Seeking Information

March 5, 2004

e, I was diagnosed with AIH in March, 1999. My liver enzymes were critically high and my biopsy showed stage 3 with some cirrohsis. I was given prednesone and then after a time imuran. My advice is to get lots of rest, eat very good food and try to be positive. My health now is excellent. I was on prenesone for about 18 months and will take imuran the rest of my life but it took over two years for my doctor to even be able to tell me that I would make it so I have much to be thankful for.

I would encourage your friend to just give herself a chance to recover or to see where this disease takes her. Not everyone with this disease has to have a transplant or dies. I do know how she feels, in our four state area, there were only four of us with AIH and two died within the first three months of my diagnosis but I just refused to dwell on that. I did exactly as my hepatologist said...he is very well known in his field...and I did not push myself to do things that I knew I could not. Fatigue was really bad and I really have very poor memory of the first two months of my diagnosed illness but, here I am, feeling good and doing most of the things that I want to do.

Take care.

Bobbee

March 5, 2004

Thank you so much for your feedback and information. I am sorry to hear that you are fighting this frustrating and scary disease but I am encouraged to hear the strength in your words and the thrilled that you are headed in the right direction health-wise. You do not seem beaten down and defeated, but like someone who enjoys life, despite the added challenge.

My friend truly hit a wall yesterday and lost her grip on the whole situation. I have refused to see the worst of this and continue to hold out hope that her body will respond well to the drugs and she will continue to be the wonderful person that I care about. I am realistic about how serious a disease it can be, but don't believe you can go forward believing there is no hope when you haven't barely started to fight. I can agree with her when she says that things will never be the same again. They won't. At this point I am more afraid of what this is doing to her spirit than her body and worry that she will give in to the despair and stop enjoying life. It seems like right now, the thought of always worrying about what will happen next is the hardest part to cope with. She is 37, divorced and has no children, so she sees the disease as a wall that will prevent her from ever having a family (a husband and children). Unfortunately kids are probably out, but there is no

reason she can't have a meaningful relationship with someone. She feels like she will be unlovable inside and out and no sane person would want to take on her and all of her baggage. That could be true, but it certainly will be true if she believes it

Her heptologist has a great reputation here in Atlanta and thankfully has treated other people with AIH. His initial bedside manner hasn't been ideal. She got the news over the phone, was give a prescription and was told to make an appointment for six weeks from then. After a few days, she was overwhelmed with questions and worries. I don't think he really knows how to deal with a patient having a full blown panic attack. Telling her on the phone to relax and calm down wasn't effective as he firmly told her she would have to wait three weeks for their next available appointment to come in and go over her questions. Today was better. She forced her way into an appointment with her primary care physician, who turned out to be fabulous (despite not knowing much about the disease). The doctor talked with her for 30 minutes and they looked on the internet together. She told my friend she would help see her through this and help her understand it. This one on one (and very rare)

attention made all the difference and my friend came back to work a different person. Of course she was holding a prescription for Zanex, which I think empowered her to picture herself making it through the weekend, getting some sleep and crying less. While she was there I tracked down and scheduled for her an appointment with a psychologist. I was nervous she would be offended, but we had already discussed getting some professional help to sort through all of the emotions. She went willingly to the appointment and had another positive break through. She felt better when she left and was told that her coping skills were fine... but they would do her no good dealing with this. It will go against all of her instincts and she would need to learn new skills to manage all that was on her plate. An interesting point and reassuring that you she was not incapable of taking back control of her life.

There is a long road ahead. She started her prednisone on Monday and will be starting the imuran in a week and half. Again, I appreciate your response and wish you well as you go forward. Hang in there, fight hard and never give up hope.

eRmyers38@... wrote:

e, I was diagnosed with AIH in March, 1999. My liver enzymes were critically high and my biopsy showed stage 3 with some cirrohsis. I was given prednesone and then after a time imuran. My advice is to get lots of rest, eat very good food and try to be positive. My health now is excellent. I was on prenesone for about 18 months and will take imuran the rest of my life but it took over two years for my doctor to even be able to tell me that I would make it so I have much to be thankful for.

I would encourage your friend to just give herself a chance to recover or to see where this disease takes her. Not everyone with this disease has to have a transplant or dies. I do know how she feels, in our four state area, there were only four of us with AIH and two died within the first three months of my diagnosis but I just refused to dwell on that. I did exactly as my hepatologist said...he is very well known in his field...and I did not push myself to do things that I knew I could not. Fatigue was really bad and I really have very poor memory of the first two months of my diagnosed illness but, here I am, feeling good and doing most of the things that I want to do.

