What exactly is auto-immune hepitatis and is it contagious?

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RainingInMyHead
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Date Joined Sep 2007
Total Posts : 1
   Posted 9/8/2007 6:16 PM (GMT -7)   
I am new to this type of forum, but I just needed to vent. My father is 53 years old, he has End Stage Liver disease, auto-immune hep, cirrhosis, congestive heart failure, as well as an annuerysm in his stomach. Hospice has now been called in, and 6 months ago they gave him 6 months to a year to live. I was wondering if anyone could explain to me what auto-immune hep is and how he may have gotten it and also whether it was contagious or not. I also was wondering if any one out there whose been through this: how can you tell when the end is comming? He is suffering so much and in so much pain, he just wants a way out. He has been praying that God will either heal him or take him home. It is so hard watching him deteriorate day after day, along with a mother who is mentally retarded and also has alot of health problems... I myself have just had a son who is now five weeks old and I feel like I'm loosing my mind having to deal with all this.

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 9/8/2007 10:18 PM (GMT -7)   
Hello Raininginmyhead, welcome to Healingwell. I am so sorry about your Dad and Mom. It has to be very hard. I'm not sure exactly auto-immune hep is. My husband had Hepatitus C. I can tell you a little about the end though. With my husband, he also deteriorated each day. He woke up one day very confused. His ammonia levels must have shot up over night. Nothing worked to bring them down. By that evening he couldn't get out of bed and was in a coma. By noon of the next day he had very labored breathing. It progressively got worse. He hung on until 12am that night for his daughter to arrive from out of town. As soon as she held his hand he past away. I know that comatosed people can hear what you are saying to them or in front of them. When his breathing starting getting labored I started telling him that his daughter was on her way to hold on if he could. I kept repeating it to him for 12 hours. For him to died at the exact moment of her taking his hand was no coinsidence. He could hear me and her to the end.
Try to savor every minute you can with your dad. Hang on to your son. Let him help you get through this terrible time. My granddaughters were my saving grace during that time and still are now. Hang in there. My thoughts and prayers will be with you. Pink Grandma

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 9/9/2007 2:14 PM (GMT -7)   
Raininginmyhead, welcome to the forum. If you will go through some previous pages here, you will find some info on AIH. I noticed threads on pages 2 and 5. We do have people with AIH coming here, but none has posted very recently. You can also try googling autoimmune hepatitis (www.Google.com) for more comprehensive info. The American Liver Foundation's web site should also have some info. From what you describe, AIH is the least of your dad's problems.

Remember to take care of yourself and your new baby son, first and foremost!

Hugs,
Connie

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/10/2007 3:35 AM (GMT -7)   
Hi Raininginmyhead

Welcome to the forum. I am so sorry to hear about your father and the problems he is having. I do have autoimmune hepatitis and can tell you some of the problems that it causes, however the cause of this disease is not really known. Much like other immune disorders, such as lupus, etc, there appears to be a genetic link to some people getting them and others not. If you are worried about it being contagious like other forms of hepatitis, the viral or bacterial kinds, it is not. So please don't worry that your baby may be in danger of anything in regards to this.
Apparently you can have autoimmuone hep for years without it showing symptoms or having any problems. For me I began experiencing problems about five years ago and was diagnosised with AIH almost two years ago. Fatigue for me was the primary problem, however, there are many other problems that seem to be different for everyone. Please take Connie's advice and search out information on AIH.
Please keep your mind at ease about it being contagious. My father also passed away for congestiive heart failure four years ago. It is a horrid disease and my heart goes out to you and your family.

Will keep you in my thoughts and prayers.

Lucy

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/10/2007 3:38 AM (GMT -7)   
Connie and Pink Grandma

Just wanted to say a quick hi to both of you. I haven't been able to post due to computer being down and finances didn't allow me to get it fixed quickly. Am sure both of you understand with medical bills etc, how that can happen. Hope both of you are doing well.

Connie I hope that things have really improved for you since your last surgery.

Will keep you both in my thoughts and prayers.

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/10/2007 10:50 AM (GMT -7)   

Thanks, Lucy!  Good to have you back!   :-)

Hugs,

Connie

 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/10/2007 7:16 PM (GMT -7)   
Lucy I am doing okay. Thank you for inquiring. And boy do I know about the finances. Still getting bills for my husband. Have a good evening ........... :-) Pink Grandma

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 9/20/2007 2:59 AM (GMT -7)   
RainingInMyHead said...
 I was wondering if anyone could explain to me what auto-immune hep is and how he may have gotten it and also whether it was contagious or not.
 Welcome to the Forum RainingInMyHead,
I have not visited the forum for several weeks, after being quite a regular for over a year. 
I have AIH.  It occurs when the body rejects it's own liver.  It is a problem with the autoimmune system; I believe some people, often a family connection, are predisposed to autoimmune diseases and if the conditions are right, the disease manifests itself.   It does not have obvious symptoms until there is significant liver disease.  I had cirrhosis by the time I was diagnosed in May 2005. Medication is keeping my AIH under control; fortunately I do not have the other complications your father is suffering from.   AIH is NOT contagious. 
I hope your father is able to be comfoprtable for the time he has left.  My prayers are with you both.
Marg

