Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 Roni,  I have often wondered if the doctors even look at them........Guess they need someone really good to be a second pair of eyes.  I have extremely low platlets.....do you take anything that has aspirin?  Hugs  Lyncia  To: livercirrhosissupport Sent: Thursday, August 25, 2011 4:43 PM Subject: Blood Tests  Hi group, I've been picking up some recent blood tests to take to my lawyer for disability case. Anyway, I went to get my latest from gastro done in Feb. I remember when I had the test, they called and said my ammonia was elevated and should take more lactulose. As I was looking this over to see if I could calculate my own meld score, I noticed things that were way off besides my ammonia. Mainly, my PLT (platelet count) was way off at 34. Normal is 186-348. Other things were my glucose was 127, WBC 4.2 and MPV 11.2. And there was nothing about billrubin, INR or Serum Creatinine which are needed for meld score. Isn't that like an extremely low PLT? I learning all kinds of things about my doctors looking over this stuff. Thanks! Roni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 No Lyncia, I'm not supposed to take aspirin because of bleeding risks. How low are your platelets? I was wondering if 34 was transfusion stage. It does explain why I've been really tired alot. Roni > Roni, > > I have often wondered if the doctors even look at them........Guess > they need someone really good to be a second pair of eyes. > > I have extremely low platlets.....do you take anything that has > aspirin? > > Hugs > > Lyncia > > > > To: livercirrhosissupport > Sent: Thursday, August 25, 2011 4:43 PM > Subject: Blood Tests > > > Hi group, > > I've been picking up some recent blood tests to take to my lawyer for > disability case. Anyway, I went to get my latest from gastro done in > Feb. I remember when I had the test, they called and said my ammonia > was elevated and should take more lactulose. As I was looking this > over to see if I could calculate my own meld score, I noticed things > that were way off besides my ammonia. Mainly, my PLT (platelet count) > was way off at 34. Normal is 186-348. Other things were my glucose > was 127, WBC 4.2 and MPV 11.2. And there was nothing about billrubin, > INR or Serum Creatinine which are needed for meld score. Isn't that > like an extremely low PLT? I learning all kinds of things about my > doctors looking over this stuff. > > Thanks! > Roni > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 Roni I will find out my platlets on Tuesday while doing my annual testing for the transplants. I am having fluid (ascites) build up. It seems that I need to be drained every couple of weeks.... The broken hip is doing better that expected......thank goodness to therapy.... Lyncia To: livercirrhosissupport Sent: Friday, August 26, 2011 12:33 PM Subject: Re: Blood Tests No Lyncia, I'm not supposed to take aspirin because of bleeding risks. How low are your platelets? I was wondering if 34 was transfusion stage. It does explain why I've been really tired alot. Roni > Roni, > > I have often wondered if the doctors even look at them........Guess > they need someone really good to be a second pair of eyes. > > I have extremely low platlets.....do you take anything that has > aspirin? > > Hugs > > Lyncia > > > > To: livercirrhosissupport > Sent: Thursday, August 25, 2011 4:43 PM > Subject: Blood Tests > > > Hi group, > > I've been picking up some recent blood tests to take to my lawyer for > disability case. Anyway, I went to get my latest from gastro done in > Feb. I remember when I had the test, they called and said my ammonia > was elevated and should take more lactulose. As I was looking this > over to see if I could calculate my own meld score, I noticed things > that were way off besides my ammonia. Mainly, my PLT (platelet count) > was way off at 34. Normal is 186-348. Other things were my glucose > was 127, WBC 4.2 and MPV 11.2. And there was nothing about billrubin, > INR or Serum Creatinine which are needed for meld score. Isn't that > like an extremely low PLT? I learning all kinds of things about my > doctors looking over this stuff. > > Thanks! > Roni > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 Ed's hepatologist has always told him that his very low platelet count is due to his spleen being enlarged and his platelets pool in there instead of going on thru the spleen and to the rest of his body like they should. His always runs very low.Another lovely side effect of cirrhosis!                                                                            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 " <livercirrhosissupport > Sent: Friday, August 26, 2011 1:11 PM Subject: Re: Blood Tests  Roni,  I have often wondered if the doctors even look at them........Guess they need someone really good to be a second pair of eyes.  I have extremely low platlets.....do you take anything that has aspirin?  Hugs  Lyncia  To: livercirrhosissupport Sent: Thursday, August 25, 2011 4:43 PM Subject: Blood Tests  Hi group, I've been picking up some recent blood tests to take to my lawyer for disability case. Anyway, I went to get my latest from gastro done in Feb. I remember when I had the test, they called and said my ammonia was elevated and should take more lactulose. As I was looking this over to see if I could calculate my own meld score, I noticed things that were way off besides my ammonia. Mainly, my PLT (platelet count) was way off at 34. Normal is 186-348. Other things were my glucose was 127, WBC 4.2 and MPV 11.2. And there was nothing about billrubin, INR or Serum Creatinine which are needed for meld score. Isn't that like an extremely low PLT? I learning all kinds of things about my doctors looking over this stuff. Thanks! Roni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 Lyncia, I'm so glad your hip is doing better. From the symptoms I've had......I think the ascites is the worst! I was completely miserable and could not get comfortable. I feel for you. I bet it is a relief to get it drained. They never drained mine, it eventually went down on it's own. I still have a little, but it doesn't bother me right now. I hate this disease! Much love, Roni > Roni > > I will find out my platlets on Tuesday while doing my annual testing > for the transplants. > > I am having fluid (ascites) build up. It seems that I need to be > drained every couple of weeks.... > > The broken hip is doing better that expected......thank goodness to > therapy.... > > Lyncia > > > To: livercirrhosissupport > Sent: Friday, August 26, 2011 12:33 PM > Subject: Re: Blood Tests > > No Lyncia, I'm not supposed to take aspirin because of bleeding > risks. How low are your platelets? I was wondering if 34 was > transfusion stage. It does explain why I've been really tired alot. > > Roni > > > > > Roni, > > > > I have often wondered if the doctors even look at them........Guess > > they need someone really good to be a second pair of eyes. > > > > I have extremely low platlets.....do you take anything that has > > aspirin? > > > > Hugs > > > > Lyncia > > > > > > > > To: livercirrhosissupport > > Sent: Thursday, August 25, 2011 4:43 PM > > Subject: Blood Tests > > > > > > Hi group, > > > > I've been picking up some recent blood tests to take to my lawyer > for > > disability case. Anyway, I went to get my latest from gastro done in > > Feb. I remember when I had the test, they called and said my ammonia > > was elevated and should take more lactulose. As I was looking this > > over to see if I could calculate my own meld score, I noticed things > > that were way off besides my ammonia. Mainly, my PLT (platelet > count) > > was way off at 34. Normal is 186-348. Other things were my glucose > > was 127, WBC 4.2 and MPV 11.2. And there was nothing about > billrubin, > > INR or Serum Creatinine which are needed for meld score. Isn't that > > like an extremely low PLT? I learning all kinds of things about my > > doctors looking over this stuff. > > > > Thanks! > > Roni > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 I havent ever heard of ascites going down by itelf. And did I imagine you say you rode out an esophageal bleed at home? o m g! I wrote a reply to your post about labwork, this is a test to see if I should re post it. love, bobby ________________________________ To: livercirrhosissupport Sent: Friday, August 26, 2011 9:56 PM Subject: Re: Blood Tests Lyncia, I'm so glad your hip is doing better. From the symptoms I've had......I think the ascites is the worst! I was completely miserable and could not get comfortable. I feel for you. I bet it is a relief to get it drained. They never drained mine, it eventually went down on it's own. I still have a little, but it doesn't bother me right now. I hate this disease! Much love, Roni > Roni > > I will find out my platlets on Tuesday while doing my annual testing > for the transplants. > > I am having fluid (ascites) build up. It seems that I need to be > drained every couple of weeks.... > > The broken hip is doing better that expected......thank goodness to > therapy.... > > Lyncia > > > To: livercirrhosissupport > Sent: Friday, August 26, 2011 12:33 PM > Subject: Re: Blood Tests > > No Lyncia, I'm not supposed to take aspirin because of bleeding > risks. How low are your platelets? I was wondering if 34 was > transfusion stage. It does explain why I've been really tired alot. > > Roni > > > > > Roni, > > > > I have often wondered if the doctors even look at them........Guess > > they need someone really good to be a second pair of eyes. > > > > I have extremely low platlets.....do you take anything that has > > aspirin? > > > > Hugs > > > > Lyncia > > > > > > > > To: livercirrhosissupport > > Sent: Thursday, August 25, 2011 4:43 PM > > Subject: Blood Tests > > > > > > Hi group, > > > > I've been picking up some recent blood tests to take to my lawyer > for > > disability case. Anyway, I went to get my latest from gastro done in > > Feb. I remember when I had the test, they called and said my ammonia > > was elevated and should take more lactulose. As I was looking this > > over to see if I could calculate my own meld score, I noticed things > > that were way off besides my ammonia. Mainly, my PLT (platelet > count) > > was way off at 34. Normal is 186-348. Other things were my glucose > > was 127, WBC 4.2 and MPV 11.2. And there was nothing about > billrubin, > > INR or Serum Creatinine which are needed for meld score. Isn't that > > like an extremely low PLT? I learning all kinds of things about my > > doctors looking over this stuff. > > > > Thanks! > > Roni > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 Dear Roni, your platelets are very low. Mine are 110, and I have hard to control nose bleeds. Please be very careful. I wish you had a good hepatologist. The three main blood tests for us are the CBC, CMP, and LFT. That is complete blood count, the complete metabolic panel and the Liver function test. You seem to be missing the cmp, complete metabolic panel and LFT's. Something which was stressed to me by my lawyer, whom repeated this point over and over until it was spinning in my head... The Judge and the SSA are not interested so much the technical data of your liver, because it doesnt rule out you working (unless it meets blue book), but rather how YOU actually are functioning. Those doctor appointments when we go in smelling fresh and clean with hair all combed, with our usual smile, and answer all the questions given us in the most honest way we can, they KILL us on paper. Ardis used to go to her doctor appointment as best she could, but that usually didnt get her any glowing comments. Instead they wrote things like " patient is in obvious acute distress, disheveled, not oriented x3. Severe axterixis. The patient repeats questions over and over. The patient is a 56 year old female who seems to be quickly approaching advanced age. History of bleeding, multiple transfusions. The first thing my hepatologist said to me yesterday was " you look really good " and Sharon and I both chuckled and said at the same exact time " I/He make