Guest guest Posted May 1, 2010 Report Share Posted May 1, 2010 Debbie, I am so sorry. I know only a small bit about hemochromatosis, but if memory serves me correctly, it is incurable but treatable. I'm not sure how this would affect your sister's chances of getting a liver, but please don't let it hold you back for encouraging her to at least try, if that is what she wants to do. No one can say no except the transplant team. So, is she wants an evaluation, then push her doctor to make arrangements for that. It is likely, from I remember, that the hemochromatosis caused her cirrhosis. As I understand it, it can go undetected in a individual for years. I believe I remember that it is a genetic disorder, is that right? Whatever the case may be, I reiterate that the only people with the power to say no is the transplant team. Pleaes know you and your sister are in my thoughts and prayers. Many hugs................ Di > > > My sister is 46 years old and just found out she has this terriable blood > disorder and has cihrosis. And i don't even know if she can get a Liver > because of it! > > > -- Warm Hugs.......... Di http://auntdisexperimentallife.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2010 Report Share Posted May 1, 2010 Hemochromatosi is a genetic disorder. It can eventually turn cancerous, not sure about cirrhotic. My uncle died of it, and his daughter is on liver dialysis because of it. Both our doctors think our grandfather died of liver disease too, hers, hemochromotosis, mine cirrhosis. At the time, he was diagnosed with pernicious anemia, but the symptoms are very similar, and the treatment available in the 1930s did not work for him. My cousin has been on dialysis for many years and is doing fine. Jan H On Sat, May 1, 2010 at 9:22 PM, Diane Chandler wrote: > Debbie, I am so sorry. I know only a small bit about hemochromatosis, but > if memory serves me correctly, it is incurable but treatable. I'm not sure > how this would affect your sister's chances of getting a liver, but please > don't let it hold you back for encouraging her to at least try, if that is > what she wants to do. No one can say no except the transplant team. So, > is > she wants an evaluation, then push her doctor to make arrangements for > that. It is likely, from I remember, that the hemochromatosis caused her > cirrhosis. As I understand it, it can go undetected in a individual for > years. I believe I remember that it is a genetic disorder, is that right? > Whatever the case may be, I reiterate that the only people with the power > to > say no is the transplant team. Pleaes know you and your sister are in my > thoughts and prayers. > > Many hugs................ > > Di > > > > > > > > > > > > > > My sister is 46 years old and just found out she has this terriable blood > > disorder and has cihrosis. And i don't even know if she can get a Liver > > because of it! > > > > > > > > > > -- > Warm Hugs.......... > > Di > http://auntdisexperimentallife.blogspot.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2010 Report Share Posted May 1, 2010 I don't know to much myself. It can be caused from genetics and i am getting checked. When we were very young children the family Dr. at that time had us all on iron drops. So I am a llittle concerned for myself. But my sister is an alcoholic also. So i don't know what to do. I hate it. We were told she might have a couple years to live. I am filled with sorrow. it hurts so bad. I cry every day. I don't drive and she lives about 30 minutes from me. I call her every day. She is in a skilled nursing home. Next month she goes through many test at the Cleveland Clinic.. She doesn't even know she has the blood disease. On top of all this she has a small anyurisn in her brain. Our mother died from one when she was 53. Mom had her 1st anyurism when she was 47. thanks for mailing me. it means a lot! Hugs......Debbie > > > My sister is 46 years old and just found out she has this terriable blood > disorder and has cihrosis. And i don't even know if she can get a Liver > because of it! > > > -- Warm Hugs.......... Di http://auntdisexperimentallife.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2010 Report Share Posted May 1, 2010 My uncle who died of it was my father's brother and he was married to my mother's sister, so the blood relationship between my three cousins and my two brothers and I are almost as close as brothers and sisters. I don't know about my cousins, but my family always took iron pills when we were young. Because of the diagnosis of my grandfather, the doctors wanted to make sure we didn't get iron anemia. I should say I was supposed to take them, but hated them so I would reuse one until it got dusty where my mother put it on the window sill between meals. I don't remember why I hated those little green triangles so much, but maybe even then I would have trouble with constipation when I took iron. One doctor suggested I get