|
| 10-02-2002 12:06:47 点击:
|
译者按：这是一篇国外角膜移植患者写的手术前后的感受的文章。应该说对大多数需要角膜
移植的患者了解这个手术前后可能对生活带来的影响有一定的帮助。但应该注意到几个情况
：1、作者是在国外，手术和麻醉方式和国内都不一样（国内一般住院手术、术中绝大多数时
间都保持清醒）。2、作者患的是圆锥角膜，手术很顺利，术后恢复非常好，但不是每个需要
角膜移植的患者都能达到那样的效果。3、作者的描写不是很具体，本文仅翻译了一部分，如
果需要全文，请参考
/cgi-bin/topic.cgi?forum=1&topic=2004&show=50
*************************
*角膜移植手术患者日记 *
*************************
*********************************************************************************
**************
在1999年2月9日，我做了角膜移植手术。我之所以做手术是因为我右眼患了一种叫做圆锥角
膜的眼病，虽然我用了硬性角膜接触镜治疗，但视力仍然变得很差。
角膜移植，如果更专业一些的术语也叫“穿透性角膜移植术”，这也是美国最常做的器官移
植手术，在1996年就做了4.5万例。因为角膜没有直接的血管供应，因此不需要组织配型。因
此等待一个角膜的供体只需要数天或数周，而不是象肝脏或者其他器官移植那样需要等待数
月，因此对患者和大夫而言，就更便于安排手术日期。
如果是其他器官正常的患者做角膜移植，那么成功率高达90％以上。在移植后数天到数周需
要注意感染的情况，一般先用广谱抗生素油膏，数天后换成抗生素眼药水。术后可能出现排
斥反应，因此应该抗排斥的激素眼药来预防这个问题。
如果您已经读过这个网站的免责公告，请跳过下面这段内容：
--------------------------------------------------------------------------------
我通常不太喜欢这种免责公告，但希望你化一点时间来阅读这个。对我而言，你们对这个站
点能够提供的信息有一个现实的期望很重要，例如，我希望你不要将这页打印下来拿在手上
跑去找你的眼科医生，说“我也要这样的治疗”。
这个日记包括了我自己做角膜移植手术的详细的个人体验，可能会让一些准备进行类似手术
的人感兴趣。然而，你必须意识到你的体验可能和我的不一样，甚至完全不一样。
影响你手术效果和最终视力的因素包括：
1、你的年龄和全身健康状况（我今年31岁，手术当天健康状况良好）
2、供体组织的质量（我是从西北狮子眼库中得到的供体非常健康，对我而言，非常般配）
注意：我并不暗示任何眼库曾经提供过劣质的角膜组织，然而，根据我的理解，某些组织供
体可以超过眼库所严格要求的质量。
3、你手术医生的技巧（我的手术医生，Dr.Gilbert，是这个领域的领头人）
4、你对所用药物的反应（我在这方面没有任何问题）。
5、你的营养结构（我饮食正常而且在手术前后补充了特殊的维生素来帮助伤口的愈合）
6、你的态度（我非常兴奋而且相信结果一定很好）
7、命运、幸运或者上帝，假如你是教徒（我不是）
虽然大多数移植效果不错，但有些效果很差。假如因为某些原因，事情不如想像那么完美，
请不要灰心而是和你的眼科医生一起努力改善你眼睛的健康状况。
我总是非常高兴收到准备或者已经做过角膜移植的人的来信，但是请谅解我不能提供医疗建
议而且从来也不试图这样做（虽然有时候情不自禁但我的确不愿意这么做）。假如你对一些
事情确实不清楚而且你的眼科医生对你的帮助不大，那么请你咨询另外一个合格合法的眼科
医生的意见。你目前的眼科医生会理解你的做法，因为角膜移植毕竟是手术。
--------------------------------------------------------------------------------
手术后记录：
--------------------------------------------------------------------------------
第一周：2月9－16日
周四的上午10点左右，Dan开车送我到医院。我们首先是填一些表格，然后过了一会他们就带
我到了术前准备的房间。我换上了医院的病号服，我们继续等待。我吃了我的防止恶心的药
。我们见到了麻醉医生，他简要地告诉我们他将在手术的整个过程中和我在一起，但他没有
告诉我所有的细节。在这次简单的谈话中没有提到在眼睛的直接注射的事。他通过我的静脉
输液通道给了我一些镇静药物。我逐渐睡着了，我模糊记得被推进了手术室。
在95分钟的手术当中，我又清醒过来。Gilbert医生已经准备将新角膜放到我的眼睛上，我和
