Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Joan maybe now that the new year has started and the holidays are over people will be on more.. I have notice there has been quite a drop in the number of emails I have been getting from my medical groups since Thanksgiving. Then it slows down again when people can get out and about again up north when Spring comes. I am arizonablackhat @ tds.net on aim and yahoo if you want to chat there. Jan > Hi everyone, I was really looking forward to the chat room for a lot of > reasons but I have been there many times since it opened and no one else is > ever there. It seems like Bobby went to a lot of hard work to create a safe > haven for us to talk and share and it is not being used. > I am confused (totally normal condition for me these days by the way). > Joan > > > > ------------------------------------ > > Group Email: livercirrhosissupport > web address: > http://groups.yahoo.com/group/livercirrhosissupport/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 How does one get to the chat room? And do you have specific times that people will meet there? > > > Hi everyone, I was really looking forward to the chat room for a lot of > > reasons but I have been there many times since it opened and no one else is > > ever there. It seems like Bobby went to a lot of hard work to create a safe > > haven for us to talk and share and it is not being used. > > I am confused (totally normal condition for me these days by the way). > > Joan > > > > > > > > ------------------------------------ > > > > Group Email: livercirrhosissupport > > web address: > > http://groups.yahoo.com/group/livercirrhosissupport/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Just go to this link, and choose a username, need not be then same every time. No password necessary. If you encounter any trouble, let me know. Bobby, moderator. http://livercirrhosissupport.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Mon, January 3, 2011 9:15:43 PM Subject: Re: new chat room How does one get to the chat room? And do you have specific times that people will meet there? > > > Hi everyone, I was really looking forward to the chat room for a lot of > > reasons but I have been there many times since it opened and no one else is > > ever there. It seems like Bobby went to a lot of hard work to create a safe > > haven for us to talk and share and it is not being used. > > I am confused (totally normal condition for me these days by the way). > > Joan > > > > > > > > ------------------------------------ > > > > Group Email: livercirrhosissupport > > web address: > > http://groups.yahoo.com/group/livercirrhosissupport/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Blood doc. wants me to start iron infusions next week.  Any of you ever had to do that? How bout you Bobby? Spleen quite enlarged from overworking. I know iron can be hard on the liver. But, at this point, I'm just wanting some relief from this 24 @ 7 fatigue central.   Dave ________________________________ To: livercirrhosissupport Sent: Tue, January 4, 2011 6:29:02 PM Subject: Re: new chat room  Just go to this link, and choose a username, need not be then same every time. No password necessary. If you encounter any trouble, let me know. Bobby, moderator. http://livercirrhosissupport.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Mon, January 3, 2011 9:15:43 PM Subject: Re: new chat room How does one get to the chat room? And do you have specific times that people will meet there? > > > Hi everyone, I was really looking forward to the chat room for a lot of > > reasons but I have been there many times since it opened and no one else is > > ever there. It seems like Bobby went to a lot of hard work to create a safe > > haven for us to talk and share and it is not being used. > > I am confused (totally normal condition for me these days by the way). > > Joan > > > > > > > > ------------------------------------ > > > > Group Email: livercirrhosissupport > > web address: > > http://groups.yahoo.com/group/livercirrhosissupport/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Dave, I have never heard of this. I know that too much Iron is bad, but if you dont have balance in your blood work because your spleen is destroying too many red blood cells, Iron might make perfect sense. He is a hepatologist, right? Bobby ________________________________ To: livercirrhosissupport Sent: Wed, January 5, 2011 7:31:17 PM Subject: Re: new chat room Blood doc. wants me to start iron infusions next week. Any of you ever had to do that? How bout you Bobby? Spleen quite enlarged from overworking. I know iron can be hard on the liver. But, at this point, I'm just wanting some relief from this 24 @ 7 fatigue central. Dave ________________________________ To: livercirrhosissupport Sent: Tue, January 4, 2011 6:29:02 PM Subject: Re: new chat room Just go to this link, and choose a username, need not be then same every time. No password necessary. If you encounter any trouble, let me know. Bobby, moderator. http://livercirrhosissupport.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Mon, January 3, 2011 9:15:43 PM Subject: Re: new chat room How does one get to the chat room? And do you have specific times that people will meet there? > > > Hi everyone, I was really looking forward to the chat room for a lot of > > reasons but I have been there many times since it opened and no one else is > > ever there. It seems like Bobby went to a lot of hard work to create a safe > > haven for us to talk and share and it is not being used. > > I am confused (totally normal condition for me these days by the way). > > Joan > > > > > > > > ------------------------------------ > > > > Group Email: livercirrhosissupport > > web address: > > http://groups.yahoo.com/group/livercirrhosissupport/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Dave , I am severely anemic, taking epo or procrit shots trying to get my hemoglobin and hematocrit up to a decent level. I too am always tired, Just getting dressed wears me out, to say nothing about actually going anywhere afterwards. Some things I do the adrenalne starts flowing, like playing for church and being with friends, but then the rest of that day and the next I just crash. I have been taking the shots for over 6 months and they haven't been doing much. They are checking my iron again which has been fine for the almost 3 years since I was found to be anemic. I was told that if these shots don't fix it the next step is blood transfusions. I am wondering if that is the same thing your doctor is talking about. It is so hard to go from one doctor to another and discuss the same things because they use different terminology for things, just like when you go online and look up a disease or symptom and they give it a name and then give one or two other names it is also called. I have esld, almost to dialysis level with kidney function and have 9 stents in my body, 7 in my heart, had carotid artery surgery, a triple bypass to hit the high points. I just found out yesterday that my anemia could be causing my irregular strong heart beats. And too much thyroid meds do too. The kidney problem alone could account for the anemia. Who knows when there are so many different things to consider. As was said before, you can only trust your doctor and follow his orders after talking to him about it. I have had to have angiograms and angioplasties after it was discovered that my kidneys were failing, but if they didn't clean out those arteries, I would have a heart attack sooner or later. So, taking a risk for the kidneys with the dye is something that had to be done. However if you don't like/trust your doctor get a second opinioin. Jan On Thu, Jan 6, 2011 at 1:11 AM, Bob Aragon wrote: > Dave, I have never heard of this. I know that too much Iron is bad, but if > you > dont have balance in your blood work because your spleen is destroying too > many > red blood cells, Iron might make perfect sense. He is a hepatologist, > right? > Bobby > > > > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Wed, January 5, 2011 7:31:17 PM > Subject: Re: new chat room > > > Blood doc. wants me to start iron infusions next week. Any of you ever had > to > do that? How bout you Bobby? Spleen quite enlarged from overworking. I > know > iron can be hard on the liver. But, at this point, I'm just wanting some > relief > > from this 24 @ 7 fatigue central. > Dave > > ________________________________ > > To: livercirrhosissupport > Sent: Tue, January 4, 2011 6:29:02 PM > Subject: Re: new chat room > > > Just go to this link, and choose a username, need not be then same every > time. > No password necessary. If you encounter any trouble, let me know. Bobby, > moderator. > > http://livercirrhosissupport.blogspot.com/ > > ________________________________ > > To: livercirrhosissupport > Sent: Mon, January 3, 2011 9:15:43 PM > Subject: Re: new chat room > > How does one get to the chat room? And do you have specific times that > people > will meet there? > > > > > > > Hi everyone, I was really looking forward to the chat room for a lot of > > > reasons but I have been there many times since it opened and no one > else is > > > ever there. It seems like Bobby went to a lot of hard work to create a > safe > > > haven for us to talk and share and it is not being used. > > > I am confused (totally normal condition for me these days by the way). > > > Joan > > > > > > > > > > > > ------------------------------------ > > > > > > Group Email: livercirrhosissupport > > > web address: > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 I have too much iron in the liver and that is what gave me cirrhosis. Lyncia ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 2:11:11 AM Subject: Re: new chat room  Dave, I have never heard of this. I know that too much Iron is bad, but if you dont have balance in your blood work because your spleen is destroying too many red blood cells, Iron might make perfect sense. He is a hepatologist, right? Bobby ________________________________ To: livercirrhosissupport Sent: Wed, January 5, 2011 7:31:17 PM Subject: Re: new chat room Blood doc. wants me to start iron infusions next week. Any of you ever had to do that? How bout you Bobby? Spleen quite enlarged from overworking. I know iron can be hard on the liver. But, at this point, I'm just wanting some relief from this 24 @ 7 fatigue central. Dave ________________________________ To: livercirrhosissupport Sent: Tue, January 4, 2011 6:29:02 PM Subject: Re: new chat room Just go to this link, and choose a username, need not be then same every time. No password necessary. If you encounter any trouble, let me know. Bobby, moderator. http://livercirrhosissupport.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Mon, January 3, 2011 9:15:43 PM Subject: Re: new chat room How does one get to the chat room? And do you have specific times that people will meet there? > > > Hi everyone, I was really looking forward to the chat room for a lot of > > reasons but I have been there many times since it opened and no one else is > > ever there. It seems like Bobby went to a lot of hard work to create a safe > > haven for us to talk and share and it is not being used. > > I am confused (totally normal condition for me these days by the way). > > Joan > > > > > > > > ------------------------------------ > > > > Group Email: livercirrhosissupport > > web address: > > http://groups.yahoo.com/group/livercirrhosissupport/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 This doc. is a hematologist, oncologist.  Dave ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 2:11:11 AM Subject: Re: new chat room  Dave, I have never heard of this. I know that too much Iron is bad, but if you dont have balance in your blood work because your spleen is destroying too many red blood cells, Iron might make perfect sense. He is a hepatologist, right? Bobby ________________________________ To: livercirrhosissupport Sent: Wed, January 5, 2011 7:31:17 PM Subject: Re: new chat room Blood doc. wants me to start iron infusions next week. Any of you ever had to do that? How bout you Bobby? Spleen quite enlarged from overworking. I know iron can be hard on the liver. But, at this point, I'm just wanting some relief from this 24 @ 7 fatigue central. Dave ________________________________ To: livercirrhosissupport Sent: Tue, January 4, 2011 6:29:02 PM Subject: Re: new chat room Just go to this link, and choose a username, need not be then same every time. No password necessary. If you encounter any trouble, let me know. Bobby, moderator. http://livercirrhosissupport.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Mon, January 3, 2011 9:15:43 PM Subject: Re: new chat room How does one get to the chat room? And do you have specific times that people will meet there? > > > Hi everyone, I was really looking forward to the chat room for a lot of > > reasons but I have been there many times since it opened and no one else is > > ever there. It seems like Bobby went to a lot of hard work to create a safe > > haven for us to talk and share and it is not being used. > > I am confused (totally normal condition for me these days by the way). > > Joan > > > > > > > > ------------------------------------ > > > > Group Email: livercirrhosissupport > > web address: > > http://groups.yahoo.com/group/livercirrhosissupport/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 I moved 120 miles from where my hepatologist is and had to change primary care doc. The primary did blood work and referred me to this hematologist that had an ultrasound done on my spleen, liver, etc. And also a endoscope and colonoscopy, and a lot of blood work himself. He said because the iron is so low it is a chronic condition that has been going on for monthes or year and longer, not an acute condition. Said trying me on oral iron had several problems. One it would take a very long time to have an effect on me, also because of the condition of my stomach the absorption would not be very good, and iron pills can cause constipation. Infusion would last about an hour a day, once a week for six weeks or longer depending on the levels. I talked to him about iron being bad for the liver, and he said this is excess iron, and I have way low which is very bad on your body, and quality of life. He did talk about blood transfusion, but thinks iron infusion is what to do. I Called my hepatologist to see what he thinks. Always get the machine. Very busy place Washington U. Physicians. Thing that wondered me was that I had blood work there end of May. You would think they'd have picked up on the low red blood count then. I know I am way anemic by the way I feel, and the blood doc showed me where normal levels were and how low mine are on the testing. He showed the whole blood panel scores from top to bottom, and recommended this. Guess I will do it.  See what Hepatologist has to say, but am sure he will want to see blood work, maybe even want to do all the blood work I just did over again. More tests, more doc's. I'm sure you all know what an ordeal that can turn into.       Dave ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 2:39:26 AM Subject: Re: new chat room  Dave , I am severely anemic, taking epo or procrit shots trying to get my hemoglobin and hematocrit up to a decent level. I too am always tired, Just getting dressed wears me out, to say nothing about actually going anywhere afterwards. Some things I do the adrenalne starts flowing, like playing for church and being with friends, but then the rest of that day and the next I just crash. I have been taking the shots for over 6 months and they haven't been doing much. They are checking my iron again which has been fine for the almost 3 years since I was found to be anemic. I was told that if these shots don't fix it the next step is blood transfusions. I am wondering if that is the same thing your doctor is talking about. It is so hard to go from one doctor to another and discuss the same things because they use different terminology for things, just like when you go online and look up a disease or symptom and they give it a name and then give one or two other names it is also called. I have esld, almost to dialysis level with kidney function and have 9 stents in my body, 7 in my heart, had carotid artery surgery, a triple bypass to hit the high points. I just found out yesterday that my anemia could be causing my irregular strong heart beats. And too much thyroid meds do too. The kidney problem alone could account for the anemia. Who knows when there are so many different things to consider. As was said before, you can only trust your doctor and follow his orders after talking to him about it. I have had to have angiograms and angioplasties after it was discovered that my kidneys were failing, but if they didn't clean out those arteries, I would have a heart attack sooner or later. So, taking a risk for the kidneys with the dye is something that had to be done. However if you don't like/trust your doctor get a second opinioin. Jan On Thu, Jan 6, 2011 at 1:11 AM, Bob Aragon wrote: > Dave, I have never heard of this. I know that too much Iron is bad, but if > you > dont have balance in your blood work because your spleen is destroying too > many > red blood cells, Iron might make perfect sense. He is a hepatologist, > right? > Bobby > > > > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Wed, January 5, 2011 7:31:17 PM > Subject: Re: new chat room > > > Blood doc. wants me to start iron infusions next week. Any of you ever had > to > do that? How bout you Bobby? Spleen quite enlarged from overworking. I > know > iron can be hard on the liver. But, at this point, I'm just wanting some > relief > > from this 24 @ 7 fatigue central. > Dave > > ________________________________ > > To: livercirrhosissupport > Sent: Tue, January 4, 2011 6:29:02 PM > Subject: Re: new chat room > > > Just go to this link, and choose a username, need not be then same every > time. > No password necessary. If you encounter any trouble, let me know. Bobby, > moderator. > > http://livercirrhosissupport.blogspot.com/ > > ________________________________ > > To: livercirrhosissupport > Sent: Mon, January 3, 2011 9:15:43 PM > Subject: Re: new chat room > > How does one get to the chat room? And do you have specific times that > people > will meet there? > > > > > > > Hi everyone, I was really looking forward to the chat room for a lot of > > > reasons but I have been there many times since it opened and no one > else is > > > ever there. It seems like Bobby went to a lot of hard work to create a > safe > > > haven for us to talk and share and it is not being used. > > > I am confused (totally normal condition for me these days by the way). > > > Joan > > > > > > > > > > > > ------------------------------------ > > > > > > Group Email: livercirrhosissupport > > > web address: > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Dave, sounds like you have the situation under control. Blood iron levels are not routinely done, so the first doctor might not have requested it. The first thing they did when my blood work started to show anemia was to give me two pints of blood when they coud't find a cause for it, then it showed up later and they prescribed b12 shots, one a day for a month, then one a week for a period of time, then one a month for a total of a year.As I understand it, the B12 helps the iron do what it is supposed to do and go where it is supposed to go. Then my blood iron was fine for quite a while. I have had two doctors recently request blood iron work done, but it was skipped on the report, or never analyzed. I have been on an amenia roller coaster most of my life, and as your doctor said iron pills do cause constipation. If they find out that my iron is low now, i will ask for a prescription for a stool softener which I will take for a few days before starting iron pills. That works for me. I am concerned that when I have to start dialysis that the problem could get even worse, not sure what the dialysis filter takes out of the system. Have been told it should take out the toxins my liver and kidneys are not taking out now, causing terrible itching. That will be great. But, does it strip other things out of your blood too? Jan > I moved 120 miles from where my hepatologist is and had to change primary > care > doc. The primary did blood work and referred me to this hematologist > that had > an ultrasound done on my spleen, liver, etc. And also a endoscope and > colonoscopy, and a lot of blood work himself. He said because the iron is > so > low it is a chronic condition that has been going on for monthes or year > and > longer, not an acute condition. Said trying me on oral iron had several > problems. One it would take a very long time to have an effect on me, also > because of the condition of my stomach the absorption would not be very > good, > and iron pills can cause constipation. Infusion would last about an hour a > day, > once a week for six weeks or longer depending on the levels. I talked to > him > about iron being bad for the liver, and he said this is excess iron, and I > have > way low which is very bad on your body, and quality of life. He did talk > about > blood transfusion, but thinks iron infusion is what to do. I Called my > hepatologist to see what he thinks. Always get the machine. Very busy > place > Washington U. Physicians. Thing that wondered me was that I had blood work > there end of May. You would think they'd have picked up on the low red > blood > count then. I know I am way anemic by the way I feel, and the blood doc > showed > me where normal levels were and how low mine are on the testing. He showed > the > whole blood panel scores from top to bottom, and recommended this. Guess I > will > do it. See what Hepatologist has to say, but am sure he will want to see > blood > work, maybe even want to do all the blood work I just did over again. More > tests, more doc's. I'm sure you all know what an ordeal that can turn > into. > > Dave > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Thu, January 6, 2011 2:39:26 AM > Subject: Re: new chat room > > > Dave , I am severely anemic, taking epo or procrit shots trying to get my > hemoglobin and hematocrit up to a decent level. I too am always tired, > Just getting dressed wears me out, to say nothing about actually going > anywhere afterwards. Some things I do the adrenalne starts flowing, like > playing for church and being with friends, but then the rest of that day > and > the next I just crash. I have been taking the shots for over 6 months and > they haven't been doing much. They are checking my iron again which has > been fine for the almost 3 years since I was found to be anemic. I was told > that if these shots don't fix it the next step is blood transfusions. I am > wondering if that is the same thing your doctor is talking about. It is so > hard to go from one doctor to another and discuss the same things because > they use different terminology for things, just like when you go online and > look up a disease or symptom and they give it a name and then give one or > two other names it is also called. I have esld, almost to dialysis level > with kidney function and have 9 stents in my body, 7 in my heart, had > carotid artery surgery, a triple bypass to hit the high points. I just > found out yesterday that my anemia could be causing my irregular strong > heart beats. And too much thyroid meds do too. The kidney problem alone > could account for the anemia. Who knows when there are so many different > things to consider. As was said before, you can only trust your doctor and > follow his orders after talking to him about it. I have had to have > angiograms and angioplasties after it was discovered that my kidneys were > failing, but if they didn't clean out those arteries, I would have a heart > attack sooner or later. So, taking a risk for the kidneys with the dye is > something that had to be done. However if you don't like/trust your doctor > get a second opinioin. Jan > > On Thu, Jan 6, 2011 at 1:11 AM, Bob Aragon <robwalkingeagle@... > >wrote: > > > Dave, I have never heard of this. I know that too much Iron is bad, but > if > > you > > dont have balance in your blood work because your spleen is destroying > too > > many > > red blood cells, Iron might make perfect sense. He is a hepatologist, > > right? > > Bobby > > > > > > > > > > > > > > > > ________________________________ > > > > To: livercirrhosissupport > > Sent: Wed, January 5, 2011 7:31:17 PM > > Subject: Re: new chat room > > > > > > Blood doc. wants me to start iron infusions next week. Any of you ever > had > > to > > do that? How bout you Bobby? Spleen quite enlarged from overworking. I > > know > > iron can be hard on the liver. But, at this point, I'm just wanting some > > relief > > > > from this 24 @ 7 fatigue central. > > Dave > > > > ________________________________ > > > > To: livercirrhosissupport > > Sent: Tue, January 4, 2011 6:29:02 PM > > Subject: Re: new chat room > > > > > > Just go to this link, and choose a username, need not be then same every > > time. > > No password necessary. If you encounter any trouble, let me know. Bobby, > > moderator. > > > > http://livercirrhosissupport.blogspot.com/ > > > > ________________________________ > > > > To: livercirrhosissupport > > Sent: Mon, January 3, 2011 9:15:43 PM > > Subject: Re: new chat room > > > > How does one get to the chat room? And do you have specific times that > > people > > will meet there? > > > > > > > > > > > Hi everyone, I was really looking forward to the chat room for a lot > of > > > > reasons but I have been there many times since it opened and no one > > else is > > > > ever there. It seems like Bobby went to a lot of hard work to create > a > > safe > > > > haven for us to talk and share and it is not being used. > > > > I am confused (totally normal condition for me these days by the > way). > > > > Joan > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Holy crap, I see what you are saying. You need the iron. You arent getting enough oxygen to your tissues. Verry bad. I have a touch of this because of a shunt in my lungs from chemicals and excess nitric oxide, and it feels very bad, I cannot even imagine how bad you must feel. Get it done, and good luck Dave. Bobby ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 9:04:29 AM Subject: Re: new chat room I moved 120 miles from where my hepatologist is and had to change primary care doc. The primary did blood work and referred me to this hematologist that had an ultrasound done on my spleen, liver, etc. And also a endoscope and colonoscopy, and a lot of blood work himself. He said because the iron is so low it is a chronic condition