Alpha 1 Antitrypsin Deficiency

concernedwife · March 17, 2006, 3:26am

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

concernedwife · March 17, 2006, 3:31am

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.....

lerie · March 17, 2006, 3:48am

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....

"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.

Valerie

hep93 · March 17, 2006, 5:54am

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

lerie · March 17, 2006, 6:07am

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....

"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.

Valerie

hep93 · March 17, 2006, 6:17am

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)

lerie · March 17, 2006, 6:23am

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...

"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.

Valerie

hep93 · March 17, 2006, 6:38am

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)

Julez · March 29, 2007, 3:50pm

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