Guest guest Report post Posted August 4, 2008 What I did was start asking for copies of labs, CTscan reports and occasionally will ask to review my charts. They have never told me no. I suspect that if one doesn't ask for these the Physician just assumes you are leaving up to her/him? Now, you being a third party, your Mom the patient, they may have balked at that notion? Sometimes you'll have to wait a day or so to get the Radiologist CT scan report and unless you are pretty much well schooled in Anatomy/Phis. they can be hard to understand. A computer and a good search engine can make things a little more understandable. Unless you are a medical professional NEVER and I repeat NEVER use it to make your own diagnosis. It will however give you some questions to ask the Physician. Good Luck. CLE Subject: Re: Hello To: livercirrhosissupport Date: Monday, August 4, 2008, 10:57 AM I don't understand why it took so long to diagnose. St. Utah is such a small town with few doctors. Some of the ones we have see so many elderly patients that you end up being just a number to them. My moms Gastro. Doc. acts that way and there is not another one we can go to in this town. I believe he just didn't really care what was wrong with my mom. One time we went to an appointment with my mom and he started talking about her having diabetes and all this other information. Well my mom does not have diabetes, he was talking about another patient. Unbelievable to say the least. My mom had her gallbladder taken out 2 years ago. When we got all her hospital records a couple months ago, it says that he saw severe scarring on the liver when he did the surgery. They never gave that information to us or my mother back then. I would think that was malpractice. > > > > > > > > > > > > > > Hi to everyone, my name is Kurt and I am the > primary care > > > giver for > > > > > > > my wife who was told she has non-alcoholic > cirrhosis of > the liver. > > > > > > > According to her doctors she is in stage 4. > > > > > > > This was found out after being treated for > continued pain > after an > > > > > > > operation. > > > > > > > I also lost a sister in March of this year from > liver cancer. > > > > > > > > > > > > > > I was asked by my wife how I am handling all the > stress of > taking > > > > > > > care of her, my sister passing away, and helping > another > > > sister who > > > > > > > son passed away a year ago, and having some > problems. She > > > asked who > > > > > > > do I talk to about my concerns and feelings. > Thinking to > myself I > > > > > > > have never really sat down and talked to anyone > yet, but I > would > > > > > > > like to know how other care givers handle their > stress, who do > > > they > > > > > > > talk to etc. > > > > > > > > > > > > > > Oh what is bad(possible good), my wife is/was a > hospice nurse, > > > so I > > > > > > > know the doctors can bs her. > > > > > > > > > > > > > > Anyway sorry to ramble on, and thanks for letting > me join. > > > > > > > > > > > > > > > > > > > > > Kurt > > > > > > > > > > > > > I am so sorry to hear about your wife. My mother was > just > diagnosed > > > > > > with Cirrhosis of the liver in feb. 2008. She has been > in > and out of > > > > > > the emergency room 7 times in 3 months. She is also in > the later > > > > > > stages of liver Cirrhosis. She has been living with my > husband, > > > > > > daughter and I for a month. It is very draining to > take care of > > > her. I > > > > > > also need some support. I think I need to get some > hospice care. > > > I was > > > > > > just wondering if your wife is bed ridden. My mother > is not yet. > > > Well > > > > > > keep smiling the best you can. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > > > > Jan H > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 4, 2008 Jan My mom sure has had some Quack Quack doctors also. When the encephalopathy and dementia symptoms started with my mom they kept saying she had Bipolar (which she never had or never was diagnosed with0. It took our family a long time to find a doctor who would actually help her. Her PCP is really awesome, he orders all the tests she needs. > > > > > > > > > > > > > > > > > > Hi to everyone, my name is Kurt and I am the > > > primary care > > > > > giver for > > > > > > > > > my wife who was told she has non-alcoholic > > > cirrhosis of > > > the liver. > > > > > > > > > According to her doctors she is in stage 4. > > > > > > > > > This was found out after being treated for > > > continued pain > > > after an > > > > > > > > > operation. > > > > > > > > > I also lost a sister in March of this year from > > > liver cancer. > > > > > > > > > > > > > > > > > > I was asked by my wife how I am handling all the > > > stress of > > > taking > > > > > > > > > care of her, my sister passing away, and helping > > > another > > > > > sister who > > > > > > > > > son passed away a year ago, and having some > > > problems. She > > > > > asked who > > > > > > > > > do I talk to about my concerns and feelings. > > > Thinking to > > > myself I > > > > > > > > > have