liver disease look really good! " That is my standard reply when someone knows I'm not feeling well, and they tell my how good I look , as if to say " wow, I am so glad you dont look as bad as you sounded on the phone- that would suck, and I wouldnt want to visit very long, cause it would make me feel bad to have to look at you " . This is not a suggestion to do anything dishonest, but if we look so darn good, we need to make it very clear to the doctor how awful we feel. This is not as easy as it sounds, especially when the hepatologist I see has 5,000 registered patients, half of whom are much much sicker than me, and on the transplant list or literally dying. If you have blood tests or events which even come close to meeting the blue book, great but if you dont, how liver disease is actually making you sick is important, and it does help to have your doctor write down what you tell him or her, even if you have to resort to what I learned from the " healing well forums " , which was to hand each doctor a computer printed document which said : " Bobby has the following signs and symptoms as outlined by the National library of medicine and National Institute of Health , ; end stage liver disease -itching, fatigue, bleeding nose, nausea, weight loss (100 lbs in 100 days etc. Portal hypertension, painful enlarged spleen(16 to 17 CM) hepatic encephalopathy, hepatopulmonary syndrome with a shunt fraction of 20% on 100% oxygen, resulting in shortness of breath,etc. Each doctor put this in my medical record, even if reluctantly. It was like a shot across the bow, a message if you will. I need them to document document document. Despite this, still my lawyer found stuff in my medical record which was complete bull, such as one ER doc said that had made up symptoms by reading them on the internet, and then he looked like a complete ass after my breathing test came back positive and backed up what I had reported. In almost every single report of pain or feeling ill I give, I get doubt thrown at me, then they run a test, and it comes back positive, and the doctors all get the egg on their face once again. Every single one of my doctors has had to wipe off this egg! (except for my pain doctor, knock on wood) I swear I hate seeking medical care unless I absolutely have to. Good luck, and all . Love, Bobby  PS, your doctors are not taking care of YOU, and you are THE most important person in your medical case!  ________________________________ To: livercirrhosissupport Sent: Thursday, August 25, 2011 3:43 PM Subject: Blood Tests  Hi group, I've been picking up some recent blood tests to take to my lawyer for disability case. Anyway, I went to get my latest from gastro done in Feb. I remember when I had the test, they called and said my ammonia was elevated and should take more lactulose. As I was looking this over to see if I could calculate my own meld score, I noticed things that were way off besides my ammonia. Mainly, my PLT (platelet count) was way off at 34. Normal is 186-348. Other things were my glucose was 127, WBC 4.2 and MPV 11.2. And there was nothing about billrubin, INR or Serum Creatinine which are needed for meld score. Isn't that like an extremely low PLT? I learning all kinds of things about my doctors looking over this stuff. Thanks! Roni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 Roni, I also hate this disease .... The thought of not be independent scares me. My thoughts and prayers are with you. The judge that I went to was so MAD that I had not received disability. He apologized to me and was so sweet.....I wish that you could go in front of him. I am here if you need me....Lyncia To: livercirrhosissupport Sent: Friday, August 26, 2011 10:56 PM Subject: Re: Blood Tests Lyncia, I'm so glad your hip is doing better. From the symptoms I've had......I think the ascites is the worst! I was completely miserable and could not get comfortable. I feel for you. I bet it is a relief to get it drained. They never drained mine, it eventually went down on it's own. I still have a little, but it doesn't bother me right now. I hate this disease! Much love, Roni > Roni > > I will find out my platlets on Tuesday while doing my annual testing > for the transplants. > > I am having fluid (ascites) build up. It seems that I need to be > drained every couple of weeks.... > > The broken hip is doing better that expected......thank goodness to > therapy.... > > Lyncia > > > To: livercirrhosissupport > Sent: Friday, August 26, 2011 12:33 PM > Subject: Re: Blood Tests > > No Lyncia, I'm not supposed to take aspirin because of bleeding > risks. How low are your platelets? I was wondering if 34 was > transfusion stage. It does explain why I've been really tired alot. > > Roni > > > > > Roni, > > > > I have often wondered if the doctors even look at them........Guess > > they need someone really good to be a second pair of eyes. > > > > I have extremely low platlets.....do you take anything that has > > aspirin? > > > > Hugs > > > > Lyncia > > > > > > > > To: livercirrhosissupport > > Sent: Thursday, August 25, 2011 4:43 PM > > Subject: Blood Tests > > > > > > Hi group, > > > > I've been picking up some recent blood tests to take to my lawyer > for > > disability case. Anyway, I went to get my latest from gastro done in > > Feb. I remember when I had the test, they called and said my ammonia > > was elevated and should take more lactulose. As I was looking this > > over to see if I could calculate my own meld score, I noticed things > > that were way off besides my ammonia. Mainly, my PLT (platelet > count) > > was way off at 34. Normal is 186-348. Other things were my glucose > > was 127, WBC 4.2 and MPV 11.2. And there was nothing about > billrubin, > > INR or Serum Creatinine which are needed for meld score. Isn't that > > like an extremely low PLT? I learning all kinds of things about my > > doctors looking over this stuff. > > > > Thanks! > > Roni > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 Yes Bobby, I rode out one at home. Stupid huh? I just know what it feels like when I'm bleeding.....the taste in your mouth and the heavy feeling in your stomach. I threw up and there wasn't anymore blood so I knew it had stopped. Should I have went still? Yes!!!! I just hate going to the hospital and couldn't bare it at the time. I did have my bags packed ready to go if I hadn't of started feeling better. Roni > I havent ever heard of ascites going down by itelf. And did I > imagine you say you rode out an esophageal bleed at home? o m g! I > wrote a reply to your post about labwork, this is a test to see if I > should re post it. love, bobby > > > > ________________________________ > > To: livercirrhosissupport > Sent: Friday, August 26, 2011 9:56 PM > Subject: Re: Blood Tests > > Lyncia, > > I'm so glad your hip is doing better. From the symptoms I've > had......I think the ascites is the worst! I was completely miserable > and could not get comfortable. I feel for you. I bet it is a relief > to get it drained. They never drained mine, it eventually went down > on it's own. I still have a little, but it doesn't bother me right > now. I hate this disease! > > Much love, > Roni > > > > > Roni > > > > I will find out my platlets on Tuesday while doing my annual testing > > for the transplants. > > > > I am having fluid (ascites) build up. It seems that I need to be > > drained every couple of weeks.... > > > > The broken hip is doing better that expected......thank goodness to > > therapy.... > > > > Lyncia > > > > > > To: livercirrhosissupport > > Sent: Friday, August 26, 2011 12:33 PM > > Subject: Re: Blood Tests > > > > No Lyncia, I'm not supposed to take aspirin because of bleeding > > risks. How low are your platelets? I was wondering if 34 was > > transfusion stage. It does explain why I've been really tired alot. > > > > Roni > > > > > > > > > Roni, > > > > > > I have often wondered if the doctors even look at > them........Guess > > > they need someone really good to be a second pair of eyes. > > > > > > I have extremely low platlets.....do you take anything that has > > > aspirin? > > > > > > Hugs > > > > > > Lyncia > > > > > > > > > > > > To: livercirrhosissupport > > > Sent: Thursday, August 25, 2011 4:43 PM > > > Subject: Blood Tests > > > > > > > > > Hi group, > > > > > > I've been picking up some recent blood tests to take to my lawyer > > for > > > disability case. Anyway, I went to get my latest from gastro > done in > > > Feb. I remember when I had the test, they called and said my > ammonia > > > was elevated and should take more lactulose. As I was looking this > > > over to see if I could calculate my own meld score, I noticed > things > > > that were way off besides my ammonia. Mainly, my PLT (platelet > > count) > > > was way off at 34. Normal is 186-348. Other things were my glucose > > > was 127, WBC 4.2 and MPV 11.2. And there was nothing about > > billrubin, > > > INR or Serum Creatinine which are needed for meld score. Isn't > that > > > like an extremely low PLT? I learning all kinds of things about my > > > doctors looking over this stuff. > > > > > > Thanks! > > > Roni > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 Me too Lyncia. My thoughts and prayers are with you too. My lawyer said the judge we have is a friend of his and a great guy. He thinks it will go through. I'm here if you need me too Lyncia. Much love, Roni > Roni, > > I also hate this disease .... The thought of not be independent > scares me. > > My thoughts and prayers are with you. The judge that I went to was > so MAD that I had not received disability. He apologized to me and > was so sweet.....I wish that you could go in front of him. > > I am here if you need me....Lyncia > > > To: livercirrhosissupport > Sent: Friday, August 26, 2011 10:56 PM > Subject: Re: Blood Tests > > Lyncia, > > I'm so glad your hip is doing better. From the symptoms I've > had......I think the ascites is the worst! I was completely miserable > and could not get comfortable. I feel for you. I bet it is a relief > to get it drained. They never drained mine, it eventually went down > on it's own. I still have a little, but it doesn't bother me right > now. I hate this disease! > > Much love, > Roni > > > > > Roni > > > > I will find out my platlets on Tuesday while doing my annual testing > > for the transplants. > > > > I am having fluid (ascites) build up. It seems that I need to be > > drained every couple of weeks.... > > > > The broken hip is doing better that expected......thank goodness to > > therapy.... > > > > Lyncia > > > > > > To: livercirrhosissupport > > Sent: Friday, August 26, 2011 12:33 PM > > Subject: Re: Blood Tests > > > > No Lyncia, I'm not supposed to take aspirin because of bleeding > > risks. How low are your platelets? I was wondering if 34 was > > transfusion stage. It does explain why I've been really tired alot. > > > > Roni > > > > > > > > > Roni, > > > > > > I have often wondered if the doctors even look at > them........Guess > > > they need someone really good to be a second pair of eyes. > > > > > > I have extremely low platlets.....do you take anything that has > > > aspirin? > > > > > > Hugs > > > > > > Lyncia > > > > > > > > > > > > To: livercirrhosissupport > > > Sent: Thursday, August 25, 2011 4:43 PM > > > Subject: Blood Tests > > > > > > > > > Hi group, > > > > > > I've been picking up some recent blood tests to take to my lawyer > > for > > > disability case. Anyway, I went to get my latest from gastro > done in > > > Feb. I remember when I had the test, they called and said my > ammonia > > > was elevated and should take more lactulose. As I was looking this > > > over to see if I could calculate my own meld score, I noticed > things > > > that were way off besides my ammonia. Mainly, my PLT (platelet > > count) > > > was way off at 34. Normal is 186-348. Other things were my glucose > > > was 127, WBC 4.2 and MPV 11.2. And there was nothing about > > billrubin, > > > INR or Serum Creatinine which are needed for meld score. Isn't > that > > > like an extremely low PLT? I learning all kinds of things about my > > > doctors looking over this stuff. > > > > > > Thanks! > > > Roni > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 Ed's platelets always run around 72,000-80,000...but his hepatologist keeps his eye in it  I agree with everyone else..You really need to find a hepatologiost. good luck....you're in my prayers..                                                                            