Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Hanna - I had to call the manager of a whole series of medical clinics run by our closest hospital yesterday to get a referral sent to the dr I had to see today. They had goofed on it for 10 days, never called me, I had to find out myself three times that they hadn't sent it. Finally yesterday morning the one responsible to do it said she would do it about 3 or 4 yesterday afternoon. That wasn't acceptable. If my heart surgeons office didn't have it, I would have to drive up 35 miles to get it myself and bring it with me for my appt today. So, I called to ask for the patient rep, guess they don't have one, my call went to the manager of the whole system. She called back in a few minutes, said it would be done at noon when there were no patients in the office. Now, I had made numerous calls to that office, my call yesterday morning she had all the info in her hands while I was talking to her. Her manager called her and told her to do it. How much faster it would have been if she had just done her job after the first phone call. I hesitated to call the manager when a nurse friend told to do it because I have to go into that doctor's office for my primary care and she will be there everytime I do that. But, I am not going to feel the least uncomfortable about it, the fault was not mine. On top of that, the manager tried to blame another doctor for the problem. I didn't let her get by with that. It is really hard to stand up for yourself or a loved one when it comes to things like this, but I think most people here have learned the hard way that you have to do it. Now for the really " good " news, read that very bad, I am not having my triple bypass on Thursday because when they did the pre surgery work up on me today, they found I have a UTI and they can't operate on one someone who has an infection. So, it is put off for 7 days at least. grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr Jan H On Tue, Apr 8, 2008 at 9:15 PM, Bob Aragon wrote: > Hanna, if the doctor who saw your dad says it is that serious, than I > understand why you are having breakdowns every day of crying. I would too. > Heres what someone needs to do. When I went to my doctor in June 06 while > Ardis was still alive, I saw how she was suffering of this terrible disease, > and decided that I didn't want to die like her. I punted , went to my doctor > , and confessed that I had hidden being a HEAVY drinker from her for 15 > years. She did every test on me in the book. She declared me free from liver > disease. She even got stern with me and told me that " NO, you need to let go > of this idea " . The problem was that I was noticing certain changes in my > body. One was profound breast enlargement. another was that my BUN (blood > urea nitrogen level) was 3. Normal low is usually around 6. > http://www.nlm.nih.gov/medlineplus/ency/article/003474.htm > read down in that article to low values. (liver failure) > She convinced me that I only had a bad gallbladder. I agreed to have it > out. When I woke up, my surgeon was there. The first thing out of my mouth > was " did you see my liver? " " what did it look like " ?. He patted me on my back > and said, " I'm sorry, you have cirrhosis. Macronodular type. " But look on > the bright side, at least you dont have portal hypertension. " Hanna, I had > to diagnose my own liver disease. And I had to diagnose my own portal > hypertension. I have gotten waaaaay off topic. What I did after that night > was call the hepatology clinic every day to check for a cancellation. > Otherwise I would have had to wait several months. Someone needs to get on > the phone. This needs attention. In this game, one needs to play hardball, > lean forward. The " medicals " will DROP you through the cracks if you #1. > dont be your own advcate. In your dads case, he may need someone's help. #2 > squeek, and if you need to squeek LOUDLY. and #3 learn all you can about how > the > liver works, you are going to be shocked at how many signs and symptoms > you have already missed. I had terrible nose bleeds, and bleeding hemroids, > and had no idea what soever that I could have bled to death. One nosebleed > took over an hour to stop. I was at work, and we were having thanksgiving > for our crew, and I just started bleeding, and I was trying to mop up the > floor, and I had blood every where. It l;ooked like a murder had occured in > there. My shirt was solid red from my chin to my belt. Get on the phone for > your dad. You dont have to wait for anyone. He may need a referral,m but > that doesnt take anytime at all. You take the first available, and then you > call for cancellations. And if his condition gets worse, take him to the ER > at a transplant hospital. Usually it is a university hospital. > http://www.massgeneral.org/transplant/liver.asp?id=patients > http://en.wikipedia.org/wiki/Beth_Israel_Deaconess_Medical_Center > > http://www.transplantliving.org/Community/members/membersDirectory.aspx?memberTy\ pe=Transplant%20Centers%20by%20Organ & organ=DLI & state=ALL & region= & orderBy=i.ctr_c\ d > Re: [Liver Cirrhosis > Support] Digest Number 1839 > > Hannah: I know that people do refer to a biopsy as the " gold standard, " > but they arenot always done. I lost my mom to non-alcoholic cirrhosis last > September,and she never had one. She had a really low platelet count, and > they wereconcerned about her bleeding following the biopsy. I know they did > a CATscan and ultrasound, and they might have done an MRI as well. She also > hadesophageal varices, and swelling in her legs. They didn't think that > thebiopsy was worth the risk to absolutely positively diagnose cirrhosis. > Theycould see the nodules on the other tests. And yes, she was followed by > alocal hepatologist, and she was seeing the head of the transplant program > ata university hospital. It really wasn't a question of not having > enoughspecialists around, it was just a calculated risk to not have the > biopsy. Cirrhosis is such a strange disease, at least I found it to be. > Severaldays before my mom died, her liver values were still " normal. " > ************ > ********* ********* * Thank > you so much for getting back to me, it means a lot to me. I checkedout > your blog, amazing, I could not find where to leave a comment though =( > Thank you so much for all of the information. I did have one question > thoughthat they have not perfprmed a liver biopsy yet on my Father and I not > surewhy? Should they have done this already? They said they will be > performingthis at the Lahey Clinic in Boston. Also when you say that my > Father has decompensated " liver disease, does this mean that anything could > happen tohim before the liver transplant is performed? He is taking many > medicationsand also eating right and not drinking alcohol at all. Thank you > so much for all of your help and I am so glad that I can be a partof this > group. You will also be in my prayers. Thank you. Hannah[Non-text portions > of this message have been removed] > > ____________ _________ _________ _________ _________ _________ _ > You dream job is up for grabs. Grab it. > http://mycareer. com.au/?s_cid= 596065 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 OH rats, Jan!! Sent via BlackBerry from T-Mobile Re: Digest Number 1839 Hanna - I had to call the manager of a whole series of medical clinics run by our closest hospital yesterday to get a referral sent to the dr I had to see today. They had goofed on it for 10 days, never called me, I had to find out myself three times that they hadn't sent it. Finally yesterday morning the one responsible to do it said she would do it about 3 or 4 yesterday afternoon. That wasn't acceptable. If my heart surgeons office didn't have it, I would have to drive up 35 miles to get it myself and bring it with me for my appt today. So, I called to ask for the patient rep, guess they don't have one, my