                     \                >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. > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Tue, March 8, 2011 12:04:16 AM > Subject: Hi From Wa. State > >  > Hello.. > My name is . I am married to paul and we have 5 older children with > families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) >I > > met paul when the 10 yr old was 5 months and we brought our daughter age 6 home > > from the hospital at birth. I am 58 & is 60:) > I will not go into everything, but shorten things up which is why I wanted to > join this group. > > In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at > UWMC in Seattle to get on transplant list then. He passed all of the health > tests, but was still turned down for transplant as the ss thought he was > ambivalent. She asked him if he was scared to which he said " no, life is > terminal and nobody is going to get out alive. " > > Even though his MELD was 18, he was not feeling in ill health, so he was not > afraid. > To make it short, he began to have health issues in the middle of 2009. Still > his MELD score had dropped by then to 12. As time went by, he began to have > other problems like anemia, low plateletts, etc. > Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding > problems (varices and confusion.) His MELD score went to 18. In November 2010, > his doctor told him he needed to make up his mind about going back for > transplant eval. asshe was not going to ask him again. At this time, he was in > stage C. > I never bothered him about his decision. I was so grateful for the training and > > the work I did as a Crisis Clinic Counselor. I simply let him know I loved him > and wanted him around, but would respect any decision eh made. Liver transplant > > is so huge. had experienced many health problems in his life and also had >a > > battle with Crohns from a young age. > He did say YES to transplant and in Dec. 2011, start the procedure. However; he > > got sick fast and ddi not have all the testing done when eh was admitted to > hospital for Pancreatitis in January. From there he plummeted downward and then > > went to the prettiest shade of yellow. I was married to the golden man of my > dreams. As much as I pleaded with him, he simply would not lay that golden > egg! > His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were > > up there. He had to go to ER a couple of times for bleeding and finally on 2/3, > > he was rushed back to the hospital and then taken back to UWMC. His MELD then > was 40. His kidneys were failing and something was going on with his heart and > his blood was 'churning'. The transplant team decided to complete his testing > and said he will not get out before he had a transplant. > My life was turned upside down. He was the one that always handled the bills, > etc. I knew he was dying. > On 2/17, he was officially put on the list and was #1. Now our prayers were >that > > a liver come up in time. > On 2/23, UW doctor called me to say they had an offer of a liver. I said it was > > my husband's decision. This was from a 20 yr old donor who was an IV drug user. > > He said YES. And on 2/25, he had his transplant. He is still in the hospital >and > > last night was put back into ICU with respiratory issues. So far, they cannot > find anything. > I have quite a bit of support. When this started, I put together a care plan, > etc. as I am trained in the Wraparound iniatiative and have helped other > families put together care teams. > This does not stop me from being afraid. I am so scared at times. All this >time, > > I have not broken down once, trying to be strong for our kids. I kn ow > eventually, it will come..all the deep wracking sobs from within. > The one thing I have hated most is( all the people who really mean well) saying > > " Everything will be alright " > > You see, things are not alright and they may never be alright. > WOW have I learned a lot and I am grateful for this roller coaster ride as well > > because it is a learning experience. Even though there are going to be bumps >and > > grin ds, I want to learn and hopefully be a support to others. > I am sorry this si so long. Hope I have not bored you. Would like to make many > friends though. Those on this group will understand... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 - tell the social worker you don't have a need for her services on a regular counseling basis because you already have some " counselors " who have been there, done that. I have a friend who is a nurse, but she is also somewhat of a know it all. Whenever I tell her something medical, or express a question about something I am wonderiing about, she has the answer, and many times because it is out of her field, she has no idea what I should do. Doesn't stop her from telling me though. She has worked as an evaluatinng nurse for women who are wondering if they are having a problem with a pregnancy and also with women who think they are going into premature labor. So when my daughter went into labor 2 1/2 months early she was the first one I called. Her information was right on, and her warnings of what to expect where great. But don't ask her about liver, kidneys or heart problems. Jan > Jan, I loved this about your son in law. Your come back was great to and you are right about some who are more serious. A couple of years ago, had to see a cardio also and he was so sick of docs then. The cardio told him to come back in 3 months and said " Why? Don't you have your boat paid for yet? " I watched his cardio turn beat red and swore he was going to get a coronary LOL.. The next thing I knew..we were actually being escorted pout of the building! A day later, he got a certified letter saying he had to find someone else! We still chuckle over it. But then there are times, I have gotten really mad at him for not being serious. I would say that was when eh was trying to get on the list the first time. Not for