that has been going on for monthes or year and longer, not an acute condition. Said trying me on oral iron had several problems. One it would take a very long time to have an effect on me, also because of the condition of my stomach the absorption would not be very good, and iron pills can cause constipation. Infusion would last about an hour a day, once a week for six weeks or longer depending on the levels. I talked to him about iron being bad for the liver, and he said this is excess iron, and I have way low which is very bad on your body, and quality of life. He did talk about blood transfusion, but thinks iron infusion is what to do. I Called my hepatologist to see what he thinks. Always get the machine. Very busy place Washington U. Physicians. Thing that wondered me was that I had blood work there end of May. You would think they'd have picked up on the low red blood count then. I know I am way anemic by the way I feel, and the blood doc showed me where normal levels were and how low mine are on the testing. He showed the whole blood panel scores from top to bottom, and recommended this. Guess I will do it. See what Hepatologist has to say, but am sure he will want to see blood work, maybe even want to do all the blood work I just did over again. More tests, more doc's. I'm sure you all know what an ordeal that can turn into. Dave ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 2:39:26 AM Subject: Re: new chat room Dave , I am severely anemic, taking epo or procrit shots trying to get my hemoglobin and hematocrit up to a decent level. I too am always tired, Just getting dressed wears me out, to say nothing about actually going anywhere afterwards. Some things I do the adrenalne starts flowing, like playing for church and being with friends, but then the rest of that day and the next I just crash. I have been taking the shots for over 6 months and they haven't been doing much. They are checking my iron again which has been fine for the almost 3 years since I was found to be anemic. I was told that if these shots don't fix it the next step is blood transfusions. I am wondering if that is the same thing your doctor is talking about. It is so hard to go from one doctor to another and discuss the same things because they use different terminology for things, just like when you go online and look up a disease or symptom and they give it a name and then give one or two other names it is also called. I have esld, almost to dialysis level with kidney function and have 9 stents in my body, 7 in my heart, had carotid artery surgery, a triple bypass to hit the high points. I just found out yesterday that my anemia could be causing my irregular strong heart beats. And too much thyroid meds do too. The kidney problem alone could account for the anemia. Who knows when there are so many different things to consider. As was said before, you can only trust your doctor and follow his orders after talking to him about it. I have had to have angiograms and angioplasties after it was discovered that my kidneys were failing, but if they didn't clean out those arteries, I would have a heart attack sooner or later. So, taking a risk for the kidneys with the dye is something that had to be done. However if you don't like/trust your doctor get a second opinioin. Jan On Thu, Jan 6, 2011 at 1:11 AM, Bob Aragon wrote: > Dave, I have never heard of this. I know that too much Iron is bad, but if > you > dont have balance in your blood work because your spleen is destroying too > many > red blood cells, Iron might make perfect sense. He is a hepatologist, > right? > Bobby > > > > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Wed, January 5, 2011 7:31:17 PM > Subject: Re: new chat room > > > Blood doc. wants me to start iron infusions next week. Any of you ever had > to > do that? How bout you Bobby? Spleen quite enlarged from overworking. I > know > iron can be hard on the liver. But, at this point, I'm just wanting some > relief > > from this 24 @ 7 fatigue central. > Dave > > ________________________________ > > To: livercirrhosissupport > Sent: Tue, January 4, 2011 6:29:02 PM > Subject: Re: new chat room > > > Just go to this link, and choose a username, need not be then same every > time. > No password necessary. If you encounter any trouble, let me know. Bobby, > moderator. > > http://livercirrhosissupport.blogspot.com/ > > ________________________________ > > To: livercirrhosissupport > Sent: Mon, January 3, 2011 9:15:43 PM > Subject: Re: new chat room > > How does one get to the chat room? And do you have specific times that > people > will meet there? > > > > > > > Hi everyone, I was really looking forward to the chat room for a lot of > > > reasons but I have been there many times since it opened and no one > else is > > > ever there. It seems like Bobby went to a lot of hard work to create a > safe > > > haven for us to talk and share and it is not being used. > > > I am confused (totally normal condition for me these days by the way). > > > Joan > > > > > > > > > > > > ------------------------------------ > > > > > > Group Email: livercirrhosissupport > > > web address: > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2011 Report Share Posted January 7, 2011 You know, I cannot figure this out. I have too much iron and that caused my cirrhosis. When they went to take blood from my I didn't have enough iron...I was anemic. Figured that out. Having a few issues with my amonia today. Hope I sounded okay. Lyncia ________________________________ To: livercirrhosissupport Sent: Fri, January 7, 2011 1:38:19 AM Subject: Re: new chat room  Holy crap, I see what you are saying. You need the iron. You arent getting enough oxygen to your tissues. Verry bad. I have a touch of this because of a shunt in my lungs from chemicals and excess nitric oxide, and it feels very bad, I cannot even imagine how bad you must feel. Get it done, and good luck Dave. Bobby ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 9:04:29 AM Subject: Re: new chat room I moved 120 miles from where my hepatologist is and had to change primary care doc. The primary did blood work and referred me to this hematologist that had an ultrasound done on my spleen, liver, etc. And also a endoscope and colonoscopy, and a lot of blood work himself. He said because the iron is so low it is a chronic condition that has been going on for monthes or year and longer, not an acute condition. Said trying me on oral iron had several problems. One it would take a very long time to have an effect on me, also because of the condition of my stomach the absorption would not be very good, and iron pills can cause constipation. Infusion would last about an hour a day, once a week for six weeks or longer depending on the levels. I talked to him about iron being bad for the liver, and he said this is excess iron, and I have way low which is very bad on your body, and quality of life. He did talk about blood transfusion, but thinks iron infusion is what to do. I Called my hepatologist to see what he thinks. Always get the machine. Very busy place Washington U. Physicians. Thing that wondered me was that I had blood work there end of May. You would think they'd have picked up on the low red blood count then. I know I am way anemic by the way I feel, and the blood doc showed me where normal levels were and how low mine are on the testing. He showed the whole blood panel scores from top to bottom, and recommended this. Guess I will do it. See what Hepatologist has to say, but am sure he will want to see blood work, maybe even want to do all the blood work I just did over again. More tests, more doc's. I'm sure you all know what an ordeal that can turn into. Dave ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 2:39:26 AM Subject: Re: new chat room Dave , I am severely anemic, taking epo or procrit shots trying to get my hemoglobin and hematocrit up to a decent level. I too am always tired, Just getting dressed wears me out, to say nothing about actually going anywhere afterwards. Some things I do the adrenalne starts flowing, like playing for church and being with friends, but then the rest of that day and the next I just crash. I have been taking the shots for over 6 months and they haven't been doing much. They are checking my iron again which has been fine for the almost 3 years since I was found to be anemic. I was told that if these shots don't fix it the next step is blood transfusions. I am wondering if that is the same thing your doctor is talking about. It is so hard to go from one doctor to another and discuss the same things because they use different terminology for things, just like when you go online and look up a disease or symptom and they give it a name and then give one or two other names it is also called. I have esld, almost to dialysis level with kidney function and have 9 stents in my body, 7 in my heart, had carotid artery surgery, a triple bypass to