Take care.

Bobbee

March 5, 2004

e,

First, let me say that when I found out I have AIH, it was initially very scary and depressing. I have lots of other health problems, but for some reason liver disease was the scariest of all. Also, the thought of long term prednisone was not at all appealing because I know the damage prednisone can do. However, I also know that prednisone has saved MANY lives. The first couple of weeks I was on prednisone I cried more than I had in the last year or so. I think it was both the steriods and the realization that the AIH was something I would have to deal with for the rest of my life. My life would never again be exactly the same as it was prior to my finding out about the AIH. That's not to say that my life would never be 'normal' or fun again, just that it was forever changed with knowing that I have a potentially very serious chronic and progressive disease. Now, having said all that, once I got beyond the first couple of weeks, things got better. For one, the prednisone did make me feel better for a while. Prednisone is a double edged sword in my opinion. Sometimes it makes you feel better, sometimes it makes you feel worse. I will warn you that when they decrease the prednisone it is often VERY hard. My entire body hurt from head to toe for two solid weeks once the prednisone dose was below a certain point. I want to think it was when we went from 10 mg daily down to 5 mg daily, which was way too much of a drop at once. However, that's what the doctor told me to do so I did it. If I had to do it again, it would be tapered MUCH more slowly!

AIH is NOT a death sentence by any means. Nor it is a definite trip to the land of liver transplants. ly, once I got beyond the shock of learning that my 'perfectly healthy' liver had stage 3 fibrosis and that I have AIH, I realized how incredibly lucky I was that the AIH was discovered prior to the progression to stage 4 - cirrhosis! You may catch the sarcasm in my words. My previous GI kept insisting that my liver was 'perfectly healthy' and there was no need for a biopsy. That was despite liver enzymes going as high as almost 800 (about 25 times the normal limit) and my internal med doc insisting that I needed a liver biopsy beginning in Aug 02. The GI finally did a liver biopsy on Dec 27, 02. On Jan 6, 03 (only hours after my rheumatologist had told me how thankful she was that we had been able to keep me off of prednisone and keep my systemic lupus pretty well under control with only plaquenil) the GI told me that the biopsy showed that I have 'autoimmune liver disease' (he never called it AIH - that's what the biopsy report said), but that I was not to worry because the liver disease I have typically responds well to treatment and the treatment is prednisone and imuran (azithioprine). I burst out laughing! He must have thought I was nuts. I just thought it was so ironic that only hours earlier one doctor was saying how glad she was I didn't need to be on prednisone and now another doctor is telling me that I have to go on prednisone unless I want to have a liver transplant! I began taking 20 mg of prednisone daily on Jan 8, 03. I consider myself lucky because many have to start at a much higher dose. In only 2 1/2 weeks, my liver enzymes were near normal. By August 03, I was down to only 2.5 mg of prednisone daily and that's what I still take. I started taking 100 mg of Imuran around July 03 and I still take that. I've had no problems with the imuran at all. The first month I was on prednisone I stayed nauseated 24 hours a day. I have chronic pancreatitis so nausea is no stranger to me, but the prednisone definitely made it worse. I also had this horrible metallic taste in the back of my throat. So, instead of making me want to eat, the prednisone had the opposite effect on me. I actually lost weight the first month and I didn't gain it back until several months later. After a month, the doctors added protonix to my HUGE list of meds and it made the nausea MUCH better. For now, the AIH appears to be very well under control with just 100 mg imuran and 2.5 mg prednisone. My new and wonderful GI/hepatologist says I will have to take imuran for the rest of my life, but that sure beats the heck out of a liver transplant!

I found that getting all the facts and educating myself made dealing with AIH much easier. There is a wonderful book by Dr. Palmer, which can be ordered off the internet. I would highly recommend it. As a friend, I would recommend that you not try to minimize your friends worries about AIH. Allow her time to grieve for what she has lost. However, there comes a point where you must pick yourself up, do what must be done, and make the best of the hand life has dealt you. Give her time to grieve and then you may need to use a little tough love is she is wallowing in self pity. I promise you that while AIH and the meds we must take may at times 'suck', there are many things much worse and many liver diseases much worse!

This group has truly been a blessing for me. We are here to offer support and understanding, as well kindness and compassion. We have been known to offer a little 'tough love' when it becomes necessary.