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 " <livercirrhosissupport > Sent: Saturday, August 27, 2011 7:49 AM Subject: Re: Blood Tests  Dear Roni, your platelets are very low. Mine are 110, and I have hard to control nose bleeds. Please be very careful. I wish you had a good hepatologist. The three main blood tests for us are the CBC, CMP, and LFT. That is complete blood count, the complete metabolic panel and the Liver function test. You seem to be missing the cmp, complete metabolic panel and LFT's. Something which was stressed to me by my lawyer, whom repeated this point over and over until it was spinning in my head... The Judge and the SSA are not interested so much the technical data of your liver, because it doesnt rule out you working (unless it meets blue book), but rather how YOU actually are functioning. Those doctor appointments when we go in smelling fresh and clean with hair all combed, with our usual smile, and answer all the questions given us in the most honest way we can, they KILL us on paper. Ardis used to go to her doctor appointment as best she could, but that usually didnt get her any glowing comments. Instead they wrote things like " patient is in obvious acute distress, disheveled, not oriented x3. Severe axterixis. The patient repeats questions over and over. The patient is a 56 year old female who seems to be quickly approaching advanced age. History of bleeding, multiple transfusions. The first thing my hepatologist said to me yesterday was " you look really good " and Sharon and I both chuckled and said at the same exact time " I/He make liver disease look really good! " That is my standard reply when someone knows I'm not feeling well, and they tell my how good I look , as if to say " wow, I am so glad you dont look as bad as you sounded on the phone- that would suck, and I wouldnt want to visit very long, cause it would make me feel bad to have to look at you " . This is not a suggestion to do anything dishonest, but if we look so darn good, we need to make it very clear to the doctor how awful we feel. This is not as easy as it sounds, especially when the hepatologist I see has 5,000 registered patients, half of whom are much much sicker than me, and on the transplant list or literally dying. If you have blood tests or events which even come close to meeting the blue book, great but if you dont, how liver disease is actually making you sick is important, and it does help to have your doctor write down what you tell him or her, even if you have to resort to what I learned from the " healing well forums " , which was to hand each doctor a computer printed document which said : " Bobby has the following signs and symptoms as outlined by the National library of medicine and National Institute of Health , ; end stage liver disease -itching, fatigue, bleeding nose, nausea, weight loss (100 lbs in 100 days etc. Portal hypertension, painful enlarged spleen(16 to 17 CM) hepatic encephalopathy, hepatopulmonary syndrome with a shunt fraction of 20% on 100% oxygen, resulting in shortness of breath,etc. Each doctor put this in my medical record, even if reluctantly. It was like a shot across the bow, a message if you will. I need them to document document document. Despite this, still my lawyer found stuff in my medical record which was complete bull, such as one ER doc said that had made up symptoms by reading them on the internet, and then he looked like a complete ass after my breathing test came back positive and backed up what I had reported. In almost every single report of pain or feeling ill I give, I get doubt thrown at me, then they run a test, and it comes back positive, and the doctors all get the egg on their face once again. Every single one of my doctors has had to wipe off this egg! (except for my pain doctor, knock on wood) I swear I hate seeking medical care unless I absolutely have to. Good luck, and all . Love, Bobby  PS, your doctors are not taking care of YOU, and you are THE most important person in your medical case!  ________________________________ To: livercirrhosissupport Sent: Thursday, August 25, 2011 3:43 PM Subject: Blood Tests  Hi group, I've been picking up some recent blood tests to take to my lawyer for disability case. Anyway, I went to get my latest from gastro done in Feb. I remember when I had the test, they called and said my ammonia was elevated and should take more lactulose. As I was looking this over to see if I could calculate my own meld score, I noticed things that were way off besides my ammonia. Mainly, my PLT (platelet count) was way off at 34. Normal is 186-348. Other things were my glucose was 127, WBC 4.2 and MPV 11.2. And there was nothing about billrubin, INR or Serum Creatinine which are needed for meld score. Isn't that like an extremely low PLT? I learning all kinds of things about my doctors looking over this stuff. Thanks! Roni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 I try to get a copy of my bloodwork before I see the doctor. If I don't bring it in myself, I tell the nurse I would like a copy so when the doctor is talking about it I will have it right in front of my eyes, helps me remember and also helps me to see other things I want to ask questions about. Some nurses don't want to, then I tell the doctor and usually get a copy, but not always. I am going to start being more aggressive in getting it before I see the doctor. They also help when seeing doctors who didn't order the blood work, cuts down on miles I have to drive to get it done when they order the same thing from different doctors at the same time. And the labs like it because they don't always get paid when they run the same test too close together. Jan > Roni, > > I have often wondered if the doctors even look at them........Guess they > need someone really good to be a second pair of eyes. > > I have extremely low platlets.....do you take anything that has aspirin? > > Hugs > > Lyncia > > > > To: livercirrhosissupport > Sent: Thursday, August 25, 2011 4:43 PM > Subject: Blood Tests > > > > Hi group, > > I've been picking up some recent blood tests to take to my lawyer for > disability case. Anyway, I went to get my latest from gastro done in > Feb. I remember when I had the test, they called and said my ammonia > was elevated and should take more lactulose. As I was looking this > over to see if I could calculate my own meld score, I noticed things > that were way off besides my ammonia. Mainly, my PLT (platelet count) > was way off at 34. Normal is 186-348. Other things were my glucose > was 127, WBC 4.2 and MPV 11.2. And there was nothing about billrubin, > INR or Serum Creatinine which are needed for meld score. Isn't that > like an extremely low PLT? I learning all kinds of things about my > doctors looking over this stuff. > > Thanks! > Roni > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2011 Report Share Posted August 28, 2011 Thanks Jill, I appreciate it. When I was listed for transplant, Baylor was wonderful. When I lost my job, I lost that too. Much love, Roni > Ed's platelets always run around 72,000-80,000...but his > hepatologist keeps his eye in it > > I agree with everyone else..You really need to find a > hepatologiost. good luck....you're in my prayers.. > > 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 " <livercirrhosissupport > > > Sent: Saturday, August 27, 2011 7:49 AM > Subject: Re: Blood Tests > > > Dear Roni, your platelets are very low. Mine are 110, and I have > hard to control nose bleeds. Please be very careful. I wish you had > a good > hepatologist. The three main blood tests for us are the CBC, CMP, and > LFT. That is complete blood count, the complete metabolic panel and > the > Liver function test. > You seem to be missing the cmp, complete metabolic panel and LFT's. > > Something > which was stressed to me by my lawyer, whom repeated this point over > and over until it was spinning in my head... The Judge and the SSA are > not interested so much the technical data of your liver, because it > doesnt rule out you working (unless it meets blue book), but rather > how > YOU actually are > functioning. Those doctor appointments when we go in smelling fresh > and > clean with hair all combed, with our usual smile, and answer all the > questions given us in the most honest way we can, they KILL us on > paper. > Ardis used to go to her doctor appointment as > best she could, but that usually didnt get her any glowing comments. > Instead they wrote things like " patient is in obvious acute distress, > disheveled, not oriented x3. Severe axterixis. The patient repeats > questions over and over. The patient is a 56 year old female who seems > to be quickly approaching advanced age. History of bleeding, multiple > transfusions. > The first thing my hepatologist said to me yesterday was " you look > really good " > and > Sharon and I both chuckled and said at the same exact time " I/He make > liver disease look really good! " That is my standard reply when > someone > knows I'm not feeling well, and they tell my how good I look , as if > to > say " wow, I am so glad you dont look as bad as you sounded on the > phone- that would suck, and I wouldnt want to visit very long, cause > it > would make me feel bad to have to look at you " . > This is not a suggestion to do anything dishonest, but if we look so > darn good, we need to make it very clear > to the doctor how awful we feel. > This is not as easy as it sounds, > especially when the hepatologist I see has 5,000 registered patients, > half of whom are much much sicker than me, and on the transplant > list or > literally dying. > If you have blood tests or events which even come > close to meeting the blue book, great but if you dont, how liver > disease > is actually making you sick is important, and it does help to have > your > doctor write down what you tell him or her, even if you have to resort > to what I learned from the " healing well forums " , which was to hand > each > doctor a computer printed document which said : > > " Bobby has the > following signs and symptoms as outlined by the National library of > medicine and National Institute of Health , ; end stage liver disease > -itching, fatigue, bleeding nose, nausea, weight loss (100 lbs in 100 > days etc. Portal hypertension, painful enlarged spleen(16 to 17 CM) > hepatic encephalopathy, hepatopulmonary syndrome > with a shunt fraction of 20% on 100% oxygen, resulting in shortness of > breath,etc. > Each doctor put this in my medical record, even if reluctantly. It > was like a shot across the bow, a message > if you will. I need them to document document document. > Despite > this, still my lawyer found stuff in my medical record which was > complete bull, such as one ER doc said that had made up symptoms by > reading them on the internet, and then he looked like a complete ass > after my breathing test came back positive and backed up what I had > reported. In almost every single report of pain or feeling ill I > give, I > get doubt thrown at me, then they run a test, and it comes back > positive, and the doctors all get the egg on their face once again. > Every single one of my doctors has had to wipe off this egg! (except > for > my pain doctor, knock on wood) > I swear I hate seeking medical care unless I absolutely have to. > Good luck, and all . Love, Bobby > > PS, your doctors are not taking care of YOU, and you are THE most > important person in your medical case! > > > > ________________________________ > > To: livercirrhosissupport > Sent: Thursday, August 25, 2011 3:43 PM > Subject: Blood Tests > > > Hi group, > > I've been picking up some recent blood tests to take to my lawyer for > disability case. Anyway, I went to get my latest from gastro done in > Feb. I remember when I had the