hit the high points. I just found out yesterday that my anemia could be causing my irregular strong heart beats. And too much thyroid meds do too. The kidney problem alone could account for the anemia. Who knows when there are so many different things to consider. As was said before, you can only trust your doctor and follow his orders after talking to him about it. I have had to have angiograms and angioplasties after it was discovered that my kidneys were failing, but if they didn't clean out those arteries, I would have a heart attack sooner or later. So, taking a risk for the kidneys with the dye is something that had to be done. However if you don't like/trust your doctor get a second opinioin. Jan On Thu, Jan 6, 2011 at 1:11 AM, Bob Aragon wrote: > Dave, I have never heard of this. I know that too much Iron is bad, but if > you > dont have balance in your blood work because your spleen is destroying too > many > red blood cells, Iron might make perfect sense. He is a hepatologist, > right? > Bobby > > > > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Wed, January 5, 2011 7:31:17 PM > Subject: Re: new chat room > > > Blood doc. wants me to start iron infusions next week. Any of you ever had > to > do that? How bout you Bobby? Spleen quite enlarged from overworking. I > know > iron can be hard on the liver. But, at this point, I'm just wanting some > relief > > from this 24 @ 7 fatigue central. > Dave > > ________________________________ > > To: livercirrhosissupport > Sent: Tue, January 4, 2011 6:29:02 PM > Subject: Re: new chat room > > > Just go to this link, and choose a username, need not be then same every > time. > No password necessary. If you encounter any trouble, let me know. Bobby, > moderator. > > http://livercirrhosissupport.blogspot.com/ > > ________________________________ > > To: livercirrhosissupport > Sent: Mon, January 3, 2011 9:15:43 PM > Subject: Re: new chat room > > How does one get to the chat room? And do you have specific times that > people > will meet there? > > > > > > > Hi everyone, I was really looking forward to the chat room for a lot of > > > reasons but I have been there many times since it opened and no one > else is > > > ever there. It seems like Bobby went to a lot of hard work to create a > safe > > > haven for us to talk and share and it is not being used. > > > I am confused (totally normal condition for me these days by the way). > > > Joan > > > > > > > > > > > > ------------------------------------ > > > > > > Group Email: livercirrhosissupport > > > web address: > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2011 Report Share Posted January 7, 2011 You sounded fine, but then maybe I have some amonia issues too, so wouldn't know the difference. Actually, I am lucky, not a problem except before I was diagnosed, cut down the meat and doing fine. What you said doesn't make sense which was the point you were trying to make, right, but you said it so we could understand what you said. Lots of things don't make sense. I have been low iron a good part of my life, all of my childhood, and now I am anemic but unless the new bloodwork they are going to draw on Monday shows my iron is low, it isn't iron related. My blood s just crazy, even my blood cells are too big Jan > You know, I cannot figure this out. I have too much iron and that caused > my > cirrhosis. When they went to take blood from my I didn't have enough > iron...I > was anemic. Figured that out. > > Having a few issues with my amonia today. Hope I sounded okay. Lyncia > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Fri, January 7, 2011 1:38:19 AM > Subject: Re: new chat room > > > Holy crap, I see what you are saying. You need the iron. You arent getting > enough oxygen to your tissues. Verry bad. I have a touch of this because of > a > shunt in my lungs from chemicals and excess nitric oxide, and it feels very > bad, > > I cannot even imagine how bad you must feel. Get it done, and good luck > Dave. > Bobby > > ________________________________ > > To: livercirrhosissupport > Sent: Thu, January 6, 2011 9:04:29 AM > Subject: Re: new chat room > > I moved 120 miles from where my hepatologist is and had to change primary > care > doc. The primary did blood work and referred me to this hematologist that > had > an ultrasound done on my spleen, liver, etc. And also a endoscope and > colonoscopy, and a lot of blood work himself. He said because the iron is > so > low it is a chronic condition that has been going on for monthes or year > and > longer, not an acute condition. Said trying me on oral iron had several > problems. One it would take a very long time to have an effect on me, also > because of the condition of my stomach the absorption would not be very > good, > and iron pills can cause constipation. Infusion would last about an hour a > day, > > once a week for six weeks or longer depending on the levels. I talked to > him > about iron being bad for the liver, and he said this is excess iron, and I > have > way low which is very bad on your body, and quality of life. He did talk > about > blood transfusion, but thinks iron infusion is what to do. I Called my > hepatologist to see what he thinks. Always get the machine. Very busy place > Washington U. Physicians. Thing that wondered me was that I had blood work > there end of May. You would think they'd have picked up on the low red > blood > count then. I know I am way anemic by the way I feel, and the blood doc > showed > me where normal levels were and how low mine are on the testing. He showed > the > whole blood panel scores from top to bottom, and recommended this. Guess I > will > > do it. See what Hepatologist has to say, but am sure he will want to see > blood > work, maybe even want to do all the blood work I just did over again. More > tests, more doc's. I'm sure you all know what an ordeal that can turn into. > > Dave > > ________________________________ > > To: livercirrhosissupport > Sent: Thu, January 6, 2011 2:39:26 AM > Subject: Re: new chat room > > Dave , I am severely anemic, taking epo or procrit shots trying to get my > hemoglobin and hematocrit up to a decent level. I too am always tired, > Just getting dressed wears me out, to say nothing about actually going > anywhere afterwards. Some things I do the adrenalne starts flowing, like > playing for church and being with friends, but then the rest of that day > and > the next I just crash. I have been taking the shots for over 6 months and > they haven't been doing much. They are checking my iron again which has > been fine for the almost 3 years since I was found to be anemic. I was told > that if these shots don't fix it the next step is blood transfusions. I am > wondering if that is the same thing your doctor is talking about. It is so > hard to go from one doctor to another and discuss the same things because > they use different terminology for things, just like when you go online and > look up a disease or symptom and they give it a name and then give one or > two other names it is also called. I have esld, almost to dialysis level > with kidney function and have 9 stents in my body, 7 in my heart, had > carotid artery surgery, a triple bypass to hit the high points. I just > found out yesterday that my anemia could be causing my irregular strong > heart beats. And too much thyroid meds do too. The kidney problem alone > could account for the anemia. Who knows when there are so many different > things to consider. As was said before, you can only trust your doctor and > follow his orders after talking to him about it. I have had to have > angiograms and angioplasties after it was discovered that my kidneys were > failing, but if they didn't clean out those arteries, I would have a heart > attack sooner or later. So, taking a risk for the kidneys with the dye is > something that had to be done. However if you don't like/trust your doctor > get a second opinioin. Jan > > On Thu, Jan 6, 2011 at 1:11 AM, Bob Aragon <robwalkingeagle@... > >wrote: > > > Dave, I have never heard of this. I know that too much Iron is bad, but > if > > you > > dont have balance in your blood work because your spleen is destroying > too > > many > > red blood cells, Iron might make perfect sense. He is a hepatologist, > > right? > > Bobby > > > > > > > > > > > > > > > > ________________________________ > > > > To: livercirrhosissupport > > Sent: Wed, January 5, 2011 7:31:17 PM > > Subject: Re: new chat room > > > > > > Blood doc. wants me to start iron infusions next week. Any of you ever > had > > to > > do that? How bout you Bobby? Spleen quite enlarged from overworking. I > > know > > iron can be hard on the liver. But, at this point, I'm just wanting some > > relief > > > > from this 24 @ 7 fatigue central. > > Dave > > > > ________________________________ > > > > To: livercirrhosissupport > > Sent: Tue, January 4, 2011 6:29:02 PM > > Subject: Re: new chat room > > > > > > Just