ESLD due to Hemochromatosis

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New Member

Date Joined May 2008
Total Posts : 17
   Posted 5/9/2008 8:02 PM (GMT -6)   
Hi, I am new to the forum, and my mother has ESLD due to Hemochromatosis. For 6 years the doctors have been telling us that my mother has cirrosis due to years of binge drinking and she has not had a drink since the day she was diagnosed. Now in almost complete liver failure we find out that it is due to the blood disease called hemochromatosis. I have watched my mother go down hill fast. Just 2 weeks ago she was actually cleaning the house then 3 days later in a coma from her amonia levels. Her acites is so bad she begs for people to just turn her over in bed. This all happened very fast. She will be going for testing to be on the transplant list, but at this point it  is even hard to get her out of bed. She has told the visiting nurses to stay home because she "doesnt want to deal with them today" and I almost feel like she has given up at this point. It is all hard to see because just a couple months ago she was walking around and enjoying life. I just wanted to know if there was anyone out there who knew more about this blood disease that causes the liver to fail, because I myself and children have to be tested for it. The doctors say that it is too late for my mother, her liver has basically failed but not too late for the rest of the family. Any info or support would be awesome, I kind of feel alone in this battle.

Regular Member

Date Joined Mar 2008
Total Posts : 197
   Posted 5/9/2008 9:40 PM (GMT -6)   
Hi kipper04'
Welcome to Healing Well. I'm so sorry about your Mother.

My husband has Heriditary Hemochromatosis;heterozygote for C282Y and H63D mutations of HH. That means he got one gene from each parent. It showed up in some blood work in 2005, so he never knew he had it. His ferritin level was 1172 in May. Since that is the least of his problems now, the Drs. don't say much about it. I googled it and did some research on it before and found a web site and forum for it. I will see if I can find it again for you.
I told his brother & sister about it and they got tested. They both turned out to be negative for HH. Hopefully everyone in your family will also.
Try not to worry too much. They can help you live with it now. It's as easy as donating blood. That's what they do for it, drain off some blood to keep your iron levels on an even keel.


Pink Grandma
Veteran Member

Date Joined Nov 2006
Total Posts : 2445
   Posted 5/10/2008 1:06 AM (GMT -6)   
Hello Kipper04,

Welcome to HealingWell. I am so sorry that your mom has ESLD.
I googled Hemochromatosis, the first and second websites that came up had a lot of information about it.

There's alot of knowledgeable and compassionate people here with first hand knowledge of ESLD. So if you have any questions or need support you found the right forum.

Take care...........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

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