 


SuperMom
New Member


Date Joined Sep 2007
Total Posts : 1
   Posted 9/23/2007 5:22 AM (GMT -7)   
Hello Room!  I'm new here today and no some about AIH but have questions too!  My mom about 10 years ago was diagnosed with AIH which was very hard on all of us.  Mainly all it is, is the immune system attacks a organ and in this case the liver.  It is not something you can catch from someone.  A year after my mom was diagnosed she had a liver transplant in Omaha Nebraska.  That was 8 years ago this past April. After the transplant she has had many complications.  I feel I shouldn't complain since God has givin me 8 more years with her.  Its so hard seeing her ill all the time.  Our last major comlication was her amonia levels had gotten extremely high and a year ago this September she my dad found her in a coma stage in bed.  Ususally this is a sign her liver is failing once again.  God showed us his strength and proved the doctors wrong as all her liver counts came back good.  Mom takes lacutose and is suppose to be drinking 4 bottles of water a day.  These past few weeks my mom has started acting confused.  I keep asking if she is taking her meds. and she says yes.  She is only having about 1 bowel movement a day.  What is the next step I want to contact her doctor but she gets angry when we say that.  Does the angryness occur along with high amonia levels.  We no her digestive system doesn't work correctly and this somewhat has to do with the blocked portal vien but should the lacutose be doing its job or is there something else that she could be given?

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/24/2007 6:15 PM (GMT -7)   
Hello SuperMom! Welcome to HealingWell. I am sorry about your Mom. My husband had ESLD to to hepatitus C and cirrohsis and took lactalose. His doctors kept readjusting his dosage as his amonia levels went up and down. They only wanted him to have no more than 2 bowel movements daily. If he went down to 1 a day his ammonia levels always went up. And yes high ammonia levels can cause anger and even aggression. There is a pill that they can give some patients it's called Xifaxan. Doctors give to some patients along with the lactalose and some patients without the lactalose. I think it depends on how damaged the liver is. It is worth your mom asking her doctor about. Have a good evening. :-) Pink Grandma

ninjared
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/26/2008 9:30 AM (GMT -7)   
my hubby has been sick for one 2 years, and has been diagnosed with aih recently, he has been in icu several times with renal failure and internal bleeding, the dr. says the liver puts out an enzyme that clot the blood and his is not putting it out because of the aih. Has anyone had this problem with aih? He also has had to have dialyses a couple of times due to the renal failure. ninjared

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/26/2008 8:34 PM (GMT -7)   
Ninjared, Welcome to the forum. I'm sorry that I can't help with your question, but there are many people here that should be able to answer your question. I will pray for your husband.
Butterflythree
 
There is always hope!


ninjared
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/27/2008 8:21 AM (GMT -7)   
Thank you so much Butterflythree, this is a very seriuos disorder and I pray for everyone that has it, Hubby has even been to U.C.L.A. and was diagnosed there and put on a transplant list, so we really don't know what the next step is from here. He was in the hosp. from Dec. 22 til Jan. 4, went back in hosp. Feb. 7 and is still in and we have no idea when he will get out this time, dr. even had me call his family in, said if they wanted to see him alive, they need to come. Right now we have a lot of prayer lines going and I will add you to the list. Tanks again, ninjared

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/27/2008 7:53 PM (GMT -7)   
Ninjared, Welcome to HealingWell. I am so sorry about your husband. Hopefully he will get a transplant soon. I believe that with any of the liver diseases the damaged liver gets to the point where it affects the blood clotting ability.
Others may have more information about it for you.
Take care .........Thoughts and prayers.
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.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 2/28/2008 3:40 AM (GMT -7)   
Hi ninjared and welcome to the forum.
I am very sorry that your husband has this or any other liver disease. I too have AIH and you are right that it has serious complications that can come with it, failure for blood to clot normally is just one of many. As your immune system attacks your liver and damages it, it no longer functions appropriately as is the case with other liver diseases. It also can attack the bile duct system and can cause ia lack of production in bile salts which are necessary to allow your body to absorb the nutrients, so anemia and other depletion of other needed minerals are of concern. Some of the medications that I that for the AIH also can cause problems wih blood clotting, specifically prednisone. I don't know if your husband is taking that specific medication, however it certainly has it share of problems that can come with it also,

I pray that your husband recovers from this hurdle and is home soon. My thoughts and prayers and with him and your family.

Lucy

ninjared
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/28/2008 7:30 AM (GMT -7)   
Thanks so much for your prayers and caring, his dr. asked me yesterday if he had gotten his social security dissability and said he hopes he gets it soon because he doesn't think he has a long time left, he has had me call the family in 2 times now. The hospital stays are getting longer stays and at least once a month now. He is hoping to come home on Monday, but will see, he has been in 3 weeks today. I am praying for everyone who has this disease, and please keep the prayer lines going.