call went to the manager of the whole system. She called back in a few minutes, said it would be done at noon when there were no patients in the office. Now, I had made numerous calls to that office, my call yesterday morning she had all the info in her hands while I was talking to her. Her manager called her and told her to do it. How much faster it would have been if she had just done her job after the first phone call. I hesitated to call the manager when a nurse friend told to do it because I have to go into that doctor's office for my primary care and she will be there everytime I do that. But, I am not going to feel the least uncomfortable about it, the fault was not mine. On top of that, the manager tried to blame another doctor for the problem. I didn't let her get by with that. It is really hard to stand up for yourself or a loved one when it comes to things like this, but I think most people here have learned the hard way that you have to do it. Now for the really " good " news, read that very bad, I am not having my triple bypass on Thursday because when they did the pre surgery work up on me today, they found I have a UTI and they can't operate on one someone who has an infection. So, it is put off for 7 days at least. grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr Jan H On Tue, Apr 8, 2008 at 9:15 PM, Bob Aragon <robwalkingeagle@ <mailto:robwalkingeagle%40yahoo.com> yahoo.com> wrote: > Hanna, if the doctor who saw your dad says it is that serious, than I > understand why you are having breakdowns every day of crying. I would too. > Heres what someone needs to do. When I went to my doctor in June 06 while > Ardis was still alive, I saw how she was suffering of this terrible disease, > and decided that I didn't want to die like her. I punted , went to my doctor > , and confessed that I had hidden being a HEAVY drinker from her for 15 > years. She did every test on me in the book. She declared me free from liver > disease. She even got stern with me and told me that " NO, you need to let go > of this idea " . The problem was that I was noticing certain changes in my > body. One was profound breast enlargement. another was that my BUN (blood > urea nitrogen level) was 3. Normal low is usually around 6. > http://www.nlm. <http://www.nlm.nih.gov/medlineplus/ency/article/003474.htm> nih.gov/medlineplus/ency/article/003474.htm > read down in that article to low values. (liver failure) > She convinced me that I only had a bad gallbladder. I agreed to have it > out. When I woke up, my surgeon was there. The first thing out of my mouth > was " did you see my liver? " " what did it look like " ?. He patted me on my back > and said, " I'm sorry, you have cirrhosis. Macronodular type. " But look on > the bright side, at least you dont have portal hypertension. " Hanna, I had > to diagnose my own liver disease. And I had to diagnose my own portal > hypertension. I have gotten waaaaay off topic. What I did after that night > was call the hepatology clinic every day to check for a cancellation. > Otherwise I would have had to wait several months. Someone needs to get on > the phone. This needs attention. In this game, one needs to play hardball, > lean forward. The " medicals " will DROP you through the cracks if you #1. > dont be your own advcate. In your dads case, he may need someone's help. #2 > squeek, and if you need to squeek LOUDLY. and #3 learn all you can about how > the > liver works, you are going to be shocked at how many signs and symptoms > you have already missed. I had terrible nose bleeds, and bleeding hemroids, > and had no idea what soever that I could have bled to death. One nosebleed > took over an hour to stop. I was at work, and we were having thanksgiving > for our crew, and I just started bleeding, and I was trying to mop up the > floor, and I had blood every where. It l;ooked like a murder had occured in > there. My shirt was solid red from my chin to my belt. Get on the phone for > your dad. You dont have to wait for anyone. He may need a referral,m but > that doesnt take anytime at all. You take the first available, and then you > call for cancellations. And if his condition gets worse, take him to the ER > at a transplant hospital. Usually it is a university hospital. > http://www.massgene <http://www.massgeneral.org/transplant/liver.asp?id=patients> ral.org/transplant/liver.asp?id=patients > http://en.wikipedia <http://en.wikipedia.org/wiki/Beth_Israel_Deaconess_Medical_Center> ..org/wiki/Beth_Israel_Deaconess_Medical_Center > > http://www.transpla <http://www.transplantliving.org/Community/members/membersDirectory.aspx?memberT\ ype=Transplant%20Centers%20by%20Organ & amp;organ=DLI & amp;state=ALL & amp;region= & am\ p;orderBy=i.ctr_cd> ntliving.org/Community/members/membersDirectory.aspx?memberType=Transplant%20Cen\ ters%20by%20Organ & organ=DLI & state=ALL & region= & orderBy=i.ctr_cd > Re: [Liver Cirrhosis > Support] Digest Number 1839 > > Hannah: I know that people do refer to a biopsy as the " gold standard, " > but they arenot always done. I lost my mom to non-alcoholic cirrhosis last > September,and she never had one. She had a really low platelet count, and > they wereconcerned about her bleeding following the biopsy. I know they did > a CATscan and ultrasound, and they might have done an MRI as well. She also > hadesophageal varices, and swelling in her legs. They didn't think that > thebiopsy was worth the risk to absolutely positively diagnose cirrhosis. > Theycould see the nodules on the other tests. And yes, she was followed by > alocal hepatologist, and she was seeing the head of the transplant program > ata university hospital. It really wasn't a question of not having > enoughspecialists around, it was just a calculated risk to not have the > biopsy. Cirrhosis is such a strange disease, at least I found it to be. > Severaldays before my mom died, her liver values were still " normal. " > ************ > ********* ********* * Thank > you so much for getting back to me, it means a lot to me. I checkedout > your blog, amazing, I could not find where to leave a comment though =( > Thank you so much for all of the information. I did have one question > thoughthat they have not perfprmed a liver biopsy yet on my Father and I not > surewhy? Should they have done this already? They said they will be > performingthis at the Lahey Clinic in Boston. Also when you say that my > Father has decompensated " liver disease, does this mean that anything could > happen tohim before the liver transplant is performed? He is taking many > medicationsand also eating right and not drinking alcohol at all. Thank you > so much for all of your help and I am so glad that I can be a partof this > group. You will also be in my prayers. Thank you. Hannah[Non-text portions > of this message have been removed] > > ____________ _________ _________ _________ _________ _________ _ > You dream job is up for grabs. Grab it. > http://mycareer. <http://mycareer.