无忧乙肝博客 - 特别推荐

有冇人o既老公都係乙型肝炎帶菌者? 大家傾下...

zhaoniupai@163.com (zhaoniupai) — Sun, 05 Jul 2009 05:03:07 +0800

有冇人o既老公都係乙型肝炎帶菌者? 大家傾下...

我老公乙型肝炎係母體傳染，佢好多親6都係帶菌者，有幾個都係因肝癌過左身。需然佢半年一次check住個肝，但係由結婚到宜家，間唔中都會好擔心

你地有冇同感

我国将乙型肝炎病毒携带者简称为“‘乙肝’带菌者”。这些带菌者在全国总人口中约占10％，超过1亿之众，可见数字之大。这些人虽然没有外表症状，但其肝脏却已经受到了某种损害，其预后是很多人非常关心的一个问题。
　　据医学家追踪调查发现， “乙肝带菌者”即“表抗阳性者”(即HBSAg阳性者)，每年有10％的人“自然转阴”，成为真正的健康人，从而被摘掉“表抗”帽子。但是，还有大多数“表抗”阳性者不易转阴，他们的预后可能有四种：
　　一、与人“和平共处”，终生阳性，可以不影响人的寿命；
　　二、转变成乙型肝炎；
　　三、转变成肝硬化；
　　四、转变成肝癌。
　　其中后三种情况严重影响着人体健康，威胁着人的寿命。
　　“表抗”阳性者的10年总死亡率为62.5％，而非携带者仅为35％。10年中“表抗”携带者死于乙型肝炎的人为62.8％(43人中有27人死于“乙肝”)，非携带者死于乙型肝炎的仅为5.1％；携带者死于肝硬化的为10.l％(688人中死7人)，而非携带者死于肝硬化的仅为1.1％；“表抗”携带者死于肝癌的人占29.1％(688人中有20人死于肝癌)，而非携带者死于肝癌者仅为０.7％。
　　值得注意的是，在男性“表抗”阳性者即“乙肝”病毒携带者中，死于肝硬化和肝癌的人分别占17.2％和44.3％，而女性仅为O和71％。因此，“乙肝”病毒携带者不要为自己无肝炎的表面症状而盲目乐观，特别是男性携带者更应注意。应积极到医院问诊求医，现已有多种办法可以治疗。
　　那么，“乙肝”带菌者应注意些什么问题呢?
　　验血后发现肝功能正常，无肝炎病状，也无肝炎体征，仅是血液存在HBSAg的人，医学上称之为HBSAg携带者，俗称“乙肝”病毒携带者。近年来许多专家对大量的HBSAg阳性者的肝脏进行穿刺检查，发现这些人都有不同程度的肝细胞损害现象。因此，HBSAg阳性的人即“乙肝”病毒携带者如在生活中和工作中不注意身体的保养，有可能导致乙型肝炎。为防患于未然，“乙肝”病毒携带者应着重注意以下问题：
　　一、饮食以增加蛋白质(如牛奶、豆腐、精肉、鱼等)为主，并多食蔬菜、水果等。
　　二、糖的摄取量不必过多，以免加重肝脏负担和诱发脂肪肝。
　　三、可适当食用香菇、银耳、猴头菌等食用菌食品，它们有调节机体免疫功能的作用。
　　四、忌饮高度酒，对低度酒及啤酒也应慎饮。
　　五、作轻微的锻炼，如太极拳、气功等，避免较大的竞技性体育活动，避免过多接触农药和其他化学药物。
　　六、目前尚无十分有效的治疗药物，因此用药要慎重。
　　七、可以结婚、生育，但其所生孩子要注射“乙肝”疫苗以进行预防。
　　八、尽量避免同他人过多地密切接触。
　　九、如出现肝区不适、食欲减退、乏力、恶心、怕食油腻食

乙肝携带者的常见心态

1、惧怕心理根据每个人的不同情况，惧怕内容有所不同。青年人怕因此影响恋爱、结婚、生育，也有人怕影响自己前途，如考大学、找工作、出国、升迁晋级等。还有的人怕被别人歧视，不少人怕发生肝炎、肝硬化、肝癌。惧怕心理的产生，主要是对乙肝带毒的实质不了解。其实，怕没有用，要正视它，应以正常心态对待，淡化自己身上的“毒”，因为心理压力也可能导致一些躯体症状出现。2、焦急心理“我怎么这样倒霉！”“何时能治好？”“我该怎么办？眼看结婚在即，带着乙肝病毒结婚能行吗？”……经常有乙肝带毒者对我焦急地诉说、咨询。焦急会让人烦躁，影响情绪，影响工作和生活。3、悲观心理错把乙肝带毒当成乙肝，认为患乙肝永远治不好，最后必然

乙肝病毒携带者不等于乙肝病人

乙肝不可怕，可怕的是跟正常人一样的乙肝病毒无症状携带者在就业、转干、升学……中所遭受的歧视和不公。因为对乙肝病毒无症状携带者的“拒绝”而酿成的悲剧，迫使我们不得不对乙肝病毒到底在什么情况下会“祸”及他人而进行重新审视。近日，笔者就乙肝话题，采访了解放军302医院感染六科副主任医师李捍卫。李捍卫说，不少人把乙肝病毒携带者误以为是慢性乙肝病人，并且不少慢性乙肝病人把“转阴”作为终生追求的目标，这是不科学的。一般来说，对表面抗原阳性的人，如果症状不明显，化验肝功能正常，医学上称为乙肝病毒表面抗原携带者。这样的人不一定都是肝炎，所以不必要恐慌，只要在医生的指导下定期检查就可以了。乙肝病毒大部分传染性较

海绵状血管瘤肝血管瘤

zhaoniupai@163.com (zhaoniupai) — Tue, 23 Jun 2009 10:40:17 +0800

海绵状血管瘤肝血管瘤

肝血管瘤在肝内较在其他器官内为多见，然而在临床上仍属一种较为少见的肿瘤。肿瘤常是单个性的，体积也不大；侧尔亦可为多个性或较为巨大者。肝脏内血管瘤分两种类型：一型是海绵状血管瘤，较为多见；另一型是真性血管瘤，较为少见。肝脏海绵状血管瘤

1）主要表现上腹部隐痛或不适、厌食、恶心呕吐，也可长期发热、寒战和盗汗，类似肝脓肿。肿瘤增大可压迫、推移邻近脏器，出现各种相应的症状，如吞咽困难、腹胀、腹痛、嗳气、黄疸和腹水等，孕妇则可影响分娩。

若因外伤、分娩时急产等可引起血管瘤瘤体破裂而造成腹腔内出血、休克。瘤体内出血侵蚀肝内胆道可造成出血而产生胆质血症。

2）辅助检查 X线检查可见横膈抬高；超声波、放射性核素及CT等提示占位性病变。

3）治疗包括

①肾上腺皮质激素，对婴幼儿、青少年肝脏海绵状血管瘤有较好疗效，常用泼尼松2毫克，每天3次，亦可用至20毫克，每天1次；

②放射治疗应用60钴或电子加速器的电子束对肝脏海绵状血管瘤进行照射，治疗效果较满意；

③手术汉疗切除瘤体；

④他尚有激光治疗、微波治疗、肝动脉栓塞治疗、冷冻治疗及硬化剂注射治疗等。

肝毛细血管瘤十分少见，常伴有遗传达室性毛细血管扩张症病史。本病无须治疗，对健康亦无影响。

肝血管内皮瘤罕见，发生于新生儿，女性多见，常伴有其了器官的血管瘤，尤其是皮肤血管瘤约占本病的50%。

1）主要表现肝脏肿大，高排出是心力衰竭、多处皮肤血管瘤、贫血等，1/3患者出现黄疸。

2）治疗可试用肾上腺皮质激素、环磷酰胺。放射治疗无效。

肝血管内皮细胞肉瘤亦罕见，成人、儿童均可发生，常伴有硬化。表现为上腹疼痛、肝脏肿大、黄疸、血性腹水、肝功能明显损害，预抽极差。可试用环磷酰胺治疗。

做了一整年的治療樹的故事

zhaoniupai@163.com (zhaoniupai) — Mon, 25 May 2009 12:16:00 +0800

Tree's Story 樹的故事
樹和Rich,In June of 1996, after a long and celebrated pregnancy, my husband and I planned for the arrival of our first son, little Richie. 在1996年6月，經過長期和慶祝懷孕，我丈夫和我計劃的到來，我們的第一個兒子，小里奇。 The nursery was made up, the bags were packed and we were ready to bring this little boy into a world filled with love. 苗圃是行動，袋包裝，我們願意把這個小男孩成為世界充滿愛。 We went to the obstetricians office on Thursday and everything looked good. 我們到婦產科辦公室星期四，一切看上去很好。 I was 41 1/2 weeks gestation (overdue by almost 2 weeks) so the doctor decided that if the baby didn't come over the weekend, we would induce on Monday. 我是41 1 / 2週妊娠（逾期未交了近2週），所以醫生決定，如果孩子沒有來上週末，我們將促使星期一。

