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02/07/2012 12:16 PM

New here!(page 5)

ama2six
ama2sixPosts: 27
New Member

Actually, I think my husband's hemochromatosis diagnosis was accurate for two reasons: 1) His diagnosis came before he actively began drinking 2) Hemochromatosis is definitely in his family. His brother and a number of cousins have all been diagnosed with it.

Within the past few years, my husband became aware of the synergy of hemochromatosis and alcohol but did nothing about it. I think he was too deeply addicted to be able to pull himself out of the giant hole he was in. It took a catastrophic event to wake him up. I just pray it's not too late.

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02/07/2012 02:30 PM
ama2six
ama2sixPosts: 27
New Member

Elizabeth,

I think I'm seeing as many loved ones signed up for this site as actual cirrhosis patients. No wonder, because in our own way, we are suffering too.

During the past year, there have been times I feel as if I'm a hard-hearted Hannah, just asking the questions needed at the time, processing information in a robotic-like fashion. I've been aware of the five stages of grief when one is faced with loss. I've told a number of people I feel I've been working through those stages for years. At first, it was because it seemed my husband's alcoholism was slowly destroying our marriage, then it was because I felt I was losing my own toehold. Finally, about a year ago, I got to the point of acceptance. I started doing a better job of taking care of myself, realizing I could not change my husband, no matter how hard I tried. In some ways, I had made peace with our situation; I had begun to understand the rules for the game we were playing.

Late October, 2011, the game completely changed; and I'm still trying to learn the rules. My husband took some alcohol-induced falls, breaking a number of ribs and puncturing one lung in the process. Over the course of the next six weeks, he was in two different hospitals and eventually landed in a skilled care center. By then I felt numb. I had gone over the scenario so many times in my head prior to its actually happening. It was as if I KNEW a medical crisis was inevitable; I just didn't know when or how it would occur.

The physical trauma brought on a rapid deterioration. Within three weeks, my husband had lost 50 pounds. He has been home since the first of December but struggles daily with effects of the cirrhosis. He now appears to have aged about 15 years. He is struggling mightily with insomnia. fatigue, and weakness. His appetite has returned and he has gained some weight. Oh, but we need to be vigilant about too much weight gain because that might indicate a return of the ascites.

I run the gamut of anger, pity, concern, hope, despair...how about you? It seems you have been at this "party" longer than I. And you are soooo much younger. I read about those who have developed cirrhosis for reasons other than alcohol abuse. I feel so sorry for them; they had no choice in this. Try as I might, I still wrestle with my anger, knowing my husband did have a choice. He could have chosen health. I know alcoholism is a disease, a very insidious one; but my husband refused to seek help when he still could have turned things around. Now he's not drinking, but it may be too little too late.


02/07/2012 06:21 PM
ruth8890
ruth8890  
Posts: 1181
Senior Member

Dear DeeZee - I'm sorry you have been and are going through all this. AO many people have replied I tried to keep up with who was saying what so I hope addressing yo with this question is appropriate. Innotanyone's replies would be helpful.

What exactly are "phlebotomies" (I now what a phlebotomist is as I was one) but not a phlebotomy. What is "hemocromotosis" and how do they test for this? I believe I understood from these emails that if Hemocromotosis is negative then it is "hemoCIDERous" - what is that and how do they determine it? Is it somewhere on my labs and I am missing it? Maybe these go by different names? They sound like special tests but what triggers the Doctors to think of doing that? I know "Hemo" is blood and "Itis" is inflamation but I'm really confused. Thanks all. Ru


02/07/2012 07:54 PM
SKRD1965
SKRD1965  
Posts: 25
Member

Just an update to say I am reading all the posts and trying to absorb all the information that you guys are giving. And I thank you all! After an hour on wait, I got an apponitment with a gastro. Friday the 17th..feeling very nervous, scared and all the emotions I know you have been through.

02/07/2012 08:23 PM
ruth8890
ruth8890  
Posts: 1181
Senior Member

That's great- the 17th! Let us know how it goes. And if you happen to hear anything concerning try puching a pillow and not a beer. Or better yet - maybe call your Primary Care Doc and ask for some Xanax to help with the anxiety. Remember though - #1 addictive drug on the market. Thinking of you! And Thumbs up to you! Ru

02/07/2012 08:42 PM
SKRD1965
SKRD1965  
Posts: 25
Member

Dawwww ty Ru....I have some xanax that my primary prescribed, have yet to take it. I am just going to try and be strong and face what comes my way. I am expecting the worst, but prepared for the best. I know either way I have a struggle, I know I have to put the beer away for good. I just have to find the way...I sahll keep reading and post when I find out some news. Thank you all, and the best of luck to everyone here.

02/08/2012 05:02 AM
ama2six
ama2sixPosts: 27
New Member

Ru,

Hemochromatosis is probably the most underdiagnosed disease out there. It is otherwise known as the iron overload disease. For whatever reason, the body cannot excrete excess iron, which then builds up and starts attacking various organs. If left unchecked, it can cause all kinds of problems, including cancer. Phlebotomies are simply the removal of blood. My husband has periodic blood tests to monitor his blood ferritin levels. I don't think that's a part of the typical blood workup; the doctor has to order it.

When he was first diagnosed, my husband had to schedule four phlebotomies, each typically withdrawing a pint of blood. The phlebotomies were spaced widely enough apart so there was less chance of anemia. Still, my husband was much weaker by the time he got to the fourth phlebotomy. At the time, he remembers trying to bike across the state of Iowa (!) and his legs would hardly move. Back in those days, he was in otherwise great physical shape and WAS NOT drinking.

My brother-in-law's hemochromatosis (yes, it's genetic) was even worse. He claimed there were times he set off the security bells at the airport because he was carrying so much extra iron around! I question the integrity of that statement, but sometimes the skin can start carrying a bronze-like tone because of the excess iron. My BIL has since died of prostate cancer at the age of 63, and I still wonder if his hemochromatosis was a factor in the onset of the cancer.

A number of family members have been diagnosed. Now we find out both my daughter and her husband are carriers. That means they'll have to watch their children carefully as they grow. Usually women do not have any problems until after menopause because they normally rid the body of the excess iron each month during menstruation. The only way to medically control it is through bloodletting, so to speak.

We've been dealing with hemochromatosis for years. It's part of who my husband is. It doesn't have to affect general health at all. Usually, it's prudent to limit the intake of iron, both through diet and supplements. My husband's hemochromatosis was pretty easily controlled so we never had to take any extreme measures. In the past few years as I've started doing more research about alcoholism and its effects on the body, I've become aware of how both alcoholism AND hemochromatosis are risk factors for cirrhosis. If you do a google search and read beyond alcohol as a risk factor, you'll probably see the word hemochromatosis. It's just one of those things most people skim right over because it doesn't mean anything to them.

At one point I heard that hemochromatosis is extremely prevalent in those people of northern European ancestry. As many as 10% of that population might actively have the disease or be carriers. DO NOT quote me on that because I have not verified that recently. Suffice it to say, even doctors overlook it. Fatigue is one of the symptoms, and who doesn't have fatigue now and then? If you have any concern, ask your doctor to order a blood ferritin test and mention hemochromatosis.

Deanna


02/08/2012 08:34 AM
DeeZee
DeeZee  
Posts: 55
Member

Deanna is correct about the hemochromotosis. It is a genetic disease. The hemociderosis is the collection of iron usually from alcoholism. The point I was trying to make is that in my husbands iron problem was self induced, not genetic. He had so many pints of blood removed over the years he could have started his own blood bank! Sorry to say the blood banks are not allowed to use iron overload blood
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