never really sat down and talked to anyone > > > yet, but I > > > would > > > > > > > > > like to know how other care givers handle their > > > stress, who do > > > > > they > > > > > > > > > talk to etc. > > > > > > > > > > > > > > > > > > Oh what is bad(possible good), my wife is/was a > > > hospice nurse, > > > > > so I > > > > > > > > > know the doctors can bs her. > > > > > > > > > > > > > > > > > > Anyway sorry to ramble on, and thanks for letting > > > me join. > > > > > > > > > > > > > > > > > > > > > > > > > > > Kurt > > > > > > > > > > > > > > > > > I am so sorry to hear about your wife. My mother was > > > just > > > diagnosed > > > > > > > > with Cirrhosis of the liver in feb. 2008. She has been > > > in > > > and out of > > > > > > > > the emergency room 7 times in 3 months. She is also in > > > the later > > > > > > > > stages of liver Cirrhosis. She has been living with my > > > husband, > > > > > > > > daughter and I for a month. It is very draining to > > > take care of > > > > > her. I > > > > > > > > also need some support. I think I need to get some > > > hospice care. > > > > > I was > > > > > > > > just wondering if your wife is bed ridden. My mother > > > is not yet. > > > > > Well > > > > > > > > keep smiling the best you can. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 4, 2008 Chief little Eagle My mother has a good PCP finally. He reads the results to me and orders the tests she needs. Thank goodness we found a doctor who cares about his patients. > > > > > > > > > > > > > > > > Hi to everyone, my name is Kurt and I am the > > primary care > > > > giver for > > > > > > > > my wife who was told she has non-alcoholic > > cirrhosis of > > the liver. > > > > > > > > According to her doctors she is in stage 4. > > > > > > > > This was found out after being treated for > > continued pain > > after an > > > > > > > > operation. > > > > > > > > I also lost a sister in March of this year > from > > liver cancer. > > > > > > > > > > > > > > > > I was asked by my wife how I am handling all > the > > stress of > > taking > > > > > > > > care of her, my sister passing away, and > helping > > another > > > > sister who > > > > > > > > son passed away a year ago, and having some > > problems. She > > > > asked who > > > > > > > > do I talk to about my concerns and feelings. > > Thinking to > > myself I > > > > > > > > have never really sat down and talked to > anyone > > yet, but I > > would > > > > > > > > like to know how other care givers handle > their > > stress, who do > > > > they > > > > > > > > talk to etc. > > > > > > > > > > > > > > > > Oh what is bad(possible good), my wife > is/was a > > hospice nurse, > > > > so I > > > > > > > > know the doctors can bs her. > > > > > > > > > > > > > > > > Anyway sorry to ramble on, and thanks for > letting > > me join. > > > > > > > > > > > > > > > > > > > > > > > > Kurt > > > > > > > > > > > > > > > I am so sorry to hear about your wife. My mother > was > > just > > diagnosed > > > > > > > with Cirrhosis of the liver in feb. 2008. She has > been > > in > > and out of > > > > > > > the emergency room 7 times in 3 months. She is > also in > > the later > > > > > > > stages of liver Cirrhosis. She has been living > with my > > husband, > > > > > > > daughter and I for a month. It is very draining > to > > take care of > > > > her. I > > > > > > > also need some support. I think I need to get > some > > hospice care. > > > > I was > > > > > > > just wondering if your wife is bed ridden. My > mother > > is not yet. > > > > Well > > > > > > > keep smiling the best you can. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > > > > > Jan H > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 24, 2008 Thanks for your warm welcome and yes I am very upset with all of my issues and doctors errors. I have now come to the point that none of us can live forever and I have 2 choices (1) I can sit and be depressed and give up and let this diease control me or (2) Accept that I have liver failure and pick myself up and live each day to it fullest and I will take control of my liver and health care and LIVE LAUGH and LOVE each day of my life. Jackie > > Hi, Jackie. My name is Bobby aka RWE which stands for robertwalkingeagle. I am so so sorry to hear about you and your liver. Wow, I would be SO pissed. I mean, I kind of am, because I never knew I was an alcoholic, seriously, I thought that alcoholics were drunk all the time, and got the shakes, and drank for breakfast, etc. I worked hard every day, only drank beer, after work, at HOME. Well, I have end stage liver diease. I have terrible pain, and I am on morphine. You had your gallbladder out and now you have end stage liver disease. I am here if you want to vent, and this group is great, we are glad to have you as a friend. I'm really sorry. I just came home from dinner and a movie with friends, my wife and I haven't been out for ONE YEAR. Can you believe that? And I saw your post, and I am so sad. I am going to say a prayer for you right now, because it's all I can do. Love, Bobby, aka