Friday evening it looked at if the blessed event had come. 星期五晚上它望著如果幸運的事件已經成熟。 The contractions came erratically but we headed off to the hospital in great delight. 收縮是不正常，但我們就到醫院非常高興。 We arrived at the hospital and were treated to all the wonderful smiles and encouragement that all new parents receive. 我們抵達醫院，並接受治療的所有美好的微笑和鼓勵，所有新的父母接受。 We were set up in a birthing room and told to prepare for the blessed event. 我們成立了一個分娩室，並告訴準備賜福活動。 Within a few minutes after settling in, the nurse came in and hooked me up to a fetal monitor, iv's and what not. 在幾分鐘之內定居後，護士和鉤來我給胎兒監測，四的，哪些不是。 We knew then, that something was drastically wrong. 我們知道，這種東西是大大錯誤的。 There was no fetal heartbeat. 沒有胎兒心跳。 The nurse said not to worry and ran out and got the doctor. After several minutes of turning and moving to try and get the heartbeat, the doctor finally said, Theresa, I think your baby is dead. 護士說，不要擔心和失控，並獲得醫生。經過幾分鐘的轉折點和移動，試圖讓心跳，醫生最後說，特里薩，我覺得您的寶寶已經死了。 You can't imagine the shock and pain and heartbreak that my husband and I felt at that moment. We had waited 9 months, we had done everything right, the contractions had finally come and we were there to have our baby - the doctor offered little hope. 你無法想像的痛苦和震驚和傷心，我的丈夫和我都覺得在那一刻。我們已經等待9個月，我們已盡了一切權利，收縮了現在終於和我們在那裡有我們的孩子-醫生提供希望不大。 To confirm our situation, the doctor ordered a specialist from ultrasound to come in and check for life. 確認我們的情況下，醫生下令專家來超聲檢查中和生活。 It was a long wait - in the middle of the night - it took the ultrasound technician about 2 hours to get there - I laid there - having contractions - waiting for a glimmer of hope. 這是一個漫長的等待-在半夜-它採取了超聲波技術員約2小時到達那裡-我躺在那裡-在收縮-等待了一線希望。 The ultrasound technician offered no hope and confirmed that our little Richie had died just hours before in my womb. 超聲波技術提供任何希望和確認，我們的小里奇已經死亡前幾個小時，在我的子宮。

I was immediately shot full of morphine and given pain killers and an epidural. 我立即開槍充分嗎啡和給予止痛劑和硬膜外。 The worst part was yet to come. 最糟糕的是還沒有到來。 I had to give birth to a dead baby. 我生一個死亡的嬰兒。 Needless to say the resulting events, the birth, the visitation, the funeral and the burial were the most unbelievably sad moments of my life. 不用說由此造成的事件，出生，探望，葬禮和埋葬是最令人難以置信的悲傷的時刻我的生活。 I was not myself - just a shell without a soul. 我不是我-只是一個沒有靈魂的外殼。 This event totally destroyed me as a woman. 這一事件完全摧毀我作為一名女性。 inside myself I had no confidence, I couldn't do anything. 在我自己沒有信心，我不能做任何事情。 I couldn't drive, couldn't speak, couldn't work, couldn't go to the grocery store. 我不能驅動，無法說話，無法工作，不能去雜貨店。 I was a total failure as a woman - and this over took my soul completely. I had no control and ended up in therapy for over a year. 我是一個徹底失敗的女人-這超過了我的靈魂完全。我已經無法控制，最終在治療了一年多。

After a year or so of intense therapy, much pain, a new house and much love from my family - My husband and I decided to try again. 經過一年多的緊張治療的痛苦，一個新的房子，多的愛從我的家庭-我的丈夫和我決定再試一次。 The pain and fear was of course, overwhelming. But we tried it anyway. 痛苦和恐懼，當然，勢不可擋。但是，我們嘗試過了，反正。 This time, we were going to do it right. 這一次，我們打算這樣做的權利。 We went to the best specialist in the world. 我們去了最好的專家在世界上。 Dr. Mowad at the University of Chicago Hospital.博士Mowad在芝加哥大學醫院。 I had tests, after tests, after tests, I saw him every week for 8 months. I had 4 ultrasounds, not a pimple would appear without his knowing it. 我已經測試，經測試後，經測試後，我看到他每週8個月。我有4超聲波檢查，而不是一個疙瘩，似乎沒有他不知道的情況。 He took fabulous care of me. 他神話般的照顧我。 We decided at 38 weeks that we were not going to let this happen again. 我們決定在38週的是，我們不會讓這種情況再次發生。 We would take the baby early. 我們會採取嬰兒早期。 We decided to induce and bring the baby along 2 weeks early. 我們決定誘導，使嬰兒在2個星期早期。

Once again, the blessed event had come. 再次祝福活動已經成熟。 We were treated like royalty as they hooked me up to iv's and fetal monitors and epidurals. 我們是一樣的待遇，因為它們連接費高達四我和胎兒監視器和epidurals 。 The heartbeat was strong. 心跳強勁。 We were going to have a baby.!!!! 我們將有一個嬰兒.!!!! Some time during the night, once again, things changed - a resident came into the room and said, "Theresa, I see you have Hepatitis C". 一段時間，在夜間再次事情改變-居民走進房間，說： “特里薩，我看你有C型肝炎。 ” I said, "what?", he said yes, your test results show you have HCV. 我說， “什麼？ ” ，他說是的，您的測試結果表明你有丙型肝炎病毒。 I assured him that their had been a mistake and that I had never heard of such a thing. 我向他保證，他們是一個錯誤，我從來都沒有聽說過這樣的事情。 He went to the computer and printed out the results and showed me that 6 months earlier, I had been tested and results showed that I had the antibody of hepatitis C. 他到計算機和打印出的結果和發現我， 6個月前，我一直在測試，結果表明，我曾丙型肝炎抗體 The resident didn't know what to say, I asked about the baby, he didn't know, I asked what the disease would do to me, he didn't know, he offered a glimmer of hope and said that perhaps a false positive had resulted from my pregnancy. 駐地不知道該說些什麼，我問孩子，他不知道，我問什麼病，我將盡，他不知道，他提供了一絲希望，並說，也許是錯誤的積極的結果我懷孕。 So they tested me again. 因此，他們測試了我。 The results of the HCV antibody test were positive once more. 結果丙型肝炎病毒抗體檢驗呈陽性一次。 They could offer me no information, nothing - they said I would have to go to a liver guy for answers. 他們可以給我任何信息，沒有-他們說，我會去肝傢伙答案。 In the meantime, I had to give birth to this baby. 與此同時，我不得不生下這個孩子。 I had Connor Riley Callahan, 24 hours later and he was a beautiful baby boy. 我康納萊利卡拉漢， 24小時後，他是一個美麗的男嬰。 Very healthy, pink and perfect. 非常健康的，粉紅色和完善。 For the moment we were in heaven. 目前，我們在天堂。

At my six week checkup, I asked Dr. Mo how this could be. 在我的六週檢查，我問醫生莫如何可以做到這一點。 He told me that when he ordered tests for Hep B, they tested me for Hep C as well. 他告訴我，當他下令測試喉癌乙，他們測試我喉癌C為良好。 He had just never looked for those results - so he was as surprised as I was. 他剛剛為那些從來沒有期待的結果-因此他感到驚訝，我是。 He confirmed the results of the antibody test once again, could offer me no help in terms of prognosis - he knew it could be bad, but suggested I go to a liver doc. 他確認的結果，抗體試驗再次，我沒有可以提供幫助方面的預後-他知道這可能是個壞，但建議我去肝文件。 That was the last time I thought about it for a while. 這是最後一次，當時我想到了一段時間。

Over the next 6 months or so, I started to gather information. I read studies, I joined chat rooms, I made friends with Heppers on the net. 在接下來的6個月左右的時間，我開始收集資料。我閱讀研究報告，我加入的聊天室，我結識了Heppers淨。 I got stories and treatment and information. I really did my homework. 我的故事和治療的信息。我真的我的功課。 I could quote studies and results paragraph by paragraph, and I had a plan. 我可以引述的研究和成果逐段，而且我有一個計劃。 I found one of the leading hepatologists in the country at Rush-Presbyterian hospital here in the city. 我發現的領導者之一， hepatologists在該國拉什長老會醫院在這裡的城市。 I knew that they were a leading transplant center and I knew they had doctors, hepatologists that worked strictly with hepatitis C. I went there for info and treatment. 我知道，他們是一家領先的移植中心，我知道他們的醫生， hepatologists的工作嚴格遵守丙型肝炎我去那裡的信息和治療。 This doctor was quite impressed with my approach, I went in knowing what the statistics were. I knew several heppers that had been treated for years unsuccessfully and I had the data to prove it. 這個醫生是相當深刻的印象我的辦法，我就知道什麼統計數字。我知道幾個heppers已成功治療多年，我有數據可以證明這一點。 I went in asking for what I wanted and he respected that. 我去的要求，我想和他對此表示尊重。 We started with the standard tests and biopsy. 我們開始與標準測試和檢查。 December of 98 my liver enzymes were a little high, in the 60's and my viral load was 8 million. I was diagnosed with genotype 1 b. 12月98我的肝酶都有些高，在60年代，我的病毒載量是800萬美元。我被診斷為1型灣 My liver biopsy showed Grade 2 Stage 2 progression. 我國肝活檢顯示， 2級第2階段發展。 Some fibrosis but no bridging. It was time to talk treatment. 有些纖維化，但沒有彌合。現在是談論治療。