医生说了几句让他知道我已经苏醒。在剩余的术中过程当中，我能够看到白色的灯光、奇幻
的彩色光，当医生开始缝合时他的手和器械。这非常有趣。
当手术结束后，我被送回了恢复室。当稍微一点牵拉性疼痛缓解后，手术就这么结束了！我
又可以吃喝和疯狂了！我的眼睛被包扎起来并用眼罩保护起来。
Dan开车送我回家，我减量没有在车上恶心呕吐，我只是恶心了半小时，但实在不好受。
整个下午我基本都在睡觉，晚上9点因为疼痛醒过来。Dan和我聊了一会，我决定坚持熬到明
早后就睡觉了。第二天上午我到Gilbert医生办公室简单检查了一下，然后在周五（12号）又
去检查了一次。
这张照片是我在眼科医生办公室检查的作为术后检查的部分内容拍摄的。它几乎是正好手术
后72小时，Gilbert医生非常高兴伤口已经开始愈合，当然我也一样。（图）
在这次复查时，我可以裸眼看到0.25，用小孔检查可以看出0.63那一行的几个视标，这比我
用硬性角膜接触镜的最好视力都好。
你们可以看我的新眼睛比较一下。（图）
这周的其余时间我在家附近闲逛，试着用我的新眼睛，并且开始玩电脑游戏。当我的眼睛感
动疲劳时就睡一会。眼睛还是有点疼而且怕光。但是总而言之，我开始享受休闲时光。
Dan在我在家休息时给我拍了这张照片，我想是手术后4天。你可以清楚的看到麻醉注射后留
下的皮肤瘀斑。皮肤瘀斑没有疼痛，10天后消失，但它对获得同情很有用处。
只要药物，头三天我都用托百士眼膏，一日四次。从第四天起，我开始用托百士眼药水，一
日四次。
--------------------------------------------------------------------------------
第二周：2月17－23日
我的眼睛越来越好，我还不能真正用它看东西但我开始从这只眼得到一些有用的周边视力。
我在18日拜访了Gilbert医生，他对我的进展很高兴。我可以轻易地不用任何帮助看到0.25，
用小孔可以看到0.8了,在6天中有了一些进步。我下一次复查预约到3月17日。Gilbert医生把
托百士，它对我有的刺激性，换成了1％的Pred-Forte（译者注：可能是激素与抗生素的混合
眼药），一日四次。我的眼睛还是有的畏光，但我觉得已经可以在周三，提前三天回去上班
了。
--------------------------------------------------------------------------------
第三周：2月24－3月1日
我恢复了全日的工作。我注意到我的眼睛明显好转，但是我开始遇到点麻烦，因为我的大脑
开始试着真正用右眼看东西了，但它还没有恢复得足够好。我不得不比平时更多的休息来放
松我的眼睛。在那些天没有太阳，因此我很难说是否眼睛还对光线敏感。但是对于计算机屏
幕的光线肯定感觉更好。
我还用Pred-Forte眼药一日四次，每次1滴。我知道我不喜欢这种药的味道，但我很高兴知道
我的鼻泪道还是非常通畅的。
--------------------------------------------------------------------------------
第四周：3月2－8日
我还是用从前同样剂量的同一种药物，“新眼睛”工作得很好。我本周开始一个玻璃染色的
项目并且发现我忘记了一些技巧，当你看到玻璃上一条线而不是六条线时工作更容易做。这
些都令我很兴奋！
我开始真正回复到工作中，每天12－14小时的工作也不感觉到从前那样的疲劳。我开始感觉
象一个张贴“成功角膜移植”的孩子。
--------------------------------------------------------------------------------
第五周，3月9－15日
其实没有什么新闻， 大多数同从前一样。眼睛的情况越来越好。
我注意到在早晨，在给我的旧眼睛“左眼”戴角膜接触镜之前已经能看得相当清楚。实际上
，假如我把杂志放我新眼睛的7－8英寸前就可以阅读。
14日我又根据Gilbert医生的建议开始将Pred-Forte改为一天三次。
--------------------------------------------------------------------------------
Week Six, March 16 - 22
It is nothing short of amazing! With my "new" eye, six weeks post-op, I can read
the 20/25 line on the eye chart, and make good guesses on the 20/20 line. That
means that the driving I've been doing lately has actually been legal.