> com.au/?s_cid= 596065 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Oooh, Jan. I'm so sorry things seem to be amiss. But on the bright side, maybe it's for a reason? I know it's hard, but maybe the lesson really here is, " all good things come to those who wait. " ? MaC Jan Holman wrote: Hanna - I had to call the manager of a whole series of medical clinics run by our closest hospital yesterday to get a referral sent to the dr I had to see today. They had goofed on it for 10 days, never called me, I had to find out myself three times that they hadn't sent it. Finally yesterday morning the one responsible to do it said she would do it about 3 or 4 yesterday afternoon. That wasn't acceptable. If my heart surgeons office didn't have it, I would have to drive up 35 miles to get it myself and bring it with me for my appt today. So, I called to ask for the patient rep, guess they don't have one, my call went to the manager of the whole system. She called back in a few minutes, said it would be done at noon when there were no patients in the office. Now, I had made numerous calls to that office, my call yesterday morning she had all the info in her hands while I was talking to her. Her manager called her and told her to do it. How much faster it would have been if she had just done her job after the first phone call. I hesitated to call the manager when a nurse friend told to do it because I have to go into that doctor's office for my primary care and she will be there everytime I do that. But, I am not going to feel the least uncomfortable about it, the fault was not mine. On top of that, the manager tried to blame another doctor for the problem. I didn't let her get by with that. It is really hard to stand up for yourself or a loved one when it comes to things like this, but I think most people here have learned the hard way that you have to do it. Now for the really " good " news, read that very bad, I am not having my triple bypass on Thursday because when they did the pre surgery work up on me today, they found I have a UTI and they can't operate on one someone who has an infection. So, it is put off for 7 days at least. grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr Jan H On Tue, Apr 8, 2008 at 9:15 PM, Bob Aragon wrote: > Hanna, if the doctor who saw your dad says it is that serious, than I > understand why you are having breakdowns every day of crying. I would too. > Heres what someone needs to do. When I went to my doctor in June 06 while > Ardis was still alive, I saw how she was suffering of this terrible disease, > and decided that I didn't want to die like her. I punted , went to my doctor > , and confessed that I had hidden being a HEAVY drinker from her for 15 > years. She did every test on me in the book. She declared me free from liver > disease. She even got stern with me and told me that " NO, you need to let go > of this idea " . The problem was that I was noticing certain changes in my > body. One was profound breast enlargement. another was that my BUN (blood > urea nitrogen level) was 3. Normal low is usually around 6. > http://www.nlm.nih.gov/medlineplus/ency/article/003474.htm > read down in that article to low values. (liver failure) > She convinced me that I only had a bad gallbladder. I agreed to have it > out. When I woke up, my surgeon was there. The first thing out of my mouth > was " did you see my liver? " " what did it look like " ?. He patted me on my back > and said, " I'm sorry, you have cirrhosis. Macronodular type. " But look on > the bright side, at least you dont have portal hypertension. " Hanna, I had > to diagnose my own liver disease. And I had to diagnose my own portal > hypertension. I have gotten waaaaay off topic. What I did after that night > was call the hepatology clinic every day to check for a cancellation. > Otherwise I would have had to wait several months. Someone needs to get on > the phone. This needs attention. In this game, one needs to play hardball, > lean forward. The " medicals " will DROP you through the cracks if you #1. > dont be your own advcate. In your dads case, he may need someone's help. #2 > squeek, and if you need to squeek LOUDLY. and #3 learn all you can about how > the > liver works, you are going to be shocked at how many signs and symptoms > you have already missed. I had terrible nose bleeds, and bleeding hemroids, > and had no idea what soever that I could have bled to death. One nosebleed > took over an hour to stop. I was at work, and we were having thanksgiving > for our crew, and I just started bleeding, and I was trying to mop up the > floor, and I had blood every where. It l;ooked like a murder had occured in > there. My shirt was solid red from my chin to my belt. Get on the phone for > your dad. You dont have to wait for anyone. He may need a referral,m but > that doesnt take anytime at all. You take the first available, and then you > call for cancellations. And if his condition gets worse, take him to the ER > at a transplant hospital. Usually it is a university hospital. > http://www.massgeneral.org/transplant/liver.asp?id=patients > http://en.wikipedia.org/wiki/Beth_Israel_Deaconess_Medical_Center > > http://www.transplantliving.org/Community/members/membersDirectory.aspx?memberTy\ pe=Transplant%20Centers%20by%20Organ & organ=DLI & state=ALL & region= & orderBy=i.ctr_c\ d > Re: [Liver Cirrhosis > Support] Digest Number 1839 > > Hannah: I know that people do refer to a biopsy as the " gold standard, " > but they arenot always done. I lost my mom to non-alcoholic cirrhosis last > September,and she never had one. She had a really low platelet count, and > they wereconcerned about her bleeding following the biopsy. I know they did > a CATscan and ultrasound, and they might have done an MRI as well. She also > hadesophageal varices, and swelling in her legs. They didn't think that > thebiopsy was worth the risk to absolutely positively diagnose cirrhosis. > Theycould see the nodules on the other tests. And yes, she was followed by > alocal hepatologist, and she was seeing the head of the transplant program > ata university hospital. It really wasn't a question of not having > enoughspecialists around, it was just a calculated risk to not have the > biopsy. Cirrhosis is such a strange disease, at least I found it to be. > Severaldays before my mom died, her liver values were still " normal. " > ************ > ********* ********* * Thank > you so much for getting back to me, it means a lot to me. I checkedout > your blog, amazing, I could not find where to leave a comment though =( > Thank you so much for all of the information. I did have one question > thoughthat they have not perfprmed a liver biopsy yet on my Father and I not > surewhy? Should they have done this already? They said they will be > performingthis at the Lahey Clinic in Boston. Also when you say that my > Father has decompensated " liver disease, does this mean that anything could > happen tohim before the liver transplant is performed? He is taking many > medicationsand also eating right and not drinking alcohol at all. Thank you > so much for all of your help and I am so glad that I can be a partof this > group. You will also be in my prayers. Thank you. Hannah[Non-text portions > of this message have been removed] > > ____________ _________ _________ _________ _________ _________ _ > You dream job is up for grabs. Grab it. > http://mycareer. com.au/?s_cid= 596065 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Thanks, but sometimes I do become over optimistic. Which is my nature. 5 weeks may be overly long. The only reason I can find that it would take so long is that a doctor puts the request in as a non urgent case or like in Jan's situation the hired help jacks up the appointments. But it would help to call everyday. Persistence pays off. Again, the one thing I've learned in the military and government, is that the squeaky wheel gets the oil. Never be afraid to squeak! What is the least that can happen? No change? No Difference? Nothing? Or, the opposite can happen. Change!, Difference! Or at the very least a reaction to your voice and concerns!!!! So squeak and squeak often! MaC robwalkingeagle@... wrote: I don't mean top sound panicky, but 5 weeks to SET UP an appointment? This aint even Canada. ( No offense intended to any Canadians in the group.) On the other hand, Hannah, MaC is the wise one here. He will not ever steer you wrong. I am far too emotionally involved. Even though I speak highly of my hepatologist, he still can at times annoy me, because as we reviewed my labs, I asked him about low BUN and he denies any connection to liver disease. Yet all over the web if you google " low BUN " you will get repeatedly------over hydration, pregnant, and liver FAILURE. AUGGGGGGGGGGG! Mine is still a 3 and has been for a year and a half. Sent via BlackBerry from T-Mobile Re: Digest Number 1839 