This doc knew I knew my stuff. 這個文件知道我知道我的東西。 I had seen too many people try the standard treatments - interferon 3 x per week and fail. I knew that was not an option for me. 我已經看到太多的人試圖對標準療法-干擾素3 ×每週失敗。我知道這是不是一種選擇對我來說。 The combination therapy of interferon + ribavirin 3 times per week was the standard treatment then, but I wouldn't have it. 綜合治療干擾素+利巴韋林每週3次的標準治療之後，但我不會有。 The results of the combination therapy were not much more promising. 結果聯合治療沒有更加光明。 I had read studies about the Amgen interferon called INFERGEN. I knew that this was a synthetic interferon and when compared to the other interferon - head to head - the synthetic, INFERGEN did much better in studies. 我已閱讀研究的Amgen的干擾素呼籲INFERGEN 。我知道這是一個合成干擾素時，其它城市相比，干擾素-頭對頭-合成， INFERGEN沒有更好的研究。 Especially with 1b'ers like me. 特別是1b'ers喜歡我。 I also knew from working and talking on the internet that 3 x per week was a dinosaur story. 我也知道工作，在互聯網上談論的3 ×每星期是一個恐龍的故事。 I wasn't going to go that way - no way - It was going to be daily or the highway. My doctor agreed that INFERGEN was the superior interferon - he also agreed that daily treatment was the best approach in my case. 我是不會去這樣-沒有辦法-這是將每天或公路。我的醫生同意， INFERGEN是優於干擾素-他也同意，每日治療是最好的辦法在我的案件。 We only had one hurdle. 我們只有一個障礙。 I had to use ribavirin in combination with any interferon I used. 我不得不使用利巴韋林結合任何干擾素我用。 We all know that the ribavirin was bundled with the standard interferon from Schrinng. 我們都知道，利巴韋林是捆綁在標準干擾素從Schrinng 。 My doctor could not legally prescribe ribavirin for me to use with the INFERGEN so I told him that he had to do what he had to do - and that I would do what I had to do. 我的醫生不能在法律規定利巴韋林對我來說，使用與INFERGEN所以我告訴他，他不得不做他必須做- ，我將做我必須做。 I contacted the PWA - People with Aids in New York city - and purchased the ribavirin on my own. 我聯絡了巴勒斯坦供水局-艾滋病人在紐約市-和購買利巴韋林我自己。 He would prescribe the Infergen daily and would take the ribavirn every day. We were off to the races. 他將訂明Infergen每日將採取ribavirn每天。我們是去比賽。 I waited a few months to get leave from my job - I had more tests done in March of 99 - by then my viral load had shot up to 17 Million. 我等了幾個月獲得離開我的工作-我有更多的測試工作在3月99 -那時我的病毒載量已飆升至1700萬美元。 It was time for me to treat. 現在是我的治療。

Here's how the treatment went in a nutshell. 以下是如何治療了概括。

Weeks 1 - 2 - Infergen 15 mcg's every day ( I really did 18mcg because I would do every last drop.) plus 800 mgs ribavirin. I took milk thistle, vitamin E and Vitamin C every day. I was already taking Ativan (lorazapam) for anxiety. 週1 - 2 - Infergen 15微克的每一天（我真的18mcg ，因為我將盡最後一滴。），另加800大馬政府證券利巴韋林。我把牛奶薊，維生素E和維生素C每一天。我已經考慮Ativan （ lorazapam ）焦慮。 Blood tests, liver enzymes, cbc, white count every week. 驗血，肝酶，加拿大，白色計數每星期。 I was ok the first week or so, just the standard hot flashes with fever. 我是確定的第一個星期左右的時間，僅僅是標準潮熱有發燒。 My energy was up because the ribavirin is like taking straight speed. 我的精力了，因為就像是考慮利巴韋林直速度。 Blood counts were good. 血球計數良好。

Weeks 3 - 4 - Infergen 15 mcg's every day plus 800 mgs ribavirn. Blood tests, liver enzymes, cbc and white count every week. Fatigue started to settle in, I couldn't sleep and started taking antidepressants. 星期3 - 4 - Infergen 15微克的每一天另加800大馬政府證券ribavirn 。驗血，肝酶，央行和白色伯爵每週。疲勞開始定居的，我不能入睡，並開始採取抗抑鬱藥。 I took welbutryn 400 mgs per day and paxil 20 mgs per day. 我在大馬政府證券welbutryn 400每天和Paxil 20大馬政府證券每天。 I started ambian 10 mg per day for sleep. 我開始ambian 10毫克，每天的睡眠。 Continued with lorazapam, vitamin E, milk thistle and vitamin C. They did a 4 week PCR and I came back undetectable. HALY - FREAKING - LUYA !!!!! 繼續lorazapam ，維生素E ，牛奶薊和維生素C ，他們做了4週PCR和我回來不可。 HALY -再用-蘆芽山!!!!! I went from a viral load of 17 million to less than detectable in 30 days. 我去了病毒載量為1700萬到不到30天的探測。 My blood tests showed normal enzymes - blood counts were really low - but we agreed that I could handle it. 我的血液測試結果顯示正常酶-血球計數真的低-但是，我們一致認為，我能處理。

Weeks 4 - 12 - Infergen 9 mcg's per day (I really did 12mcg because I would do every last drop.) plus 800 mgs ribavirin. 週4 - 12 - Infergen 9微克的每一天（我真的12mcg ，因為我將盡最後一滴。），另加800大馬政府證券利巴韋林。 Standard vitamins and milk thistle and antidepressants. 標準維生素和牛奶薊和抗抑鬱藥。 The Fatigue and the hair loss started. 疲勞和脫髮開始。 I couldn't really work because brain fog had me very confused. 我不能工作了，因為大腦霧我很困惑。 I couldn't think, couldn't remember anything, I had to write down everything. 我不能想，不記得任何事情，我不得不寫下來一切。 I slept all the time - I didn't really eat very much - I felt puky all the time. 我睡的時候-我真的沒有吃非常- puky我覺得所有的時間。 I started taking compazine for the nausea. I had bouts - severe bouts with muscle aches. 我開始考慮compazine的噁心。我曾幾次-嚴重發作的肌肉疼痛。 My legs would hurt so much I would cry. 我的腿會傷害這麼多，我哭了。 Headaches would blow the back of my head off. 頭痛的打擊後，我的頭了。 I started taking Vicoprofin for the pain. (IMPORTANT NOTE HERE: I did not take any of these complaints to my liver doctor - I found out early that he only treated the liver and not the symptoms of the treatment - I had to find an internist that knew about hep c to treat all the other symptoms. Fortunately, my liver doc sent me to a good internist who gave me what I needed to survive.) I also feared greatly that if I complained of all of this to my liver doc that he might get nervous with such an agressive treatment. 我開始考慮Vicoprofin的痛苦。（重要這裡指出：我沒有採取任何投訴到我的肝醫生-我發現早期治療，他不僅沒有肝臟的症狀治療-我必須找到一個內科這知道喉癌C至對待所有其他症狀。值得慶幸的是，我的肝文件寄給我有一個良好的內科誰給了我什麼，我需要生存。）我還擔心，如果我大大抱怨這一切對我說，肝文件他可能會感到緊張這樣一個積極的治療。 I felt it best to keep him thinking I was going along fine - I never wanted to risk him backing out and pulling me off of treatment. 我覺得最好還是讓他想到我會沿著罰款-我從來沒有考慮過要支持他的風險，並拉動了我的治療。 Week 12 all liver enzymes were normal PCR was undetectable AGAIN.!!! 第12週所有肝酶是正常的反應是不可了。！ Blood counts were low - thyroid was normal. 血球計數低-甲狀腺正常。

Weeks 12 - 26 - Infergen 9 mcg's per day plus ribavirin 800 mgs. Milk thistle, vitamin E, vitamin C, lorazapam, vicoprofin, ambian and compazine. 週12 - 26 - 9微克Infergen的每天加利巴韋林800大馬政府證券。牛奶薊，維生素E ，維生素C ， lorazapam ， vicoprofin ， ambian和compazine 。 (I tell ya, I had an Easter basket with all of my pills in it.) I did not work, couldn't work, would get breathless, could not run up the flight of stairs, very tired, puky and depressed. （我告訴亞，我有復活節籃子我所有的藥了。）我沒有工作，不能工作，將獲得氣喘吁籲，不能運行的樓梯，顯得很疲憊， puky和抑鬱症。 Went for blood work every 2 weeks or so - everything stayed the same - enzymes were normal, blood counts were low and week 26 PCR was UNDETECTABLE AGAIN. 去血液工作每2週左右-一切保持不變-酶均正常，血球計數很低，上週26 PCR技術是不可了。 Energy although low was better - I was able to function within my household. 雖然低能量更好-我能在我的家庭功能。 I took care of my 2 children, Connor Riley was about a year old now and Kelly, my daughter was 10. 我照顧我的2個孩子，康納萊利約一歲的凱利現在，我的女兒是10 。 Could do small jobs in the house - could do some shopping and errands and stuff. 可以做小的工作，房子-可以做一些購物和跑腿和東西。 Most people looking at me would only notice the hair. 大多數人在關注我只會通知頭髮。 I had to cut my hair real short because it got real thin. 我不得不削減我的頭髮短，因為它真正得到真正的薄。 I got real thin too. 我得到真正的薄了。 Lost about 20 lbs by this time. 損失約二十零磅的這個時候。