go to this link, and choose a username, need not be then same every > > time. > > No password necessary. If you encounter any trouble, let me know. Bobby, > > moderator. > > > > http://livercirrhosissupport.blogspot.com/ > > > > ________________________________ > > > > To: livercirrhosissupport > > Sent: Mon, January 3, 2011 9:15:43 PM > > Subject: Re: new chat room > > > > How does one get to the chat room? And do you have specific times that > > people > > will meet there? > > > > > > > > > > > Hi everyone, I was really looking forward to the chat room for a lot > of > > > > reasons but I have been there many times since it opened and no one > > else is > > > > ever there. It seems like Bobby went to a lot of hard work to create > a > > safe > > > > haven for us to talk and share and it is not being used. > > > > I am confused (totally normal condition for me these days by the > way). > > > > Joan > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2011 Report Share Posted January 7, 2011 My husband died on Monday, and on Tuesday I unsubscribed his address from all of his 11 liver, coeliac and gluten groups. Why does only this group continue to send posts to his address? I think I have tried to unsubb him 3 or 4 times now. It's very upsetting for me to keep finding them in the Inbox. Please can somebody do something to stop it? Anya Re: new chat room > You sounded fine, but then maybe I have some amonia issues too, so > wouldn't > know the difference. Actually, I am lucky, not a problem except before I > was diagnosed, cut down the meat and doing fine. > What you said doesn't make sense which was the point you were trying to > make, right, but you said it so we could understand what you said. Lots > of > things don't make sense. I have been low iron a good part of my life, all > of my childhood, and now I am anemic but unless the new bloodwork they are > going to draw on Monday shows my iron is low, it isn't iron related. My > blood s just crazy, even my blood cells are too big Jan > > >> You know, I cannot figure this out. I have too much iron and that >> caused >> my >> cirrhosis. When they went to take blood from my I didn't have enough >> iron...I >> was anemic. Figured that out. >> >> Having a few issues with my amonia today. Hope I sounded okay. Lyncia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2011 Report Share Posted January 7, 2011 Anya , I am so sorry this is happening to you. I have checked and nobody I know who is part of management of this group is online right now. I am sure they will see your post in the morning and take care of unsubbing your address. If I seen any management on line tonight, I will bring it to their attention. Again I am so sorry. Wish I could do something but I am not management on this group. Jan On Fri, Jan 7, 2011 at 10:37 PM, Wik & Anya wrote: > My husband died on Monday, and on Tuesday I unsubscribed his address > from all of his 11 liver, coeliac and gluten groups. Why does only this > group continue to send posts to his address? I think I have tried to > unsubb > him 3 or 4 times now. It's very upsetting for me to keep finding them in > the Inbox. Please can somebody do something to stop it? > > Anya > > > > Re: new chat room > > > > You sounded fine, but then maybe I have some amonia issues too, so > > wouldn't > > know the difference. Actually, I am lucky, not a problem except before I > > was diagnosed, cut down the meat and doing fine. > > What you said doesn't make sense which was the point you were trying to > > make, right, but you said it so we could understand what you said. Lots > > of > > things don't make sense. I have been low iron a good part of my life, > all > > of my childhood, and now I am anemic but unless the new bloodwork they > are > > going to draw on Monday shows my iron is low, it isn't iron related. My > > blood s just crazy, even my blood cells are too big Jan > > > > > >> You know, I cannot figure this out. I have too much iron and that > >> caused > >> my > >> cirrhosis. When they went to take blood from my I didn't have enough > >> iron...I > >> was anemic. Figured that out. > >> > >> Having a few issues with my amonia today. Hope I sounded okay. Lyncia > > > > ------------------------------------ > > Group Email: livercirrhosissupport > web address: > http://groups.yahoo.com/group/livercirrhosissupport/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 Been away from my computer since Thursday...my Hepatologists nurse called and had me have the hematologist fax all info to him. He is to call me Monday and let me know if I should have infusions.  Am scheduled for my first on Tuesday. Will be interesting if they disagree.  Will be like a video game... " The Battle of the Experts " ....   Dave ________________________________ To: livercirrhosissupport Sent: Fri, January 7, 2011 1:38:19 AM Subject: Re: new chat room  Holy crap, I see what you are saying. You need the iron. You arent getting enough oxygen to your tissues. Verry bad. I have a touch of this because of a shunt in my lungs from chemicals and excess nitric oxide, and it feels very bad, I cannot even imagine how bad you must feel. Get it done, and good luck Dave. Bobby ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 9:04:29 AM Subject: Re: new chat room I moved 120 miles from where my hepatologist is and had to change primary care doc. The primary did blood work and referred me to this hematologist that had an ultrasound done on my spleen, liver, etc. And also a endoscope and colonoscopy, and a lot of blood work himself. He said because the iron is so low it is a chronic condition that has been going on for monthes or year and longer, not an acute condition. Said trying me on oral iron had several problems. One it would take a very long time to have an effect on me, also because of the condition of my stomach the absorption would not be very good, and iron pills can cause constipation. Infusion would last about an hour a day, once a week for six weeks or longer depending on the levels. I talked to him about iron being bad for the liver, and he said this is excess iron, and I have way low which is very bad on your body, and quality of life. He did talk about blood transfusion, but thinks iron infusion is what to do. I Called my hepatologist to see what he thinks. Always get the machine. Very busy place Washington U. Physicians. Thing that wondered me was that I had blood work there end of May. You would think they'd have picked up on the low red blood count then. I know I am way anemic by the way I feel, and the blood doc showed me where normal levels were and how low mine are on the testing. He showed the whole blood panel scores from top to bottom, and recommended this. Guess I will do it. See what Hepatologist has to say, but am sure he will want to see blood work, maybe even want to do all the blood work I just did over again. More tests, more doc's. I'm sure you all know what an ordeal that can turn into. Dave ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 2:39:26 AM Subject: Re: new chat room Dave , I am severely anemic, taking epo or procrit shots trying to get my hemoglobin and hematocrit up to a decent level. I too am always tired, Just getting dressed wears me out, to say nothing about actually going anywhere afterwards. Some things I do the adrenalne starts flowing, like playing for church and being with friends, but then the rest of that day and the next I just crash. I have been taking the shots for over 6 months and they haven't been doing much. They are checking my iron again which has been fine for the almost 3 years since I was found to be anemic. I was told that if these shots don't fix it the next step is blood transfusions. I am wondering if that is the same thing your doctor is talking about. It is so hard to go from one doctor to another and discuss the same things because they use different terminology for things, just like when you go online and look up a disease or symptom and they give it a name and then give one or two other names it is also called. I have esld, almost to dialysis level with kidney function and have 9 stents in my body, 7 in my heart, had carotid artery surgery, a triple bypass to hit the high points. I just found out yesterday that my anemia could be causing my irregular strong heart beats. And too much thyroid meds do too. The kidney problem alone could account for the anemia. Who knows when there are so many different things to consider. As was said before, you can only trust your doctor and follow his orders after talking to him about it. I have had to have angiograms and angioplasties after it was discovered that my kidneys were failing, but if they didn't clean out those arteries, I would have a heart attack sooner or later. So, taking a risk for the kidneys with the dye is something that had to be done. However if you don't like/trust your doctor get a second opinioin. Jan On Thu, Jan 6, 2011 at 1:11 AM, Bob