what he said to the social worker, but it was joke after joke. I was steamin g as I do not thin k he has ever been serious. He even wanted our wedding day to be 4/1 to which I said NO! There is a time for bein g serious also..oh hum, I guess that is why I love him and that is why I want to throttle him:) I am still chuckling that you were not in the business of selling drugs LOL...I have fired docs also. As for the social worker, I plain old do not want one:) If I need anythin g, I will ask her..but that is it. I do not really want to discuss my feelings with her..I look forward to more with you:) > > > > >> >> > Hello.. >> >> > My name is . I am married to paul and we have 5 older children with families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I met paul when the 10 yr old was 5 months and we brought our daughter age 6 home from the hospital at birth. I am 58 & is 60:) >> >> > I will not go into everything, but shorten things up which is why I wanted to join this group. >> >> > In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at UWMC in Seattle to get on transplant list then. He passed all of the health tests, but was still turned down for transplant as the ss thought he was ambivalent. She asked him if he was scared to which he said " no, life is terminal and nobody is going to get out alive. " >> >> > Even though his MELD was 18, he was not feeling in ill health, so he was not afraid. >> >> > To make it short, he began to have health issues in the middle of 2009. Still his MELD score had dropped by then to 12. As time went by, he began to have other problems like anemia, low plateletts, etc. >> >> > Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding problems (varices and confusion.) His MELD score went to 18. In November 2010, his doctor told him he needed to make up his mind about going back for transplant eval. asshe was not going to ask him again. At this time, he was in stage C. >> >> > I never bothered him about his decision. I was so grateful for the training and the work I did as a Crisis Clinic Counselor. I simply let him know I loved him and wanted him around, but would respect any decision eh made. Liver transplant is so huge. had experienced many health problems in his life and also had a battle with Crohns from a young age. >> >> > He did say YES to transplant and in Dec. 2011, start the procedure. However; he got sick fast and ddi not have all the testing done when eh was admitted to hospital for Pancreatitis in January. From there he plummeted downward and then went to the prettiest shade of yellow. I was married to the golden man of my dreams. As much as I pleaded with him, he simply would not lay that golden egg! >> >> > His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were up there. He had to go to ER a couple of times for bleeding and finally on 2/3, he was rushed back to the hospital and then taken back to UWMC. His MELD then was 40. His kidneys were failing and something was going on with his heart and his blood was 'churning'. The transplant team decided to complete his testing and said he will not get out before he had a transplant. >> >> > My life was turned upside down. He was the one that always handled the bills, etc. I knew he was dying. >> >> > On 2/17, he was officially put on the list and was #1. Now our prayers were that a liver come up in time. >> >> > On 2/23, UW doctor called me to say they had an offer of a liver. I said it was my husband's decision. This was from a 20 yr old donor who was an IV drug user. He said YES. And on 2/25, he had his transplant. He is still in the hospital and last night was put back into ICU with respiratory issues. So far, they cannot find anything. >> >> > I have quite a bit of support. When this started, I put together a care plan, etc. as I am trained in the Wraparound iniatiative and have helped other families put together care teams. >> >> > This does not stop me from being afraid. I am so scared at times. All this time, I have not broken down once, trying to be strong for our kids. I kn ow eventually, it will come..all the deep wracking sobs from within. >> >> > The one thing I have hated most is( all the people who really mean well) saying " Everything will be alright " >> >> > You see, things are not alright and they may never be alright. >> >> > WOW have I learned a lot and I am grateful for this roller coaster ride as well because it is a learning experience. Even though there are going to be bumps and grin ds, I want to learn and hopefully be a support to others. >> >> > I am sorry this si so long. Hope I have not bored you. Would like to make many friends though. Those on this group will understand... >> >> > >> >> > >> >> > >> >> > >> >> > >> >> > ------------------------------------ >> >> > >> >> > Group Email: livercirrhosissupport >> >> > web address: >> >> > http://groups.yahoo.com/group/livercirrhosissupport/ >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Maybe the doctor really did have a boat he had to pay for. lol Jan > Jan, I loved this about your son in law. Your come back was great to and you are right about some who are more serious. A couple of years ago, had to see a cardio also and he was so sick of docs then. The cardio told him to come back in 3 months and said " Why? Don't you have your boat paid for yet? " I watched his cardio turn beat red and swore he was going to get a coronary LOL.. The next thing I knew..we were actually being escorted pout of the building! A day later, he got a certified letter saying he had to find someone else! We still chuckle over it. But then there are times, I have gotten really mad at him for not being serious. I would say that was when eh was trying to get on the list the first time. Not for what he said to the social worker, but it was joke after joke. I was steamin g as I do not thin k he has ever been serious. He even wanted our wedding day to be 4/1 to which I said NO! There is a time for bein g serious also..oh