Weeks 26 - 52 - I did a full year of treatment. 週26 - 52 -我做了一整年的治療。 Every day I did 9 mcg's of INFERGEN plus 800 mgs of ribavirin. 每天我都沒有9微克的的INFERGEN另加800大馬政府證券利巴韋林。 I took all of my pills right on schedule. 我把我所有的藥片有權按計劃進行。 Milk thistle, compazine, lorazapam, ambian, welbutryn, paxil, vitamin e and vitamin C. 水飛薊， compazine ， lorazapam ， ambian ， welbutryn ，帕羅西汀，維生素E和維生素C Blood work was done about once a month during these last 6 months. 血液工作是大約每月一次，在過去6個月。 My blood counts remained low - my body adjusted and I was able to function pretty well around the house. The brain fog never really did get better during treatment. I was weaker emotionally and could not concentrate as I once had. 我的血球計數仍然很低-我的身體調整和我能左右的功能相當不錯的房子。腦霧的確從未得到更好的治療期間。我是較弱的情緒，無法集中精力，我曾經有過。 The 9 month PCR and the 12 Month PCR both came back UNDETECTABLE. 在9個月PCR和PCR檢測的12個月都回來不可。 I lost 30 lbs and ended up wearing a wig in the end. 我失去了30英鎊，最終戴假髮的結束。 365 Shots - I was ready for this to end. 365快照-我已經做好準備，這結束。

It took about a month for me to regain most of my brain power back - I say most because it truly took about 3 months for my head to clear. 花了大約一個月，我恢復了我的大部分腦功率回-我這樣說，因為它是真正花了大約3個月的我的頭，以明確的。 A month after I stopped treatment I went back to work. 一個月後，我停止治療我回去工作。 It was amazing how quickly I regained my strength and agility. 這是驚人的速度有多快我恢復我的力量和靈活性。 The headaches continued for about 6 months - but overall I bounced back from treatment very well - with no long term size effects. 頭痛持續了大約6個月-但總的來說我反彈的待遇非常好-沒有長期的規模效應。

Post treatment 6 months PCR - UNDETECTABLE Blood counts normal, liver enzymes normal. 治療6個月後PCR檢測-不到血球計數正常，肝酶正常。 TSH normal. 促甲狀腺激素正常。

Post treatment 12 month (1 Year) PCR - UNDETECTABLE. 治療後12個月（ 1年）聚合酶鏈反應-不可。 Blood counts normal, liver enzymes normal. 血球計數正常，肝酶正常。 TSH normal. 促甲狀腺激素正常。

No long term effects - except maybe the dragon is dead now. 沒有長期的影響-可能除了龍是死了。 I would do this again in a heartbeat. 我想這樣做一次心跳。 I don't want any of you to think I suffered though this - was a challenge that I took on willingly. 我不想讓你們覺得我遭受雖然這-是一個挑戰，我就心甘情願。 With the love and support of my family and friends I made it through what I thought I had to do to save my life. 與愛和支持我的家人和朋友，我是通過什麼我想我必須做拯救我的生命。 I would do it again tomorrow. 我將義無反顧的明天。 I thank my Doctor for being courageous enough to do the right thing and I thank everyone on line for being with me every step of the way. 我感謝我的醫生正在敢於做正確的事情，我感謝大家對行正在與我每一步。 I've given a pretty detailed account of my symptoms - but I want all to know that the medication I took elevated most of them so that I could function daily. 我已經考慮很詳細敘述了我的症狀-但我希望大家知道，我在高架藥品其中大多數是這樣，我每天都可以運作。 If I had to have worked during the last 6 months of this - I probably could - I was fortunate enough not to have had to. 如果我有工作，在過去6個月的這一點-我也許可以-我很幸運，沒有了。 This was definitely the right thing to do. 這肯定是一個正確的事情。

One last note that I would like to add is this. 最後指出，我想補充的是這樣的。 When my son Connor was 3 months old, we had him tested for the HCV antibody. Unfortunately it came back positive. 當我的兒子康納是3個月，我們曾測試他的丙型肝炎病毒抗體。不幸的是，它回來陽性。 My year or so of research had told me that this was normal, and in fact, the antibodies that he was carrying in his blood were mine. 我一年多的研究已告訴我，這是正常的，事實上，抗體，他是在他的血液進行了排雷。 We had him tested again at 1 year, and again it was positive for antibodies. I had to fight with my pediatrician to get him to back off - he was convinced that the antibodies were his own and in fact he should see a specialist. 我們有他再次測試1年，又是積極的抗體。我要鬥爭我兒科醫生讓他回來了-他相信自己的抗體和事實上，他應該會看到一個專家。 We actually had arguments where he told me I was wrong. 事實上，我們的論點，他已經告訴我，我是錯誤的。 Finally - after waiting 2 years - we had Connor tested for the antibody again. 最後-等待2年後-我們康納的抗體檢測一次。 We had decided that if the antibody was still there after 2 years that we would indeed then, have a PCR done and look at our treatment options. 我們已決定，如果抗體仍然存在2年後，我們將確實然後，有一個反應做一下我們的治療方案。 Fortunately by age 2 - the antibody test came back negative - I was right once again - and all along those were my antibodies that were hanging around in his blood stream. 幸運的年齡2 -抗體測試回來消極-我是正確的再次-所有這些都是我沿著抗體被掛在他的周圍血液流。 ( I made that pediatrician eat his words.) He is antibody negative today and as healthy as a horse. （我是兒科醫生吃他的話。）他是今天和抗體陰性的健康作為一匹黑馬。 My daughter - who is now 12 and my husband who is 37 is negative as well. 我的女兒-誰現在是12日和我的丈夫是誰是37負的。

Peace and Love to you all. 和平與愛你們大家。

Theresa (Tree) 特麗薩（樹）

肝臟疾病奧布里的故事

zhaoniupai@163.com (zhaoniupai) — Mon, 25 May 2009 12:12:45 +0800

肝臟疾病奧布里的故事
This is Aubrey's mom, Kathy. 這是奧布里的母親凱西。 Aub and I would like to tell her story so that it may help other kids and/or their families who may read this. 銀行和我想告訴她的故事，以便它可以幫助其他孩子和/或其家屬誰可以閱讀這一點。Aubrey was born in 1990, she was a twin, and was 2 months early. Both her and her brother, Austin, had severe birth defects. Aub's were with her heart and she survived. 奧布里出生於1990年，她是一個雙胞胎，並於2個月了。她和她的兩個弟弟，奧斯汀，有嚴重的先天缺陷。奧布的是與她的心和她存活。 Austin was born without kidneys, he didn't. 奧斯汀出生在腎臟，他沒有。

When Aub was a week old she underwent her first open heart surgery. It was during a transfusion from this that she was infected with HepC. 當奧布歲是一個星期前，她接受了她的心內直視手術。這是在從這個輸血，她感染HepC 。 She has had another surgery, did great recovering from that one and we only worried about her heart and her lungs (she has asthma) right up until March of 2000. 她不得不再次接受手術，並恢復偉大的一個，我們只擔心她的心和她的肺部（她哮喘）直到2000年3月。 That was when we got a registered letter saying she was exposed to the virus when she was a week old and the hospital wanted to test her to see if she was infected. 這是當我們得到了一個掛號信說，她接觸到病毒時，她是一個週齡和醫院要測試她，看看是否她感染。

Up until this time we never knew there was such a thing as hepatitis C. 直到這個時候，我們從來不知道有這種事的丙型肝炎 In the following months we had a heck of an education. If it wasn't for the people here we would have been basket cases. 在隨後的幾個月裡，我們有一個章節的教育。如果沒有人在這裡，我們本來籃子案件。 Aub is in stage 2 liver disease. 銀行是在第2階段的肝臟疾病。 We have no idea how fast the disease is progressing in her because her 1st biopsy, which was supposed to be a baseline to compare later ones to, showed she was already in stage 2. 我們不知道如何快速進展的疾病，因為她在她的第一活檢，這被認為是一個基準比較，以後來的，顯示她已在第2階段。

She has been a real trooper through all of this, she's taught the rest of us in the family a lot in the way of courage. She's always ready to help someone else. 她是一個真正的士兵通過這一切，她告訴我們其他人在家庭中的很多方式的勇氣。她總是願意幫助別人。 I'm not saying this just because she's my daughter, it's the way she is. 我並不是說這只是因為她是我的女兒，但她的方式。

If anyone reading this has a child infected with hepc, and you would like to talk about how you feel, what to expect, or just to vent your frustrations, please feel free to contact us by email. 如果有人讀這孩子感染hepc ，你想談談你的感受，會發生什麼事情，或者只是發洩你的不滿，請隨時通過電子郵件與我們聯繫。

My addy is k_ogin@yahoo.com and Aub's is aubrey_o_2000@yahoo.com . We will be glad to talk with you, and help if we can. 我的阿迪是k_ogin@yahoo.com和奧布的是aubrey_o_2000@yahoo.com 。我們將高興地和你談談，並幫助如果我們能。