test, they called and said my ammonia > was elevated and should take more lactulose. As I was looking this > over to see if I could calculate my own meld score, I noticed things > that were way off besides my ammonia. Mainly, my PLT (platelet count) > was way off at 34. Normal is 186-348. Other things were my glucose > was 127, WBC 4.2 and MPV 11.2. And there was nothing about billrubin, > INR or Serum Creatinine which are needed for meld score. Isn't that > like an extremely low PLT? I learning all kinds of things about my > doctors looking over this stuff. > > Thanks! > Roni > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2011 Report Share Posted August 28, 2011 That's a good idea Jan. There is so much information on the blood work. Roni > I try to get a copy of my bloodwork before I see the doctor. If I > don't bring it in myself, I tell the nurse I would like a copy so when > the doctor is talking about it I will have it right in front of my > eyes, helps me remember and also helps me to see other things I want > to ask questions about. Some nurses don't want to, then I tell the > doctor and usually get a copy, but not always. I am going to start > being more aggressive in getting it before I see the doctor. They > also help when seeing doctors who didn't order the blood work, cuts > down on miles I have to drive to get it done when they order the same > thing from different doctors at the same time. And the labs like it > because they don't always get paid when they run the same test too > close together. Jan > > > > Roni, > > > > I have often wondered if the doctors even look at > them........Guess they > > need someone really good to be a second pair of eyes. > > > > I have extremely low platlets.....do you take anything that has > aspirin? > > > > Hugs > > > > Lyncia > > > > > > > > To: livercirrhosissupport > > Sent: Thursday, August 25, 2011 4:43 PM > > Subject: Blood Tests > > > > > > > > Hi group, > > > > I've been picking up some recent blood tests to take to my lawyer > for > > disability case. Anyway, I went to get my latest from gastro done in > > Feb. I remember when I had the test, they called and said my ammonia > > was elevated and should take more lactulose. As I was looking this > > over to see if I could calculate my own meld score, I noticed things > > that were way off besides my ammonia. Mainly, my PLT (platelet > count) > > was way off at 34. Normal is 186-348. Other things were my glucose > > was 127, WBC 4.2 and MPV 11.2. And there was nothing about > billrubin, > > INR or Serum Creatinine which are needed for meld score. Isn't that > > like an extremely low PLT? I learning all kinds of things about my > > doctors looking over this stuff. > > > > Thanks! > > Roni > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2011 Report Share Posted August 28, 2011 I am not saying that you were stupid for riding out a bleed at home. I had a nose bleed in November 2005 that went on for over an hour, and I made a huge mess in the mens room at work trying to clean it up, until I looked like someone had stabbed me. I literally had blood from my chin to my knees! Here is what emedicine says about varicies; Bleeding varicies carries a 50% risk of mortality for the first bleeding episode. " Patients who have bled once from esophageal varices have a 70% chance of rebleeding, and approximately one third of further bleeding episodes are fatal. The risk of death is maximal during the first few days after the bleeding episode and decreases slowly over the first 6 weeks. Mortality rates in the setting of surgical intervention for acute variceal bleeding are high. Associated abnormalities in the renal, pulmonary, cardiovascular, and immune systems in patients with esophageal varices contribute to 20-65% of mortality... ....High morbidity and mortality (30-40% of the group with severe persistent GI hemorrhage) - Factors such as underlying liver disease and associated abnormalities of the renal, cardiovascular, and immune systems contribute to the high morbidity and mortality. " " The management of oesophageal bleeding disorders remains a challenging problem in the emergency department. Oesophageal varices are dilated veins; they are most commonly a result of portal hypertension and are often associated with a poor outcome.1 Haemorrhage from oesophageal varices is a life-threatening emergency with a mortality rate of 30–50%. Approximately90% of patients with cirrhosis will develop varices, of which bleeding occurs in 25–35%. -eMedicine This is probably the most serious issue for people with liver disease. This keeps me up at night, especially when I am one year over due for an endoscope, as I discovered last night. Hindsight is always 20 20. I do not blame you about not wanting to go in to the hospital for things, especially when they treat us so bad much of the time, but please promise us you will call 911 if you ever have another bleed? Thanks,,, Love, Bobby  To: livercirrhosissupport Sent: Sunday, August 28, 2011 12:34 AM Subject: Re: Blood Tests Thanks Jill, I appreciate it. When I was listed for transplant, Baylor was wonderful. When I lost my job, I lost that too. Much love, Roni > Ed's platelets always run around 72,000-80,000...but his > hepatologist keeps his eye in it > > I agree with everyone else..You really need to find a > hepatologiost. good luck....you're in my prayers.. > >                  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 " <livercirrhosissupport > > > Sent: Saturday, August 27, 2011 7:49 AM > Subject: Re: Blood Tests > > > Dear Roni, your platelets are very low. Mine are 110, and I have > hard to control nose bleeds. Please be very careful. I wish you had > a good > hepatologist. The three main blood tests for us are the CBC, CMP, and > LFT. That is complete blood count, the complete metabolic panel and > the > Liver function test. > You seem to be missing the cmp, complete metabolic panel and LFT's. > > Something > which was stressed to me by my lawyer, whom repeated this point over > and over until it was spinning in my head... The Judge and the SSA are > not interested so much the technical data of your liver, because it > doesnt rule out you working (unless it meets blue book), but rather > how > YOU actually are > functioning. Those doctor appointments when we go in smelling fresh > and > clean with hair all combed, with our usual smile, and answer all the > questions given us in the most honest way we can, they KILL us on > paper. > Ardis used to go to her doctor appointment as > best she could, but that usually didnt get her any glowing comments. > Instead they wrote things like " patient is in obvious acute distress, > disheveled, not oriented x3. Severe axterixis. The patient repeats > questions over and over. The patient is a 56 year old female who seems > to be quickly approaching advanced age. History of bleeding, multiple > transfusions. > The first thing my hepatologist said to me yesterday was " you look > really good " > and > Sharon and I both chuckled and said at the same exact time " I/He make > liver disease look really good! " That is my standard reply when > someone > knows I'm not feeling well, and they tell my how good I look , as if > to > say " wow, I am so glad you dont look as bad as you sounded on the > phone- that would suck, and I wouldnt want to visit very long, cause > it > would make me feel bad to have to look at you " . > This is not a suggestion to do anything dishonest, but if we look so > darn good, we need to make it very clear > to the doctor how awful we feel. > This is not as easy as it sounds, > especially when the hepatologist I see has 5,000 registered patients, > half of whom are much much sicker than me, and on the transplant > list or > literally dying. > If you have blood tests or events which even come > close to meeting the blue book, great but if you dont, how liver > disease > is actually making you sick is important, and it does help to have > your > doctor write down what you tell him or her, even if you have to resort > to what I learned from the " healing well forums " , which was to hand > each > doctor a computer printed document which said : > > " Bobby has the > following signs and symptoms as outlined by the National library of > medicine and National Institute of Health , ; end stage liver disease > -itching, fatigue, bleeding nose, nausea, weight loss (100 lbs in 100 > days etc. Portal hypertension, painful enlarged spleen(16 to 17 CM) > hepatic encephalopathy, hepatopulmonary syndrome > with a shunt fraction of 20% on 100% oxygen, resulting in shortness of > breath,etc. > Each doctor put this in my medical record, even if reluctantly. It > was like a shot across the bow, a message > if you will. I need them to document document document. > Despite > this, still my lawyer found stuff in my medical record which was > complete bull, such as one ER doc said that had made up symptoms by > reading them on the internet, and then he looked like a complete ass > after my breathing test came back positive and backed up what I had > reported. In almost every single report of pain or feeling ill I > give, I > get doubt thrown at me, then they run a test, and it comes back > positive, and the doctors all get the egg on their face once again. > Every single one of my doctors has had to wipe off this egg! (except > for > my pain doctor, knock on wood) > I swear I hate seeking medical care unless I absolutely have to. > Good luck, and all . Love, Bobby > > PS, your doctors are not taking care of YOU, and you are THE most > important person in your medical case! > > > > ________________________________ > > To: livercirrhosissupport > Sent: Thursday, August 25, 2011 3:43 PM > Subject: Blood Tests > > > Hi group, > > I've been picking up some recent blood tests to take to my lawyer for > disability case. Anyway, I went to get my latest from gastro done in > Feb. I remember when I had the test, they called and said my ammonia > was elevated and should take more lactulose. As I was looking this > over to see if I could calculate my own meld score, I noticed things > that were way off besides my ammonia. Mainly, my PLT (platelet count) > was way off at 34. Normal is 186-348. Other things were my glucose > was 127, WBC 4.2 and MPV 11.2. And there was nothing about billrubin, > INR or Serum Creatinine which are needed for meld score. Isn't that > like an extremely low PLT? I learning all kinds of things about my > doctors looking over this stuff. > > Thanks! > Roni > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2011 Report Share Posted August 28, 2011 Hi Bobby, No, it was pretty stupid. I've had massive nose bleeds like you describe but it's been along time ago. Since I believe in positive thinking and healing I will say there won't be another bleed. But I do promise I will go to ER if I ever need to. I did almost die the first time. I think my hemoglobin was 5 and I actually walked to my room. The guy I was dating at the time was making these green protein drinks for me. I always blamed the protein drinks. Hehe. Roni > I am not saying that you were stupid for riding out a bleed at home. > I had a nose bleed in November 2005 that went on for over an hour, > and I made a huge mess in the mens room at work trying to clean it > up, until I looked like someone had stabbed me. I literally had > blood from my chin to my knees! > > Here is what emedicine says about varicies; > > Bleeding varicies carries a 50% risk of mortality for the first > bleeding episode. > > " Patients who have bled once from esophageal varices have a 70% chance > of rebleeding, and approximately one third of further bleeding > episodes > are fatal. The risk of death is maximal during the first few days > after > the bleeding episode and decreases slowly over the first 6 weeks. > Mortality rates in the setting of surgical intervention for acute > variceal bleeding are high. > > Associated abnormalities in the renal, pulmonary, cardiovascular, and > immune systems in patients with esophageal varices contribute to > 20-65% > of mortality... > > ...High morbidity and mortality (30-40% of the group with