Sorry If I missed something in my last post. I didn't know that it was something urgent. Hannah, Bobby is right as well. It's important to be an advocate and remember the squeaky wheel gets the oil. I must of missed a post or two. I didn't catch the part about him being decompensated. Thanks Bobby for the fill in. MaC Bob Aragon yahoo.com> wrote: Hanna, if the doctor who saw your dad says it is that serious, than I understand why you are having breakdowns every day of crying. I would too. Heres what someone needs to do. When I went to my doctor in June 06 while Ardis was still alive, I saw how she was suffering of this terrible disease, and decided that I didn't want to die like her. I punted , went to my doctor , and confessed that I had hidden being a HEAVY drinker from her for 15 years. She did every test on me in the book. She declared me free from liver disease. She even got stern with me and told me that " NO, you need to let go of this idea " . The problem was that I was noticing certain changes in my body. One was profound breast enlargement. another was that my BUN (blood urea nitrogen level) was 3. Normal low is usually around 6. http://www.nlm. nih.gov/medlineplus/ency/article/003474.htm read down in that article to low values. (liver failure) She convinced me that I only had a bad gallbladder. I agreed to have it out. When I woke up, my surgeon was there. The first thing out of my mouth was " did you see my liver? " " what did it look like " ?. He patted me on my back and said, " I'm sorry, you have cirrhosis. Macronodular type. " But look on the bright side, at least you dont have portal hypertension. " Hanna, I had to diagnose my own liver disease. And I had to diagnose my own portal hypertension. I have gotten waaaaay off topic. What I did after that night was call the hepatology clinic every day to check for a cancellation. Otherwise I would have had to wait several months. Someone needs to get on the phone. This needs attention. In this game, one needs to play hardball, lean forward. The " medicals " will DROP you through the cracks if you #1. dont be your own advcate. In your dads case, he may need someone's help. #2 squeek, and if you need to squeek LOUDLY. and #3 learn all you can about how the liver works, you are going to be shocked at how many signs and symptoms you have already missed. I had terrible nose bleeds, and bleeding hemroids, and had no idea what soever that I could have bled to death. One nosebleed took over an hour to stop. I was at work, and we were having thanksgiving for our crew, and I just started bleeding, and I was trying to mop up the floor, and I had blood every where. It l;ooked like a murder had occured in there. My shirt was solid red from my chin to my belt. Get on the phone for your dad. You dont have to wait for anyone. He may need a referral,m but that doesnt take anytime at all. You take the first available, and then you call for cancellations. And if his condition gets worse, take him to the ER at a transplant hospital. Usually it is a university hospital. http://www.massgene ral.org/transplant/liver.asp?id=patients http://en.wikipedia .org/wiki/Beth_Israel_Deaconess_Medical_Center http://www.transpla ntliving.org/Community/members/membersDirectory.aspx?memberType=Transplant%20Cen\ ters%20by%20Organ & organ=DLI & state=ALL & region= & orderBy=i.ctr_cd Re: Digest Number 1839 Thank you for the information Bobby. I actually just spoke with my Dad tonight and he said he does not know what his MELD number is but he is going to find out. I will for sure let you know what it is when I do find it out. So, basically if you do have a higher number you have a better chance of having a transplant? We are actually still waiting for an appointment at the Lahey Clinic to even have him evaluated for the transplant. I guess what I do not undrestand is his doctor that he has right now told him that without a transplant he can't live a long life ....so he is in the process of trying to get my Dad into the Lahey Clinic to speak with the Liver Specialists up there to hopefully get him on the transplant list....BUT my problem with this is that why is taking so long to get him an appointment set up, it has been 5 weeks now.....I just want to say to him " this is my dad's life " ....I just don;t feel that we should be waiting for the appointment for such a long time...I know we will have to wait for the transplant for awhile but all I ask is that we have the appointment with the Specialists. .... Sorry to vent I just angry sometimes with these doctors... Thanks again. Hannah __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 I wil follow this lead. I have biopsy confirmed liver disease, but I do want to know how so many doctors on the web, and the govt. Web site all say " liver disease " when you look this up. I am really curious now. I see my PCP on Friday. Bobby. Sent via BlackBerry from T-Mobile Re: Digest Number 1839 Sorry If I missed something in my last post. I didn't know that it was something urgent. Hannah, Bobby is right as well. It's important to be an advocate and remember the squeaky wheel gets the oil. I must of missed a post or two. I didn't catch the part about him being decompensated. Thanks Bobby for the fill in. MaC Bob Aragon yahoo.com> wrote: Hanna, if the doctor who saw your dad says it is that serious, than I understand why you are having breakdowns every day of crying. I would too. Heres what someone needs to do. When I went to my doctor in June 06 while Ardis was still alive, I saw how she was suffering of this terrible disease, and decided that I didn't want to die like her. I punted , went to my doctor , and confessed that I had hidden being a HEAVY drinker from her for 15 years. She did every test on me in the book. She declared me free from liver disease. She even got stern with me and told me that " NO, you need to let go of this idea " . The problem was that I was noticing certain changes in my body. One was profound breast enlargement. another was that my BUN (blood urea nitrogen level) was 3. Normal low is usually around 6. http://www.nlm. <http://www.nlm.> nih.gov/medlineplus/ency/article/003474.htm read down in that article to low values. (liver failure) She convinced me that I only had a bad gallbladder. I agreed to have it out. When I woke up, my surgeon was there. The first thing out of my mouth was " did you see my liver? " " what did it look like " ?. He patted me on my back and said, " I'm sorry, you have cirrhosis. Macronodular type. " But look on the bright side, at least you dont have portal hypertension. " Hanna, I had to diagnose my own liver disease. And I had to diagnose my own portal hypertension. I have gotten waaaaay off topic. What I did after that night was call the hepatology clinic every day to check for a cancellation. Otherwise I would have had to wait several months. Someone needs to get on the phone. This needs attention. In this game, one needs to play hardball, lean forward. The " medicals " will DROP you through the cracks if you #1. dont be your own advcate. In your dads case, he may need someone's help. #2 squeek, and if you need to squeek LOUDLY. and #3 learn all you can about how the liver works, you are going to be shocked at how many signs and symptoms you have already missed. I had terrible nose bleeds, and bleeding hemroids, and had no idea what soever that I could have bled to death. One nosebleed took over an hour to stop. I was at work, and we were having thanksgiving for our crew, and I just started bleeding, and I was trying to mop up the floor, and I had blood every where. It l;ooked like a murder had occured in there. My shirt was solid red from my chin to my belt. Get on the phone for your dad. You dont have to wait for anyone. He may need a referral,m but that doesnt take anytime at all. You take the first available, and then you call for cancellations. And if his condition gets worse, take him to the ER at