checked for hemochromotosis also because it is not unknown to have both hemo and cirrhosis. > I don't know to much myself. It can be caused from genetics and i am > getting checked. When we were very young children the family Dr. at that > time had us all on iron drops. So I am a llittle concerned for myself. But > my sister is an alcoholic also. So i don't know what to do. I hate it. We > were told she might have a couple years to live. I am filled with sorrow. it > hurts so bad. > I cry every day. I don't drive and she lives about 30 minutes from me. I > call her every day. She is in a skilled nursing home. Next month she goes > through many test at the Cleveland Clinic.. She doesn't even know she has > the blood disease. On top of all this she has a small anyurisn in her brain. > Our mother died from one when she was 53. Mom had her 1st anyurism when she > was 47. > thanks for mailing me. it means a lot! > Hugs......Debbie > > > > > > > > > My sister is 46 years old and just found out she has this terriable blood > > disorder and has cihrosis. And i don't even know if she can get a Liver > > because of it! > > > > > > > > > > -- > Warm Hugs.......... > > Di > http://auntdisexperimentallife.blogspot.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2010 Report Share Posted May 2, 2010 Debbie, If she is being tested at the Cleveland Clinic, you can rest assured she will receive top notch care. They are some of the best in the country. I totally understand your concerns about your sister and all the health problems she has. It is normal for us to fret when someone we love is very ill. When my husband was diagnosed, I thought I couldn't stand it, but I did. When I was diagnosed, I only wanted to know how long. My Internist sat me down and told me the sure way to make my life shorter was to sit every day worrying about it. He told me just because I had been diagnosed with cirrhosis did not mean I would die of liver disease. He encouraged me to take care of myself, get regular check ups and to leave all the rest in the hands of God because He was the only one who could really do anything for me anyway. That made sense to me and so, that's what I've tried to do. Hang in there Debbie. No matter what doctors say or what is going on in our bodies, God is still in control. My prayers are with you. Many hugs............... Di > > > I don't know to much myself. It can be caused from genetics and i am > getting checked. When we were very young children the family Dr. at that > time had us all on iron drops. So I am a llittle concerned for myself. But > my sister is an alcoholic also. So i don't know what to do. I hate it. We > were told she might have a couple years to live. I am filled with sorrow. it > hurts so bad. > I cry every day. I don't drive and she lives about 30 minutes from me. I > call her every day. She is in a skilled nursing home. Next month she goes > through many test at the Cleveland Clinic.. She doesn't even know she has > the blood disease. On top of all this she has a small anyurisn in her brain. > Our mother died from one when she was 53. Mom had her 1st anyurism when she > was 47. > thanks for mailing me. it means a lot! > Hugs......Debbie > > > > > > > > > My sister is 46 years old and just found out she has this terriable blood > > disorder and has cihrosis. And i don't even know if she can get a Liver > > because of it! > > > > > > > > -- > Warm Hugs.......... > > Di > http://auntdisexperimentallife.blogspot.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2010 Report Share Posted May 2, 2010 Debbie and all Hemochromatosis is actually " iron overload " !! I'm attaching a website that will help begin your research about it www.cdnhemochromatosis.ca/index.php Science has spent so much time with the study of low iron, that it is only recently that a researcher from Canada discovered the horrible effects of " high iron " . When I was first told that I had it and did some research then, I discovered that besides the fact that it can be a genetic disorder, it's common amongst folks with Hep C. I doubt that taking iron pills as a young adult affected this too much because I was sooo anemic that it was the only thing that kept me functioning. The genetic part apparently comes from a Northern European background, especially the British Isles etc. My Dad has had high iron all his life and is 85 yrs old come next July. Don't know and probably never will, if mine was suddenly triggered by the HepC or was just hidden all this time. Helpfully, my menstruation probably kept it from getting too bad, back when! Fortunately, mine does not give me much problem at all and neither does it cause my Dad problems. I'm not even sure if any of my brothers have been diagnoses and will have to ask the one that also suffers the HepC. Needless to say, I try very hard to stay away from any foods that are high in iron!! It'll also be interesting to see what level the high iron