Autoimmune.........

Discussion in 'Coping and Compassion' started by paigevz, Nov 11, 2006.

  1. paigevz

    paigevz <font color=blue>I work on the other side<br><font

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    This board could not have come at a better time. My dh has autoimmune hepatitis and has had for 4 1/2 years. We have been hoping for remission, and we thought we had achieved it. But we got the latest biopsy results Thursday and he is not in remission. In fact, it seems the rate of cirrhosis has sped up. He's also developed another liver condition called NASH, which can be improved with diet and exercise, but further increases his possibility of liver cancer.

    I have some wonderful friends on the CB, but it does sometimes seem like I'm bringing them down (even though they say I'm not) when I talk about it.

    I was shocked he wasn't in remission, even the dr. thought he would be. And further shocked that the disease is progressing even faster and that he has a new one on top of it. Currently, his only symptoms are fatigue and very bad muscle spasms, for which he takes tonic water. Sometimes it helps, sometimes it doesn't.

    I got very angry on Thursday, very sad Thursday night. I've been jumping between the two since. I am a teacher and had to teach Friday, so I kept it all in check. Some of my fabulous DIS friends emailed me through that day and it helped so much.

    We have two young sons. The smallest is too young for anything besides "Daddy's sick". The older we had some trouble with when dh was first diagnosed and he was in counseling then. I explained to him last night just that "Dad's liver is still sick and we need to make some changes in how we eat"..........he's angry again.

    I'm so happy to have this place.
     
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  3. Nala56

    Nala56 DIS Veteran

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    I so feel your pain. My dh has autoimmune kidney disease, first diagnosed 9 years ago when our dd was 5. The first couple of years were really hard, he was so sick and was on high doses of prednisone, dealing with the side effects of that drug were terrible. He is now on an anti-rejection drug that has been working very well. He has had a couple of bad relapses, but over all our lives are pretty much back to normal.

    We are so thankful for our wonderful and caring doctors. Good luck with your dh, hope he will be in remission soon.
     
  4. snowball22

    snowball22 <font color=teal>Lovin' Disney<br><font color=red>

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    PaigeVZ, did your dh get the autoimmune hepatitus from the Hep vaccine or did it just come on by itself?
     
  5. paigevz

    paigevz <font color=blue>I work on the other side<br><font

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    By itself. As far as I knew, that was the only way to get it.................his body just started attacking his liver. His mother has it as well, so the docs are quite interested as they've never established a hereditary link. But she went into remission very quickly and still is.
     
  6. Mackey Mouse

    Mackey Mouse <font color="blue">Me read the Navigator? I don't

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    Paige.. I am so glad you have a place that you can come and talk about your husband's illness...and it seems you are not alone in this disease.. I am sitting here kind of teary eyed thinking something good will come of this board as we will help each other through and will never feel that we are bringing anyone down, but rather bringing each up with hugs and knowledge..

    Knowledge is power and if we can help each other with our experiences, that is awesome..

    Hugs
     
  7. minkydog

    minkydog DIS Cast Member

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    I know those feelings. :grouphug: My DH has been battling an autoimmune disease which isn't usually too bad. Unfortunately, his body didn't read the book and the disease has invaded his lungs, brain, and heart and is working on his joints. Just about the time we think he's doing pretty well, something else happens :confused3 It's scary and maddening and totally NOT FAIR :furious:

    Here's one more hug for you :grouphug:
     
  8. paigevz

    paigevz <font color=blue>I work on the other side<br><font

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    Yes, totally NOT FAIR. :grouphug: back. Thanks.

    We're just very disappointed he wasn't in remission, and now back to thinking about what will happen. How to plan for anything? His cirrhosis is now moderate. When might it get to the point that he's sicker again? He was SO sick when he finally got him diagnosed. They gave him 5-10 years before failure without remission. So it's been 4 1/2. I don't think anyone gets how scary it is. I mean, just how freakin' scary. Like when a truck moves into your lane on the freeway abruptly..............but all the time.

    And it's so slow...........and people begin to think you should be used to it. The counselor at my school told me the last time he was having more symptoms, "Well, we knew it'd be up and down." Okay, but KNOWING and DEALING are two different things.

    Just needing to vent a little. :blush:
     
  9. minkydog

    minkydog DIS Cast Member

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    I think this sums it up well. Other people don't really get how draining it is to live this way. We have had to have some of the most difficult conversations in the last 3yrs and at a much younger age than any of our friends. We have had to make our wills and power of attorneys "just in case". We've had to tell our then-17yo to "say what you need to say" because Dad may not live to see morning. Really rough stuff. And then dealing with the daily side effects of medication--3yrs of high dose steroids can be down right ugly.The situation is complicated by the fact that we also have a mentally handicapped child who needs care 24/7. My DH(the sick one) lives in fear that *I* will die and leave him alone.He absolutely cannot care for Christian alone for more than a couple days. It's too exhausting.

    I find the mental fatigue to be one of the worst parts of dealing with a chronic illness, both for me and DH. It's the elephant in the room, always. When people ask, "How's he doin'?" they don't want the real run down. But if I say, "He's doing well" they think he's cured. "Doing well" just means he's not in the hospital this week. "Doing well" means he can breathe without oxygen and can throw the ball to our dog. DH lives with constant chest pain and shortness of breath. His lung numbers are less that half normal capacity. How do they think he'd feel? :confused3 But of course, they have no idea. I have to let it go.
     
  10. Christine

    Christine Would love to be able to sit on

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    What, exactly, does your DH have?
     