Aragon wrote: > Dave, I have never heard of this. I know that too much Iron is bad, but if > you > dont have balance in your blood work because your spleen is destroying too > many > red blood cells, Iron might make perfect sense. He is a hepatologist, > right? > Bobby > > > > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Wed, January 5, 2011 7:31:17 PM > Subject: Re: new chat room > > > Blood doc. wants me to start iron infusions next week. Any of you ever had > to > do that? How bout you Bobby? Spleen quite enlarged from overworking. I > know > iron can be hard on the liver. But, at this point, I'm just wanting some > relief > > from this 24 @ 7 fatigue central. > Dave > > ________________________________ > > To: livercirrhosissupport > Sent: Tue, January 4, 2011 6:29:02 PM > Subject: Re: new chat room > > > Just go to this link, and choose a username, need not be then same every > time. > No password necessary. If you encounter any trouble, let me know. Bobby, > moderator. > > http://livercirrhosissupport.blogspot.com/ > > ________________________________ > > To: livercirrhosissupport > Sent: Mon, January 3, 2011 9:15:43 PM > Subject: Re: new chat room > > How does one get to the chat room? And do you have specific times that > people > will meet there? > > > > > > > Hi everyone, I was really looking forward to the chat room for a lot of > > > reasons but I have been there many times since it opened and no one > else is > > > ever there. It seems like Bobby went to a lot of hard work to create a > safe > > > haven for us to talk and share and it is not being used. > > > I am confused (totally normal condition for me these days by the way). > > > Joan > > > > > > > > > > > > ------------------------------------ > > > > > > Group Email: livercirrhosissupport > > > web address: > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 Funny thing you should be having this issue as well as I. A bone lesion was found on my seventh rib, left side, and it was originally listed by a radiologist as a " lytic lesion " , but a bone specialist at CU said that it showed a smooth outer layer, and that he felt that it is an " expansile " lesion. He noted that it looked very non agressive. Well, it has made this part of my rib look nearly 5 times its normal width, and from the side, it looks ragged, and broken.It feels as if a hot nail is being driven in to my side. I showed this view to my pain doctor, whom I trust the most, and he said " you have an agressive looking lytic lesion, I dont know why they are downgrading it at the university, but it is what it is, lytic, meaning bone is being destroyed. I am scheduled to see an oncologist on the matter, and am interested to see what he says about it. I am interested to see what is don in your case as well. Any bets the heps will not want you to chance iron infusions? They only care about your liver's health, not yours so much. bOBBY ________________________________ To: livercirrhosissupport Sent: Sat, January 8, 2011 6:12:03 PM Subject: Re: new chat room Been away from my computer since Thursday...my Hepatologists nurse called and had me have the hematologist fax all info to him. He is to call me Monday and let me know if I should have infusions. Am scheduled for my first on Tuesday. Will be interesting if they disagree. Will be like a video game... " The Battle of the Experts " .... Dave ________________________________ To: livercirrhosissupport Sent: Fri, January 7, 2011 1:38:19 AM Subject: Re: new chat room Holy crap, I see what you are saying. You need the iron. You arent getting enough oxygen to your tissues. Verry bad. I have a touch of this because of a shunt in my lungs from chemicals and excess nitric oxide, and it feels very bad, I cannot even imagine how bad you must feel. Get it done, and good luck Dave. Bobby ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 9:04:29 AM Subject: Re: new chat room I moved 120 miles from where my hepatologist is and had to change primary care doc. The primary did blood work and referred me to this hematologist that had an ultrasound done on my spleen, liver, etc. And also a endoscope and colonoscopy, and a lot of blood work himself. He said because the iron is so low it is a chronic condition that has been going on for monthes or year and longer, not an acute condition. Said trying me on oral iron had several problems. One it would take a very long time to have an effect on me, also because of the condition of my stomach the absorption would not be very good, and iron pills can cause constipation. Infusion would last about an hour a day, once a week for six weeks or longer depending on the levels. I talked to him about iron being bad for the liver, and he said this is excess iron, and I have way low which is very bad on your body, and quality of life. He did talk about blood transfusion, but thinks iron infusion is what to do. I Called my hepatologist to see what he thinks. Always get the machine. Very busy place Washington U. Physicians. Thing that wondered me was that I had blood work there end of May. You would think they'd have picked up on the low red blood count then. I know I am way anemic by the way I feel, and the blood doc showed me where normal levels were and how low mine are on the testing. He showed the whole blood panel scores from top to bottom, and recommended this. Guess I will do it. See what Hepatologist has to say, but am sure he will want to see blood work, maybe even want to do all the blood work I just did over again. More tests, more doc's. I'm sure you all know what an ordeal that can turn into. Dave ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 2:39:26 AM Subject: Re: new chat room Dave , I am severely anemic, taking epo or procrit shots trying to get my hemoglobin and hematocrit up to a decent level. I too am always tired, Just getting dressed wears me out, to say nothing about actually going anywhere afterwards. Some things I do the adrenalne starts flowing, like playing for church and being with friends, but then the rest of that day and the next I just crash. I have been taking the shots for over 6 months and they haven't been doing much. They are checking my iron again which has been fine for the almost 3 years since I was found to be anemic. I was told that if these shots don't fix it the next step is blood transfusions. I am wondering if that is the same thing your doctor is talking about. It is so hard to go from one doctor to another and discuss the same things because they use different terminology for things, just like when you go online and look up a disease or symptom and they give it a name and then give one or two other names it is also called. I have esld, almost to dialysis level with kidney function and have 9 stents in my body, 7 in my heart, had carotid artery surgery, a triple bypass to hit the high points. I just found out yesterday that my anemia could be causing my irregular strong heart beats. And too much thyroid meds do too. The kidney problem alone could account for the anemia. Who knows when there are so many different things to consider. As was said before, you can only trust your doctor and follow his orders after talking to him about it. I have had to have angiograms and angioplasties after it was discovered that my kidneys were failing, but if they didn't clean out those arteries, I would have a heart attack sooner or later. So, taking a risk for the kidneys with the dye is something that had to be done. However if you don't like/trust your doctor get a second opinioin. Jan On Thu, Jan 6, 2011 at 1:11 AM, Bob Aragon wrote: > Dave, I have never heard of this. I know that too much Iron is bad, but if > you > dont have balance in your blood work because your spleen is destroying too > many > red blood cells, Iron might make perfect sense. He is a hepatologist, > right? > Bobby > > > > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Wed, January 5, 2011 7:31:17 PM > Subject: Re: new chat room > > > Blood doc. wants me to start iron infusions next week. Any of you ever had > to > do that? How bout you Bobby? Spleen quite enlarged from overworking. I > know > iron can be hard on the liver. But, at this point, I'm just wanting some > relief > > from this 24 @ 7 fatigue central. > Dave > > ________________________________ > > To: livercirrhosissupport > Sent: Tue, January 4, 2011 6:29:02 PM > Subject: Re: new chat room > > > Just go to this link, and choose a username, need not be then same every > time. > No password necessary. If you encounter any trouble, let me know. Bobby, > moderator. > > http://livercirrhosissupport.blogspot.com/ > > ________________________________ > > To: livercirrhosissupport > Sent: Mon, January 3, 2011 9:15:43 PM > Subject: Re: new chat room > > How does one get to the chat room? And do you have specific times that > people > will meet there? > > > > > > > Hi everyone, I was really looking forward to the chat room for a lot of > > > reasons but I have been there many times since it opened and no one > else is > > > ever there. It seems like Bobby went to a lot of hard work to create a > safe > > > haven for us to talk and share and it is not being used. > > > I am confused (totally normal condition for me these days by the way). > > > Joan > > > > > > > > > > > > ------------------------------------ > > > > > > Group Email: livercirrhosissupport > > > web address: > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 I know what you mean. It's ironic that your quality of life has to suffer so much, and then when knocking on deaths door, you may be fortunate enough to get a transplant, or maybe not. I understand why, because of availiblilty, but one day they will be able to rejuvinate a damaged liver. Before you have to knock on the door. Be it stem cells or in some other way. Won't help us, but is comforting to know someday that will happen for others. I'm thinking the liverman will say continue to deal with what you've been dealing with. I'm thinking I'll say O.K. and then get the infusion anyway.   