is, now that the HepC virus has been kicked from my body. Of course Debbie, the absolute worst thing that your sister could be doing is drinking!!!! Booze and a sick liver is a time bomb! I am a recovering alcoholic and so very very grateful that I became sober 15 yrs before finding out about my infliction with HepC and eventually the high iron. I know for an absolute fact, that if I had not been sober for those years, I simply would not have been alive to even post this e-mail. Gloria I don't know to much myself. It can be caused from genetics and i am getting checked. When we were very young children the family Dr. at that time had us all on iron drops. So I am a llittle concerned for myself. But my sister is an alcoholic also. So i don't know what to do. I hate it. We were told she might have a couple years to live. I am filled with sorrow. it hurts so bad. I cry every day. I don't drive and she lives about 30 minutes from me. I call her every day. She is in a skilled nursing home. Next month she goes through many test at the Cleveland Clinic.. She doesn't even know she has the blood disease. On top of all this she has a small anyurisn in her brain. Our mother died from one when she was 53. Mom had her 1st anyurism when she was 47. thanks for mailing me. it means a lot! Hugs......Debbie ------------ --------- --------- ------ Group Email: livercirrhosissuppo rtyahoogroups (DOT) com web address: http://groups. yahoo.com/ group/livercirrh osissupport/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2010 Report Share Posted May 2, 2010 My brother had high iron and was a heavy drinker and ended up dying of liver cancer. I don;t know how much they were related.. Subject: Re: Hemochromatosis To: livercirrhosissupport Date: Sunday, May 2, 2010, 12:55 PM  Debbie and all Hemochromatosis is actually " iron overload " !! I'm attaching a website that will help begin your research about it www.cdnhemochromato sis.ca/index. php Science has spent so much time with the study of low iron, that it is only recently that a researcher from Canada discovered the horrible effects of " high iron " . When I was first told that I had it and did some research then, I discovered that besides the fact that it can be a genetic disorder, it's common amongst folks with Hep C. I doubt that taking iron pills as a young adult affected this too much because I was sooo anemic that it was the only thing that kept me functioning. The genetic part apparently comes from a Northern European background, especially the British Isles etc. My Dad has had high iron all his life and is 85 yrs old come next July. Don't know and probably never will, if mine was suddenly triggered by the HepC or was just hidden all this time. Helpfully, my menstruation probably kept it from getting too bad, back when! Fortunately, mine does not give me much problem at all and neither does it cause my Dad problems. I'm not even sure if any of my brothers have been diagnoses and will have to ask the one that also suffers the HepC. Needless to say, I try very hard to stay away from any foods that are high in iron!! It'll also be interesting to see what level the high iron is, now that the HepC virus has been kicked from my body. Of course Debbie, the absolute worst thing that your sister could be doing is drinking!!!! Booze and a sick liver is a time bomb! I am a recovering alcoholic and so very very grateful that I became sober 15 yrs before finding out about my infliction with HepC and eventually the high iron. I know for an absolute fact, that if I had not been sober for those years, I simply would not have been alive to even post this e-mail. Gloria I don't know to much myself. It can be caused from genetics and i am getting checked. When we were very young children the family Dr. at that time had us all on iron drops. So I am a llittle concerned for myself. But my sister is an alcoholic also. So i don't know what to do. I hate it. We were told she might have a couple years to live. I am filled with sorrow. it hurts so bad. I cry every day. I don't drive and she lives about 30 minutes from me. I call her every day. She is in a skilled nursing home. Next month she goes through many test at the Cleveland Clinic.. She doesn't even know she has the blood disease. On top of all this she has a small anyurisn in her brain. Our mother died from one when she was 53. Mom had her 1st anyurism when she was 47. thanks for mailing me. it means a lot! Hugs......Debbie ------------ --------- --------- ------ Group Email: livercirrhosissuppo rtyahoogroups (DOT) com web address: http://groups. yahoo.com/ group/livercirrh osissupport/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2010 Report Share Posted May 2, 2010 Untreated high iron (hemochromatosis) will/can lead to liver cancer. That is what happened to my uncle because it wasn't diagnosed early enough. Ordinarily liver cancer will have come from some other area of the body according