When Dr. Gilbert examined my eye today, he noticed that one of the stitches was
"sagging", so it was not serving any purpose and he removed it. Ouch! If you look
closely at the photo below, you might be able to see it as a faint loop at the 7
o'clock position.
Have a look at the old eye, for comparison.
After Dr. Gilbert removed the stitch that was loose, I am to use the Tobrax drops
again, four times a day for three days. I am to continue with the Pred-Forte
three drops a day for another three weeks, and then I'll reduce the dosage again
to two drops a day.
Dr. Gilbert says there's no way to tell if my vision will continue to improve
beyond the 20/25 that it is now, but it's also unlikely to get worse. (Of course,
removing more stitches could cause the vision to change a little).
The word for now is to leave the remaining stitches in until (and if) they cause
me trouble, at which point, he'll remove them. If they never bother me, they'll
dissolve in two to five years.
I've asked when I can have my other eye done... not for at least six months. I
really don't think I'll be able to drive at night until I get my left eye
transplanted, because I still have lots of problems with that eye, especially in
the dark.
My next eye appointment is April 28.
Back to Table of Contents.
--------------------------------------------------------------------------------
Week Seven, March 23 - 29
Nothing much is going on now. The pain I had after the stitch was removed about a
week ago subsided after a few days.
We went to Vancouver, B.C., for a long weekend last Friday and my eye still hurt,
not enough to make me worry though. I decided if it was still bothering me on
Sunday afternoon that I would call the eye doctor. By Saturday afternoon, I'd
forgotten about it again because it didn't hurt any longer.
My vision in the transplanted eye seems very stable. It's great at around 8
inches to a foot away but is otherwise blurry. I think I will get glasses to wear
over that eye after all.
I have been corresponding with lots of people who have keratoconus, transplants,
or who have become candidates for the transplant surgery. Every person's story is
unique and I've grown to appreciate the community that we've been able to create
on the keratoconus mailing list (see the NKCF for more inFORMation or to join the
mailing list).
I've written two more drafts of a letter to my donor's family. I've set the time
limit of April 9, two months post-op, because I think I could struggle with this
letter forever. It makes me very emotional.
Back to Table of Contents.
--------------------------------------------------------------------------------
April Update
I continued using the Pred-Forte 1% drops three times a day, though the eye felt
so good most of the time that it was a real struggle to remember. April 25 I
reduced the Pred-Forte drops to twice a day as I'd been instructed.
On Wednesday morning, the 28th, I went to my checkup. Dr. Gilbert continues to be
pleased with the progress, though he noticed that the top layer of cells of the
new cornea seemed irritated. He thinks that's from the preservative in the
rewetting drops I'm using, or maybe from the Pred-Forte. He switched me over to
preservative-free Bion Tears to see if that clears up the irritation.
