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Old 03-29-2011, 09:20 AM   #1
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Help please!

Since 2007 I was diagnose with sjogrens. Not the usual but as a non drinker, not smoker I have suffered with constant bronchitis and that was it. Since then I have been also diagnosed with autoimmune hepatitis and cirrhosis. A biopsy has shown it is advanced. Doctors are no help.

Last week I started on Myfortic 360 twice a day. I had taken cellept for 9 months and was ill till I could not take it anymore. My body hurts, stomach hurts, the liver area hurts I still cough..fluid in my ear started with the cellcept, I lost my hearing in that ear.

It is endless. four rheumatologists, 2 liver doctors. Called my liver doctor yesterday but had no return call, told them I quit taking the Myfortic because I could not breathe, the cough was worse, my fatigue is worse and I walk like a drunk from the dizziness.

My Ammonia level is 80, the AST is 82 and the ALT is 81.....GGt is 179......creatinine0.69...I have to pull myself out of bed and bounce against the walls....I take Xifaxan for the ammonia....there are no other hepatologist here unless I want to go to a group that actually has made front page news for incompetency. I am ready to just give up....any suggestions..

Gcbpgh

 
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neveragain444 (03-29-2011)
Old 03-29-2011, 09:56 AM   #2
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Re: Help please!

Give the Myfortic time to work. Maybe it'll help some of your fatigue and pain. I'm so sorry. I really don't know what to say. Your obviously in hell with your health problems and I understand completely why your saying your ready to give up. If I was in your shoes, I'd feel the same way. Infact I have anyways, and I am not battling organ damage. It's not going to help though, by giving in to the health problems. Staying in bed all the time, it just makes you depressed, makes you feel worthless, it hurts your muscles, they can get very week after doing this long term, all it is going to do is make you feel more pain. You can sleep 20 hours a day, it won't budge your fatigue. You still end up yawning your head off. They have to get your immune system acting normally, maybe Myfortic will do that for you. My brother was born with bronchitis. He drinks an entire bottle of grapefruit juice down as fast as he can when it flares up and swears by the stuff. You might give that a try. I hope you can find it in yourself to stay strong and keep on fighting.

 
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Old 03-29-2011, 07:25 PM   #3
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Re: Help please!

I hope that you can get some help real soon. All of a sudden after a long day at work I had so much swelling that I couldn't put my shoes on, felt like I was drowning in my own body fluid. After 5 months, test after test, they got a diagnosis, polymyositis. Very rare auto immune where the body destroys its muscle tissue. I know you must be feeling down. I was for a long time. I had to stop working, have lived in chronic pain now for 16 years, have so much fatigue. I have a couple good days, but mostly bad days, with pain and so tired it is hard to walk. Best of luck, I hope you run into a good doctor, here in Ontario they are few and far between. I will be without my buddy, my rheumatoligst, he is in his 70's and still working, he can't find a replacement for his practice. All you can do is hope that things will improve.
Best of luck
Pat

 
Old 03-30-2011, 09:45 AM   #4
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Re: Help please!

Thank you both. I can't stay on it I am just too sick from it. We aren't talking a little sick. Violent vomiting, can't walk from total imbalance and the cough is as though I have bronchitis. Fatigue, I wish there were a better word. I have always worked long hours and loved it. I would do anything to be able to move. Its the autoimmune liver, sjogrens and cirrhosis. I just wish there was a medicine that did not have to have such side effects.

Hey Canada, I live in one of the largest medical cities in the Eastern United States, we did the first liver transplant. We should have the best doctors....and the most....there are tons of gastrologist but they have to be a hepatologist to be a liver doctor...I can find 2 outside of the liver group that rules the city. I went to them first...they didn't help or offer any help at all. Odd thing is my sister was diagnosed with Hep C from a blood transfusion she had in 1969. No one caught it, they said it had remained dormant then destroyed her liver. It was too late. She lived a year and stayed with the big hospital liver group. They did nothing. Towards the end I asked what pain meds she was on and they had her on no opiates just a inflammatory. It was just one awful experience after another. I wouldn't send my dog to them. So that leaves me with 2 doctors....and sky high bills...I take Xifaxan every day..the cheapest I can find it is $1485.00 I pay 20% which is almost $400.00 that is just one medicine.....you are lucky in Canada.....