a transplant hospital. Usually it is a university hospital. http://www.massgene <http://www.massgene> ral.org/transplant/liver.asp?id=patients http://en.wikipedia <http://en.wikipedia> ..org/wiki/Beth_Israel_Deaconess_Medical_Center http://www.transpla <http://www.transpla> ntliving.org/Community/members/membersDirectory.aspx?memberType=Transplant%20Cen\ ters%20by%20Organ & organ=DLI & state=ALL & region= & orderBy=i.ctr_cd Re: Digest Number 1839 Thank you for the information Bobby. I actually just spoke with my Dad tonight and he said he does not know what his MELD number is but he is going to find out. I will for sure let you know what it is when I do find it out. So, basically if you do have a higher number you have a better chance of having a transplant? We are actually still waiting for an appointment at the Lahey Clinic to even have him evaluated for the transplant. I guess what I do not undrestand is his doctor that he has right now told him that without a transplant he can't live a long life ....so he is in the process of trying to get my Dad into the Lahey Clinic to speak with the Liver Specialists up there to hopefully get him on the transplant list....BUT my problem with this is that why is taking so long to get him an appointment set up, it has been 5 weeks now.....I just want to say to him " this is my dad's life " ....I just don;t feel that we should be waiting for the appointment for such a long time...I know we will have to wait for the transplant for awhile but all I ask is that we have the appointment with the Specialists. .... Sorry to vent I just angry sometimes with these doctors... Thanks again. Hannah __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 I hear ya, I think 5 weeks is ridiculous...i am getting on the phone today! robwalkingeagle@... wrote: I don't mean top sound panicky, but 5 weeks to SET UP an appointment? This aint even Canada. ( No offense intended to any Canadians in the group.) On the other hand, Hannah, MaC is the wise one here. He will not ever steer you wrong. I am far too emotionally involved. Even though I speak highly of my hepatologist, he still can at times annoy me, because as we reviewed my labs, I asked him about low BUN and he denies any connection to liver disease. Yet all over the web if you google " low BUN " you will get repeatedly------over hydration, pregnant, and liver FAILURE. AUGGGGGGGGGGG! Mine is still a 3 and has been for a year and a half. Sent via BlackBerry from T-Mobile Re: Digest Number 1839 Sorry If I missed something in my last post. I didn't know that it was something urgent. Hannah, Bobby is right as well. It's important to be an advocate and remember the squeaky wheel gets the oil. I must of missed a post or two. I didn't catch the part about him being decompensated. Thanks Bobby for the fill in. MaC Bob Aragon yahoo.com> wrote: Hanna, if the doctor who saw your dad says it is that serious, than I understand why you are having breakdowns every day of crying. I would too. Heres what someone needs to do. When I went to my doctor in June 06 while Ardis was still alive, I saw how she was suffering of this terrible disease, and decided that I didn't want to die like her. I punted , went to my doctor , and confessed that I had hidden being a HEAVY drinker from her for 15 years. She did every test on me in the book. She declared me free from liver disease. She even got stern with me and told me that " NO, you need to let go of this idea " . The problem was that I was noticing certain changes in my body. One was profound breast enlargement. another was that my BUN (blood urea nitrogen level) was 3. Normal low is usually around 6. http://www.nlm. nih.gov/medlineplus/ency/article/003474.htm read down in that article to low values. (liver failure) She convinced me that I only had a bad gallbladder. I agreed to have it out. When I woke up, my surgeon was there. The first thing out of my mouth was " did you see my liver? " " what did it look like " ?. He patted me on my back and said, " I'm sorry, you have cirrhosis. Macronodular type. " But look on the bright side, at least you dont have portal hypertension. " Hanna, I had to diagnose my own liver disease. And I had to diagnose my own portal hypertension. I have gotten waaaaay off topic. What I did after that night was call the hepatology clinic every day to check for a cancellation. Otherwise I would have had to wait several months. Someone needs to get on the phone. This needs attention. In this game, one needs to play hardball, lean forward. The " medicals " will DROP you through the cracks if you #1. dont be your own advcate. In your dads case, he may need someone's help. #2 squeek, and if you need to squeek LOUDLY. and #3 learn all you can about how the liver works, you are going to be shocked at how many signs and symptoms you have already missed. I had terrible nose bleeds, and bleeding hemroids, and had no idea what soever that I could have bled to death. One nosebleed took over an hour to stop. I was at work, and we were having thanksgiving for our crew, and I just started bleeding, and I was trying to mop up the floor, and I had blood every where. It l;ooked like a murder had occured in there. My shirt was solid red from my chin to my belt. Get on the phone for your dad. You dont have to wait for anyone. He may need a referral,m but that doesnt take anytime at all. You take the first available, and then you call for cancellations. And if his condition gets worse, take him to the ER at a transplant hospital. Usually it is a university hospital. http://www.massgene ral.org/transplant/liver.asp?id=patients http://en.wikipedia .org/wiki/Beth_Israel_Deaconess_Medical_Center http://www.transpla ntliving.org/Community/members/membersDirectory.aspx?memberType=Transplant%20Cen\ ters%20by%20Organ & organ=DLI & state=ALL®ion= & orderBy=i.ctr_cd Re: Digest Number 1839 Thank you for the information Bobby. I actually just spoke with my Dad tonight and he said he does not know what his MELD number is but he is going to find out. I will for sure let you know what it is when I do find it out. So, basically if you do have a higher number you have a better chance of having a transplant? We are actually still waiting for an appointment at the Lahey Clinic to even have him evaluated for the transplant. I guess what I do not undrestand is his doctor that he has right now told him that without a transplant he can't live a long life ....so he is in the process of trying to get my Dad into the Lahey Clinic to speak with the Liver Specialists up there to hopefully get him on the transplant list....BUT my problem with this is that why is taking so long to get him an appointment set up, it has been 5 weeks now.....I just want to say to him " this is my dad's life " ....I just don;t feel that we should be waiting for the appointment for such a long time...I know we will have to wait for the transplant for awhile but all I ask is that we have the appointment with the Specialists. .... Sorry to vent I just angry sometimes with these doctors... Thanks again. Hannah __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 You go girlfriend!!! Pamela Re: Digest Number 1839 Thank you for the information Bobby. I actually just spoke with my Dad tonight and he said he does not know what his MELD number is but he is going to find out. I will for sure let you know what it is when I do find it out. So, basically if you do have a higher number you have a better chance of having a transplant? We are actually still waiting for an appointment at the Lahey Clinic to even have him evaluated for the transplant. I guess what I do not undrestand is his doctor that he has right now told him that without a transplant he can't live a long life ....so he is in the process of trying to get my Dad into the Lahey Clinic to speak with the Liver Specialists up there to hopefully get him on the transplant list....BUT my problem with this is that why is taking so long to get him an appointment set up, it has been 5 weeks now.....I just want to say to him " this is my dad's life " ....I just don;t feel that we should be waiting for the appointment for such a long time...I know we will have to wait for the transplant for awhile but all I ask is that we have the appointment with the Specialists. .... Sorry to vent I just angry sometimes with these doctors... Thanks again. Hannah __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 You are completely right...what could possibly happen if I speak up! Thanks! MaC wrote: Thanks, but sometimes I do become over optimistic. Which is my nature. 