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Alpha 1 Antitrypsin Deficiency

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Posted 3/17/2006 3:26 AM (GMT 0)
Does anyone have or know anyone who has alpha one antitrypsin defiency.  Its a type of disorder that can affect your lungs and liver, and my husband was recently diagnosed with it.  His lungs are fine--but his livers not.  Just wanted to see if anyone out there knows anything about it.  Thanks
Posted 3/17/2006 3:31 AM (GMT 0)
My husband recently had a liver biopsy, and it showed his liver is a stage 3-4 liver scarring with a hyperportal vein and enlarged spleen--and he has ascites. Anyone know what any of this means? We just got the diagnosis of alpha 1 antitrypsin deficiency disorder last week, and because the disease is rare, the doctors can't tell us how much time my husband has left to live. Just curious to see if anyone knows what the prognosis is when ascites and scarring is present.....
Posted 3/17/2006 3:48 AM (GMT 0)
Hi concernedwife. Welcome to HW forum.I don't know what kind of cirrhosis . Sweetie noone can say how long your husband has,no way of knowing at all.I will tell you prognosis with any type of cirrhosis regardless of cause is the same. It is not favorable.The more scarring there is then the more cells that are dying. cirrhosis can be slowed but not reversed.Please browse thru the other posts here & join in the conversations. there are a lot of caring supportive people here & lots of tips for caring for the cirrhotic liver.Regardless of cause cirrhosis is cirrhosis.I am late stage3,early stage 4 myself. in stage 3 I was able to by the Grace of God stableize for 10 years before progressing again since last fall. to slow progression takes diet, rest Some supplements & Vitamins ( except A & b3 as these are toxic to the liver)Extreme caution must be used in many things. please go thru the other posts here you will find many valuable tips of do's & don'ts BUT please always check with your hepatologist before doing anything. this is critical!!!!.Many herbs are harmfull but you'll learn all this as you read 7 take part in things & ask questions. we will support you as much as we can. Does hubby have encephalopathy? What meds does he take now? My thoughts & prayers are with you & your hubby. later....
Posted 3/17/2006 5:54 AM (GMT 0)
Concerned, welcome to the forum. I found an alpha 1 support organization online for you. Here's the link:

http://www.alpha1.org/home/index.asp


Mods, there are no ads on this site that I could see. It appears to be a national nonprofit org.

There are other organizations for alpha 1, also. Just do a Google search to bring them up. On one site, I learned that alpha 1 antitripsin deficiency is a genetic disorder.

Lerie, does scarring always mean cirrhosis? I have lesions on my liver from the hep C, but no cirrhosis.

Connie
Posted 3/17/2006 6:07 AM (GMT 0)
Hi Connie, Yes scarring means cirrhosis. Scar Tissue is dead cells.Did you check the site out Connie for links to other forums cause that is a no no. I don't know if lessions are the same thing as scar tissue sweetie.I think lessions are differant.I'm really not sure but wouldn't lessions be more like sores or something?later....
Posted 3/17/2006 6:17 AM (GMT 0)
Lerie, I didn't see links to other sites; just links to subjects within the site, all pertaining to the alpha 1.

Lesions, as pertaining to hepatitis, are damaged cells. I remember the biopsy had said "no piecemeal necrosis." So I guess they were saying no cirrhosis. Scans and blood work I have had since then do not indicate cirrhosis, either. One of the criteria for having the TheraSphere is no cirrhosis. That is why there are so few who qualify, as they usually don't see this type of tumor without cirrhosis. I'm a rare bird. LOL

C.

Post Edited (hep93) : 3/16/2006 11:35:26 PM (GMT-7)

Posted 3/17/2006 6:23 AM (GMT 0)
Hi Connie, I'm glad you are rare bird lol.I hope you stay that way too the last thing you want or need is cirrhosis. Good Luck with all your tests hon. Damaged cells will need to be watched they don't die. if they do that will be the onset of cirrhosis. Have you thought anymore about a Hepatologist at some point Connie? Love & Hugs. later...
Posted 3/17/2006 6:38 AM (GMT 0)
I actually do have a hepatologist, but have only met with her once for about 40 min. My oncologist is also supposed to be an expert on liver disease. If they can shrink the tumor to an operable state, I would probably be given hep C treatments following recovery. But that's down the road. First things first, and right now it's the cancer.

C.

Post Edited (hep93) : 3/18/2006 12:42:52 AM (GMT-7)

Posted 3/29/2007 3:50 PM (GMT 0)

HI Everyone

I am just new to the list, and wanted to respond to a post that was written last March 2006.

by "concernedwife".

>snip<

Does anyone have or know anyone who has alpha one antitrypsin defiency.  Its a type of disorder that can affect your lungs and liver, and my husband was recently diagnosed with it.  His lungs are fine--but his livers not.  Just wanted to see if anyone out there knows anything about it.  Thanks

>snip<

I was diagnosed with Alpha-1`Antitrypsin defiency 2 years ago.

For more info. Please visit the Australian Alpha-1 association at www.alpha1.org.au

or my own web-page at http://www.myspace.com/gypsiejules  

Cheers for now

Justanotheralpha


 

Posted 4/1/2007 7:39 PM (GMT 0)
sad  

concernedwife

I have ESLD (end-stage liver disease) with ascites. I take 2 medications (diuretics) to control that. I'm not sure what you meant by a hyperportal vein - but it sounds like you mean portal hypertension. The portal vein from the small intestine is not able to deliver blood into the liver due to the scarring in the liver (cirrhosis). The blood keeps coming though, & since it gets backed up trying to get into the liver, it enlarges nearby blood vessels resulting in varices (like varicose veins only in the esophagus). This can result in internal bleeding if one of those veins gets to enlarged & bursts. This is a life threatening situation & it is essential that you get to the ER as soon as possible. I also have an enlarged spleen which is a result of the liver damage.  

 

With ascites & portal hypertension, I would guess his liver cirrhosis is well advanced & is now decompensated. Unfortunately, the outlook is not good for this. I am now a liver transplant candidate because it is much too late to try & cure anything. As for how much time I have left, there is no way of telling. Depends on if my liver function decreases slowly or rapidly; so far, it seems to be slowly. 

 

A healthy liver can regenerate itself. A scarred liver cannot. 

 

Sorry, I wish I could paint a rosier picture, but based on what you have said, I can't. 

 

Doug      

Posted 1/23/2008 9:23 PM (GMT 0)

concernedwife said...
</b> it. Thanks

I am a lung-affected Alpha. There is an online support group where all those affected by Alpha-1 are welcome (the majority of the regulars are lung-affected) at the following email address:





I know there is a support list for those who are liver affected, but I can't find it right now.and ask for the liver list email address as someone whose memory is better than mine will reply.

All of these sites have information on Alpha-1 itself and some provide contact information for local support groups.

Mary Fran
Springville, Utah

Post Edited By Moderator (Pink Grandma) : 1/23/2008 7:40:47 PM (GMT-7)

Posted 1/24/2008 2:45 AM (GMT 0)
Mary Fran, You grabbed a very old post from almost 2 years ago. I doubt if "concernedwife" is still around as she hasn't posted since that post. I edited out all the links to the other websites. Thanks
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