hum, I guess that is why I love him and that is why I want to throttle him:) I am still chuckling that you were not in the business of selling drugs LOL...I have fired docs also. As for the social worker, I plain old do not want one:) If I need anythin g, I will ask her..but that is it. I do not really want to discuss my feelings with her..I look forward to more with you:) > > > > >> >> > Hello.. >> >> > My name is . I am married to paul and we have 5 older children with families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) I met paul when the 10 yr old was 5 months and we brought our daughter age 6 home from the hospital at birth. I am 58 & is 60:) >> >> > I will not go into everything, but shorten things up which is why I wanted to join this group. >> >> > In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at UWMC in Seattle to get on transplant list then. He passed all of the health tests, but was still turned down for transplant as the ss thought he was ambivalent. She asked him if he was scared to which he said " no, life is terminal and nobody is going to get out alive. " >> >> > Even though his MELD was 18, he was not feeling in ill health, so he was not afraid. >> >> > To make it short, he began to have health issues in the middle of 2009. Still his MELD score had dropped by then to 12. As time went by, he began to have other problems like anemia, low plateletts, etc. >> >> > Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding problems (varices and confusion.) His MELD score went to 18. In November 2010, his doctor told him he needed to make up his mind about going back for transplant eval. asshe was not going to ask him again. At this time, he was in stage C. >> >> > I never bothered him about his decision. I was so grateful for the training and the work I did as a Crisis Clinic Counselor. I simply let him know I loved him and wanted him around, but would respect any decision eh made. Liver transplant is so huge. had experienced many health problems in his life and also had a battle with Crohns from a young age. >> >> > He did say YES to transplant and in Dec. 2011, start the procedure. However; he got sick fast and ddi not have all the testing done when eh was admitted to hospital for Pancreatitis in January. From there he plummeted downward and then went to the prettiest shade of yellow. I was married to the golden man of my dreams. As much as I pleaded with him, he simply would not lay that golden egg! >> >> > His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were up there. He had to go to ER a couple of times for bleeding and finally on 2/3, he was rushed back to the hospital and then taken back to UWMC. His MELD then was 40. His kidneys were failing and something was going on with his heart and his blood was 'churning'. The transplant team decided to complete his testing and said he will not get out before he had a transplant. >> >> > My life was turned upside down. He was the one that always handled the bills, etc. I knew he was dying. >> >> > On 2/17, he was officially put on the list and was #1. Now our prayers were that a liver come up in time. >> >> > On 2/23, UW doctor called me to say they had an offer of a liver. I said it was my husband's decision. This was from a 20 yr old donor who was an IV drug user. He said YES. And on 2/25, he had his transplant. He is still in the hospital and last night was put back into ICU with respiratory issues. So far, they cannot find anything. >> >> > I have quite a bit of support. When this started, I put together a care plan, etc. as I am trained in the Wraparound iniatiative and have helped other families put together care teams. >> >> > This does not stop me from being afraid. I am so scared at times. All this time, I have not broken down once, trying to be strong for our kids. I kn ow eventually, it will come..all the deep wracking sobs from within. >> >> > The one thing I have hated most is( all the people who really mean well) saying " Everything will be alright " >> >> > You see, things are not alright and they may never be alright. >> >> > WOW have I learned a lot and I am grateful for this roller coaster ride as well because it is a learning experience. Even though there are going to be bumps and grin ds, I want to learn and hopefully be a support to others. >> >> > I am sorry this si so long. Hope I have not bored you. Would like to make many friends though. Those on this group will understand... >> >> > >> >> > >> >> > >> >> > >> >> > >> >> > ------------------------------------ >> >> > >> >> > Group Email: livercirrhosissupport >> >> > web address: >> >> > http://groups.yahoo.com/group/livercirrhosissupport/ >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Does a tens unit help with any fluid, or did you injure you knee and fluid is building up. For two weeks I have been able to get my feet into my flats which I bought specifcally because they were low cut and wearable when my feet were swollen or my spike heels. All my other shoes are cut too high to get my big feet into. I called my cardio, he wasn't available so his nurse said to go to the er. They gave me a 60 mg shot which worked quickly, and said to up my lasix from 60 mg a day to 80. They are worse now. Called my cardio today, been meaning to for a week, that memory thing again, but didn't get a call back. Will try again tomorrow, or maybe I need to get an appt earlier with my nephrologist because kidneys could be causing it too. But I have a tens unit, love it makes my back bearable, and would be wonderful if it would move that fluid out of my feet. Jan > Nash is Non-Alcoholic Steato Hepatitis...basically it's liver failure caused by > high cholesterol,high blood pressure,diabetes combined....hey everyone.,am I > missing anything? All these things combined eventually take a toll on your > l,iver and that's what happened to Ed. He is not listed yet because his MELD > is only 10 and he has sustained compensated liver