Aubrey and Kathy Ogin 奧布里和凱茜登錄

UPDATE 2/23/2002 更新 2002年2月23日

Aub began tx in August of 2001, Intron A. At 3 months she was undetectable. Because of neurological side effects we decided to stop tx after 5 months instead of risking permanent damage. 銀行開始在德克薩斯州2001年8月，內含A.在3個月她被探測到。由於神經系統的副作用，我們決定停止後德克薩斯州5個月而不是冒著永久性損壞。 The ticks, headaches and dizziness are all gone now, but we found out this week the virus isn't. 蝨子，頭痛和頭暈都去了，但我們發現這個星期病毒並非如此。 Aub still wants to fight this dragon, more than ever! 銀行仍想打擊這一龍，比以往任何時候更！ She's an inspiration to the family, she's been through so much and never really complains. 她是一個靈感的家庭，她是經過這麼多，但沒抱怨。 When the doctor called with the PCR results he asked me what I was going to tell Aub. 當醫生要求與PCR檢測結果，他問我是要告訴奧布。 I told him the truth. After the initial shock wore off, she said she was normal before she knew she had this, she was normal while it was gone for that short while, and she is normal now! 我告訴他事實真相。在最初的震驚脫落，她說，她是正常的面前，她知道她，她是正常的，而這是一去不復返了，短期的同時，她是正常的吧！ Like I said, she's a true inspiration to us. 就像我說的，她是一個真正的對我們的啟示。

Love to all, Kathy 愛所有，凱茜

丙型肝炎雲和抒情的故事

zhaoniupai@163.com (zhaoniupai) — Mon, 25 May 2009 12:06:09 +0800

丙型肝炎雲和抒情的故事
雲和Dennis ，又名抒情 Hi, we are Dennie and Vivien, we live in Akron, Ohio. 您好，我們是丹尼和雲，我們生活在俄亥俄州阿克倫。 We both have Hepatitis C and this is our story. 我們都丙型肝炎，這是我們的故事。I, Vivien, am writing this in the first person, but I write for both of us.一，雲，我寫這篇文章中的第一人，但我寫的兩地發展。 We have a somewhat unique perspective because we are not only heppers, but we each LIVE with a hepper, so we see both sides of the situation.我們有一個獨特的觀點有些是因為我們不僅heppers ，但我們每一個生活在一hepper ，所以我們看到雙方的情況。

My husband and I met in 1972.我丈夫和我會見了於1972年。 Dennie was recently divorced and I was having problems with my marriage.丹尼最近離婚，我是有問題，我的婚姻。 He was the father of two boys, I was the mother of three boys.他的父親，兩個男孩，我是三個孩子的母親男孩。 We worked together in a bar and became good friends.我們一起在一家酒吧，並成為好朋友。 This was a period of transition for both of us and we indulged in some heavy partying together. We drank and used drugs recreationally.這是一個過渡時期對於我們兩個來說都是我們沉迷於一些頻繁聚會在一起。我們喝酒和吸毒娛樂。 We also were involved in a "group tattooing" session with several of our partying friends.我們還參與了“組紋身”會議與幾個朋友的聚會。 During this period of time my first husband was killed suddenly in an auto accident and his grief stricken parents abducted my children.在這段時間裡我的第一任丈夫突然死亡的汽車事故中和他的父母悲痛受災綁架我的孩子。 With no money or resources, I was unable to find them and get them back for some time. These events increased my use of drugs and alcohol as a way of dealing with my losses.由於沒有錢或資源，我是無法找到他們，讓他們回到了一段時間。這些事件增加我國使用毒品和酒精的方式處理我的損失。

After about a year of partying, we both became noticeably yellow and I was admitted to a hospital with severe abdominal pains.經過大約一年的聚會，我們都成為明顯的黃色，我被接納為醫院重症腹痛。 I was diagnosed as having Hepatitis B. Not being terribly bright at that time, I insisted on being released to go back to my partying.我被確診為乙型肝炎不被可怕的光明在那個時候，我堅持要求被釋放回到我的派對。 I had several bouts of severe pain after this and I went to the emergency room twice for treatment.我曾多次發作的劇烈疼痛後，我去了兩次急診室接受治療。 I was told that there was NO evidence of me having had Hepatitis B, and I was given a tranquilizer and an antacid and then sent home.我被告知，沒有任何證據表明我有過乙型肝炎，我獲得了鎮靜劑和抗酸劑，然後送回家。 Dennie had milder symptoms, but we both were quite sick for a while.丹尼溫和症狀，但是我們都非常生病了。 We gradually began to feel better, chalked it up to partying too much and went on about our business.我們逐漸開始感覺更好，用粉筆它最多派對太多，他對我們的業務。

After a couple years of living together, we were married in 1975.經過多年的一對夫婦生活在一起，我們於1975年結婚。 We had fought to find my sons and eventually managed to regain custody of them.我們曾試圖找到我的兒子，並最終成功地恢復他們的監護權。 Our daughter was born in 1976 and we obtained custody of Dennis' boys.我們的女兒出生於1976年，我們取得的監護權丹尼斯男孩。 This gave us six children to care for and we settled down to raise our family. We continued to party on an occasional weekend basis only, and concentrated on making a good life for our children.這給了我們6個孩子要照顧，我們定居下來，以提高我們的家庭。我們繼續黨偶爾週末唯一基礎，並集中於有一個良好的生活為我們的兒童。

The children grew up fast and we watched them gradually move out and start families of their own.孩子們迅速成長起來，我們看著他們逐步遷出，並開始自己的家庭。 Dennie had gone back to his original occupation as a truck driver, both local and long distance.丹尼已經回到他原來的佔領，一名卡車司機，本地和長途。 Life was fairly good for us.生活是相當不錯的，我們。 One day Dennie became nearly paralyzed at work.有一天，丹尼幾乎癱瘓在工作。 He was found to have cervical disc disease and arthritis.他被發現有頸椎間盤突出症和關節炎。 He was no longer able to pass the required physical for his employment.他不再能夠通過必要的身體，他的就業。 He was put on massive doses of progressively stronger pain killers.他把大量服用止痛藥，逐步強大。 Our life began to crumble at this point, but our love for each other grew stronger.我們的生活開始崩潰在這一點上，但我們的愛對方卻越來越強。

I had suffered from fatigue for years, and had been referred to endless physicians and psychiatrists with no improvement. The medications they prescribed for me nearly caused me to have a nervous breakdown and I became more and more depressed over my inability to feel well.我曾遭受疲勞多年，並已提交給無休止的醫生和精神病醫生沒有改善。處方藥物，他們對我來說幾乎令我聯想到了精神崩潰，我變得越來越憂鬱了我無法感覺良好。 I finally gave up on receiving any help from that source.我終於放棄了接受任何幫助這一來源。 I learned to live with it and tried to offset the symptoms with diet pills.我學會了要住在一起的，並試圖以抵消症狀與減肥藥丸。 Self medication had become a way of life for me.自藥品已成為一種生活方式對我來說。

In March of 1996, I went to the local clinic for a mild case of bronchitis and routine blood work was done. 1996年3月，我去了當地的診所為輕微的支氣管炎和血常規的工作要做。 I received the call a few days later, my liver enzymes were a little high and they wanted to do a follow up test, probably nothing to worry about.我接到電話，幾天後，我的肝酶都有些高，他們想做的事情的後續試驗，大概沒有什麼可擔心的。 The second round of tests included a liver profile, and I received the news a few days later.第二輪測試包括肝形象，我收到的消息，幾天後。 The doctor told me over the phone that I was negative for antibodies to Hepatitis B, but did show antibodies for Hepatitis C, formerly known as Non- A, Non- B Hepatitis.醫生告訴我，我為陰性B型肝炎抗體，但沒有表現出C型肝炎抗體，以前被稱為非甲非乙型肝炎。 He suggested that Dennie be tested too.他建議，丹尼測試了。 He was found to be positive also. I was in shock and then in denial.他被認為是積極的也。我在休克，然後否認了這一消息。

We both received letters from the Health Department with info on communicable diseases.我們都收到保健部與信息有關傳染病。 I was told by the doctor that I should not kiss my grandchildren.告訴我的醫生說，我不應該吻我的孫子。 This information of course was false, but it just goes to show how little the doctors knew at this point.這一信息，當然是假的，但它只是顯示多少醫生知道在這一點上。

Life went on, I was in denial and refused to think about it.生命的流逝，我在否定和拒絕去想它。 During this period, Dennie had a mild heart attack, but suffered no serious damage.在此期間，丹尼有輕微心髒病發作，但沒有受到嚴重損害。 On January 2, 1997, I had a major heart attack. 1月2日， 1997年，我有一個重大的心髒病發作。 I survived against all odds and I am fine now, with minimal damage, just a metal stent in my artery.本人倖免於難克服一切困難，我現在很好，以最少的損失，只是在我的金屬支架動脈。 But this event pushed me into reassessing my life and where it was going.但是這一事件把我推到我的生活和評估要到哪兒。 We began to seek out information and advice.我們開始尋找信息和諮詢意見。 The addition of a computer to our lives was the motivating factor and we began to learn more about our illness, enabling us to make informed decisions and interact with others.增設一個計算機對我們的生活是激勵因素，我們開始更多地了解我們的疾病，使我們能夠作出明智的決定，同其他人交往。