severe > persistent GI hemorrhage) - Factors such as underlying liver disease > and > associated abnormalities of the renal, cardiovascular, and immune > systems contribute to the high morbidity and mortality. " > " The management of oesophageal bleeding disorders > remains a challenging problem in the emergency department. Oesophageal > varices are dilated veins; they are most commonly a result of portal > hypertension and are often associated with a poor outcome.1 > Haemorrhage > from oesophageal varices is a life-threatening emergency with a > mortality rate of 30–50%. Approximately90% of patients with > cirrhosis will develop varices, of which bleeding occurs in 25–35%. > -eMedicine > > This is probably the most serious issue for people with liver > disease. This keeps me up at night, especially when I am one year > over due for an endoscope, as I discovered last night. > > Hindsight is always 20 20. I do not blame you about not wanting to > go in to the hospital for things, especially when they treat us so > bad much of the time, but please promise us you will call 911 if you > ever have another bleed? Thanks,,, Love, Bobby > > > > To: livercirrhosissupport > Sent: Sunday, August 28, 2011 12:34 AM > Subject: Re: Blood Tests > > Thanks Jill, > > I appreciate it. When I was listed for transplant, Baylor was > wonderful. When I lost my job, I lost that too. > > Much love, > Roni > > > > > Ed's platelets always run around 72,000-80,000...but his > > hepatologist keeps his eye in it > > > > I agree with everyone else..You really need to find a > > hepatologiost. good luck....you're in my prayers.. > > > > 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 " <livercirrhosissupport > > > > > Sent: Saturday, August 27, 2011 7:49 AM > > Subject: Re: Blood Tests > > > > > > Dear Roni, your platelets are very low. Mine are 110, and I have > > hard to control nose bleeds. Please be very careful. I wish you had > > a good > > hepatologist. The three main blood tests for us are the CBC, CMP, > and > > LFT. That is complete blood count, the complete metabolic panel and > > the > > Liver function test. > > You seem to be missing the cmp, complete metabolic panel and LFT's. > > > > Something > > which was stressed to me by my lawyer, whom repeated this point over > > and over until it was spinning in my head... The Judge and the SSA > are > > not interested so much the technical data of your liver, because it > > doesnt rule out you working (unless it meets blue book), but rather > > how > > YOU actually are > > functioning. Those doctor appointments when we go in smelling fresh > > and > > clean with hair all combed, with our usual smile, and answer all the > > questions given us in the most honest way we can, they KILL us on > > paper. > > Ardis used to go to her doctor appointment as > > best she could, but that usually didnt get her any glowing comments. > > Instead they wrote things like " patient is in obvious acute > distress, > > disheveled, not oriented x3. Severe axterixis. The patient repeats > > questions over and over. The patient is a 56 year old female who > seems > > to be quickly approaching advanced age. History of bleeding, > multiple > > transfusions. > > The first thing my hepatologist said to me yesterday was " you look > > really good " > > and > > Sharon and I both chuckled and said at the same exact time " I/He > make > > liver disease look really good! " That is my standard reply when > > someone > > knows I'm not feeling well, and they tell my how good I look , as if > > to > > say " wow, I am so glad you dont look as bad as you sounded on the > > phone- that would suck, and I wouldnt want to visit very long, cause > > it > > would make me feel bad to have to look at you " . > > This is not a suggestion to do anything dishonest, but if we look so > > darn good, we need to make it very clear > > to the doctor how awful we feel. > > This is not as easy as it sounds, > > especially when the hepatologist I see has 5,000 registered > patients, > > half of whom are much much sicker than me, and on the transplant > > list or > > literally dying. > > If you have blood tests or events which even come > > close to meeting the blue book, great but if you dont, how liver > > disease > > is actually making you sick is important, and it does help to have > > your > > doctor write down what you tell him or her, even if you have to > resort > > to what I learned from the " healing well forums " , which was to hand > > each > > doctor a computer printed document which said : > > > > " Bobby has the > > following signs and symptoms as outlined by the National library of > > medicine and National Institute of Health , ; end stage liver > disease > > -itching, fatigue, bleeding nose, nausea, weight loss (100 lbs in > 100 > > days etc. Portal hypertension, painful enlarged spleen(16 to 17 CM) > > hepatic encephalopathy, hepatopulmonary syndrome > > with a shunt fraction of 20% on 100% oxygen, resulting in > shortness of > > breath,etc. > > Each doctor put this in my medical record, even if reluctantly. It > > was like a shot across the bow, a message > > if you will. I need them to document document document. > > Despite > > this, still my lawyer found stuff in my medical record which was > > complete bull, such as one ER doc said that had made up symptoms by > > reading them on the internet, and then he looked like a complete ass > > after my breathing test came back positive and backed up what I had > > reported. In almost every single report of pain or feeling ill I > > give, I > > get doubt thrown at me, then they run a test, and it comes back > > positive, and the doctors all get the egg on their face once again. > > Every single one of my doctors has had to wipe off this egg! (except > > for > > my pain doctor, knock on wood) > > I swear I hate seeking medical care unless I absolutely have to. > > Good luck, and all . Love, Bobby > > > > PS, your doctors are not taking care of YOU, and you are THE most > > important person in your medical case! > > > > > > > > ________________________________ > > > > To: livercirrhosissupport > > Sent: Thursday, August 25, 2011 3:43 PM > > Subject: Blood Tests > > > > > > Hi group, > > > > I've been picking up some recent blood tests to take to my lawyer > for > > disability case. Anyway, I went to get my latest from gastro done in > > Feb. I remember when I had the test, they called and said my ammonia > > was elevated and should take more lactulose. As I was looking this > > over to see if I could calculate my own meld score, I noticed things > > that were way off besides my ammonia. Mainly, my PLT (platelet > count) > > was way off at 34. Normal is 186-348. Other things were my glucose > > was 127, WBC 4.2 and MPV 11.2. And there was nothing about > billrubin, > > INR or Serum Creatinine which are needed for meld score. Isn't that > > like an extremely low PLT? I learning all kinds of things about my > > doctors looking over this stuff. > > > > Thanks! > > Roni > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2011 Report Share Posted August 28, 2011 my hemotologist wants me to go off aspirin, thinking I may have a small constant bleed which is causing my anemia. I have yet to hear from my cardio who prescribed it, but have been having trouble with small holes in my legs and arms not wanting to stop bleeding. Also, went shopping with a friend on Tues through Thurs morning, carrying a tote bag on my right arm most of the time when not in the motel or car. I had red spots all over my arm where the strap had rubbed, now turned to regular looking bruises. Also the veins on the back of my arm where inflated and much larger than usual. I think my veins and arteries are just shot. I have one good spot left to draw blood and put in ivs. I hate this " lets try this method of diagnosis " Would rather have a test even if it is a bone marrow test with 6 seconds of excruciating pain. Frustrating going 3 years or more and still no diagnosis. At least I am getting some treatment now which helps the anemia. Sorry if I sound down, really over did it this week, and still hurt all over 3 days later. Jan > Hi Bobby, > > No, it was pretty stupid. I've had massive nose bleeds like you > describe but it's been along time ago. Since I believe in positive > thinking and healing I will say there won't be another bleed. But I > do promise I will go to ER if I ever need to. I did almost die > the first time. I think my hemoglobin was 5 and I actually walked to > my room. The guy I was dating at the time was making these green > protein drinks for me. I always blamed the protein drinks. Hehe. > > Roni > > > >> I am not saying that you were stupid for riding out a bleed at home. >> I had a nose bleed in November 2005 that went on for over an hour, >> and I made a huge mess in the mens room at work trying to clean it >> up, until I looked like someone had stabbed me. I literally had >> blood from my chin to my knees! >> >> Here is what emedicine says about varicies; >> >> Bleeding varicies carries a 50% risk of mortality for the first >> bleeding episode. >> >> " Patients who have bled once from esophageal varices have a 70% chance >> of rebleeding, and approximately one third of further bleeding >> episodes >> are fatal. The risk of death is maximal during the first few days >> after >> the bleeding episode and decreases slowly over the first 6 weeks. >> Mortality rates in the setting of surgical intervention for acute >> variceal bleeding are high. >> >> Associated abnormalities in the renal, pulmonary, cardiovascular, and >> immune systems in patients with esophageal varices contribute to >> 20-65% >> of mortality... >> >> ...High morbidity and mortality (30-40% of the group with severe >> persistent GI hemorrhage) - Factors such as underlying liver disease >> and >> associated abnormalities of the renal, cardiovascular, and immune >> systems contribute to the high morbidity and mortality. " >> " The management of oesophageal bleeding disorders >> remains a challenging problem in the emergency department. Oesophageal >> varices are dilated veins; they are most commonly a result of portal >> hypertension and are often associated with a poor outcome.1 >> Haemorrhage >> from oesophageal varices is a life-threatening emergency with a >> mortality rate of 30–50%. Approximately90% of patients with >> cirrhosis will develop varices, of which bleeding occurs in 25–35%. >> -eMedicine >> >> This is probably the most serious issue for people with liver >> disease. This keeps me up at night, especially when I am one year >> over due for an endoscope, as I discovered last night. >> >> Hindsight is always 20 20. I do not blame you about not wanting to >> go in to the hospital for things, especially when they treat us so >> bad much of the time, but please promise us you will call 911 if you >> ever have another bleed? Thanks,,, Love, Bobby >> >> >> >> To: livercirrhosissupport >> Sent: Sunday, August 28, 2011 12:34 AM >> Subject: Re: Blood Tests >> >> Thanks Jill, >> >> I appreciate it. When I was listed for transplant, Baylor was >> wonderful. When I lost my job, I lost that too. >> >> Much love, >> Roni >> >> >> >> > Ed's platelets always run around 72,000-80,000...but his >> > hepatologist keeps his eye in it >> > >> > I agree with everyone else..You really need to find a >> > hepatologiost. good luck....you're in my prayers.. >> > >> > 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 " >> > <livercirrhosissupport >> > > >> > Sent: Saturday, August 27, 2011 7:49 AM >> > Subject: Re: Blood Tests >> > >> > >> > Dear Roni, your platelets are very low. Mine are 110, and I have >> > hard to control nose bleeds. Please be very careful. I wish you had >> > a good >> > hepatologist. The three main blood tests for us are the CBC, CMP, >> and >> > LFT. That is complete blood count, the complete metabolic panel and >> > the >> > Liver function test. >> > You seem to be missing the cmp, complete metabolic panel and LFT's. >> > >> > Something >> > which was stressed to me by my lawyer, whom repeated this point over >> > and over until it was spinning in my head... The