RWE. > Sent via BlackBerry from T-Mobile > > Hello > > > Hi > I am Jackie and I have stage 4 end stage liver disease. I was diagnosed in Sept 07 after being put in the hospital for the worst pain I had ever had before.the sharp and stabbing pain was under my left rib cage and under my right rib area was a cramming like pain. I was in the hospital for 17 days going though every blood test out there, CAT and MRI and xrays of my whole body. Everything was coming back okay except some of my liver test were alittle off. So they did a liver biopsy and WOW I not only have stage 4 liver disease but I also have only 20% of my liver working. The other 80% is cirrhosis they say. > I am in shock now!! HOW can this be true?? I never smoked, I never did drugs;I have no tattoos I have no Hep A B C my gallbladder is out no problems there. SO HOW can this be right I ask?? Well in Jan 07 I had abdomal surgrey and it went sour Doctor error..Well anyways I was in alot of pain and Morphine was not working for me. So they started me on VicodinES every 6 hours and gave me shots of TORADOL(anti-inflamatory) every 8 hours for 16 days. I was pain free but Toradol shots are not to be given for more then 5 days because they kill the liver. So now I know how I got it. I had been telling the doctor I feel tierd and nausa and bad pains in my stomach and cant sleep at night but sleepy in the daytime. they said that it was me healing from my surgrey still. Well I now have a Doctor following me for a transplant one day at the U of Mich and I have the greatest husband and cargiver and my rock of support to help me thru all this I could > not make it with out him.. > Sorry for such a long story but now you all know about me and I look forward reading and learning from you too > .. > God bless all of you > Jackie > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 24, 2008 -Thank you for the warm welcome and I look forward to getting to know and enjoy the supportive and careing people I have seen on here. Thanks Jackie -- In livercirrhosissupport , " Diane Chandler " wrote: > > Hi Jackie and welcome to the group. I am so sorry to hear about your > illness and even more so since it seems to have been brought on by > error on the part of your healthcare provider. > > I don't have ESLD, but I am the caregiver for my husband, age 54, who > has it. I know you will find the support and answers to some of your > questions here. This group has been a God-send for me. Just to know > there are others out there going through what we're going through and > who are so willing to share has been such a great blessing to me. > > Please know that you and your husband are in my prayers daily and be > sure to keep us updated regarding the status of your transplant > listing. God bless! > > Love and hugs............ > > Diane C. from TN > > > > > > > > > Hi > > I am Jackie and I have stage 4 end stage liver disease. I was > diagnosed in Sept 07 after being put in the hospital for the worst > pain I had ever had before.the sharp and stabbing pain was under my > left rib cage and under my right rib area was a cramming like pain. I > was in the hospital for 17 days going though every blood test out > there, CAT and MRI and xrays of my whole body. Everything was coming > back okay except some of my liver test were alittle off. So they did > a liver biopsy and WOW I not only have stage 4 liver disease but I > also have only 20% of my liver working. The other 80% is cirrhosis > they say. > > I am in shock now!! HOW can this be true?? I never smoked, I > never did drugs;I have no tattoos I have no Hep A B C my gallbladder > is out no problems there. SO HOW can this be right I ask?? Well in > Jan 07 I had abdomal surgrey and it went sour Doctor error..Well > anyways I was in alot of pain and Morphine was not working for me. So > they started me on VicodinES every 6 hours and gave me shots of > TORADOL(anti-inflamatory) every 8 hours for 16 days. I was pain free > but Toradol shots are not to be given for more then 5 days because > they kill the liver. So now I know how I got it. I had been telling > the doctor I feel tierd and nausa and bad pains in my stomach and > cant sleep at night but sleepy in the daytime. they said that it was > me healing from my surgrey still. Well I now have a Doctor following > me for a transplant one day at the U of Mich and I have the greatest > husband and cargiver and my rock of support to help me thru all this > I could > > not make it with out him.. > > Sorry for such a long story but now you all know about me and I > look forward reading and learning from you too > > .. > > God bless all of you > > Jackie > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 24, 2008 Hi Jackie, Saw your post to RWE and just wanted to say that I think your attitude toward all this is fabulous! In my opinion, successful experiences with any difficulties in life begin with a good attitude. You have been a blessing to me already! God bless! Hugs............ Diane C. from TN > > -Thank you for the warm welcome and I look forward to getting to know > and enjoy the supportive and careing people I have seen on here. > Thanks > Jackie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 24, 2008 I cannot believe that they gave you toradol for 16 days. They gave it too my wife , but only for 5 days, but I was terrified by it because of this- http://www.rd.com/living-healthy/night-shift-nightmare/article38715.html After her last surgery this last May 31, I begged her to not take the toradol, they had given her a prescription of it, and I am so afraid of it. I hope you are going to sue them. Love, Bobby, aka RWE Hello > > > Hi > I am Jackie and I have stage 4 end stage liver disease. I was diagnosed in Sept 07 after being put in the hospital for the worst pain I had ever had before.the sharp and stabbing pain was under my left rib cage and under my right rib area was a cramming like pain. I was in the hospital for 17 days going though every blood test out there, CAT and MRI and xrays of my whole body. Everything was coming back okay except some of my liver test were alittle off. So they did a liver biopsy and WOW I not only have stage 4 liver disease but I also have only 20% of my liver working. The other 80% is cirrhosis they say. > I am in shock now!! HOW can this be true?? I never smoked, I never did drugs;I have no tattoos I have no Hep A B C my gallbladder is out no problems there. SO HOW can this be right I ask?? Well in Jan 07 I had abdomal surgrey and it went sour Doctor error..Well anyways I was in alot of pain and Morphine was not working for me. So they started me on VicodinES every 6 hours and gave me shots of TORADOL(anti- inflamatory) every 8 hours for 16 days. I was pain free but Toradol shots are not to be given for more then 5 days because they kill the liver. So now I know how I got it. I had been telling the doctor I feel tierd and nausa and bad pains in my stomach and cant sleep at night but sleepy in the daytime. they said that it was me healing from my surgrey still. Well I now have a Doctor following me for a transplant one day at the U of Mich and I have the greatest husband and cargiver and my rock of support to help me thru all this I could > not make it with out him.. > Sorry for such a long story but now you all know about me and I look forward reading and learning from you too > .. > God bless all of you > Jackie > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 24, 2008 Welcome Jackie, My name is Pamela, I was caretaker to my mom during her battle with non alcoholic cirrhosis. I'm so sorry to hear about your liver. Thrilled you have a supportive hubby, that's wonderful. It is good news that you will be considered for transplant! Welcome, there is a wealth of knowledge and compassion here! God Bless you! Pamela Hello Hi� ��I am Jackie and I have stage 4 end stage liver disease. I was diagnosed in�Sept 07 after being put in the hospital for the worst pain I had ever had before.the sharp and stabbing��pain was under my left rib cage and under my right rib area was a cramming like�pain. I was in the hospital for�17 days going though every blood test�out there, CAT and MRI and xrays of my whole body. Everything�was coming back�okay except some of my liver test were�alittle off. So they did a liver biopsy and WOW I not only have stage 4 liver disease but I also have only�20% of my liver working. The other 80% is cirrhosis they say.� ��� I am in shock now!! HOW can this be true?? I never smoked, I never did drugs;I have no tattoos I have no Hep A B C my gallbladder is out no problems there. SO HOW can this be right I ask?? Well in Jan 07 I had abdomal surgrey and it went� sour Doctor error..Well anyways I was in alot of pain and Morphine was not working for me. So they started me on VicodinES every 6 hours�and�gave me shots of TORADOL(anti-inflamatory) every 8 hours� for 16 days. I was pain free but Toradol shots are not to be given for more then 5 days because they kill the liver. So now I know how I got it. I had been telling the doctor I feel tierd and nausa and bad pains in my stomach and cant sleep at night but sleepy in the daytime. they said that it was me healing from my surgrey still. Well I now have a�Doctor following me for a transplant one day at the U of Mich and I have�the greatest husband and cargiver and my rock of�support to help me thru all this I could not make it with out him.. �� Sorry for such a long story but now you all know about me and I look forward reading and learning from you too .. God bless all of you Jackie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 24, 2008 Hey Bobby....great that you got out for dinner and a movie! Glad to hear it!!! Love, Pamela Re: Hello Hi, Jackie. My name is Bobby aka RWE which stands for robertwalkingeagle. I am so so sorry to hear about you and your liver. Wow, I would be SO pissed. I mean, I kind of am, because I never knew I was an alcoholic, seriously, I thought that alcoholics were drunk all the time, and got the shakes, and drank for breakfast, etc. I worked hard every day, only drank beer, after work, at HOME. Well, I have end stage liver diease. I have