Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
I finally got the results from my liver biopsy, I have stage 3 cirrhosis. All of the ultrasound and blood tests looked like I had dodged any lasting damage but it is not to be. My ferratin level at it's peak was 6855 and I guess that's what did it.
All I can do is eat right, stay away from any alcohol and hope.
All I can do is eat right, stay away from any alcohol and hope.
I am sorry that you have to go through this. I was diagnosed with my cirrhosis about a year ago and nobody ever worked harder to get cirrhosis than I did. I was a regular drinker and have been exposed to lots of radiation and other bad stuff from the heavy manufacturing industries.
I apologize for the length of this post, but since your pseudonym is Irony, you may appreciate it.
My profession was one that required constant travel and , due to its confidential and hazardous nature, try to avoid any type of friendships or other attachments.
I have a wife and six children. The four older children have since moved out and don't even know me. After I got too sick to travel, the corporation that had used me to do their dirty work for so many years dropped me and I became very depressed. I was ready to die.
After twenty years on the road I was stuck at home with no income and I was going nuts from being in one place for so long. My new job is to get my two young daughters up for school. Feed them and help with homework, etc. I have become the housewife.
The point and the irony of the situation: If I had died a year ago, my life would have been wasted. No one would have cared. Not even me.
Now I know my two little daughters and have a real relationship with my wife. I hope to get to know my older children too if they are willing. It is never too late to make each moment have real meaning for yourself and others. I hope this helps and I hope you get to feeling better.
I have it too, so you're not alone. I saw in your profile that you're a member of the cirrhosis discussion group -- me too. You can get a lot of good info there. When I was in the Army doing crazy things, the group I was with used to tell me "it ain't nuttin' but a thang - you'll be alright!" Well, I kinda look at this the same way. WE know what we have, WE know what we have to do, and "it ain't nuttin' but a thang". We'll be alright!! Take care brother - welcome to my foxhole.
Rick
I am sorry to hear you have Cirrhosis, but glad you found it.
Roadweary, I too was a 20 year "road warrior" and understand missing birthdays, anniversaries, concerts and all of the things that make a father. I shut it all down when my wife became ill and have made a great relationship with my daughters since. Part of this cirrhosis is HH but part, I am sure, is the drinking that I did after the death of my wife. I crawled into a wine bottle and stayed there for a few years.
Things just keep on getting better and better, don't they?
I have been trying to dodge a biopsy due to the risks associated with invasive procedures (and I don't like pain). My Doc said he would treat me the same with or without a biopsy. What to do... what to do...
Irony, so sorry to read of your plight - I was one of the lucky ones, no liver damage (ferritin 900+), but it seems to have got my heart instead.
Hang in there...
Mine was found through a CT Scan. My Gastro doc said this was a better way to go than the biopsy, because its noninvasive and gives an entire picture of the liver. She also told me there may be no indication of liver disease e.g. elevated liver ensigns, enlarged liver etc. and it could get progressivly worse without any outward symptoms. That was another reason to have the scan. So it would be prudent to check it now. I now get a CT every six months. I would definitely get it checked at least to get a baseline. BTW my father also had colon cancer, so we are probably predisposed to cancer anyway and need to be a little more cautious. Take care.
Rick
I did have the old PCP order a liver MRI in May (before I quit going to them) & then 2 weeks later I had my appt with the gastro Doc. The MRI showed "enlarged liver with diffuse density. The liver is significantly enlarged compared to 2006". The liver enzymes have been slightly elevated over the past 15 years but in March 2010, my liver enzymes were double & triple the upper end of normal and THAT's when I challenged the old PCP. I started doing my own research... found the correlation between elevated liver enzymes & enlarged liver... saw the term "HEMOCHROMATOSIS" .. compared the symptoms and KNEW that's what I had. Changed PCP's saw that gastro & was diagnosed, then started with the hemotologist! All of that, the ultrasound, the MRI, changing Dr's, seeing the gastro, having all the labs and I did my own blood donation in May. I saw the hemotologist in June and had my 2nd phleb the same day.
I have worked in the medical field for 29 years and I KNOW we have to be our own advocate. That's the ONLY reason I have gotten this far!
Thanks again!
Donna