Dave  ________________________________ To: livercirrhosissupport Sent: Sun, January 9, 2011 5:18:16 AM Subject: Re: new chat room  Funny thing you should be having this issue as well as I. A bone lesion was found on my seventh rib, left side, and it was originally listed by a radiologist as a " lytic lesion " , but a bone specialist at CU said that it showed a smooth outer layer, and that he felt that it is an " expansile " lesion. He noted that it looked very non agressive. Well, it has made this part of my rib look nearly 5 times its normal width, and from the side, it looks ragged, and broken.It feels as if a hot nail is being driven in to my side. I showed this view to my pain doctor, whom I trust the most, and he said " you have an agressive looking lytic lesion, I dont know why they are downgrading it at the university, but it is what it is, lytic, meaning bone is being destroyed. I am scheduled to see an oncologist on the matter, and am interested to see what he says about it. I am interested to see what is don in your case as well. Any bets the heps will not want you to chance iron infusions? They only care about your liver's health, not yours so much. bOBBY ________________________________ To: livercirrhosissupport Sent: Sat, January 8, 2011 6:12:03 PM Subject: Re: new chat room Been away from my computer since Thursday...my Hepatologists nurse called and had me have the hematologist fax all info to him. He is to call me Monday and let me know if I should have infusions. Am scheduled for my first on Tuesday. Will be interesting if they disagree. Will be like a video game... " The Battle of the Experts " .... Dave ________________________________ To: livercirrhosissupport Sent: Fri, January 7, 2011 1:38:19 AM Subject: Re: new chat room Holy crap, I see what you are saying. You need the iron. You arent getting enough oxygen to your tissues. Verry bad. I have a touch of this because of a shunt in my lungs from chemicals and excess nitric oxide, and it feels very bad, I cannot even imagine how bad you must feel. Get it done, and good luck Dave. Bobby ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 9:04:29 AM Subject: Re: new chat room I moved 120 miles from where my hepatologist is and had to change primary care doc. The primary did blood work and referred me to this hematologist that had an ultrasound done on my spleen, liver, etc. And also a endoscope and colonoscopy, and a lot of blood work himself. He said because the iron is so low it is a chronic condition that has been going on for monthes or year and longer, not an acute condition. Said trying me on oral iron had several problems. One it would take a very long time to have an effect on me, also because of the condition of my stomach the absorption would not be very good, and iron pills can cause constipation. Infusion would last about an hour a day, once a week for six weeks or longer depending on the levels. I talked to him about iron being bad for the liver, and he said this is excess iron, and I have way low which is very bad on your body, and quality of life. He did talk about blood transfusion, but thinks iron infusion is what to do. I Called my hepatologist to see what he thinks. Always get the machine. Very busy place Washington U. Physicians. Thing that wondered me was that I had blood work there end of May. You would think they'd have picked up on the low red blood count then. I know I am way anemic by the way I feel, and the blood doc showed me where normal levels were and how low mine are on the testing. He showed the whole blood panel scores from top to bottom, and recommended this. Guess I will do it. See what Hepatologist has to say, but am sure he will want to see blood work, maybe even want to do all the blood work I just did over again. More tests, more doc's. I'm sure you all know what an ordeal that can turn into. Dave ________________________________ To: livercirrhosissupport Sent: Thu, January 6, 2011 2:39:26 AM Subject: Re: new chat room Dave , I am severely anemic, taking epo or procrit shots trying to get my hemoglobin and hematocrit up to a decent level. I too am always tired, Just getting dressed wears me out, to say nothing about actually going anywhere afterwards. Some things I do the adrenalne starts flowing, like playing for church and being with friends, but then the rest of that day and the next I just crash. I have been taking the shots for over 6 months and they haven't been doing much. They are checking my iron again which has been fine for the almost 3 years since I was found to be anemic. I was told that if these shots don't fix it the next step is blood transfusions. I am wondering if that is the same thing your doctor is talking about. It is so hard to go from one doctor to another and discuss the same things because they use different terminology for things, just like when you go online and look up a disease or symptom and they give it a name and then give one or two other names it is also called. I have esld, almost to dialysis level with kidney function and have 9 stents in my body, 7 in my heart, had carotid artery surgery, a triple bypass to hit the high points. I just found out yesterday that my anemia could be causing my irregular strong heart beats. And too much thyroid meds do too. The kidney problem alone could account for the anemia. Who knows when there are so many different things to consider. As was said before, you can only trust your doctor and follow his orders after talking to him about it. I have had to have angiograms and angioplasties after it was discovered that my kidneys were failing, but if they didn't clean out those arteries, I would have a heart attack sooner or later. So, taking a risk for the kidneys with the dye is something that had to be done. However if you don't like/trust your doctor get a second opinioin. Jan On Thu, Jan 6, 2011 at 1:11 AM, Bob Aragon wrote: > Dave, I have never heard of this. I know that too much Iron is bad, but if > you > dont have balance in your blood work because your spleen is destroying too > many > red blood cells, Iron might make perfect sense. He is a hepatologist, > right? > Bobby > > > > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Wed, January 5, 2011 7:31:17 PM > Subject: Re: new chat room > > > Blood doc. wants me to start iron infusions next week. Any of you ever had > to > do that? How bout you Bobby? Spleen quite enlarged from overworking. I > know > iron can be hard on the liver. But, at this point, I'm just wanting some > relief > > from this 24 @ 7 fatigue central. > Dave > > ________________________________ > > To: livercirrhosissupport > Sent: Tue, January 4, 2011 6:29:02 PM > Subject: Re: new chat room > > > Just go to this link, and choose a username, need not be then same every > time. > No password necessary. If you encounter any trouble, let me know. Bobby, > moderator. > > http://livercirrhosissupport.blogspot.com/ > > ________________________________ > > To: livercirrhosissupport > Sent: Mon, January 3, 2011 9:15:43 PM > Subject: Re: new chat room > > How does one get to the chat room? And do you have specific times that > people > will meet there? > > > > > > > Hi everyone, I was really looking forward to the chat room for a lot of > > > reasons but I have been there many times since it opened and no one > else is > > > ever there. It seems like Bobby went to a lot of hard work to create a > safe > > > haven for us to talk and share and it is not being used. > > > I am confused (totally normal condition for me these days by the way). > > > Joan > > > > > > > > > > > > ------------------------------------ > > > > > > Group Email: livercirrhosissupport > > > web address: > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > Quote Link to comment Share on other sites More sharing options...
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