function...meaning his liver > is damaged but is still working well enough to keep his body going. We are so > thankful for that. However,his hepatologist says it could completely fail in 6 > weeks,6 months or 6 years....we just don't know. There will be signs....like > ascites. He does have esophageal varices which he gets banded regularly and some > other complications...but we live each day to be a good one and are very > grateful for our life together. Hmmmm...I'll sugest the lemon jiuce to him as he > has kidney and gall stones! It may help! I need to go put an ice pack on my knee > and hook the TENS unit to it.....trying to get the swelling down! > > > 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. > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Wed, March 9, 2011 11:26:16 AM > Subject: Re: Hi From Wa. State > > > Hi Jill, > I am sorry for your pain with knees. I pray you get better soon. I can only > imagine how you feel. I know I was miserable when I broke my tib fib, let alone > have messed up knees. > What is NASH? Is your husband on a list? With that the docs do not want you to > take herbs, etc. which I understand at times. The one thing my hubby did was to > drink 4 ounces of lemon juice a day as it is a liver cleanse and also helped > with kidney stones. > The 'beast' ride can be so rough at times. > I do think a sense of humpor helps, and I also think there is a time for that > and a time to be serious. > Wish you the best and I look forward to hearing from you again. BTW, It is about > you also. Maybe this group is not about us, but all of us are important and it > seems we are all family here:) > > >> >> , this is just a welcome note from me....will post more later. I am >> presently recovering from total knee replacements...5 weeks on one knee,and 2 >> weeks on the other--still lots of pain  in one knee. But,this isn't about me! >> >> You certainly have been on " The Beast " -roller coaster ride!! My husband was >> >> diagnosed almost 6 years ago with ESLD due to NASH. We've had our ups and >> downs...but for now he's holding his own...he has compensated liver >>function and >> >> for that we are very thankful. One thing I noticed in your post is that you >>have >> >> a terriufic sense of humor...that's probably What's  kept you sane!! I >>think you >> >> have have a sense of humor to with ESLD or it will drive you to the depths of > >> depression. I have been so scared at times & cry at times for fear of >>losing >> >> him,but we have to keep forging ahead. What else can we do? I really want to > >> say WELCOME !! You are going to love it here. We are family. I have been so >> thankful for finding this forum ......I guess it was almost 5 years ago. We >> listen to each other,give advice when asked,pray for each other,grieve with one >> >> another and love one another! We all have that common bond......and we , above > >> all......understand!  Jill S. >>                                  >>  >>  >>  >>  >>  >>  >>  >>       >>                                    >>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. >> >> >> >> >> ________________________________ >> >> To: livercirrhosissupport >> Sent: Tue, March 8, 2011 12:04:16 AM >> Subject: Hi From Wa. State >> >>  >> Hello.. >> My name is . I am married to paul and we have 5 older children with >> families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) >>I >> >> met paul when the 10 yr old was 5 months and we brought our daughter age 6 home >> >> from the hospital at birth. I am 58 & is 60:) >> I will not go into everything, but shorten things up which is why I wanted to >> join this group. >> >> In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at > >> UWMC in Seattle to get on transplant list then. He passed all of the health >> tests, but was still turned down for transplant as the ss thought he was >> ambivalent. She asked him if he was scared to which he said " no, life is >> terminal and nobody is going to get out alive. " >> >> Even though his MELD was 18, he was not feeling in ill health, so he was not >> afraid. >> To make it short, he began to have health issues in the middle of 2009. Still >> his MELD score had dropped by then to 12. As time went by, he began to have >> other problems like anemia, low plateletts, etc. >> Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding > >> problems (varices and confusion.) His MELD score went to 18. In November 2010, > >> his doctor told him he needed to make up his mind about going back for >> transplant eval. asshe was not going to ask him again. At this time, he was in > >> stage C. >> I never bothered him about his decision. I was so grateful for the training and >> >> the work I did as a Crisis Clinic Counselor. I simply let him know I loved him > >> and wanted him around, but would respect any decision eh made. Liver transplant >> >> is so huge. had experienced many health problems in his life and also had >>a >> >> battle with Crohns from a young age. >> He did say YES to transplant and in Dec. 2011, start the procedure. However; he >> >> got sick fast and ddi not have all the testing done when eh was admitted to >> hospital for Pancreatitis in January. From there he plummeted downward and then >> >> went to the prettiest shade of yellow. I was married to the golden man of my >> dreams. As much as I pleaded with him, he simply would not lay that golden >> egg! >> His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT were >> >> up there. He had to go to ER a couple of times for bleeding and finally on 2/3, >> >> he was rushed back to the hospital and then taken back to UWMC. His MELD then >> was 40. His kidneys were failing and something was going on with his heart and > >> his blood was 'churning'. The transplant team decided to complete his testing >> and said he will not get out before he had a transplant. >> My life was turned upside down. He was the one that always handled the bills, >> etc. I knew he was dying. >> On 