We started on a basic regimen of vitamins, milk thistle, gingko biloba, siberian ginseng and coenzyme Q10.我們開始的一項基本制度的維生素，牛奶薊，銀杏，西伯利亞人參和輔酶Q10 。 We both had biopsies in the summer of 1998.我們都已經活組織切片檢查在1998年夏天。 My biopsy result was focal minimal early cirrhosis and non-specific severe chronic inflammation associated with acute focal inflammation, portal cells, clinically Hepatitis C.我國活檢結果是聯絡最低限度的早期肝硬化和非特異性嚴重慢性炎症與急性局灶性炎症，門戶細胞，臨床上丙肝

Dennie's biopsy showed adequate liver with fatty change associated with fibrosis with psuedolobules.丹尼的活檢顯示足夠的肝脂肪變性與纖維化psuedolobules 。 No evidence of bile stasis.沒有證據表明膽汁淤積。 Extensive fibrosis noted.廣泛纖維化指出。 Fatty change with cirrhosis.脂肪變性肝硬化。

We embarked on a study at the University Hospital of Cleveland involving the use of Infergen on treatment naive patients. We were both considered to be unsuitable for combo treatment because of our heart conditions.我們開始研究在克利夫蘭大學醫院涉及使用Infergen幼稚的患者治療。我們都認為是不適合組合的待遇，因為我們的核心條件。 Dennie started first and was put on 9mcg.丹尼開始第一次被放在9mcg 。 3 x weekly. 3 ×每週。

After three months, I was put on the same dose of Infergen and Dennie was upped to 15 mcg.三個月後，我被放在相同劑量的Infergen和丹尼被調升為15微克。 At the end of another three months, we were both discontinued as non-responders.在結束3個月，我們都停止非應急。 Our enzymes had stayed about the same, and my platelets and WBC were steadily dropping to alarming levels.我們的酶一直保持不變，而我的血小板和白細胞的穩步下降到驚人的程度。 Our viral loads had more than TRIPLED during the course of the treatment. The Infergen treatment was well tolerated by both of us, but unfortunately, it didn't work for us.我們的病毒量已增加了三倍以上的過程中的治療。 Infergen治療的耐受性良好，我們兩個，但不幸的是，它並沒有為我們工作。 We were genotyped but they were unable to determine a type for either of us. The theory is that the virus has probably mutated too badly to be classified.我們基因，但他們無法確定一個類型的任我們。原理是，病毒可能突變過於嚴重分類。

About six months later, Dennie attempted the daily dosing Infergen in a study conducted at University Hospital.大約半年後，丹尼試圖每日劑量Infergen中進行的一項研究在大學醫院。 He ended up in the 9 mcg daily group, but when he showed no response, they again raised the dose to 15 mcg.他最終在9微克日報報業集團，但是當他發現沒有任何反應，他們再次提出了劑量為15微克。 His viral load shot up again and there was no improvement in his ALT and AST.他的病毒載量再次開槍，也沒有改善他的ALT和AST 。 He was discontinued again as a non-responder.他再次停止作為一個非回覆。

With our gastro's approval, we continued to use the vitamins and herbs.與我們的胃腸道的批准，我們繼續使用維生素類和草藥。 Since going off treatment and doing nothing but the herbs and vitamins, we had liver enzymes in the high normal range for the first time in years.由於燃放治療和無所作為，但中藥和維生素，我們不得不肝酶在正常範圍內的高多年來首次。

Dennie has been on medications for pain for some time now.丹尼一直疼痛的藥物有一段時間了。 He originally was put on them to alleviate his arthritis pain, but now it's needed for all his health problems.他原本是把它們為減輕他的關節炎疼痛，但現在需要他的所有健康問題。 In addition to advanced cirrhosis, he suffers from cervical disc disease, arthritis, fibromyalgia, bursitis, and emphysema. He is treated by a pain management clinic and takes Percocets, Somas, and wears a morphine patch constantly.除了先進的肝硬化，他患有頸椎間盤突出症，關節炎，纖維肌痛，滑囊炎，和肺氣腫。他是疼痛治療診所和管理需要Percocets ，特派團，並戴著嗎啡補丁不斷。

I am beginning to notice more fatigue and increased problems with fluid retention.我開始注意到更多的疲勞和增加液體瀦留的問題。 Our bloodwork results are gradually becoming worse.我們bloodwork結果是逐漸惡化。 Unless a miracle happens and a medication becomes available that will work for us, we both face the ultimate decision of transplant.除非有奇蹟發生和藥物，將獲得為我們工作，我們都面臨著最終決定移植。 Dennie has made the decision NOT to have one for many reasons, the main one being that his overall health is so poor that he wouldn't be considered a good candidate for transplant anyway.丹尼已經決定不有許多原因，主要是他的總體健康狀況非常差，他將不被視為一個良好的候選人，移植反正。 I, of course, would rather NOT have to have one, but am not ruling the possibility out at this time.我當然不願意必須有一個，但我不排除有可能在這個時候。

Now for the real issue, how do two people with hepatitis C get along?現在真正的問題，怎麼兩個人丙型肝炎相處？ We have had to make major adjustments in our lifestyles but have done it so gradually that we didn't notice it happening.我們不得不作出重大調整，我們的生活方式，但這樣做，以便逐步，我們沒有通知它發生。 We help each other, when one has a bad day, it seems like the other rallies.我們互相幫助，當一個人有一個糟糕的一天，好像其他集會。 It is hard to get things done, but there are definite advantages to living with someone who truly knows what you are going through. There are times when we just pass each other and nod.這是很難做事情，但也有一定的優勢，生活與人誰真正知道什麼是你正在經歷。有些時候我們只是通過彼此點頭。 There are times when we hold each other tight and cry together.有些時候我們彼此緊，哭在一起。

There are good times and bad times, but we are always together and our lives are intertwined in every way.有美好的時光和壞的時候，但我們總是在一起，我們的生命是相互聯繫的各種方式。 There are times when we get on each other's last nerve too.有些時候我們對彼此的過去神經太。 Sometimes it's difficult to look at each other.有時很難看對方。 It's like seeing a reflection in a bad mirror...the pain, confusion, sadness and regret are there in the other's eyes.這就像看到了反射鏡...一個壞的痛苦，混亂，悲傷和遺憾的是，在對方的眼睛。 There is also the feeling of complete understanding and acceptance though. There are no feelings of anger or resentment towards each other...we got this together, we are in this together and we will stick it out.也有感情的完整理解和接受的。沒有感情的怨恨或者憤怒對彼此的...我們得到這個合作，我們在此一起，我們將堅持到底。

At this time, we are resting, waiting to see what will come along, and trying to take care of ourselves to the best of our ability.在這個時候，我們正在休息，等著看什麼走吧，並試圖照顧自己，以盡我們的能力。 We are sharing our story in the hope that someone will be able to learn something from us, just as we have learned from others.我們分享我們的故事，希望有人將能夠從我們這裡學到一些東西，就像我們從他人。 We have not given up the fight, we are just searching for new weapons.我們並沒有放棄鬥爭，我們只是在尋找新的武器。