Judge and the SSA >> are >> > not interested so much the technical data of your liver, because it >> > doesnt rule out you working (unless it meets blue book), but rather >> > how >> > YOU actually are >> > functioning. Those doctor appointments when we go in smelling fresh >> > and >> > clean with hair all combed, with our usual smile, and answer all the >> > questions given us in the most honest way we can, they KILL us on >> > paper. >> > Ardis used to go to her doctor appointment as >> > best she could, but that usually didnt get her any glowing comments. >> > Instead they wrote things like " patient is in obvious acute >> distress, >> > disheveled, not oriented x3. Severe axterixis. The patient repeats >> > questions over and over. The patient is a 56 year old female who >> seems >> > to be quickly approaching advanced age. History of bleeding, >> multiple >> > transfusions. >> > The first thing my hepatologist said to me yesterday was " you look >> > really good " >> > and >> > Sharon and I both chuckled and said at the same exact time " I/He >> make >> > liver disease look really good! " That is my standard reply when >> > someone >> > knows I'm not feeling well, and they tell my how good I look , as if >> > to >> > say " wow, I am so glad you dont look as bad as you sounded on the >> > phone- that would suck, and I wouldnt want to visit very long, cause >> > it >> > would make me feel bad to have to look at you " . >> > This is not a suggestion to do anything dishonest, but if we look so >> > darn good, we need to make it very clear >> > to the doctor how awful we feel. >> > This is not as easy as it sounds, >> > especially when the hepatologist I see has 5,000 registered >> patients, >> > half of whom are much much sicker than me, and on the transplant >> > list or >> > literally dying. >> > If you have blood tests or events which even come >> > close to meeting the blue book, great but if you dont, how liver >> > disease >> > is actually making you sick is important, and it does help to have >> > your >> > doctor write down what you tell him or her, even if you have to >> resort >> > to what I learned from the " healing well forums " , which was to hand >> > each >> > doctor a computer printed document which said : >> > >> > " Bobby has the >> > following signs and symptoms as outlined by the National library of >> > medicine and National Institute of Health , ; end stage liver >> disease >> > -itching, fatigue, bleeding nose, nausea, weight loss (100 lbs in >> 100 >> > days etc. Portal hypertension, painful enlarged spleen(16 to 17 CM) >> > hepatic encephalopathy, hepatopulmonary syndrome >> > with a shunt fraction of 20% on 100% oxygen, resulting in >> shortness of >> > breath,etc. >> > Each doctor put this in my medical record, even if reluctantly. It >> > was like a shot across the bow, a message >> > if you will. I need them to document document document. >> > Despite >> > this, still my lawyer found stuff in my medical record which was >> > complete bull, such as one ER doc said that had made up symptoms by >> > reading them on the internet, and then he looked like a complete ass >> > after my breathing test came back positive and backed up what I had >> > reported. In almost every single report of pain or feeling ill I >> > give, I >> > get doubt thrown at me, then they run a test, and it comes back >> > positive, and the doctors all get the egg on their face once again. >> > Every single one of my doctors has had to wipe off this egg! (except >> > for >> > my pain doctor, knock on wood) >> > I swear I hate seeking medical care unless I absolutely have to. >> > Good luck, and all . Love, Bobby >> > >> > PS, your doctors are not taking care of YOU, and you are THE most >> > important person in your medical case! >> > >> > >> > >> > ________________________________ >> > >> > To: livercirrhosissupport >> > Sent: Thursday, August 25, 2011 3:43 PM >> > Subject: Blood Tests >> > >> > >> > Hi group, >> > >> > I've been picking up some recent blood tests to take to my lawyer >> for >> > disability case. Anyway, I went to get my latest from gastro done in >> > Feb. I remember when I had the test, they called and said my ammonia >> > was elevated and should take more lactulose. As I was looking this >> > over to see if I could calculate my own meld score, I noticed things >> > that were way off besides my ammonia. Mainly, my PLT (platelet >> count) >> > was way off at 34. Normal is 186-348. Other things were my glucose >> > was 127, WBC 4.2 and MPV 11.2. And there was nothing about >> billrubin, >> > INR or Serum Creatinine which are needed for meld score. Isn't that >> > like an extremely low PLT? I learning all kinds of things about my >> > doctors looking over this stuff. >> > >> > Thanks! >> > Roni >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2011 Report Share Posted August 29, 2011  Jan, I recently saw this diagnosis on the internet. It sounds like really really low clotting factors. I saw a picture of a man with red spots all over. it was really disturbing. Arent they doing a regular INR on you? Love, Bobby ________________________________ To: livercirrhosissupport Sent: Sunday, August 28, 2011 7:42 PM Subject: Re: Blood Tests my hemotologist wants me to go off aspirin, thinking I may have a small constant bleed which is causing my anemia. I have yet to hear from my cardio who prescribed it, but have been having trouble with small holes in my legs and arms not wanting to stop bleeding. Also, went shopping with a friend on Tues through Thurs morning, carrying a tote bag on my right arm most of the time when not in the motel or car. I had red spots all over my arm where the strap had rubbed, now turned to regular looking bruises. Also the veins on the back of my arm where inflated and much larger than usual. I think my veins and arteries are just shot. I have one good spot left to draw blood and put in ivs. I hate this " lets try this method of diagnosis "  Would rather have a test even if it is a bone marrow test with 6 seconds of excruciating pain. Frustrating going 3 years or more and still no diagnosis. At least I am getting some treatment now which helps the anemia. Sorry if I sound down, really over did it this week, and still hurt all over 3 days later. Jan > Hi Bobby, > > No, it was pretty stupid.  I've had massive nose bleeds like you > describe but it's been along time ago. Since I believe in positive > thinking and healing I will say there won't be another bleed. But I > do promise I will go to ER if I ever need to.  I did almost die > the first time. I think my hemoglobin was 5 and I actually walked to > my room. The guy I was dating at the time was making these green > protein drinks for me. I always blamed the protein drinks. Hehe. > > Roni > > > >> I am not saying that you were stupid for riding out a bleed at home. >> I had a nose bleed in November 2005 that went on for over an hour, >> and I made a huge mess in the mens room at work trying to clean it >> up, until I looked like someone had stabbed me. I literally had >> blood from my chin to my knees! >> >> Here is what emedicine says about varicies; >> >> Bleeding varicies carries a 50% risk of mortality for the first >> bleeding episode. >> >> " Patients who have bled once from esophageal varices have a 70% chance >> of rebleeding, and approximately one third of further bleeding >> episodes >> are fatal. The risk of death is maximal during the first few days >> after >> the bleeding episode and decreases slowly over the first 6 weeks. >> Mortality rates in the setting of surgical intervention for acute >> variceal bleeding are high. >> >> Associated abnormalities in the renal, pulmonary, cardiovascular, and >> immune systems in patients with esophageal varices contribute to >> 20-65% >> of mortality... >> >> ...High morbidity and mortality (30-40% of the group with severe >> persistent GI hemorrhage) - Factors such as underlying liver disease >> and >> associated abnormalities of the renal, cardiovascular, and immune >> systems contribute to the high morbidity and mortality. " >> " The management of oesophageal bleeding disorders >> remains a challenging problem in the emergency department. Oesophageal >> varices are dilated veins; they are most commonly a result of portal >> hypertension and are often associated with a poor outcome.1 >> Haemorrhage >> from oesophageal varices is a life-threatening emergency with a >> mortality rate of 30–50%. Approximately90% of patients with >> cirrhosis will develop varices, of which bleeding occurs in 25–35%. >> -eMedicine >> >> This is probably the most serious issue for people with liver >> disease. This keeps me up at night, especially when I am one year >> over due for an endoscope, as I discovered last night. >> >> Hindsight is always 20 20. I do not blame you about not wanting to >> go in to the hospital for things, especially when they treat us so >> bad much of the time, but please promise us you will call 911 if you >> ever have another bleed? Thanks,,, Love, Bobby >> >> >> >> To: livercirrhosissupport >> Sent: Sunday, August 28, 2011 12:34 AM >> Subject: Re: Blood Tests >> >> Thanks Jill, >> >> I appreciate it. When I was listed for transplant, Baylor was >> wonderful. When I lost my job, I lost that too. >> >> Much love, >> Roni >> >> >> >> > Ed's platelets always run around 72,000-80,000...but his >> > hepatologist keeps his eye in it >> > >> > I agree with everyone else..You really need to find a >> > hepatologiost. good luck....you're in my prayers.. >> > >> >                  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 " >> > <livercirrhosissupport >> > > >> > Sent: Saturday, August 27, 2011 7:49 AM >> > Subject: Re: Blood Tests >> > >> > >> > Dear Roni, your platelets are very low. Mine are 110, and I have >> > hard to control nose bleeds. Please be very careful. I wish you had >> > a good >> > hepatologist. The three main blood tests for us are the CBC, CMP, >> and >> > LFT. That is complete blood count, the complete metabolic panel and >> > the >> > Liver function test. >> > You seem to be missing the cmp, complete metabolic panel and LFT's. >> > >> > Something >> > which was stressed to me by my lawyer, whom repeated this point over >> > and over until it was spinning in my head... The Judge and the SSA >> are >> > not interested so much the technical data of your liver, because it >> > doesnt rule out you working (unless it meets blue book), but rather >> > how >> > YOU actually are >> > functioning. Those doctor appointments when we go in smelling fresh >> > and >> > clean with hair all combed, with our usual smile, and answer all the >> > questions given us in the most honest way we can, they KILL us on >> > paper. >> > Ardis used to go to her doctor appointment as >> > best she could, but that usually didnt get her any glowing comments. >> > Instead they wrote things like " patient is in obvious acute >> distress, >> > disheveled, not oriented x3. Severe axterixis. The patient repeats >> > questions over and over. The patient is a 56 year old female who >> seems >> > to be quickly approaching advanced age. History of bleeding, >> multiple >> > transfusions. >> > The first thing my hepatologist said to me yesterday was " you look >> > really good " >> > and >> > Sharon and I both chuckled and said at the same exact time " I/He >> make >> > liver disease look really good! " That is my standard reply when >> > someone >> > knows I'm not feeling well, and they tell my how good I look , as if >> > to >> > say " wow, I am so glad you dont look as bad as you sounded on the >> > phone- that would suck, and I wouldnt want to visit very long, cause >> > it >> > would make me feel bad to have to look at you " . >> > This is not a suggestion to do anything dishonest, but if we look so >> > darn good, we need to make it very clear >> > to the doctor how awful we feel. >> > This is not as easy as it sounds, >> > especially when the hepatologist I see has 5,000 registered >> patients, >> > half of whom are much much sicker than me, and on the transplant >> > list or >> > literally dying. >> > If you have blood tests or