terrible pain, and I am on morphine. You had your gallbladder out and now you have end stage liver disease. I am here if you want to vent, and this group is great, we are glad to have you as a friend. I'm really sorry. I just came home from dinner and a movie with friends, my wife and I haven't been out for ONE YEAR. Can you believe that? And I saw your post, and I am so sad. I am going to say a prayer for you right now, because it's all I can do. Love, Bobby, aka RWE. Sent via BlackBerry from T-Mobile Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 25, 2008 ---welcome jackie, my husband too has end stage ,just diagnosed this month, very scary, i am glad you have a great husband to help you thru this, you have come to a wonderful place with alot of caring people who have lots of great info, you r in my prayers and if i can help in any way just holler.i am new to this and dont know a whole lot yet,others can serve you better here for info, but i can be a good listener ,know you are loved and held in caring reggard here. much love barby In livercirrhosissupport , Jackie Tuttle wrote: > > Hi > I am Jackie and I have stage 4 end stage liver disease. I was diagnosed in Sept 07 after being put in the hospital for the worst pain I had ever had before.the sharp and stabbing pain was under my left rib cage and under my right rib area was a cramming like pain. I was in the hospital for 17 days going though every blood test out there, CAT and MRI and xrays of my whole body. Everything was coming back okay except some of my liver test were alittle off. So they did a liver biopsy and WOW I not only have stage 4 liver disease but I also have only 20% of my liver working. The other 80% is cirrhosis they say. > I am in shock now!! HOW can this be true?? I never smoked, I never did drugs;I have no tattoos I have no Hep A B C my gallbladder is out no problems there. SO HOW can this be right I ask?? Well in Jan 07 I had abdomal surgrey and it went sour Doctor error..Well anyways I was in alot of pain and Morphine was not working for me. So they started me on VicodinES every 6 hours and gave me shots of TORADOL(anti-inflamatory) every 8 hours for 16 days. I was pain free but Toradol shots are not to be given for more then 5 days because they kill the liver. So now I know how I got it. I had been telling the doctor I feel tierd and nausa and bad pains in my stomach and cant sleep at night but sleepy in the daytime. they said that it was me healing from my surgrey still. Well I now have a Doctor following me for a transplant one day at the U of Mich and I have the greatest husband and cargiver and my rock of support to help me thru all this I could > not make it with out him.. > Sorry for such a long story but now you all know about me and I look forward reading and learning from you too > .. > God bless all of you > Jackie > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 25, 2008 Hi Barby! How was the AL trip? Hope you both had a great weekend and enjoyed your grandchildren. Was your little angel surprised? Bet she was thrilled!!! I hope Bobby was able to enjoy the trip. How is he? Thinkin of you both! Love and hugs........... Diane C. from TN > > > > Hi > > I am Jackie and I have stage 4 end stage liver disease. I was > diagnosed in Sept 07 after being put in the hospital for the worst > pain I had ever had before.the sharp and stabbing pain was under my > left rib cage and under my right rib area was a cramming like pain. I > was in the hospital for 17 days going though every blood test out > there, CAT and MRI and xrays of my whole body. Everything was coming > back okay except some of my liver test were alittle off. So they did > a liver biopsy and WOW I not only have stage 4 liver disease but I > also have only 20% of my liver working. The other 80% is cirrhosis > they say. > > I am in shock now!! HOW can this be true?? I never smoked, I > never did drugs;I have no tattoos I have no Hep A B C my gallbladder > is out no problems there. SO HOW can this be right I ask?? Well in > Jan 07 I had abdomal surgrey and it went sour Doctor error..Well > anyways I was in alot of pain and Morphine was not working for me. So > they started me on VicodinES every 6 hours and gave me shots of > TORADOL(anti-inflamatory) every 8 hours for 16 days. I was pain free > but Toradol shots are not to be given for more then 5 days because > they kill the liver. So now I know how I got it. I had been telling > the doctor I feel tierd and nausa and bad pains in my stomach and > cant sleep at night but sleepy in the daytime. they said that it was > me healing from my surgrey still. Well I now have a Doctor following > me for a transplant one day at the U of Mich and I have the greatest > husband and cargiver and my rock of support to help me thru all this > I could > > not make it with out him.. > > Sorry for such a long story but now you all know about me and I > look forward reading and learning from you too > > .. > > God bless all of you > > Jackie > > > > > > > > > > > > Quote Share this post Link to post Share on other sites