  11. paigevz

    paigevz <font color=blue>I work on the other side<br><font

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    Yes. And that is hard, to let it go. Mine was on 2 1/2 years of high dose steroids before he could go with just his Imuran and a synthetic bile. Some of the changes in his brain done by the chemical build-up before he was diagnosed, were permanent.

    I can't get people to understand why we turn down invitations. The fatigue is constant. He works, every day. So that's all he does. Once he gets home, he's tired. He's in bed before 9, before the kids. He's too darn tired to go to the BBQ or the party. It just insulates us even more. And because he's working, they think he's okay, too. I think he still works because he needs to, to keep himself busy. He's the only one of his doctor's patients with this that does still work.........because when they go to schedule appointments, they're always surprised when he mentions checking work schedules.

    Yours is much more advanced than mine. :grouphug: I know it must be so much worse than where we are right now.
     
  12. princess sparkle p

    princess sparkle p DIS Veteran<br><font color=blue>Whoops, sorry. Go

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    Paige -While I am not familiar with this lines, I am familiar with the stress long term family illness causes. I will keep you in my thoughts and prayers.
    :grouphug: :grouphug: :grouphug: :grouphug: :grouphug:
     
  13. paigevz

    paigevz <font color=blue>I work on the other side<br><font

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    Gracias, mi amiga, y por tu familia de mi tambien. :grouphug:
     
  14. Toot Sweet

    Toot Sweet <font color=green>Bbgrizzle was eaten by a 5-foot

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    Paige, you are such an amazing person and friend. We are all here for you and so sorry you are going through such a difficult time. Please wish your DH the best from us. :grouphug:
     
  15. L107ANGEL

    L107ANGEL <font color=purple>Tipsy Pioneer (Committed PUI)<b

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    Paige, true friends want to be there for the tears as well as the laughs!! Please don't think you are bringing anyone down. That why many of us come here, to vent, laugh, and get to know each other. Your family is in our prayers :grouphug:
     
  16. minkydog

    minkydog DIS Cast Member

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    He has sarcoidosis, an inflammatory autoimmune disease. It mostly affects the lungs and skin, but can invade any organ. Usually it goes away without treatment. Some people have to go on steroids for a few weeks, but then it goes away and that's it. In his case, the sarcoid has invaded several major organs and has caused fibrosis of the lungs( permanent scarring), killed off the main electrical impulse center in his heart(the SA node), and caused seizures from scarring in the brain. His case is very severe and will most likely lead to a shortened life. He uses oxygen at night and takes several rest periods each day. DH can work about 3 days a week, if he doesn't have an infection. His most recent hospitalization was in May, for pericarditis--the scarring has invaded the heart sac as well as the heart muscle. It has taken him about 5 months to recover from that. He takes 18 different meds several times a day. He has a pacemaker that paces pretty much all the time.

    DH & I are realistic about the future, although he is not aware that his projected lifespan is about 8yrs. When he gets a little sick, it can become a crisis within a few hours so I have to monitor him closely--DH isn't always a good judge of when things have gone too far(he hates hospitals). We try to travel when he feels well. We can still camp in our little camper, we just take the oxygen with us. We go walk down by the lake sometimes. Sometimes we get respite for our DS11, which is a wonderful break for us all.

    Some days life is a party and some days it's not. But we try. :goodvibes
     
  17. minkydog

    minkydog DIS Cast Member

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    I know, I know. We are in the same boat. DH has enough energy to do what he must, but there is nothing left over. He goes to work and comes home, takes a nap before he can even eat supper. He stopped going to the kids' evening events 3yrs ago because he was just too exhausted. In the evenings we just watch TV together. Like your husband, DH keeps working mostly for his own self-esteem. Without work he would feel like a slug. So friends who haven't really been in our shoes are puzzled & confused. :confused3 And who can blame them? He looks so healthy to the untrained eye.
     
  18. paigevz

    paigevz <font color=blue>I work on the other side<br><font

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    Yes, that's what everyone says. But he LOOKS GREAT..............


    Angel and Bonnie, you are both uncommonly fabulous friends. I am lucky to have you, and I hope you don't think less of me for needing this too. It's hard to stop a fun time and vent. :grouphug: :grouphug:
     
  19. hiwaygal

    hiwaygal <font color=red>Only someone as wonderful as Donna

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    Paige...I'm so glad for this board and I'm so glad that you started this thread!!

    I can understand that no matter how much your friends (me included!!!) love and care about you...sometimes you need to talk with someone who has been there, who REALLY understands everything. And, try as we might, if we haven't been through it, we can't really understand (but we do send :grouphug: and support whenever you need it).

    It seems you have found at least one person who has been through something similar...and I hope you find more!

    Just don't forget the Chatters! ;)

    :grouphug: :grouphug: :grouphug: to you and your family!
     
  20. blue_river

    blue_river <font color=coral>I do believe in fairies!<br><fon

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    Hi Paige,

    I just wanted to tell you how sorry I am to hear about your DH. I too was diagnosed with an autoimmune liver disease this year. After the shock and terror of the news, I made my way around the net and found a wonderful support group for people with autoimmune liver disease. It can be found at www.pbcers.org or you can just follow the link on my ribbon in my siggie.

    There are about 3000 members who discuss many issues related to this disease, not to mention the support of friends who are dealing with the same problem.

    If I can be of any help to you please do not hesitate to PM me.

    Hugs.
     
  21. paigevz

    paigevz <font color=blue>I work on the other side<br><font

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    Thank you! I will have to go see! :thumbsup2
     

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