5 weeks may be overly long. The only reason I can find that it would take so long is that a doctor puts the request in as a non urgent case or like in Jan's situation the hired help jacks up the appointments. But it would help to call everyday. Persistence pays off. Again, the one thing I've learned in the military and government, is that the squeaky wheel gets the oil. Never be afraid to squeak! What is the least that can happen? No change? No Difference? Nothing? Or, the opposite can happen. Change!, Difference! Or at the very least a reaction to your voice and concerns!!!! So squeak and squeak often! MaC robwalkingeagle@... wrote: I don't mean top sound panicky, but 5 weeks to SET UP an appointment? This aint even Canada. ( No offense intended to any Canadians in the group.) On the other hand, Hannah, MaC is the wise one here. He will not ever steer you wrong. I am far too emotionally involved. Even though I speak highly of my hepatologist, he still can at times annoy me, because as we reviewed my labs, I asked him about low BUN and he denies any connection to liver disease. Yet all over the web if you google " low BUN " you will get repeatedly------over hydration, pregnant, and liver FAILURE. AUGGGGGGGGGGG! Mine is still a 3 and has been for a year and a half. Sent via BlackBerry from T-Mobile Re: Digest Number 1839 Sorry If I missed something in my last post. I didn't know that it was something urgent. Hannah, Bobby is right as well. It's important to be an advocate and remember the squeaky wheel gets the oil. I must of missed a post or two. I didn't catch the part about him being decompensated. Thanks Bobby for the fill in. MaC Bob Aragon yahoo.com> wrote: Hanna, if the doctor who saw your dad says it is that serious, than I understand why you are having breakdowns every day of crying. I would too. Heres what someone needs to do. When I went to my doctor in June 06 while Ardis was still alive, I saw how she was suffering of this terrible disease, and decided that I didn't want to die like her. I punted , went to my doctor , and confessed that I had hidden being a HEAVY drinker from her for 15 years. She did every test on me in the book. She declared me free from liver disease. She even got stern with me and told me that " NO, you need to let go of this idea " . The problem was that I was noticing certain changes in my body. One was profound breast enlargement. another was that my BUN (blood urea nitrogen level) was 3. Normal low is usually around 6. http://www.nlm. nih.gov/medlineplus/ency/article/003474.htm read down in that article to low values. (liver failure) She convinced me that I only had a bad gallbladder. I agreed to have it out. When I woke up, my surgeon was there. The first thing out of my mouth was " did you see my liver? " " what did it look like " ?. He patted me on my back and said, " I'm sorry, you have cirrhosis. Macronodular type. " But look on the bright side, at least you dont have portal hypertension. " Hanna, I had to diagnose my own liver disease. And I had to diagnose my own portal hypertension. I have gotten waaaaay off topic. What I did after that night was call the hepatology clinic every day to check for a cancellation. Otherwise I would have had to wait several months. Someone needs to get on the phone. This needs attention. In this game, one needs to play hardball, lean forward. The " medicals " will DROP you through the cracks if you #1. dont be your own advcate. In your dads case, he may need someone's help. #2 squeek, and if you need to squeek LOUDLY. and #3 learn all you can about how the liver works, you are going to be shocked at how many signs and symptoms you have already missed. I had terrible nose bleeds, and bleeding hemroids, and had no idea what soever that I could have bled to death. One nosebleed took over an hour to stop. I was at work, and we were having thanksgiving for our crew, and I just started bleeding, and I was trying to mop up the floor, and I had blood every where. It l;ooked like a murder had occured in there. My shirt was solid red from my chin to my belt. Get on the phone for your dad. You dont have to wait for anyone. He may need a referral,m but that doesnt take anytime at all. You take the first available, and then you call for cancellations. And if his condition gets worse, take him to the ER at a transplant hospital. Usually it is a university hospital. http://www.massgene ral.org/transplant/liver.asp?id=patients http://en.wikipedia .org/wiki/Beth_Israel_Deaconess_Medical_Center http://www.transpla ntliving.org/Community/members/membersDirectory.aspx?memberType=Transplant%20Cen\ ters%20by%20Organ & organ=DLI & state=ALL & region= & orderBy=i.ctr_cd Re: Digest Number 1839 Thank you for the information Bobby. I actually just spoke with my Dad tonight and he said he does not know what his MELD number is but he is going to find out. I will for sure let you know what it is when I do find it out. So, basically if you do have a higher number you have a better chance of having a transplant? We are actually still waiting for an appointment at the Lahey Clinic to even have him evaluated for the transplant. I guess what I do not undrestand is his doctor that he has right now told him that without a transplant he can't live a long life ....so he is in the process of trying to get my Dad into the Lahey Clinic to speak with the Liver Specialists up there to hopefully get him on the transplant list....BUT my problem with this is that why is taking so long to get him an appointment set up, it has been 5 weeks now.....I just want to say to him " this is my dad's life " ....I just don;t feel that we should be waiting for the appointment for such a long time...I know we will have to wait for the transplant for awhile but all I ask is that we have the appointment with the Specialists. .... Sorry to vent I just angry sometimes with these doctors... Thanks again. Hannah __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Oh gosh I am sorry....but I do believe everything happens for a reason....you are in my prayers tonight! Jan Holman wrote: Hanna - I had to call the manager of a whole series of medical clinics run by our closest hospital yesterday to get a referral sent to the dr I had to see today. They had goofed on it for 10 days, never called me, I had to find out myself three times that they hadn't sent it. Finally yesterday morning the one responsible to do it said she would do it about 3 or 4 yesterday afternoon. That wasn't acceptable. If my heart surgeons office didn't have it, I would have to drive up 35 miles to get it myself and bring it with me for my appt today. So, I called to ask for the patient rep, guess they don't have one, my call went to the manager of the whole system. She called back in a few minutes, said it would be done at noon when there were no patients in the office. Now, I had made numerous calls to that office, my call yesterday morning she had all the info in her hands while I was talking to her. Her manager called her and told her to do it. How much faster it would have been if she had just done her job after the first phone call. I hesitated to call the manager when a nurse friend told to do it because I have to go into that doctor's office for my primary care and she will be there everytime I do