Your friend is obviously very lucky to have you and believe me, she will need your support many times as she adjusts to her new reality of living with a chronic illness.

My life is different now than it was prior to AIH, but I cannot say it is really worse. I have learned the depth of my husband's love for me. I have learned who my true friends are. I have learned just how truly blessed I am. I have systemic lupus, chronic pancreatitis, type II diabetes, AIH, antiphospholipid syndrome (an autoimmune clotting disorder), and just found out Monday that I have an immunoglobulin deficiency and the gene for ankylosing spondylitis (HLA B27), but, unlike my sis, I don't think I actually have ankylosing spondylitis - an autoimmune disease that affects the spine and can actually cause the spine to fuse. My sis and I recently found out that we apparently got the autoimmune whammy from both our mother and our father because the gene HLA B27 and the gene my sis has for the immunoglobulin deficiency cannot both come from the same parent. I don't know if I have the same gene for the immunoglobulin deficiency as my sis, but it would make sense that I do. I see the same hematologist she's seeing on March 17th. She has to go monthly for IV immunoglobulin supplements for the rest of her life. Looks like we'll be going together! Oh, well, they take 2-3 hours so at least we can have a good gab session monthly! For my sis, it was pretty scary at first, but she had basically had upper respiratory and/or sinus infections for the past six years that never totally cleared up. She's had two of the monthly supplements and is infection free for the first time in years! So, even though it sucks, we our counting our blessings that it was diagnosed prior to her getting some super infection that ended up killing her!

So, once you've gotten over the shock and allowed yourself a chance to grieve, it is basically a matter of how you perceive things. You can spend the rest of your life feeling bitter, sad, and sorry for yourself, or you can be thankful that there are meds that can help. Even thankful that liver transplants are available if it comes to that. Although, Lord knows I normally don't even allow myself to think that facing a liver transplant is a possibility. I so admire those in our group who have had a transplant and then go on to live their life as close to 'normal' as possible. We even have several who have had two transplants! Boy, talk about a tough spirit!

Well, gotta get off the computer. I'm beat and have a very busy day tomorrow. My daughter is home from college. We have an appt early tomorrow for her first fitting for the alterations on her wedding dress. We are then going to pick out and order her veil and head piece. We hope to go by the shoe store and pick out her shoes for the wedding. At 2 p.m., we'll go to her second (of 5) bridal shower. After the bridal shower we have to go by the seamstress's house that is making the bridesmaids dresses so we can see how they are coming along and decide how many of the beaded applique overlays we need to order. Geez, I'm tired just thinking about it!

Take care and welcome to our group.

March 6, 2004

Well said, ! Some people have the knack of

putting things so clearly into perspective! I have

missed hearing about the wedding! Any more details?

Kathy

--- Weston <karenw@...> wrote: > e,

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March 6, 2004

Hi :

You are so right!!! About life, and what we have now. Let's count our blessings. Let's try and live life to the fullest. It is difficult at times., but, our attititude and positive outlook of life is important..

We just found out this morning, Cliff's friend passed away. In July , gave , 4-6 months. He was here in October, watching the Red Sox with us.

He had a good outlook, positive. For what he knew, about his terminal cancer, he was amazing. He lasted 2 months longer.... Cliff spoke to him 2 weeks ago. I think it is much worse for his family and loved ones,.. can't imagine what his wife went through. was 39.

But, what you said about life is the truth. I wish everyone could have a good outlook like you and . I hope that I will be that strong with Cliff, and anything else in my life.

Everyone enjoy this day and each day. We all have our moments, as I do.

But, I think of all the great things in my life.

, and everyone here, are in our thoughts.

love,

Gaynel & Cliff

P.S. Thanks for listening everyone!

December 2, 2005

Hi everyone. My name is Lori and I have a soon to be 5 month old

(Dec. 12) whose name is . We have his , I guess you could call

it asessment, appointment with the Craniofacial team in Miami, FL on

the 13th of December. I would appreciate any information as to what

will be going on during this appointment. I have been told that it

will take about 4 hours, but that is all they have said. I know that

it is going to be sad to see him have to go through whatever he needs,

but I know the end result will be worth it. I'm already getting ideas

and thoughts on how i want to decorate his band. Whatever I can do to

keep up the spirit, I'm all for it. I have really enjoyed looking

though this web site. Lots of information and the kids are adorable.

Thanks in advance for any insite I can get.

December 2, 2005