events which even come >> > close to meeting the blue book, great but if you dont, how liver >> > disease >> > is actually making you sick is important, and it does help to have >> > your >> > doctor write down what you tell him or her, even if you have to >> resort >> > to what I learned from the " healing well forums " , which was to hand >> > each >> > doctor a computer printed document which said : >> > >> > " Bobby has the >> > following signs and symptoms as outlined by the National library of >> > medicine and National Institute of Health , ; end stage liver >> disease >> > -itching, fatigue, bleeding nose, nausea, weight loss (100 lbs in >> 100 >> > days etc. Portal hypertension, painful enlarged spleen(16 to 17 CM) >> > hepatic encephalopathy, hepatopulmonary syndrome >> > with a shunt fraction of 20% on 100% oxygen, resulting in >> shortness of >> > breath,etc. >> > Each doctor put this in my medical record, even if reluctantly. It >> > was like a shot across the bow, a message >> > if you will. I need them to document document document. >> > Despite >> > this, still my lawyer found stuff in my medical record which was >> > complete bull, such as one ER doc said that had made up symptoms by >> > reading them on the internet, and then he looked like a complete ass >> > after my breathing test came back positive and backed up what I had >> > reported. In almost every single report of pain or feeling ill I >> > give, I >> > get doubt thrown at me, then they run a test, and it comes back >> > positive, and the doctors all get the egg on their face once again. >> > Every single one of my doctors has had to wipe off this egg! (except >> > for >> > my pain doctor, knock on wood) >> > I swear I hate seeking medical care unless I absolutely have to. >> > Good luck, and all . Love, Bobby >> > >> > PS, your doctors are not taking care of YOU, and you are THE most >> > important person in your medical case! >> > >> > >> > >> > ________________________________ >> > >> > To: livercirrhosissupport >> > Sent: Thursday, August 25, 2011 3:43 PM >> > Subject: Blood Tests >> > >> > >> > Hi group, >> > >> > I've been picking up some recent blood tests to take to my lawyer >> for >> > disability case. Anyway, I went to get my latest from gastro done in >> > Feb. I remember when I had the test, they called and said my ammonia >> > was elevated and should take more lactulose. As I was looking this >> > over to see if I could calculate my own meld score, I noticed things >> > that were way off besides my ammonia. Mainly, my PLT (platelet >> count) >> > was way off at 34. Normal is 186-348. Other things were my glucose >> > was 127, WBC 4.2 and MPV 11.2. And there was nothing about >> billrubin, >> > INR or Serum Creatinine which are needed for meld score. Isn't that >> > like an extremely low PLT? I learning all kinds of things about my >> > doctors looking over this stuff. >> > >> > Thanks! >> > Roni >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2011 Report Share Posted August 29, 2011 I have had times like that Jan. Huge bruises would just show up out of no where. Never apologize for feeling down. It's hard not to feel down sometimes and it gets the best of all of us. Much love, Roni > my hemotologist wants me to go off aspirin, thinking I may have a > small constant bleed which is causing my anemia. I have yet to hear > from my cardio who prescribed it, but have been having trouble with > small holes in my legs and arms not wanting to stop bleeding. Also, > went shopping with a friend on Tues through Thurs morning, carrying a > tote bag on my right arm most of the time when not in the motel or > car. I had red spots all over my arm where the strap had rubbed, now > turned to regular looking bruises. Also the veins on the back of my > arm where inflated and much larger than usual. I think my veins and > arteries are just shot. I have one good spot left to draw blood and > put in ivs. > I hate this " lets try this method of diagnosis " Would rather have a > test even if it is a bone marrow test with 6 seconds of excruciating > pain. Frustrating going 3 years or more and still no diagnosis. At > least I am getting some treatment now which helps the anemia. Sorry > if I sound down, really over did it this week, and still hurt all over > 3 days later. Jan > > > >> Hi Bobby, >> >> No, it was pretty stupid. I've had massive nose bleeds like you >> describe but it's been along time ago. Since I believe in positive >> thinking and healing I will say there won't be another bleed. But I >> do promise I will go to ER if I ever need to. I did almost die >> the first time. I think my hemoglobin was 5 and I actually walked to >> my room. The guy I was dating at the time was making these green >> protein drinks for me. I always blamed the protein drinks. Hehe. >> >> Roni >> >> >> >>> I am not saying that you were stupid for riding out a bleed at home. >>> I had a nose bleed in November 2005 that went on for over an hour, >>> and I made a huge mess in the mens room at work trying to clean it >>> up, until I looked like someone had stabbed me. I literally had >>> blood from my chin to my knees! >>> >>> Here is what emedicine says about varicies; >>> >>> Bleeding varicies carries a 50% risk of mortality for the first >>> bleeding episode. >>> >>> " Patients who have bled once from esophageal varices have a 70% >>> chance >>> of rebleeding, and approximately one third of further bleeding >>> episodes >>> are fatal. The risk of death is maximal during the first few days >>> after >>> the bleeding episode and decreases slowly over the first 6 weeks. >>> Mortality rates in the setting of surgical intervention for acute >>> variceal bleeding are high. >>> >>> Associated abnormalities in the renal, pulmonary, cardiovascular, >>> and >>> immune systems in patients with esophageal varices contribute to >>> 20-65% >>> of mortality... >>> >>> ...High morbidity and mortality (30-40% of the group with severe >>> persistent GI hemorrhage) - Factors such as underlying liver disease >>> and >>> associated abnormalities of the renal, cardiovascular, and immune >>> systems contribute to the high morbidity and mortality. " >>> " The management of oesophageal bleeding disorders >>> remains a challenging problem in the emergency department. >>> Oesophageal >>> varices are dilated veins; they are most commonly a result of portal >>> hypertension and are often associated with a poor outcome.1 >>> Haemorrhage >>> from oesophageal varices is a life-threatening emergency with a >>> mortality rate of 30–50%. Approximately90% of patients with >>> cirrhosis will develop varices, of which bleeding occurs in 25–35%. >>> -eMedicine >>> >>> This is probably the most serious issue for people with liver >>> disease. This keeps me up at night, especially when I am one year >>> over due for an endoscope, as I discovered last night. >>> >>> Hindsight is always 20 20. I do not blame you about not wanting to >>> go in to the hospital for things, especially when they treat us so >>> bad much of the time, but please promise us you will call 911 if you >>> ever have another bleed? Thanks,,, Love, Bobby >>> >>> >>> >>> To: livercirrhosissupport >>> Sent: Sunday, August 28, 2011 12:34 AM >>> Subject: Re: Blood Tests >>> >>> Thanks Jill, >>> >>> I appreciate it. When I was listed for transplant, Baylor was >>> wonderful. When I lost my job, I lost that too. >>> >>> Much love, >>> Roni >>> >>> >>> >>>> Ed's platelets always run around 72,000-80,000...but his >>>> hepatologist keeps his eye in it >>>> >>>> I agree with everyone else..You really need to find a >>>> hepatologiost. good luck....you're in my prayers.. >>>> >>>> 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 " >>>> <livercirrhosissupport >>>>> >>>> Sent: Saturday, August 27, 2011 7:49 AM >>>> Subject: Re: Blood Tests >>>> >>>> >>>> Dear Roni, your platelets are very low. Mine are 110, and I have >>>> hard to control nose bleeds. Please be very careful. I wish you had >>>> a good >>>> hepatologist. The three main blood tests for us are the CBC, CMP, >>> and >>>> LFT. That is complete blood count, the complete metabolic panel and >>>> the >>>> Liver function test. >>>> You seem to be missing the cmp, complete metabolic panel and LFT's. >>>> >>>> Something >>>> which was stressed to me by my lawyer, whom repeated this point >>>> over >>>> and over until it was spinning in my head... The Judge and the SSA >>> are >>>> not interested so much the technical data of your liver, because it >>>> doesnt rule out you working (unless it meets blue book), but >>>> rather >>>> how >>>> YOU actually are >>>> functioning. Those doctor appointments when we go in smelling fresh >>>> and >>>> clean with hair all combed, with our usual smile, and answer all >>>> the >>>> questions given us in the most honest way we can, they KILL us on >>>> paper. >>>> Ardis used to go to her doctor appointment as >>>> best she could, but that usually didnt get her any glowing >>>> comments. >>>> Instead they wrote things like " patient is in obvious acute >>> distress, >>>> disheveled, not oriented x3. Severe axterixis. The patient repeats >>>> questions over and over. The patient is a 56 year old female who >>> seems >>>> to be quickly approaching advanced age. History of bleeding, >>> multiple >>>> transfusions. >>>> The first thing my hepatologist said to me yesterday was " you look >>>> really good " >>>> and >>>> Sharon and I both chuckled and said at the same exact time " I/He >>> make >>>> liver disease look really good! " That is my standard reply when >>>> someone >>>> knows I'm not feeling well, and they tell my how good I look , as >>>> if >>>> to >>>> say " wow, I am so glad you dont look as bad as you sounded on the >>>> phone- that would suck, and I wouldnt want to visit very long, >>>> cause >>>> it >>>> would make me feel bad to have to look at you " . >>>> This is not a suggestion to do anything dishonest, but if we look >>>> so >>>> darn good, we need to make it very clear >>>> to the doctor how awful we feel. >>>> This is not as easy as it sounds, >>>> especially when the hepatologist I see has 5,000 registered >>> patients, >>>> half of whom are much much sicker than me, and on the transplant >>>> list or >>>> literally dying. >>>> If you have blood tests or events which even come >>>> close to meeting the blue book, great but if you dont, how liver >>>> disease >>>> is actually making you sick is important, and it does help to have >>>> your >>>> doctor write down what you tell him or her, even if you have to >>> resort >>>> to what I learned from the " healing well forums " , which was to hand >>>> each >>>> doctor a computer printed document which said : >>>> >>>> " Bobby has the >>>> following signs and symptoms as outlined by the National library of >>>> medicine and National Institute of Health , ; end stage liver >>> disease >>>> -itching, fatigue, bleeding nose, nausea, weight loss (100 lbs in >>> 100 >>>> days etc. Portal hypertension, painful enlarged spleen(16 to 17 CM) >>>> hepatic encephalopathy, hepatopulmonary syndrome >>>> with a shunt fraction of 20% on 100% oxygen, resulting in >>> shortness of >>>> breath,etc. >>>> Each doctor put this in my medical record, even if reluctantly. It >>>> was like a shot across the bow, a message >>>> if you will. I need them to document document document. >>>> Despite >>>> this, still my lawyer found stuff in my medical record which was >>>> complete bull, such as one ER doc said that had made up symptoms >>>> by >>>> reading them on the internet, and then he looked like a complete >>>> ass >>>> after my breathing test came back positive and backed up what I had >>>> reported. In almost every single report of pain or feeling ill I >>>> give, I >>>> get doubt thrown at me, then they run a test, and it comes back >>>> positive, and the doctors all get the egg on their face once again. >>>> Every single one of my doctors has had to wipe off this egg! >>>> (except >>>> for >>>> my pain doctor, knock on wood) >>>> I swear I hate seeking medical care unless I absolutely have to. >>>> Good luck, and all . Love, Bobby >>>> >>>> PS, your