to the doctor who diagnosied me with cirrhosis. He was sure when he found out I had a liver problem that I had cancer and sent me through a whole bunch of other specialists and tests to find out where it was. I didn't have cancer, but cirrhosis. On Sun, May 2, 2010 at 12:12 PM, wrote: > My brother had high iron and was a heavy drinker and ended up dying of > liver cancer. I don;t know how much they were related.. > > > > > > Subject: Re: Hemochromatosis > To: livercirrhosissupport > Date: Sunday, May 2, 2010, 12:55 PM > > > > > > > Debbie and all > > Hemochromatosis is actually " iron overload " !! I'm attaching a website that > will help begin your research about it www.cdnhemochromato sis.ca/index. > php > > Science has spent so much time with the study of low iron, that it is only > recently that a researcher from Canada discovered the horrible effects of > " high iron " . When I was first told that I had it and did some research then, > I discovered that besides the fact that it can be a genetic disorder, it's > common amongst folks with Hep C. I doubt that taking iron pills as a young > adult affected this too much because I was sooo anemic that it was the only > thing that kept me functioning. > > The genetic part apparently comes from a Northern European background, > especially the British Isles etc. > My Dad has had high iron all his life and is 85 yrs old come next July. > Don't know and probably never will, if mine was suddenly triggered by the > HepC or was just hidden all this time. Helpfully, my menstruation probably > kept it from getting too bad, back when! > > Fortunately, mine does not give me much problem at all and neither does it > cause my Dad problems. I'm not even sure if any of my brothers have been > diagnoses and will have to ask the one that also suffers the HepC. Needless > to say, I try very hard to stay away from any foods that are high in iron!! > It'll also be interesting to see what level the high iron is, now that the > HepC virus has been kicked from my body. > > Of course Debbie, the absolute worst thing that your sister could be doing > is drinking!!!! Booze and a sick liver is a time bomb! I am a recovering > alcoholic and so very very grateful that I became sober 15 yrs before > finding out about my infliction with HepC and eventually the high iron. I > know for an absolute fact, that if I had not been sober for those years, I > simply would not have been alive to even post this e-mail. > > Gloria > > I don't know to much myself. It can be caused from genetics and i am > getting checked. When we were very young children the family Dr. at that > time had us all on iron drops. So I am a llittle concerned for myself. But > my sister is an alcoholic also. So i don't know what to do. I hate it. We > were told she might have a couple years to live. I am filled with sorrow. it > hurts so bad. > I cry every day. I don't drive and she lives about 30 minutes from me. I > call her every day. She is in a skilled nursing home. Next month she goes > through many test at the Cleveland Clinic.. She doesn't even know she has > the blood disease. On top of all this she has a small anyurisn in her brain. > Our mother died from one when she was 53. Mom had her 1st anyurism when she > was 47. > thanks for mailing me. it means a lot! > Hugs......Debbie > > ------------ --------- --------- ------ > > Group Email: livercirrhosissuppo rtyahoogroups (DOT) com > web address: > http://groups. yahoo.com/ group/livercirrh osissupport/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2010 Report Share Posted May 2, 2010 I want to thank all of you for your support. God Bless all of you!!11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2010 Report Share Posted May 2, 2010 Well, let's just face it!! If you add a great deal of booze to an already compromised liver due to iron overload - something is going to explode. Did your brother have the cancer anywhere else than the liver?? Makes a great deal of difference as well. Gloria ________________________________ My brother had high iron and was a heavy drinker and ended up dying of liver cancer. I don;t know how much they were related.. ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2010 Report Share Posted May 2, 2010 Not that I know of. We think he had the liver cancer for quite awhile and was aware of it but told no one. He was gone a couple of months after we found out about it. ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2010 Report Share Posted May 3, 2010 I am sorry that your brother had to die in such a way!! I've always said that liver is the one cancer that I would never want to have. Well, bingo!!! Just been a month since my surgery for the two tumours. Was your brothers liver cancer primary to the liver??? Or, had it metastasized from another source?? Gloria ________________________________ Not that I know of. We think he had the liver cancer for quite awhile and was aware of it but told no one. He was gone a couple of months after we found out about it. ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2010 Report Share Posted May 3, 2010 This is what I have and I didn't drink. It was passed thru 2 defective genes. Thanks for this day and for my tomorrows .  Love, Lyncia   ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 Only time my hemochromatosis or ferritin levels acted up, was during Tx. Lot's of blood letting. Go off interferin, no problem, for me anyway. > > ------------ --------- --------- ------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 Only time my hemochromatosis or ferritin levels acted up, was during Tx. Lot's of blood letting. Go off interferin, no problem, for me anyway. > > ------------ --------- --------- ------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 Happy Mothers Day to all the mothers out there.  Dave ________________________________ To: livercirrhosissupport Sent: Sun, May 2, 2010 3:06:19 PM Subject: Re: Hemochromatosis  Untreated high iron (hemochromatosis) will/can lead to liver cancer. That is what happened to my uncle because it wasn't diagnosed early enough. Ordinarily liver cancer will have come from some other area of the body according to the doctor who diagnosied me with cirrhosis. He was sure when he found out I had a liver problem that I had cancer and sent me through a whole bunch of other specialists and tests to find out where it was. I didn't have cancer, but cirrhosis. On Sun, May 2, 2010 at 12:12 PM, <weighmassbcglobal (DOT) net>wrote: > My brother had high iron and was a heavy drinker and ended up dying of > liver cancer. I don;t know how much they were related.. > > > > > From: Gloria <gadamscanyahoo (DOT) ca> > Subject: Re: Hemochromatosis > To: livercirrhosissuppo rtyahoogroups (DOT) com > Date: Sunday, May 2, 2010, 12:55 PM > > > > > > > Debbie and all > > Hemochromatosis is actually " iron overload " !! I'm attaching a website that > will help begin your research about it www.cdnhemochromato sis.ca/index. > php > > Science has spent so much time with the study of low iron, that it is only > recently that a researcher from Canada discovered the horrible effects of > " high iron " . When I was first told that I had it and did some research then, > I discovered that besides the fact that it can be a genetic disorder, it's > common amongst folks with Hep C. I doubt that taking iron pills as a young > adult affected this too much because I was sooo anemic that it was the only > thing that kept me functioning. > > The genetic part apparently comes from a Northern European background, > especially the British Isles etc. > My Dad has had high iron all his life and is 85 yrs old come next July. > Don't know and probably never will, if mine was suddenly triggered by the > HepC or was just hidden all this time. Helpfully, my menstruation probably > kept it from getting too bad, back when! > > Fortunately, mine does not give me much problem at all and neither does it > cause my Dad problems. I'm not even sure if any of my brothers have been > diagnoses and will have to ask the one that also suffers the HepC. Needless > to say, I try very hard to stay away from any foods that are high in iron!! > It'll also be interesting to see what level the high iron is, now that the > HepC virus has been kicked from my body. > > Of course Debbie, the absolute worst thing that your sister could be doing > is drinking!!!! Booze and a sick liver is a time bomb! I am a recovering > alcoholic and so very very grateful that I became sober 15 yrs before > finding out about my infliction with HepC and eventually the high iron. I > know for an absolute fact, that if I had not been sober for those years, I > simply would not have been alive to even post this e-mail. > > Gloria > > I don't know to much myself. It can be caused from genetics and i am > getting checked. When we were very young children the family Dr. at that > time had us all on iron drops. So I am a llittle concerned for myself. But > my sister is an alcoholic also. So i don't know what to do. I hate it. We > were told she might have a couple years to live. I am filled with sorrow. it > hurts so bad. > I cry every day. I don't drive and she lives about 30 minutes from me. I > call her every day. She is in a skilled nursing home. Next month she goes > through many test at the Cleveland Clinic.. She doesn't even know she has > the blood disease. On top of all this she has a small anyurisn in her brain. > Our mother died from one when she was 53. Mom had her 1st anyurism when she > was 47. > thanks for mailing me. it means a lot! > Hugs......Debbie > > ------------ --------- --------- ------ > > Group Email: livercirrhosissuppo rtyahoogroups (DOT) com > web address: > http://groups. yahoo.com/ group/livercirrh osissupport/ > Quote Link to comment Share on other sites More sharing options...
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