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 2/29/2008 4:13 AM (GMT -7)   
Have you contacted an attorrney to help getting his SSID benefits. If not you should they may be able to speed up this process for you.
I will continue to pray for you and your family that you make it through this most difficult time.

Lucy

ninjared
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/29/2008 6:48 AM (GMT -7)   
Thanks so much, and we do have an attourney working on this
so hopefully he will get his ss soon. The att. sent in for a reconsideration and we have sent letters from 3 different drs. and each one says that he probably wont live a year, if that long.
thanks for the prayers and I am praying for everyone who has this desease, we had never heard of it til a few months ago.
ninjared.

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 2/29/2008 10:12 AM (GMT -7)   
ninjared, hi and welcome to the forum. I am so sorry that you and your husband are facing such tragic news. Always keep faith and hope. No matter what when everything is said and done that is all we have. Bleeding disorders are very difficult to manage so as you know this is a very serious problem for him. My thoughts and prayers are with you both.
Shelly

pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 3/2/2008 5:41 PM (GMT -7)   
Hi!  I just joined!!  I have aih and chron's  disease.  Plus high grade colon dysplasia which is the stage just before colon cancer.  My aih was diagnosed one year ago when I developed jaundice.  I am on prednisone and cellcept, with symptoms of fatique and nausea basically.  I want to support the other members, as it sure gets lonely having a chronic illness.  I have supportive friends, but they cannot take the place of people like you guys who are going through chronic illness themselves.  I can try to answer crohn's disease and aih questions, as I do have a medical background.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/2/2008 7:23 PM (GMT -7)   
Hello Pix and welcome to HealingWell. Sorry that you have AIH and Chrohns. And yes it is good to be able to communicate with people who themselves understand what you are going through. I may be partial but I am convinced that this is one of the top forums for liver disease. I take that back..... it is the tops. We do have a bunch of very caring individuals who either have one form the disease them selves or has a loved one with it. We try to share with each other any knowledge and support that we can. Welcome again and 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.


babydoll1123
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 3/28/2008 6:00 PM (GMT -7)   
yeah  Hello everybody.  First of all let me start by saying God Bless All of You and You Loved Ones!!!!  I will include all of you in my prayers.  This is my first time posting and I just joined today as well.  I did not know about this site until today.  I was diagnosed with supposed viral hepatitis when I was 16 years old along with ITP.  It was so severe that they had to remove my spleen.  That helped me for a while, but in the last year and a half I was informed that I actually had Autoimmune Hepatitis and ITP.  They preformed two different biopsies and found that I also have early signs of Cirrhosis.  Then on September 7, 2007 I was admitted to the hospital with bleeding ulcers.  The nurse on duty that night was informed that I could not have Dilaudid for pain because I had had an allergic re-action to it before during the biopsies.  She insisted on giving it to me against my wishes and my husbands.  I passed away around 4:00 am that morning due to respitory failure and Dr. Malik brought me back.  I was in ICU for two weeks fighting for my life everyday because of complications brought on by the Dilaudid.  I was finally released on September 30, 2007; but all of my muscles had practically disappeared.  I could not even get up the four steps into our home, my husband carried me.  I finally built my muscles back up and I am getting around just fine now and I am trying to return to work as a Paralegal, but now my platlets are getting low again (68,000).  Not to bad; but my weight is also down to 89lbs and I am 5 foot 1.  I am trying to gain weight, but I have to go back to Dr. Malik on Tuesday to see where we go now.  Thanks for listening, I just needed to get that all out.  God Bless You All!! 

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/28/2008 6:24 PM (GMT -7)   
Hello Babydoll1123 and welcome to HealingWell. We are so glad that you found us also. We do have members with AIH or their loved one. So hopefully someone will jump on soon.
Sounds like you had a very rough time. Glad you're doing better now.

We have a great bunch of members here.

Take care....thoughts and prayers..........
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.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 3/28/2008 7:43 PM (GMT -7)   
Welcome to the forum babydoll1123. That is such a tragic story. Are you considering a law suit? I will pray that your strength returns and you are able to gain the weight you need to.
Butterflythree
 
There is always hope!


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 3/29/2008 4:01 AM (GMT -7)   
Hi Babydoll1123 and welcome to HealingWell. After reading your story I felt some real anger at that nurse. I am so sorry that someone like that took care of you. I can not even imagine giving a patient ANY medication that they tell me they are allergic to. This is an example for everyone reading this post of what NOT to do. Never-ever take a medication that you have had an allergic response to in the past. Absolutely refuse to take it and if the nurse insists DO NOT DO IT! Ask to speak to a nursing supervisor and tell the supervisor what is going on. Also, make sure to report any such behavior to your DR. Also, I would like to add that in this day and age all patients while hospitalized (and able to) ask what meds they are taking with each dose. Medication errors happen all the time so ask first. I am sorry that you had that experience and glad that you survived it. I apologize on behalf of all medical personnel.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 

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