doctors are not taking care of YOU, and you are THE most >>>> important person in your medical case! >>>> >>>> >>>> >>>> ________________________________ >>>> >>>> To: livercirrhosissupport >>>> Sent: Thursday, August 25, 2011 3:43 PM >>>> Subject: Blood Tests >>>> >>>> >>>> Hi group, >>>> >>>> I've been picking up some recent blood tests to take to my lawyer >>> for >>>> disability case. Anyway, I went to get my latest from gastro done >>>> in >>>> Feb. I remember when I had the test, they called and said my >>>> ammonia >>>> was elevated and should take more lactulose. As I was looking this >>>> over to see if I could calculate my own meld score, I noticed >>>> things >>>> that were way off besides my ammonia. Mainly, my PLT (platelet >>> count) >>>> was way off at 34. Normal is 186-348. Other things were my glucose >>>> was 127, WBC 4.2 and MPV 11.2. And there was nothing about >>> billrubin, >>>> INR or Serum Creatinine which are needed for meld score. Isn't that >>>> like an extremely low PLT? I learning all kinds of things about my >>>> doctors looking over this stuff. >>>> >>>> Thanks! >>>> Roni >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2011 Report Share Posted August 29, 2011 They usuallly do an INR only when I ask for it. Since I don't expect to have a transplant, I don't ask for it very often. And, my blood work does not agree with the biopsy so not sure if it would be very helpful. One doctor asked if I was sure I had cirrhosis since my blood work is pretty normal except for the anemia and kidney problems. Jan > > > Jan, I recently saw this diagnosis on the internet. It sounds like really > really low clotting factors. I saw a picture of a man with red spots all > over. it was really disturbing. Arent they doing a regular INR on you? Love, > Bobby > > > > ________________________________ > > To: livercirrhosissupport > Sent: Sunday, August 28, 2011 7:42 PM > Subject: Re: Blood Tests > > my hemotologist wants me to go off aspirin, thinking I may have a > small constant bleed which is causing my anemia. I have yet to hear > from my cardio who prescribed it, but have been having trouble with > small holes in my legs and arms not wanting to stop bleeding. Also, > went shopping with a friend on Tues through Thurs morning, carrying a > tote bag on my right arm most of the time when not in the motel or > car. I had red spots all over my arm where the strap had rubbed, now > turned to regular looking bruises. Also the veins on the back of my > arm where inflated and much larger than usual. I think my veins and > arteries are just shot. I have one good spot left to draw blood and > put in ivs. > I hate this " lets try this method of diagnosis " Would rather have a > test even if it is a bone marrow test with 6 seconds of excruciating > pain. Frustrating going 3 years or more and still no diagnosis. At > least I am getting some treatment now which helps the anemia. Sorry > if I sound down, really over did it this week, and still hurt all over > 3 days later. Jan > > > >> Hi Bobby, >> >> No, it was pretty stupid. I've had massive nose bleeds like you >> describe but it's been along time ago. Since I believe in positive >> thinking and healing I will say there won't be another bleed. But I >> do promise I will go to ER if I ever need to. I did almost die >> the first time. I think my hemoglobin was 5 and I actually walked to >> my room. The guy I was dating at the time was making these green >> protein drinks for me. I always blamed the protein drinks. Hehe. >> >> Roni >> >> >> >>> I am not saying that you were stupid for riding out a bleed at home. >>> I had a nose bleed in November 2005 that went on for over an hour, >>> and I made a huge mess in the mens room at work trying to clean it >>> up, until I looked like someone had stabbed me. I literally had >>> blood from my chin to my knees! >>> >>> Here is what emedicine says about varicies; >>> >>> Bleeding varicies carries a 50% risk of mortality for the first >>> bleeding episode. >>> >>> " Patients who have bled once from esophageal varices have a 70% chance >>> of rebleeding, and approximately one third of further bleeding >>> episodes >>> are fatal. The risk of death is maximal during the first few days >>> after >>> the bleeding episode and decreases slowly over the first 6 weeks. >>> Mortality rates in the setting of surgical intervention for acute >>> variceal bleeding are high. >>> >>> Associated abnormalities in the renal, pulmonary, cardiovascular, and >>> immune systems in patients with esophageal varices contribute to >>> 20-65% >>> of mortality... >>> >>> ...High morbidity and mortality (30-40% of the group with severe >>> persistent GI hemorrhage) - Factors such as underlying liver disease >>> and >>> associated abnormalities of the renal, cardiovascular, and immune >>> systems contribute to the high morbidity and mortality. " >>> " The management of oesophageal bleeding disorders >>> remains a challenging problem in the emergency department. Oesophageal >>> varices are dilated veins; they are most commonly a result of portal >>> hypertension and are often associated with a poor outcome.1 >>> Haemorrhage >>> from oesophageal varices is a life-threatening emergency with a >>> mortality rate of 30–50%. Approximately90% of patients with >>> cirrhosis will develop varices, of which bleeding occurs in 25–35%. >>> -eMedicine >>> >>> This is probably the most serious issue for people with liver >>> disease. This keeps me up at night, especially when I am one year >>> over due for an endoscope, as I discovered last night. >>> >>> Hindsight is always 20 20. I do not blame you about not wanting to >>> go in to the hospital for things, especially when they treat us so >>> bad much of the time, but please promise us you will call 911 if you >>> ever have another bleed? Thanks,,, Love, Bobby >>> >>> >>> >>> To: livercirrhosissupport >>> Sent: Sunday, August 28, 2011 12:34 AM >>> Subject: Re: Blood Tests >>> >>> Thanks Jill, >>> >>> I appreciate it. When I was listed for transplant, Baylor was >>> wonderful. When I lost my job, I lost that too. >>> >>> Much love, >>> Roni >>> >>> >>> >>> > Ed's platelets always run around 72,000-80,000...but his >>> > hepatologist keeps his eye in it >>> > >>> > I agree with everyone else..You really need to find a >>> > hepatologiost. good luck....you're in my prayers.. >>> > >>> > 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 " >>> > <livercirrhosissupport >>> > > >>> > Sent: Saturday, August 27, 2011 7:49 AM >>> > Subject: Re: Blood Tests >>> > >>> > >>> > Dear Roni, your platelets are very low. Mine are 110, and I have >>> > hard to control nose bleeds. Please be very careful. I wish you had >>> > a good >>> > hepatologist. The three main blood tests for us are the CBC, CMP, >>> and >>> > LFT. That is complete blood count, the complete metabolic panel and >>> > the >>> > Liver function test. >>> > You seem to be missing the cmp, complete metabolic panel and LFT's. >>> > >>> > Something >>> > which was stressed to me by my lawyer, whom repeated this point over >>> > and over until it was spinning in my head... The Judge and the SSA >>> are >>> > not interested so much the technical data of your liver, because it >>> > doesnt rule out you working (unless it meets blue book), but rather >>> > how >>> > YOU actually are >>> > functioning. Those doctor appointments when we go in smelling fresh >>> > and >>> > clean with hair all combed, with our usual smile, and answer all the >>> > questions given us in the most honest way we can, they KILL us on >>> > paper. >>> > Ardis used to go to her doctor appointment as >>> > best she could, but that usually didnt get her any glowing comments. >>> > Instead they wrote things like " patient is in obvious acute >>> distress, >>> > disheveled, not oriented x3. Severe axterixis. The patient repeats >>> > questions over and over. The patient is a 56 year old female who >>> seems >>> > to be quickly approaching advanced age. History of bleeding, >>> multiple >>> > transfusions. >>> > The first thing my hepatologist said to me yesterday was " you look >>> > really good " >>> > and >>> > Sharon and I both chuckled and said at the same exact time " I/He >>> make >>> > liver disease look really good! " That is my standard reply when >>> > someone >>> > knows I'm not feeling well, and they tell my how good I look , as if >>> > to >>> > say " wow, I am so glad you dont look as bad as you sounded on the >>> > phone- that would suck, and I wouldnt want to visit very long, cause >>> > it >>> > would make me feel bad to have to look at you " . >>> > This is not a suggestion to do anything dishonest, but if we look so >>> > darn good, we need to make it very clear >>> > to the doctor how awful we feel. >>> > This is not as easy as it sounds, >>> > especially when the hepatologist I see has 5,000 registered >>> patients, >>> > half of whom are much much sicker than me, and on the transplant >>> > list or >>> > literally dying. >>> > If you have blood tests or events which even come >>> > close to meeting the blue book, great but if you dont, how liver >>> > disease >>> > is actually making you sick is important, and it does help to have >>> > your >>> > doctor write down what you tell him or her, even if you have to >>> resort >>> > to what I learned from the " healing well forums " , which was to hand >>> > each >>> > doctor a computer printed document which said : >>> > >>> > " Bobby has the >>> > following signs and symptoms as outlined by the National library of >>> > medicine and National Institute of Health , ; end stage liver >>> disease >>> > -itching, fatigue, bleeding nose, nausea, weight loss (100 lbs in >>> 100 >>> > days etc. Portal hypertension, painful enlarged spleen(16 to 17 CM) >>> > hepatic encephalopathy, hepatopulmonary syndrome >>> > with a shunt fraction of 20% on 100% oxygen, resulting in >>> shortness of >>> > breath,etc. >>> > Each doctor put this in my medical record, even if reluctantly. It >>> > was like a shot across the bow, a message >>> > if you will. I need them to document document document. >>> > Despite >>> > this, still my lawyer found stuff in my medical record which was >>> > complete bull, such as one ER doc said that had made up symptoms by >>> > reading them on the internet, and then he looked like a complete ass >>> > after my breathing test came back positive and backed up what I had >>> > reported. In almost every single report of pain or feeling ill I >>> > give, I >>> > get doubt thrown at me, then they run a test, and it comes back >>> > positive, and the doctors all get the egg on their face once again. >>> > Every single one of my doctors has had to wipe off this egg! (except >>> > for >>> > my pain doctor, knock on wood) >>> > I swear I hate seeking medical care unless I absolutely have to. >>> > Good luck, and all . Love, Bobby >>> > >>> > PS, your doctors are not taking care of YOU, and you are THE most >>> > important person in your medical case! >>> > >>> > >>> > >>> > ________________________________ >>> > >>> > To: livercirrhosissupport >>> > Sent: Thursday, August 25, 2011 3:43 PM >>> > Subject: Blood Tests >>> > >>> > >>> > Hi group, >>> > >>> > I've been picking up some recent blood tests to take to my lawyer >>> for >>> > disability case. Anyway, I went to get my latest from gastro done in >>> > Feb. I remember when I had the test, they called and said my ammonia >>> > was elevated and should take more lactulose. As I was looking this >>> > over to see if I could calculate my own meld score, I noticed things >>> > that were way off besides my ammonia. Mainly, my PLT (platelet >>> count) >>> > was way off at 34. Normal is 186-348. Other things were my glucose >>> > was 127, WBC 4.2 and MPV 11.2. And there was nothing about >>> billrubin, >>> > INR or Serum Creatinine which are needed for meld score. Isn't that >>> > like an extremely low PLT? I learning all kinds of things about my >>> > doctors looking over this stuff. >>> > >>> > Thanks! >>> > Roni >>> > >>> > Quote Link to comment Share on other sites More sharing options...
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