 
Old 03-30-2011, 12:59 PM   #5
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Re: Help please!

My husband died two years ago, he also had cirrhosis. He stopped drinking 20years prior to his death. It was discovered that he had 1 cm lesion on his liver it was cancer. They first said he was too healthy for a transplant, then not healthy enough. My oldest girl also got tainted blood back in 1980 from the Red Cross here in Canada, they compensated her since it was there fault that she was given blood that they didn't test for Hep C. She doesn't talk about her health so I don't know how things are progressing with her. My girls are RN's and i worked in health care as a medical secretary for years, and in the Cancer Clinic here in Hamilton, Ontario. It sounds like you are having real problems. I know how frustrating it is to go for help and walk away without help. Sounds like you have been under stress and that doesn't help the matter. I too, am under tremendous stress, sick, alone, widowed,
and I can no longer work. I have found that my family and friends have walked away because they don't want to be around someone with so many problems. At least I am getting morophine for my pain and percs. It is so cruel to let someone suffer in chronic pain and not give them relief. There is health care here, but we pay for it with very high taxes. There is not help with medications unless you are on welfare. I get mine paid for by my late husband's medical plan. Who needs money worries along with what you are putting up with.

 
Old 03-30-2011, 09:19 PM   #6
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Re: Help please!

I feel as though I should not complain as you have been through so much. I thought you had free medicine in Canada. My husband is 65 and not retiring for fear of paying more. But it is all taking its toll.. You are so right about friends and family. I think they feel you might be contagious.

My sister was all I had even though I have a large family, same with friends. They no longer want to talk about it and its all I have to talk about...No pain meds for me....everything goes through the liver and mine is damaging itself with the autoimmune hepatitis. I am almost in a bubble. They don't know what to do. I have a sister-in-law that has hep C and she is on medicine and healthy. If that helps with easing your worrying about your daughter......I wish you a better day tomorrow and the next. Take care,

Gcb in Pittsburgh, Pa

 
Old 03-31-2011, 11:18 AM   #7
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Re: Help please!

Hello, what I have found out in life is there is always someone worse off than us. What I am feeling right now is, I just want to be myself, I want to address my feelings, if I am sad, I want to cry, I am sick of putting on an act when I am in so much pain, both physical and emotional. If people do not want to be around me, so be it, I have had people tell me they do not want to hear anything negative. I have had people tell me that I give them a headache, they ask how I am, knowing well that I am hurting. Why ask then. I have had so called friends say to me "**** happens" referring to my husbands death. Most people have made it clear that i am negative, that I should just turn around and think of positive things, only, cut off all my negativity. Well, they don't understand it is impossible to cut off severe chronic physical pain, that it has an effect on my sleep patterns, my eating etc. Well, little do they know I do just that, I try to be happy, I pray to God for some peace in my life. My life is so very different than theirs. They have a spouse to help them when they need someone to talk to, someone to share, someone to hug, someone to tell them they are loved. I have none of this anymore. I have extra work to do, now only two hands before we had four hands to do the same work. Right now, I just don't care how people feel about me, I will find my way, I always have. What is really bothering me is to have my life totally change, and find out what most, not all, people are really about. It is a me, me, me society. I will not share things anymore. It hurts to see that there is so little love and caring in the people that are in my life. I understand that others are blessed, and I am truly happy for them, to have somone care, for a sick or elderly family or friend is truly a wonderful thing to do. Not all of us have been blessed that way.

 
Old 04-04-2011, 05:31 AM   #8
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Re: Help please!

I know how you feel. I get all that from my family, friends, and my own kids. I have to include my own doctor on that list now too. It's tough not having anyone understand. I should hope people still actually care even though they act that way. I think they are just kind of stupid about it unless it happens to them. But even then, some of them still lack understanding. Oh I have this/that and I still do what I want everyday, I don't let it hold me down. Well I have come to learn, even though that ****** me off that they said that, that is a good way to tackle a disease. You can't let it get you down. Fight, fight it, and fight some more. I'd rather live partially productive even if it is hard to do than lay in bed and give up.

 
Old 04-04-2011, 11:44 AM   #9
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Re: Help please!

Thank you for answering my post. I wish that things could be different in our lives, but I guess we have to except what has happened, and just find ways to feel better.

 
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