that. But, I am not going to feel the least uncomfortable about it, the fault was not mine. On top of that, the manager tried to blame another doctor for the problem. I didn't let her get by with that. It is really hard to stand up for yourself or a loved one when it comes to things like this, but I think most people here have learned the hard way that you have to do it. Now for the really " good " news, read that very bad, I am not having my triple bypass on Thursday because when they did the pre surgery work up on me today, they found I have a UTI and they can't operate on one someone who has an infection. So, it is put off for 7 days at least. grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr Jan H On Tue, Apr 8, 2008 at 9:15 PM, Bob Aragon wrote: > Hanna, if the doctor who saw your dad says it is that serious, than I > understand why you are having breakdowns every day of crying. I would too. > Heres what someone needs to do. When I went to my doctor in June 06 while > Ardis was still alive, I saw how she was suffering of this terrible disease, > and decided that I didn't want to die like her. I punted , went to my doctor > , and confessed that I had hidden being a HEAVY drinker from her for 15 > years. She did every test on me in the book. She declared me free from liver > disease. She even got stern with me and told me that " NO, you need to let go > of this idea " . The problem was that I was noticing certain changes in my > body. One was profound breast enlargement. another was that my BUN (blood > urea nitrogen level) was 3. Normal low is usually around 6. > http://www.nlm.nih.gov/medlineplus/ency/article/003474.htm > read down in that article to low values. (liver failure) > She convinced me that I only had a bad gallbladder. I agreed to have it > out. When I woke up, my surgeon was there. The first thing out of my mouth > was " did you see my liver? " " what did it look like " ?. He patted me on my back > and said, " I'm sorry, you have cirrhosis. Macronodular type. " But look on > the bright side, at least you dont have portal hypertension. " Hanna, I had > to diagnose my own liver disease. And I had to diagnose my own portal > hypertension. I have gotten waaaaay off topic. What I did after that night > was call the hepatology clinic every day to check for a cancellation. > Otherwise I would have had to wait several months. Someone needs to get on > the phone. This needs attention. In this game, one needs to play hardball, > lean forward. The " medicals " will DROP you through the cracks if you #1. > dont be your own advcate. In your dads case, he may need someone's help. #2 > squeek, and if you need to squeek LOUDLY. and #3 learn all you can about how > the > liver works, you are going to be shocked at how many signs and symptoms > you have already missed. I had terrible nose bleeds, and bleeding hemroids, > and had no idea what soever that I could have bled to death. One nosebleed > took over an hour to stop. I was at work, and we were having thanksgiving > for our crew, and I just started bleeding, and I was trying to mop up the > floor, and I had blood every where. It l;ooked like a murder had occured in > there. My shirt was solid red from my chin to my belt. Get on the phone for > your dad. You dont have to wait for anyone. He may need a referral,m but > that doesnt take anytime at all. You take the first available, and then you > call for cancellations. And if his condition gets worse, take him to the ER > at a transplant hospital. Usually it is a university hospital. > http://www.massgeneral.org/transplant/liver.asp?id=patients > http://en.wikipedia.org/wiki/Beth_Israel_Deaconess_Medical_Center > > http://www.transplantliving.org/Community/members/membersDirectory.aspx?memberTy\ pe=Transplant%20Centers%20by%20Organ & organ=DLI & state=ALL & region= & orderBy=i.ctr_c\ d > Re: [Liver Cirrhosis > Support] Digest Number 1839 > > Hannah: I know that people do refer to a biopsy as the " gold standard, " > but they arenot always done. I lost my mom to non-alcoholic cirrhosis last > September,and she never had one. She had a really low platelet count, and > they wereconcerned about her bleeding following the biopsy. I know they did > a CATscan and ultrasound, and they might have done an MRI as well. She also > hadesophageal varices, and swelling in her legs. They didn't think that > thebiopsy was worth the risk to absolutely positively diagnose cirrhosis. > Theycould see the nodules on the other tests. And yes, she was followed by > alocal hepatologist, and she was seeing the head of the transplant program > ata university hospital. It really wasn't a question of not having > enoughspecialists around, it was just a calculated risk to not have the > biopsy. Cirrhosis is such a strange disease, at least I found it to be. > Severaldays before my mom died, her liver values were still " normal. " > ************ > ********* ********* * Thank > you so much for getting back to me, it means a lot to me. I checkedout > your blog, amazing, I could not find where to leave a comment though =( > Thank you so much for all of the information. I did have one question > thoughthat they have not perfprmed a liver biopsy yet on my Father and I not > surewhy? Should they have done this already? They said they will be > performingthis at the Lahey Clinic in Boston. Also when you say that my > Father has decompensated " liver disease, does this mean that anything could > happen tohim before the liver transplant is performed? He is taking many > medicationsand also eating right and not drinking alcohol at all. Thank you > so much for all of your help and I am so glad that I can be a partof this > group. You will also be in my prayers. Thank you. Hannah[Non-text portions > of this message have been removed] > > ____________ _________ _________ _________ _________ _________ _ > You dream job is up for grabs. Grab it. > http://mycareer. com.au/?s_cid= 596065 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 I thank everybody for their prayers. It feels so good to know so many people are praying for me. The doctor was explaining to me all the risks associated with the surgery. They do call it open heart surgery, even though they don't actually open the heart to do it. But I will be put on a heart/ lung machine/pump. I hadn't realized that, thought maybe the heart, maybe not because some places do do beating heart bypass now. He also explained all the risks I don't even remember, some of which are associated with any major surgery, some specific to the bypass. Such as starting the heart beating again. I listened to him talking about it and felt completely calm, told him I understood there were risks, but that I had a strong faith and was not afraid. He called this morning to explain the delay and what he wants me to do now. I have to see my pcp on Friday, meaning I had to call the office today that I reported for incompetency on Monday to make an appointment. And because my doctor isn't in that office on Fridays, I had to get an appointment for the other clinic where she will be, which is actually a little closer than the one I go to. The person who answers the phone and who told me she couldn't get to my referral until 3 or 4 on Monday answered today, complied with my needs. Then someone else called to say that they needed to fax an order telling what needs to be done so I had to call back and get that number. Now I will see at least one of them on Friday at 9 when I go to get checked to see if the uti has gotten better/disappeared. Sometimes it seems like an upset world when I am concerned about making the phone calls to someone I have had a dispute with, seeing her when I have my dr. appt than I am about having open heart/bypass surgery. I guess I just need to trust God in the little things as well as the big things. Again, everybody thanks for your prayers and concern. I know this isn't a heart group. I used to belong to