瑪麗醫院輪候肝臟移植病人與家屬須知事項

zhaoniupai@163.com (zhaoniupai) — Wed, 20 May 2009 01:38:59 +0800

作者 : 瑪麗醫院肝臟移植組一．什麼是肝臟移植？肝臟移植是治療成人與兒童末期肝病的最好方法。肝臟移植手術是將有病的肝臟切除，以健康的肝臟取代之。手術成功率高，患者術後可重過正常生活。從1991年至今，瑪麗醫院完成了300多例的肝臟移植，成功率近年達90%以上。二．什麼人需要接受肝臟移植？以下是需要接受肝臟移植最常見的疾病：1.　B型、C型肝炎或其它病因造成的肝硬化2.　急性肝衰竭3.　代謝性疾病，如威爾遜病4.　某些早期肝癌而肝功能差的病人5.　膽道閉鎖三．什麼時候最適宜進行肝臟移植？當你的肝臟嚴重受損，運作不良，出現下列併發症時，你應考慮進行肝臟移植：1.　肝昏迷2.　上消化道大量出血3.　腹水引起腹脹，踝關節水腫4.　腹水感染5.　出血傾向6.　黃疸（眼白髮黃）7.　全身虛弱不適，影響生活質素8.　早期肝癌9.　小兒生長障礙當你需要一個新的肝臟時，越早手術，成功率越高。四．肝臟移植後的情況：肝臟移植手術的成功率約90%，大多數病人在接受肝臟移植後，可以恢復正常生活。為了防止排斥，你必須長期服用免疫抑制劑（但劑量會逐步減少）等藥物，同時需要定期在肝臟移植門診覆診。五. 移植肝的來源：移植肝臟的來源有兩個：一是腦死亡病人捐贈的肝臟（屍肝），二是活人捐出部分肝臟（活體肝）。1.腦死亡病人捐肝 ( 屍肝 )你將加入輪候屍肝的名單，並依照以下準則等候肝臟：- 你的血型- 你需要接受手術的緊急程度- MELD/PELD 評分顯示你的肝病之嚴重情況。MELD 適用於成年病人， PELD則適用於18歲以下的病人- 你已等候的時間MELD是終末期肝病評估模式的縮寫，是一個用來分配肝臟的評分系統，適用於成年病人。 MELD 評分是利用方程式，根據病人的血清總膽紅素、血清肌及國際正常化比值 ( INR ) 讀數來預測病人在不接受移植手術的情況下三個月內死亡的可能性。評分由最低的6分至最高的40分 ( 40 分以上的病人不會獲得額外優先權 ) 。病人的評分會經常更新，因為病人在等候期間病情可能會惡化。這個評分系統確保肝臟能夠分配給當時輪候冊上評分最高及情況最危急的病人。PELD是兒童終末期肝病的縮寫，它是一個用來分配肝臟的評分系統，適用於兒科病人。 PELD 評分是利用方程式，根據病人的血清總膽紅素、血清白蛋白、INR 讀數、生長遲緩 (根據性別、體重及身高來判斷 )及列入輪候冊時的年齡預測病人在不接受移植手術的情況下三個月內死亡的可能性。評分由-10分至40分或以上。病人的評分會經常更新，因為病人在等候期間病情可能會惡化。這個評分系統確保肝臟能夠分配給當時輪候冊上評分最高及情況最危急的病人。患有代謝性疾病的病人列入輪候冊後每3個月會額外獲得2分。肝細胞肝癌病人不會獲得額外的評分。如出現同分的情況，輪候時間較長的病人會優先獲得手術機會。腦死亡病人捐贈肝臟（屍肝）必須由病人家屬簽署同意書，及沒有任何金錢報酬。這種捐贈手術無法預知時間，且通常在夜間進行。在加入等候捐贈名單後，你需要攜帶傳呼機或手提電話，以便在接到通知後，兩小時內到達醫院。遺憾的是，過往幾年香港屍肝捐贈是很有限的，一年平均大約20例。根據患者的血型，一般需等候12-36個月之久，在等候期間，患者的病情可能進一步惡化或出現併發症。你可能出現自發性細菌性腹膜炎，假如情反覆出現，可能導致腹腔嚴重黏連而令肝臟移植手術難以進行，甚至無法進行。括來說，肝病的併發症可能影響肝臟移植的成功率。事實上，瑪麗醫院等候肝臟移植的患者中，大約有40%在等候期間死亡；在深切治療部等候緊急捐贈的病人，更只有少於10% 的病人得到屍肝捐贈。當你獲分配了一個可以用作移植的屍肝，移植聯絡員會致電通知你入院。你應該將情況告知你的家人，並立即停止飲食，以準備接受手術。你可以將所有醫生處方的藥物帶到醫院。入院後，醫護人員會立即為你進行一連串檢驗，包括驗血、細菌培植、心電圖和肺部X光檢查，而麻醉師亦會為你做評核。當值的移植外科醫生會向你解釋手術的性質、目的和風險。你也須在手術同意書上簽名，表示明白手術的成功率、併發症率，及明白手術有機會無法完成。昏迷或失去認知能力的成年病人由監護人或近親簽署同意書；18歲以下身體狀況欠佳或無法自行簽署同意書的未成年病人，由父母、監護人或親屬簽署。你和你的家人必須明白，醫護人員會一直為那可能在死後捐出肝臟的捐贈者進行評估和檢驗，但捐贈者的身體狀況可能會突然發生變化。即使移植聯絡員已經通知你入院，但在以下的情況下，捐贈者可能不適宜捐出肝臟：1)　捐贈者患有乙型肝炎、丙型肝炎或後天免疫力缺乏症測試呈陽性反應2)　捐贈者血壓不穩定3)　供肝手術期間，負責取肝的外科醫生檢驗肝臟後發現肝臟不健全、異常、功能有疑問假如移植手術無法進行，移植外科醫生會向你解釋手術終止的原因，然後會安排你出院。下一個可用作移植的肝臟會分配給到其時輪候名冊上MELD/PELD評分最高的一位病人。2. 活人捐肝（活體肝）現在的醫療技術可從活人身上取出部分肝臟植入接受者體內。在1989年，這種手術首次應用在兒童方面，1994年起則開始應用在成人間。移植肝臟的大小，取決於捐贈者與接受者的體形配對，左邊肝臟（大約35%）或右邊肝臟（大約65%）都可以移植，手術後捐贈者剩餘的肝臟在2-3個月左右即可增生至原來的大小。選擇活體肝移植，必須格外小心權衡接受者與捐贈者的利益。接受者的利益-可在病者病情惡化前進行肝移植，成功率較高-避免在等候期間死亡的危險( 等候期間總體死亡率為40%，深切治療部等候緊急捐贈的病人死亡率為90% )-從活體取出之肝臟的機能較好捐贈者的危險-體檢與外科手術造成的不適、痛楚與併發症-需留醫7-14天-需停止工作6-8星期-永久的外科疤痕-大約 20%的機會出現併發症( 傷口感染、切口疝、出血、膽漏、膽管問題、感染、肺炎、中風、肝衰竭甚至須要接受肝臟移植等 )-大約0.5-1%的死亡危險。日本、美國和歐洲已先後報導7例捐贈者死亡個案。3. 什麼人適合做活體肝捐贈者？做活體肝捐贈者最重要的原則是：絕對自願，無任何強迫因素或金錢及物質利益的驅使。捐贈者應清楚明白以下各點：－　手術帶來的痛苦和危險（併發症發生率為20%），甚至死亡－　捐贈後，接受者手術未必成功（接受者手術成功率為90%）－　捐贈決定完全出自於個人願望，與家庭和醫務人員的外來壓力無關－　任何器官移植不會有任何金錢報酬－　有權在任何時候，無需任何理由，撤銷捐贈決定肝臟移植小組將考慮任何一位明白以上事項，而絕對自願的活體肝捐贈者。預備捐贈者，需接受一系列評估檢查，包括血液、電腦掃瞄、肝動脈造影等，如有需要時接受皮外肝臟活組織檢查，所需時間視乎臨床情況而定，大約半天至一星期。確定捐贈後，院方在某些情況下須根據香港法例向人體器官移植委員會申報，取得批准後方可進行手術。如有任何問題，請致電 28555800與肝臟移植聯絡員林姑娘或李姑娘聯絡。捐贈者手術根據接受者的體型和需要，捐贈者可以捐出左側肝段 ( 約20% ) 、左葉肝 (約 35 % ) ，或右葉肝 ( 約65% ) 。捐贈手術前一天，捐贈者將以輕瀉劑暢通腸道。捐贈者在術前約8小時不得飲食。手術會以全身麻醉進行。假如外科醫生懷疑捐贈者不適合捐出肝臟，他會在捐贈者近臍位置通過一個小傷口進行內視鏡檢查。否則，外科醫生將需要在捐贈者身上開一長切口。圖一顯示切口的一般位置和大約的長度。當外科醫生確定捐贈者的肝臟正常，適合進行捐贈手術，他首先會切除捐贈者的膽囊，並在膽囊管插管，以進行術中膽管造影術。切除膽囊的原因是它位於肝臟中心表面，會妨礙外科醫生切割肝臟。失去膽囊對捐贈者往後的生活質素並無影響。然後，相關的出入流血管和膽管會被分離。外科醫生會因應不同肝臟捐贈手術在肝臟表面進行切割。最後，在所有相關的出入流血管被分離和結紮後，捐贈的肝臟部份切除完成。手術歷時約6小時，但有可能更長。捐贈者手術在下列情況下可能中止：1. 發現捐贈者的肝臟異常，不適合作捐贈；2. 接受者在開腹手術後發現因為各種原因不適合行肝臟移植。瑪麗醫院的肝臟移植組對術前評估捐贈者和接受者是否適合接受手術非常謹慎，但開腹手術後的意外發現，導致手術中止的情況亦可能發生。遇到這種情況，雖然捐贈手術沒有完成，但捐贈者的腹部也會留下一個傷口。捐贈者手術與接受者手術是同時進行的，這樣才能夠配合病肝切除和新肝植入的時間。接受者手術接受者的開腹程序跟捐贈者的相似 ( 但通常時間較長 )。進入了接受者的腹腔，外科醫生會決定是否可以進行肝臟移植手術。在下列情況下，手術會被中止：1. 腹腔內的液體受到感染；2. 腹腔嚴重黏連，妨礙分割肝臟或出入流血管。發生嚴重黏連的原因是反覆感染和過往的腹腔手術；3. 癌症擴散。雖然外科醫生已積極在手術前排除上述的可能性，術前評估仍然有可能無法診斷某些導致移植手術無法進行的情況。當外科醫生排除了任何肝臟移植的禁忌情況，他會分離肝臟的出入流血管，並切除病肝。當移植肝準備妥當，外科醫生會吻合相關的血管和膽管，然後將移植肝植入病肝的原來位置。整個手術可能需時 12小時或以上，視乎病人的情況。手術後，接受者會被送入深切治療部接受監護。接受者逗留深切治療部的時間並不一定，視乎接受者的康復速度。接受者手術有可能導致受體死亡，估計屍肝移植接受者手術的併發症發生率約為15-20%，活體肝移植的則為30%。嚴重的併發症包括：- 肝動、肝靜或門靜栓塞- 原位肝無功能- 肝功能遲緩- 膽管併發症- 肝炎復發或排斥導致肝臟衰竭- 腹腔內出血- 膿毒症- 腎衰竭- 肝癌復發輕微的併發症包括：- 傷口感染- 肺部問題 ( 感染、胸膜腔積液、肺部水腫 )- 糖尿病- 高血壓移植手術後，接受者需要長期服用免疫抑製藥物。目前的免疫抑制方案包括：兒科病人以FK506 (Tacrolimus ) 和 Prednisolone 合併治療：；成年病人則接受FK506 和 MMF (Cellcept) 合併治療。每個病人服用的劑量是不同的。其他常用的藥物包括： 1)預防乙型肝炎復發的 Lamivudine ；2) 預防真菌或黴菌感染的 Fluconazole 或Nystatin ; 3) 預防鉅細胞病毒感染的 Acyclovir ；及4) 預防肺炎的 Septrin。Revised 22/4/2004