On the 28th, he also fitted me for an RGP lens, since I'm "only" getting 20/30
unassisted, 20/25 with the pinhole device. Dr. Gilbert found a lens shape and
size that seemed quite comfortable, and then we did the "better or worse?"
routine until I could easily read the 20/20 line and make good guesses at the
20/15 line. They are going to order this lens immediately, but he wants to be
cautious, so I won't start wearing it until May 9 or so (three months post-op).
I'm looking forward to the new contact lens, though I must admit I'm a bit
nervous about it. I wonder if I'm going to go through another "training" period
with it. I suspect that I will only use that lens when reading or at the
computer, though, since 20/30 is perfectly good for bike-riding and other normal
activities.
I'm still struggling with my letter to the donor family. I am going to have it
written before I get the new lens, or I might never write it. I would really
regret not having some contact with these people, so I need to get past my
emotions and hesitation.
Back to Table of Contents.
--------------------------------------------------------------------------------
May Update
I've continued using the Pred-Forte 1% drops twice a day, once in the morning,
and once after I take my lenses out.
On Thursday the 13th, I went to get my contact lens fitted on the cornea
transplant eye. Bill didn't notice any of the irritation that they saw at my last
checkup, so it looks like the new drops are helping. After letting the lens
settle for about 10 minutes, he looked at it several different ways, doing the
blink routine, and said it's near perfect, with light contact on the eye surface
at the top, the bottom, and the upper left.
Then we did the eye chart. I raced through the 20/40 line, read the 20/20 line
easily, and guessed two of the 20/15 characters. So for the first time in my life
I have 20/20 vision, at least in one eye. This is a huge accomplishment and Bill
and Sandy (the other tech) both kept saying that I've got the best transplant
outcome they've ever seen.
The first day I got the new lens, I wore it for eight hours, forgetting my
initial idea of wearing it for just four. The next day, I wore it for 10 hours,
and now I am wearing it full-time, just like my other lens, which usually
translates to 12-14 hours a day. I've had very minimal discomfort with the new
eye, which is impressive. I am making a conscious effort to use the rewetting
drops even though they haven't seemed necessary.
My next checkup with Dr. Gilbert is August 9th, six months post-op.
Back to Table of Contents.
--------------------------------------------------------------------------------
June Update
I've continued using the Pred-Forte 1% drops once a day, after I take my lenses
out.
The new eye feels completely normal. In fact, once in a while, after removing my
lenses, I even start to rub that eye! I stop right away, don't worry!!
The new eye is not unusually light sensitive, which is perhaps the biggest
success of all. I feel like a normal person once again, and sunglasses have been
relegated to sunny days and driving home in the car, since that trip takes us
directly west for about five miles.
My next checkup with Dr. Gilbert is August 9th, six months post-op.
The real news this month is that I am going to have a baby! We actually found
this out last month, on Mother's Day, but I've been keeping quiet until we saw
the heartbeat on ultrasound, which we did yesterday, 11 June. The baby is due
January 15, 2000, (not a day sooner, PLEASE!). Here's more inFORMation on this
new "project".
Back to Table of Contents.
--------------------------------------------------------------------------------
July Update
I've continued using the Pred-Forte 1% drops once a day, right before I go to
bed. It's a habit now and I don't even think about it anymore.
The new eye still feels completely normal. I almost take it for granted, but I
try not to do that as I am very lucky indeed.
I've noticed that I actually see better immediately after I remove the RGP from
my new eye. I don't really understand that. It does seem to last a good while,
since I usually don't notice when it gets "worse" again.
The vision in my new eye is so good that I can read and drive with it unaided,
though it's not perfect. I usually take advantage of this fact to give my eyes a
24-hour rest from lenses on the weekends. This also gives me time to do the
weekly enzyme soak. Between these two adjustments, I've noticed improved comfort
and increased lens wear time during the week, which is a real benefit.
My next checkup with Dr. Gilbert is August 9th, six months post-op.