2/17, he was officially put on the list and was #1. Now our prayers were >>that >> >> a liver come up in time. >> On 2/23, UW doctor called me to say they had an offer of a liver. I said it was >> >> my husband's decision. This was from a 20 yr old donor who was an IV drug user. >> >> He said YES. And on 2/25, he had his transplant. He is still in the hospital >>and >> >> last night was put back into ICU with respiratory issues. So far, they cannot >> find anything. >> I have quite a bit of support. When this started, I put together a care plan, >> etc. as I am trained in the Wraparound iniatiative and have helped other >> families put together care teams. >> This does not stop me from being afraid. I am so scared at times. All this >>time, >> >> I have not broken down once, trying to be strong for our kids. I kn ow >> eventually, it will come..all the deep wracking sobs from within. >> The one thing I have hated most is( all the people who really mean well) saying >> >> " Everything will be alright " >> >> You see, things are not alright and they may never be alright. >> WOW have I learned a lot and I am grateful for this roller coaster ride as well >> >> because it is a learning experience. Even though there are going to be bumps >>and >> >> grin ds, I want to learn and hopefully be a support to others. >> I am sorry this si so long. Hope I have not bored you. Would like to make many > >> friends though. Those on this group will understand... >> >> >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Poor you! I'm so sorry you're swelling like that. It's miserable! I havs a TENS unit for my back pain.. I have had total knee replacements ion both knees lately....right knee 5 weeks ago and left knee 2 weeks ago, My Physical Therapists use a big E-stim unit and ice packs at the same time to help with swelling. When I told them I have a TENS ,they said I could do the same thing at home 3 times a day. They even told me hopw to make the slushy ice packs they use ! My Ortho doc I had seen for years alos told me I could use the TENS on my knees. My PT's say the TENs helps with blood flow which in turn helps with getting swelling down. I've had a heck of a time with the swelling in the left knee. Back to your feet....I know before my sister had her kidney transplant,her feet swelled terribly.You may want to check with your nephrologist. Hope it gets better!                                                                                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. ________________________________ To: livercirrhosissupport Sent: Wed, March 9, 2011 11:37:33 PM Subject: Re: Hi From Wa. State  Does a tens unit help with any fluid, or did you injure you knee and fluid is building up. For two weeks I have been able to get my feet into my flats which I bought specifcally because they were low cut and wearable when my feet were swollen or my spike heels. All my other shoes are cut too high to get my big feet into. I called my cardio, he wasn't available so his nurse said to go to the er. They gave me a 60 mg shot which worked quickly, and said to up my lasix from 60 mg a day to 80. They are worse now. Called my cardio today, been meaning to for a week, that memory thing again, but didn't get a call back. Will try again tomorrow, or maybe I need to get an appt earlier with my nephrologist because kidneys could be causing it too. But I have a tens unit, love it makes my back bearable, and would be wonderful if it would move that fluid out of my feet. Jan > Nash is Non-Alcoholic Steato Hepatitis...basically it's liver failure caused by > high cholesterol,high blood pressure,diabetes combined....hey everyone.,am I > missing anything? All these things combined eventually take a toll on your > l,iver and that's what happened to Ed. He is not listed yet because his MELD > is only 10 and he has sustained compensated liver function...meaning his liver > is damaged but is still working well enough to keep his body going. We are so > thankful for that. However,his hepatologist says it could completely fail in 6 > weeks,6 months or 6 years....we just don't know. There will be signs....like > ascites. He does have esophageal varices which he gets banded regularly and >some > other complications...but we live each day to be a good one and are very > grateful for our life together. Hmmmm...I'll sugest the lemon jiuce to him as >he > has kidney and gall stones! It may help! I need to go put an ice pack on my >knee > and hook the TENS unit to it.....trying to get the swelling down! > > >                                    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. > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Wed, March 9, 2011 11:26:16 AM > Subject: Re: Hi From Wa. State > > > Hi Jill, > I am sorry for your pain with knees. I pray you get better soon. I can only > imagine how you feel. I know I was miserable when I broke my tib fib, let alone > have messed up knees. > What is NASH? Is your husband on a list? With that the docs do not want you to > take herbs, etc. which I understand at times. The one thing my hubby did was to > drink 4 ounces of lemon juice a day as it is a liver cleanse and also helped > with kidney stones. > The 'beast' ride can be so rough at times. > I do think a sense of humpor helps, and I also think there is a time for that > and a time to be serious. > Wish you the best and I look forward to hearing from you again. BTW, It is >about > you also. Maybe this group is not about us, but all of us are important and it > seems we are all family here:) > > >> >> , this is just a welcome note from me....will post more later. I am >> presently recovering from total knee replacements...5 weeks on one knee,and 2 >> weeks on the other--still lots of pain  in one knee. But,this isn't about >me! >> >> You certainly have been on " The Beast " -roller coaster ride!! My husband >was >> >> diagnosed almost 6 years ago with ESLD due to NASH. We've had our ups and >> downs...but for now he's holding his own...he has compensated liver >>function and >> >> for that we are very thankful. One thing I noticed in your post is that you >>have >> >> a terriufic sense of humor...that's probably What's  kept you sane!! I >>think you >> >> have have a sense of humor to with ESLD or it will drive you to the depths of > >> depression. I have been so scared at times & cry at times for fear of >>losing >> >> him,but we have to keep forging ahead. What else can we do? I really want to > >> say WELCOME !! You are going to love it here. We are family. I have been so >> thankful for finding this forum ......I guess it was almost 5 years ago. We >> listen to each other,give advice when asked,pray for each other,grieve with >one >> >> another and love one another! We all have that common bond......and we , above > >> all......understand!  