“爱肝一生”资助计划启动

zhaoniupai@163.com (zhaoniupai) — Sat, 27 Sep 2008 17:11:18 +0800

　　目前，我国肝炎患者的治疗意识和疾病认知单薄、急需专业规范的就医指导。

　　2008年9月23日，中国肝炎防治基金会、中华爱肝网、搜狐网、人民网联合启动了“爱肝一生”计划，目的是在未来20年内，直接对肝病患者进行治疗指导和资助。

　　“爱肝一生”计划得到了中国肝病防治领域众多专家的支持，中国肝炎防治基金会常务副理事长王钊女士，解放军302医院院长周先志教授，还有我们熟悉的贾继东教授、庄辉院士纷纷在今天的计划启动仪式上致辞。

　　庄辉院士表示，对肝炎患者进行规范化治疗，不论对社会还是个人都十分重要。今天，“爱肝一生”计划的启动，就是一个良好的开端。希望更多道德高尚、医术高超的医生加入其中，也希望更多的肝病患者关注和参与进来。

　　据中华爱肝网的CEO杨勇介绍，这项计划主要包括以下三个方面：

　　1、患者资助

　　通过中华爱肝网（http://www.519liver.com/）或经合作医院推荐后提交《肝病患者“爱肝一生”计划报名表申请》，根据申请人所患肝病情况，依据公平公正的筛选程序，每月选出500人，给予每人每月100－300元甚至全额的无偿赞助治疗，以此来鼓励更多患者选择国家正规医院，接受专业的治疗。预计在全国范围内，该计划的合作医院将达到100家。

　　2、患者教育

　　中华爱肝网作为计划的官方网站，将以专业、权威、及时、全面的肝病防治信息为基础，为关注和参与计划的患者和社会公众提供一个了解和学习肝病知识的平台。并且逐步向患者提供专家资讯、专家预约等服务。

　　3、搭建交流平台

　　无偿为医生和患者搭建交流平台，通过医生专栏、患者博客、论坛、在线专家访谈等方式，为医患构建网上的精神家园。

　　BTW：庄辉院士提供的数据显示，慢性乙肝患者平均每人每年总的医疗费用为20,477元，代偿期肝硬化患者为36,323元，而失代偿期肝硬化和肝癌患者分别为36,757元和38,267元。

相关阅读：中华爱肝网发言稿。

乙肝科普视频

zhaoniupai@163.com (zhaoniupai) — Thu, 25 Sep 2008 04:34:55 +0800

　　1）视频描述：想问一下，哪家报纸、电台、电视台没做过治愈乙肝的广告？为乙肝歧视推波助澜的媒体们，你们的良知在哪儿里？这是谋财害命啊！希望媒体有点良知，正确地宣传乙肝知识。

　　从公众目前接受到的错误信息来看，他们拒绝乙肝患者的做法无可厚非，谁希望被乙肝传染？大家责怪他们有什么用？我们不应该和那些歧视我们的人做斗争，我们应该把主要力量放在督促政府严查虚假广告，并且号召社会公益团体做正确的乙肝宣传，而不是在这里坐等他人来救自己！

　　外企在其本国歧视乙肝会被判违法，为什么在中国，90%的外企（包括那些大的外企）会歧视乙肝？

　　2）视频作者：紫烦。视频来源：（http://you.video.sina.com.cn/b/8432265-1338117142.html）。这段乙肝科普视频做的非常到位，里面涉及的乙肝信息相当广泛，无论是不是乙肝携带者，都应该看看。最后，感谢紫烦！

七个优秀的乙肝网站

zhaoniupai@163.com (zhaoniupai) — Sun, 21 Sep 2008 12:45:59 +0800

　　以前，我写过一篇名为《如何通过互联网来识别乙肝医药广告》的博文，分享了3种识别假医假药的方法。另外，在《注意：乙肝特效药信息》一文中，我也建议大家最好到专业、非商业性的医疗网站去获取乙肝信息。

　　在这篇博文里，我想推荐几个比较优秀的乙肝网站，供大家在上网时参考。

　　1、搜狐-乙肝频道（http://health.sohu.com/yixingganyan/）。搜狐凭着自己的实力，经常请一些知名的乙肝专家做节目。通过这个平台，我们可以近距离地聆听乙肝专家的意见。

　　2、肝胆相照论坛（http://www.hbvhbv.com/forum/）。这个不用我多说了吧？我曾经被乙肝假广告忽悠，是肝胆相照让我醒悟。肝胆相照被关过两次，所幸都挺了过来。战友们相互帮助、相互鼓励，我喜欢这种氛围。

　　3、战胜乙肝网（http://www.hbver.com/）。早期的乙肝个人网站，优点是内容丰富。缺点是，由于该网站的大部份内容都是转载的，有些资料不够客观，甚至相互矛盾，大家在那找资料时要注意分辨。

　　4、骆抗先的乙肝频道（http://blog.sina.com.cn/luokangxian/）。骆老是广州南方医院的医生，他的医德和医术都很令人敬佩。他虽年事已高，但开博一年多来，每周仍会抽出一天的业余时间，耐心地回复博客网友的问题，乐在其中。他的博文，给我的第一感觉是，没有错别字，再一个就是严谨。他的每一篇博文（包括文章后面的回复）都很有价值。博客的互动性很强，我想，这和他的医德和医术是分不开的。

　　5、蔡大夫网络与生活（http://www.doctorcai.net/）。蔡大夫是北京地坛医院的医生，曾撰写过大量的传染病科普文章，也曾为很多乙肝携带者维权提供医学帮助，战友们都亲切地称呼她为“蔡妈妈”。她的网站时常更新，除了讨论乙肝之外，还涉及其它肝炎、以及各种传染病。文章简洁、通俗易懂。

　　6、陆军(金戈铁马)的BLOG（http://blog.sina.com.cn/antidiscrimination/）。这个也不用我多说了吧？铁马成立了益仁平中心，主要是为乙肝、艾滋病等群体的生存状况而奔走。国内的各大乙肝维权案例中，几乎都有铁马的身影。当然，他们的工作不限于此，只要是公益方面的，他们都积极参与。

　　7、无忧乙肝博客（http://www.51hbv.com/）。也就是本博客，在这里毛遂自荐一下。开博一年多来，我花了大量的业余时间去维护它。我希望提供一些比较权威的乙肝信息，所以，我花了很多时间去选稿、编辑。对于网友们的提问，我也是尽量回答。

　　好了，今天就推荐这几个吧。如果你有不同意见，或发现其它优秀的乙肝网站，也请留言告诉我。

访问本博的4种方法

zhaoniupai@163.com (zhaoniupai) — Sat, 30 Aug 2008 10:22:34 +0800

　　访问无忧乙肝博客的方法，主要有4种：

　　1）电脑上网，网址为http://www.51hbv.com/ 。这种方法最常用，但是由于众所周知的原因，我们不可能24小时呆在电脑前。

　　2）RSS订阅，Feed地址为http://feed.feedsky.com/51hbv 。这种方法也很常用，你可以通过阅读器及时看到博客上的最新文章，不用打开我的博客。我平时经常用Google Reader阅读别人的博客，方便。

　　3）邮件订阅，网址为http://www.sendmerss.com/profiles.aspx?rss=www.51hbv.com/rss.xml 。邮件订阅也是RSS订阅，只要你有电子邮箱，就能及时、方便地看到博客上的最新文章，也不用打开我的博客。该网站是英文的，我在这里简单说一下订阅步骤：

　　第一步，进入SendMeRss订阅页面，在右侧的“Add This Feed To Your Account”下，填内你的邮箱地址（填两次。经测试，163的邮箱无法确认），勾上“I agree to the Terms and Conditions”；

　　第二步，查看你的邮箱，里面有一封名为“SendMeRss Request”的订阅确认邮件，点击其中的“click here to subscribe”链接即可成功订阅。注意，不要删除这封邮件，当你想退订我的博客时，点击邮件末尾的“link”链接即可成功退订。

　　4）手机访问，网址为www.51hbv.com/wap.asp 。当你出差、等公交车、排队时，没电脑用，这时你可以用手机访问我的博客。如果偶尔用手机上网，不需要开通GPRS（每天1元）；如果经常用手机上网，建议开通GPRS（每月15元）。我几乎每天都会用手机看我的博客，看看最新的评论，或者写新的文章。

　　大家如果还有疑问，欢迎留言。