The baby is coming along fine. I'm at 13 weeks today (07/10) and I'm now
officially out of the risky (and queasy) first trimester. Here's our ultrasound
photo and a more detailed update in case you're interested.
Back to Table of Contents.
--------------------------------------------------------------------------------
August Update
I had a fantastic checkup with Dr. Gilbert today, August 9. Everything is going
very well, no complaints.
I'm switching eye drops, to a more moderate drop than the Pred-Forte 1% but I
haven't picked it up yet so I don't know what it is. I am to use it one drop each
day for a month, then to taper off to every other day. I'll update this
inFORMation as soon as I pick up the prescription.
The vision in my transplanted eye is so good that I can read and drive with it
unaided, though it's not perfect. I usually take advantage of this fact to give
my eyes a 24-hour rest from lenses on the weekends. This also gives me time to do
the weekly enzyme soak.
My next checkup with Dr. Gilbert is October 4th, eight months post-op.
The baby is coming along fine. I'm at 17 weeks, 2 days today (08/09) and I've
been feeling the baby move for the past month. Here's our ultrasound photo and a
more detailed update in case you're interested.
Back to Table of Contents.
--------------------------------------------------------------------------------
September Update
I've had a bit of a setback this month and I'm pretty frustrated. Monday the
20th, I lost the RGP that I've worn on my transplanted eye since May. Don't know
when I lost it, just noticed (BEFORE I used the plunger to remove it) that there
was no lens in there when I went to take them out for the night.
Tuesday, the eye was pretty cranky, and by Wednesday morning, it was completely
horrible! I called my surgeon and they said they would work me into the schedule
that day (the 22nd).
So, there's some good news and some bad news... the good news is that the blood
vessels have healed all the way to the edge of the cornea in the nasal quadrant.
Dr. Gilbert said that normally it takes longer than this for this healing to take
place. The bad news is that the cornea is eroded through at the 2 o'clock
position clear to the running stitch, and that's what's causing all the watering
and discomfort.
He had me on FML drops every other day; he bumped me up to every day, and also
gave me erythromycin ointment to use 2 - 3 times a day. He wants me to wait three
weeks without a lens in the transplanted eye, until October 13, to see if the
erosion will heal, and if it doesn't by then, he is going to remove the running
stitch a bit early.
For what it's worth, I had three of the four "RSVP" post-transplant warning
signs: light sensitivity, vision change (from 20/30 unassisted to 20/60), and
pain. I did not have any appreciable redness. I felt a bit like the worried well
by making a visit, but obviously, it was the right thing to do for my eye, though
mostly I am only suffering from the reduction in vision and the incredible light
sensitivity. I am NOT complaining very loudly, though, because everything about
this transplant has gone smoothly and I know that many people have problems worse
than these that last for MONTHS. I don't think these problems are related to the
pregnancy (which is going fine, thanks) but I can't help but wonder if they
aren't related to the RGP being TOO comfortable and allowing 14-16 hours of daily
wear.
I have faith that Dr. Gilbert will keep my eye from going completely on me if at
all possible. He did not seem overly worried, just concerned, and indicated that
my healing in general has gone so well that even if he has to pull the running
stitch on October 13 that he is confident this transplant is going to "stick" and
that it will settle down and stop hurting me soon.
Next checkup, obviously, is scheduled for October 13, though if the eye continues
to really torment me, I will go in sooner for another re-check. My next prenatal
appointment is Monday, October 4, and I will update the baby website after that
checkup.
Back to Table of Contents.
--------------------------------------------------------------------------------
October 5th Update
I am going to go back to weekly updates, at least for the next week or two, as I
deal with the problems I've been having. See the September Update for more
details.
On Monday morning, October 4th, I went in to Dr. Gilbert's office and basically
begged him to fix my eye. It was hurting so much it was waking me up at night,
and it was red enough that people at work were noticing (not that I mind, I just
mean that it was quite visible).
My vision in the transplanted eye had dropped to 20/80 unassisted, and 20/30
pinhole (compared to the 20/30 unassisted that I was getting before the problem
started).