Jill S. >>                     \              >>  >>  >>  >>  >>  >>  >>  >>       >>                     \                >>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. >> >> >> >> >> ________________________________ >> >> To: livercirrhosissupport >> Sent: Tue, March 8, 2011 12:04:16 AM >> Subject: Hi From Wa. State >> >>  >> Hello.. >> My name is . I am married to paul and we have 5 older children with >> families of their own and we adopted 2 of my husband's grands (age 6 & 10 now) >>I >> >> met paul when the 10 yr old was 5 months and we brought our daughter age 6 >home >> >> from the hospital at birth. I am 58 & is 60:) >> I will not go into everything, but shorten things up which is why I wanted to >> join this group. >> >> In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill at > >> UWMC in Seattle to get on transplant list then. He passed all of the health >> tests, but was still turned down for transplant as the ss thought he was >> ambivalent. She asked him if he was scared to which he said " no, life is >> terminal and nobody is going to get out alive. " >> >> Even though his MELD was 18, he was not feeling in ill health, so he was not >> afraid. >> To make it short, he began to have health issues in the middle of 2009. Still >> his MELD score had dropped by then to 12. As time went by, he began to have >> other problems like anemia, low plateletts, etc. >> Finally, in 2010..last 1/2 of the year, he really went down hill with bleeding > >> problems (varices and confusion.) His MELD score went to 18. In November 2010, > >> his doctor told him he needed to make up his mind about going back for >> transplant eval. asshe was not going to ask him again. At this time, he was in > >> stage C. >> I never bothered him about his decision. I was so grateful for the training >and >> >> the work I did as a Crisis Clinic Counselor. I simply let him know I loved him > >> and wanted him around, but would respect any decision eh made. Liver >transplant >> >> is so huge. had experienced many health problems in his life and also had >>a >> >> battle with Crohns from a young age. >> He did say YES to transplant and in Dec. 2011, start the procedure. However; >he >> >> got sick fast and ddi not have all the testing done when eh was admitted to >> hospital for Pancreatitis in January. From there he plummeted downward and >then >> >> went to the prettiest shade of yellow. I was married to the golden man of my >> dreams. As much as I pleaded with him, he simply would not lay that golden >> egg! >> His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT >were >> >> up there. He had to go to ER a couple of times for bleeding and finally on >2/3, >> >> he was rushed back to the hospital and then taken back to UWMC. His MELD then >> was 40. His kidneys were failing and something was going on with his heart and > >> his blood was 'churning'. The transplant team decided to complete his testing >> and said he will not get out before he had a transplant. >> My life was turned upside down. He was the one that always handled the bills, >> etc. I knew he was dying. >> On 2/17, he was officially put on the list and was #1. Now our prayers were >>that >> >> a liver come up in time. >> On 2/23, UW doctor called me to say they had an offer of a liver. I said it >was >> >> my husband's decision. This was from a 20 yr old donor who was an IV drug >user. >> >> He said YES. And on 2/25, he had his transplant. He is still in the hospital >>and >> >> last night was put back into ICU with respiratory issues. So far, they cannot >> find anything. >> I have quite a bit of support. When this started, I put together a care plan, >> etc. as I am trained in the Wraparound iniatiative and have helped other >> families put together care teams. >> This does not stop me from being afraid. I am so scared at times. All this >>time, >> >> I have not broken down once, trying to be strong for our kids. I kn ow >> eventually, it will come..all the deep wracking sobs from within. >> The one thing I have hated most is( all the people who really mean well) >saying >> >> " Everything will be alright " >> >> You see, things are not alright and they may never be alright. >> WOW have I learned a lot and I am grateful for this roller coaster ride as >well >> >> because it is a learning experience. Even though there are going to be bumps >>and >> >> grin ds, I want to learn and hopefully be a support to others. >> I am sorry this si so long. Hope I have not bored you. Would like to make many > >> friends though. Those on this group will understand... >> >> >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2011 Report Share Posted March 12, 2011 Jill, I have had the big machines used on my back in therapy. Used to go every 3 months for 6 weeks when I returned to college and lifted heavy books all the time. Finally got a luggage cart and a milk carton plastic case, and it helped. I loved the the electric shock, unless they happened to put the lead right on my wing bone. I asked only half joking if I could have one at home. But they cost a small fortune for