one, but it was so argumentative that I dropped it. This group is so great, so accepting of different people and different ideas. Jan H > Oh gosh I am sorry....but I do believe everything happens for a > reason....you are in my prayers tonight! > > Jan Holman <janholman@... <janholman%40gmail.com>> wrote: Hanna - I > had to call the manager of a whole series of medical clinics run > > by our closest hospital yesterday to get a referral sent to the dr I had > to > see today. They had goofed on it for 10 days, never called me, I had to > find out myself three times that they hadn't sent it. Finally yesterday > morning the one responsible to do it said she would do it about 3 or 4 > yesterday afternoon. That wasn't acceptable. If my heart surgeons office > didn't have it, I would have to drive up 35 miles to get it myself and > bring > it with me for my appt today. So, I called to ask for the patient rep, > guess they don't have one, my call went to the manager of the whole > system. > She called back in a few minutes, said it would be done at noon when there > were no patients in the office. Now, I had made numerous calls to that > office, my call yesterday morning she had all the info in her hands while > I > was talking to her. Her manager called her and told her to do it. How much > faster it would have been if she had just done her job after the first > phone > call. I hesitated to call the manager when a nurse friend told to do it > because I have to go into that doctor's office for my primary care and she > will be there everytime I do that. But, I am not going to feel the least > uncomfortable about it, the fault was not mine. On top of that, the > manager > tried to blame another doctor for the problem. I didn't let her get by > with > that. It is really hard to stand up for yourself or a loved one when it > comes to things like this, but I think most people here have learned the > hard way that you have to do it. > > Now for the really " good " news, read that very bad, I am not having my > triple bypass on Thursday because when they did the pre surgery work up on > me today, they found I have a UTI and they can't operate on one someone > who > has an infection. So, it is put off for 7 days at least. > grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr Jan H > > On Tue, Apr 8, 2008 at 9:15 PM, Bob Aragon <robwalkingeagle@...<robwalkingeagle%40yahoo.com> > > > wrote: > > > Hanna, if the doctor who saw your dad says it is that serious, than I > > understand why you are having breakdowns every day of crying. I would > too. > > Heres what someone needs to do. When I went to my doctor in June 06 > while > > Ardis was still alive, I saw how she was suffering of this terrible > disease, > > and decided that I didn't want to die like her. I punted , went to my > doctor > > , and confessed that I had hidden being a HEAVY drinker from her for 15 > > years. She did every test on me in the book. She declared me free from > liver > > disease. She even got stern with me and told me that " NO, you need to > let go > > of this idea " . The problem was that I was noticing certain changes in > my > > body. One was profound breast enlargement. another was that my BUN > (blood > > urea nitrogen level) was 3. Normal low is usually around 6. > > http://www.nlm.nih.gov/medlineplus/ency/article/003474.htm > > read down in that article to low values. (liver failure) > > She convinced me that I only had a bad gallbladder. I agreed to have it > > out. When I woke up, my surgeon was there. The first thing out of my > mouth > > was " did you see my liver? " " what did it look like " ?. He patted me on my > back > > and said, " I'm sorry, you have cirrhosis. Macronodular type. " But look > on > > the bright side, at least you dont have portal hypertension. " Hanna, I > had > > to diagnose my own liver disease. And I had to diagnose my own portal > > hypertension. I have gotten waaaaay off topic. What I did after that > night > > was call the hepatology clinic every day to check for a cancellation. > > Otherwise I would have had to wait several months. Someone needs to get > on > > the phone. This needs attention. In this game, one needs to play > hardball, > > lean forward. The " medicals " will DROP you through the cracks if you #1. > > dont be your own advcate. In your dads case, he may need someone's help. > #2 > > squeek, and if you need to squeek LOUDLY. and #3 learn all you can about > how > > the > > liver works, you are going to be shocked at how many signs and symptoms > > you have already missed. I had terrible nose bleeds, and bleeding > hemroids, > > and had no idea what soever that I could have bled to death. One > nosebleed > > took over an hour to stop. I was at work, and we were having > thanksgiving > > for our crew, and I just started bleeding, and I was trying to mop up > the > > floor, and I had blood every where. It l;ooked like a murder had occured > in > > there. My shirt was solid red from my chin to my belt. Get on the phone > for > > your dad. You dont have to wait for anyone. He may need a referral,m but > > that doesnt take anytime at all. You take the first available, and then > you > > call for cancellations. And if his condition gets worse, take him to the > ER > > at a transplant hospital. Usually it is a university hospital. > > http://www.massgeneral.org/transplant/liver.asp?id=patients > > http://en.wikipedia.org/wiki/Beth_Israel_Deaconess_Medical_Center > > > > > http://www.transplantliving.org/Community/members/membersDirectory.aspx?memberTy\ pe=Transplant%20Centers%20by%20Organ & organ=DLI & state=ALL & region= & orderBy=i.ctr_c\ d > > Re: [Liver Cirrhosis > > Support] Digest Number 1839 > > > > Hannah: I know that people do refer to a biopsy as the " gold standard, " > > but they arenot always done. I lost my mom to non-alcoholic cirrhosis > last > > September,and she never had one. She had a really low platelet count, > and > > they wereconcerned about her bleeding following the biopsy. I know they > did > > a CATscan and ultrasound, and they might have done an MRI as well. She > also > > hadesophageal varices, and swelling in her legs. They didn't think that > > thebiopsy was worth the risk to absolutely positively diagnose > cirrhosis. > > Theycould see the nodules on the other tests. And yes, she was followed > by > > alocal hepatologist, and she was seeing the head of the transplant > program > > ata university hospital. It really wasn't a question of not having > > enoughspecialists around, it was just a calculated risk to not have the > > biopsy. Cirrhosis is such a strange disease, at least I found it to be. > > Severaldays before my mom died, her liver values were still " normal. " > > ************ > > ********* ********* * Thank > > you so much for getting back to me, it means a lot to me. I checkedout > > your blog, amazing, I could not find where to leave a comment though =( > > Thank you so much for all of the information. I did have one question > > thoughthat they have not perfprmed a liver biopsy yet on my Father and I > not > > surewhy? Should they have done this already? They said they will be > > performingthis at the Lahey Clinic in Boston. Also when you say that my > > Father has decompensated " liver disease, does this mean that anything > could > > happen tohim before the liver transplant is performed? He is taking many > > medicationsand also eating right and not drinking alcohol at all. Thank > you > > so much for all of your help and I am so glad that I can be a partof > this > > group. You will also be in my prayers. Thank you. Hannah[Non-text > portions > > of this message have been removed] > > > > ____________ _________ _________ _________ _________ _________ _ > > You dream job is up for grabs. Grab it. > > http://mycareer. com.au/?s_cid= 596065 > > > > Quote Link to comment Share on other sites More sharing options...
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