为了找出什么需要面对的晚期老年性黄斑变性(被称为湿性AMD)诊断有决心和恩典,我们三个人谁患有病情讲话。(湿性AMD导致的异常血管渗漏液体或血液进入黄斑,如果不及时治疗可导致失明。)这三个人都是诚实,坦率地谈他们的恐惧,他们是如何不得不适应,他们对治疗的感受。介绍:
- 琼Hafley,89岁的退休一年级的老师谁住在休斯顿威尔,KY
- 威廉·格雷厄姆80,技术的退休头谁住在纽约市
- 埃德Pitkoff79,高管猎头顾问谁住在德拉海滩,佛罗里达州
我们问他们都是一样的一系列问题。下面是他们说的话。
问:什么是你的反应,当你第一次被诊断为湿性AMD?
Hafley:“我发现我17年前了吧。我有我的左眼看东西有问题,被告知我有一些‘渗出回到那里。’我不知道什么湿性AMD是,甚至我的医生说,“你肯定吗?”有一次,他给了我的诊断,我做了一些关于它的读数。我的一个朋友有黄斑变性,所以它真的帮她说话。”
格雷厄姆:"My father had macular degeneration, but I didn’t really know a lot about it when I was diagnosed in 2006. Because of my dad, I was very careful to watch my eyes, which were worsening gradually. But even doing that, wet AMD still snuck up on me."
Pitkoff:“四年前,我刚刚得到了一副新眼镜,当我把它们放在我的左眼是非常模糊的。我又回到了眼镜专卖店,并告诉他们,有一些与他们错了。从那里,眼科大夫看了看我的眼睛,把我送到专家,谁告诉我,在黄斑运河充满了他们所谓的出血是什么,他们说,如果我到达那里早,他们可能会救了我的左眼。”
问:什么是你诊断的最可怕的?
Hafley:“当我被确诊,你唯一可以做的事情就是服用维生素,以帮助良好的用眼。对我来说,这太可怕了想我将无法再阅读,因为我一直是一个狂热的读者。”
格雷厄姆:“我害怕有这样的想法,因为我知道这将是一个生命换,当它被发现了,我很担心,也许它应该被发现之前的一年。我不得不通过我被诊断时严重的视力丧失,并是非常可怕的。”
Pitkoff:“我担心,我将无法继续工作。这个诊断是苦了你的精神,对我来说,没有工作将是非常困难的。”
问:贵诊断影响你的日常生活?
Hafley:"I can’t read a book comfortably, so I enrolled in a talking-books service—I select book titles and they’re sent to me. When I finish one, I mail it back. It works out. I can still watch TV, and I have a large-screen I can see without a problem. I have, however, quit polishing my fingernails.
我还是做饭,但是这是很困难的。有一天,我去作一些打包的烤土豆。盒子上写的是黄色和光不能把它捡起来,使它不可能为了我看到了方向。对于大多数的事情,如果我把他们在灯光下我能读懂他们,所以我一直在我的柜台光,当我把我的洗碗机或烤箱上。最大的变化是我两年前辞职驾驶,因为当汽车没有自己的灯光,他们往往与周围环境融为一体。”
格雷厄姆:"I can’t see anything that has a dial, so I’ve put little tabs on the microwave and the remote control so I can still use them. The worst thing is when my wife asks me to turn the oven off at a certain time. Because I can’t see the digital display on the stove, it’s hard to find the off button.
八年前,我停下开车,这是一个很大的改变游戏规则。我还可以看电视,我最近买了一个75英寸的电视。我需要望远镜看着它,我用第二对,当我想看看哪个通道上一个节目是关于信息。
我去剧院每周两次。我所有的座位都在第三排,在那里,用双筒望远镜,我可以看到人们在舞台上的“。
Pitkoff:"I can still drive but the problem is I can’t read the signs on the highway. Looking straight ahead is foggy but when I look to the left or right my peripheral vision is sharp and clear as a bell. The second thing is I have two screens in front of me at work. Now I use two magnifying glasses to read my screens."
问:什么是你治疗的最困难的事情?
Hafley:“也许是因为我有他们这么多年了,但我没有找到治疗难度太大。They numb your eye, and they have a little instrument that holds the eyelids up to get to the pupils, and they put the injection in. There’s a little bubble that comes up in your eye when the injection goes in. That’s all there is to it. You don’t feel anything."
格雷厄姆:"I can be on injections every month for three months and none for five months, but I’m not going to sugar-coat it: Injections are the absolute worst. They don’t hurt but mentally they’re terrible. If you could do a pill instead, it would be better. You look down and to the left, they put the needle in and you can’t move. That whole 20 seconds is like a horror."
Pitkoff:"I have wet AMD in both eyes and having regular injections in your eye is no cup of tea. It’s also true that at best my injections can arrest the problem but will never reverse the problem. The best thing I can wish for is that my eye doesn’t degenerate worse."
问:你有什么建议给谁刚刚被诊断患有湿性AMD的人吗?
Hafley:"Get your eyes examined every year. Once you do that, make sure to do everything the doctors tell you to do. Get injections if you need them, take vitamins if you’re told to. Don’t try to doctor yourself—because if something happens to your eyes it’s a terrible feeling."
格雷厄姆:"If you think something is going wrong with your eyes, immediately go back to your doctor. The only option when you have wet AMD is to have treatment. But I also urge people to make sure you don’t let it change your life. I volunteer, I take classes, and I travel. This isn’t cancer, it’s not a killer. I want you to enjoy your life and do the most you can."
Pitkoff:"Get regular checkups on your eyes and don’t let it get past the point of no return. I used to work as a graphic designer. I would work on a drawing board, and the reflection from fluorescent lamps onto the bright white pads ruined my eyes many years ago. I wish I had gotten the help I needed much sooner."