me. So, when the pain managment doctor suggested a tens unit and told me what it was, I was excited. I use mine as high as it will go. Had a little problem with that when the unit was attached to my back and I changed the batteries, wow, it was a shock, I wouldn't recommend it. I talked to the nurses for both my cardio and neph today and we don't think it is kidney related since they took that big gfr leap for the good 2 months ago. I was going to have bloodwork drawn today, but have lost my order, so will have to get a new one faxed to my dr. on Monday. Cardio said I should increase my lasix another 20 so I am taking 100 mg a day now. If that doesn't do it, I am supposed to call back and see where we go from here. I had a 7 week break this winter from playing for church to give me a chance to rest up from the anemia, and during that time, I injured my eye, medicine made my eyes super sensitive to light, my anemia treatent isn't working so going to a hemotologist on the 17th with a bone marrow test expected. Has anyone had one and how long before you felt like doing anything, how much pain and for how long? Now my pcp doctor is leaving which doesn't upset me too much, was thinking of changing anyway because he really blew it with my eye. So,, now I will be going to Dr. in , Arizona a 35 mile one way trip. I sure hope I like him because my options are getting whittled down. Today has been a weird day, been walking around as if I were in a fog, gigling a lot, Came home from choir practice, running a couple of errands, and then going out to eat and fell asleep for about 2 hours, so hard had trouble waking up. Now i am pretty wide awake except a little of the fog is hanging around. Life sure is amazing, no two days alike. Jan > Poor you! I'm so sorry you're swelling like that. It's miserable! I havs a TENS > unit for my back pain.. I have had total knee replacements ion both knees > lately....right knee 5 weeks ago and left knee 2 weeks ago, My Physical > Therapists use a big E-stim unit and ice packs at the same time to help with > swelling. When I told them I have a TENS ,they said I could do the same thing at > home 3 times a day. They even told me hopw to make the slushy ice packs they use > ! My Ortho doc I had seen for years alos told me I could use the TENS on my > knees. My PT's say the TENs helps with blood flow which in turn helps with > getting swelling down. I've had a heck of a time with the swelling in the left > knee. Back to your feet....I know before my sister had her kidney transplant,her > feet swelled terribly.You may want to check with your nephrologist. Hope it gets > better! > > > > > > > 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. > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Wed, March 9, 2011 11:37:33 PM > Subject: Re: Hi From Wa. State > > > Does a tens unit help with any fluid, or did you injure you knee and > fluid is building up. For two weeks I have been able to get my feet > into my flats which I bought specifcally because they were low cut and > wearable when my feet were swollen or my spike heels. All my other > shoes are cut too high to get my big feet into. I called my cardio, he > wasn't available so his nurse said to go to the er. They gave me a 60 > mg shot which worked quickly, and said to up my lasix from 60 mg a day > to 80. They are worse now. Called my cardio today, been meaning to > for a week, that memory thing again, but didn't get a call back. Will > try again tomorrow, or maybe I need to get an appt earlier with my > nephrologist because kidneys could be causing it too. But I have a > tens unit, love it makes my back bearable, and would be wonderful if > it would move that fluid out of my feet. Jan > > >> Nash is Non-Alcoholic Steato Hepatitis...basically it's liver failure caused > by >> high cholesterol,high blood pressure,diabetes combined....hey everyone.,am I >> missing anything? All these things combined eventually take a toll on your >> l,iver and that's what happened to Ed. He is not listed yet because his MELD >> is only 10 and he has sustained compensated liver function...meaning his liver >> is damaged but is still working well enough to keep his body going. We are so >> thankful for that. However,his hepatologist says it could completely fail in 6 >> weeks,6 months or 6 years....we just don't know. There will be signs....like >> ascites. He does have esophageal varices which he gets banded regularly and >>some >> other complications...but we live each day to be a good one and are very >> grateful for our life together. Hmmmm...I'll sugest the lemon jiuce to him as >>he >> has kidney and gall stones! It may help! I need to go put an ice pack on my >>knee >> and hook the TENS unit to it.....trying to get the swelling down! >> >> >> 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. >> >> >> >> >> ________________________________ >> >> To: livercirrhosissupport >> Sent: Wed, March 9, 2011 11:26:16 AM >> Subject: Re: Hi From Wa. State >> >> >> Hi Jill, >> I am sorry for your pain with knees. I pray you get better soon. I can only >> imagine how you feel. I know I was miserable when I broke my tib fib, let > alone >> have messed up knees. >> What is NASH? Is your husband on a list? With that the docs do not want you to >> take herbs, etc. which I understand at times. The one thing my hubby did was > to >> drink 4 ounces of lemon juice a day as it is a liver cleanse and also helped >> with kidney stones. >> The 'beast' ride can be so rough at times. >> I do think a sense of humpor helps, and I also think there is a time for that >> and a time to be serious. >> Wish you the best and I look forward to hearing from you again. BTW, It is >>about >> you also. Maybe this group is not about us, but all of us are important and it >> seems we are all family here:) >> >> >>> >>> , this is just a welcome note from me....will post more later. I am >>> presently recovering from total knee replacements...5 weeks on one knee,and 2 >>> weeks on the other--still lots of pain  in one knee. But,this isn't about >>me! >>> >>> You certainly have been on " The Beast " -roller coaster ride!! My husband >>was >>> >>> diagnosed almost 6 years ago with ESLD due to NASH. We've had our ups and >>> downs...but for now he's holding his own...he has compensated liver >>>function and >>> >>> for that we are very thankful. One thing I noticed in your post is that you >>>have >>> >>> a terriufic sense of humor...that's probably What's  kept you sane!! I >>>think you >>> >>> have have a sense of humor to with ESLD or it will drive you to the depths > of >> >>> depression. I have been so scared at times & cry at times for fear of >>>losing >>> >>> him,but we have to keep forging ahead. What else can we do? I really want > to >> >>> say WELCOME !! You are going to love it here. We are family. I have been so >>> thankful for finding this forum ......I guess it was almost 5 years ago. We >>> listen to each other,give advice when asked,pray for each other,grieve with >>one >>> >>> another and love one another! We all have that common bond......and we , > above >> >>> all......understand!  Jill S. >>>                                  >>>  >>>  >>>  >>>  >>>  >>>  >>>  >>>       >>>                                    >>>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. >>> >>> >>> >>> >>> ________________________________ >>> >>> To: livercirrhosissupport >>> Sent: Tue, March 8, 2011 12:04:16 AM >>> Subject: Hi From Wa. State >>> >>>  >>> Hello.. >>> My name is . I am married to paul and we have 5 older children with >>> families of their own and we adopted 2 of my husband's grands (age 6 & 10 > now) >>>I >>> >>> met paul when the 10 yr old was 5 months and we brought our daughter age 6 >>home >>> >>> from the hospital at birth. I am 58 & is 60:) >>> I will not go into everything, but shorten things up which is why I wanted to >>> join this group. >>> >>> In 2003, was dx'd with Idiopathic Cirrhosis. We went through the drill > at >> >>> UWMC in Seattle to get on transplant list then. He passed all of the health >>> tests, but was still turned down for transplant as the ss thought he was >>> ambivalent. She asked him if he was scared to which he said " no, life is >>> terminal and nobody is going to get out alive. " >>> >>> Even though his MELD was 18, he was not feeling in ill health, so he was not >>> afraid. >>> To make it short, he began to have health issues in the middle of 2009. Still >>> his MELD score had dropped by then to 12. As time went by, he began to have >>> other problems like anemia, low plateletts, etc. >>> Finally, in 2010..last 1/2 of the year, he really went down hill with > bleeding >> >>> problems (varices and confusion.) His MELD score went to 18. In November > 2010, >> >>> his doctor told him he needed to make up his mind about going back for >>> transplant eval. asshe was not going to ask him again. At this time, he was > in >> >>> stage C. >>> I never bothered him about his decision. I was so grateful for the training >>and >>> >>> the work I did as a Crisis Clinic Counselor. I simply let him know I loved > him >> >>> and wanted him around, but would respect any decision eh made. Liver >>transplant >>> >>> is so huge. had experienced many health problems in his life and also > had >>>a >>> >>> battle with Crohns from a young age. >>> He did say YES to transplant and in Dec. 2011, start the procedure. However; >>he >>> >>> got sick fast and ddi not have all the testing done when eh was admitted to >>> hospital for Pancreatitis in January. From there he plummeted downward and >>then >>> >>> went to the prettiest shade of yellow. I was married to the golden man of my >>> dreams. As much as I pleaded with him, he simply would not lay that golden >>> egg! >>> His liver #'s climbed fast to where his billirubin was 32.99 and AST & ALT >>were >>> >>> up there. He had to go to ER a couple of times for bleeding and finally on >>2/3, >>> >>> he was rushed back to the hospital and then taken back to UWMC. His MELD then >>> was 40. His kidneys were failing and something was going on with his heart > and >> >>> his blood was 'churning'. The transplant team decided to complete his testing >>> and said he will not get out before he had a transplant. >>> My life was turned upside down. He was the one that always handled the bills, >>> etc. I knew he was dying. >>> On 2/17, he was officially put on the list and was #1. Now our prayers were >>>that >>> >>> a liver come up in time. >>> On 2/23, UW doctor called me to say they had an offer of a liver. I said it >>was >>> >>> my husband's decision. This was from a 20 yr old donor who was an IV drug >>user. >>> >>> He said YES. And on 2/25, he had his transplant. He is still in the hospital >>>and >>> >>> last night was put back into ICU with respiratory issues. So far, they cannot >>> find anything. >>> I have quite a bit of support. When this started, I put together a care plan, >>> etc. as I am trained in the Wraparound iniatiative and have helped other >>> families put together care teams. >>> This does not stop me from being afraid. I am so scared at times. All this >>>time, >>> >>> I have not broken down once, trying to be strong for our kids. I kn ow >>> eventually, it will come..all the deep wracking sobs from within. >>> The one thing I have hated most is( all the people who really mean well) >>saying >>> >>> " Everything will be alright " >>> >>> You see, things are not alright and they may never be alright. >>> WOW have I learned a lot and I am grateful for this roller coaster ride as >>well >>> >>> because it is a learning experience. Even though there are going to be bumps >>>and >>> >>> grin ds, I want to learn and hopefully be a support to others. >>> I am sorry this si so long. Hope I have not bored you. Would like to make > many >> >>> friends though. Those on this group will understand... >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.