Dr. Gilbert had a good look around in the eye, and decided that at least part of
the running stitch needed to come out, since it had significantly loosened in a
week and a half, and it was causing significant irritation. He used numbing drops
before he started, but since one of the symptoms I was having was excessive
tears, it took probably 25 to 30 drops before my eye was actually numb -- though
I could have had surgery on the inside of my nose, which was plenty numb! He also
instilled about 10 drops of an antibiotic.
He removed the running stitch from the eleven o'clock position all the way around
to the five o'clock position, and buried the remaining ends of the stitch in the
hope that it will stay tight enough to provide some support. The first bits of
the stitch removal process were uncomfortable since I was not yet numb, but after
it was numb enough, it went smoothly. The entire process took about half an hour.
He noted that there's no signs of rejection of the cornea, which is fantastic
news. I had really worried about this but he said the host-graft margin looked
really good. He did note "moderate irritation" from one o'clock to three-thirty
positions.
I'm on different eye medications now, and on a stepped-up schedule. I'm to use
Pred-Forte, 1 drop, 6 times a day for a week, then 4 times a day for the next
week, and Ocuflox, 1 drop, 6 times a day for a week, then 4 times a day for the
next week.
I've also got to be super-careful with the eye, as Dr. Gilbert normally likes to
leave the running stitch in for an entire year, and it's only been eight months.
I've unofficially reinstated the post-surgery "no lifting over 5 lbs." rule to
help me stay aware of it.
The best thing about all of this is that I've had such improvement since Monday
already. By 2:30 Monday afternoon, the eye did not hurt at all, and Tuesday
morning, it felt like a perfectly normal eye, nothing painful about it. This
morning,Wednesday, I'm even noticing that my vision in that eye is once again
improving. What a relief!!
I do have moments when I wonder what caused this whole problem. Was it simple
corneal erosion caused by the edge of the RGP rubbing there? Is it because I'm
pregnant? Or is it because the eye is so close to totally healed that it no
longer "needs" the stitches? I think each of these factors might play a role, but
I would not reverse my decisions to have the transplant, or to get pregnant,
based on the results I'm getting so far. Even 20/80 is a massive improvement over
what I had, and I am confident in a complete recovery and my eventual ability to
wear an RGP on the transplanted cornea.
I'm to return on October 13th, and to call on any day that I don't have
day-to-day improvement. I'll update the web site again at that time.
Back to Table of Contents.
--------------------------------------------------------------------------------
October 15th Update
It's been a little more than a week since my last update, but I've been really
busy and haven't had time. Wednesday the 13th, I had a checkup with Dr. Gilbert
and everything is massively improved!!
The day he took half the running stitch out, I had discomfort for about six
hours, and then it faded away. By the next day, I was definitely seeing better
and had absolutely no residual discomfort.
Wednesday, my transplanted eye's vision checked out to 20/40 unassisted and 20/20
pinhole, so it looks like the improvement may continue to the point where it's
better AFTER the stitch removal than before! I gathered that this does not
normally happen so quickly.
The ends of the running stitch (about 50% of which remains in the eye, from the 5
o'clock to the eleven o'clock positions) are well-buried and the stitch itself
appears to being staying taut even though it no longer has support from being a
complete loop.
The erosion at the 2 o'clock position is completely healed, and the irritation
over the entire right half of the eye is very significantly reduced, to almost
none.
The pressure is still good, 18, which is right around what it normally is.
Dr. Gilbert changed my medication regime a bit as follows:
Discontinue the Ocuflox, as there is no danger of infection since the corneal
surface is intact once again.
Reduce the Pred-Forte to 4 drops a day until 10/18
Reduce the Pred-Forte to 3 drops a day until 10/25
Reduce the Pred-Forte to 2 drops a day until 11/01
Reduce the Pred-Forte to 1 drop a day until 11/08
On 11/09, resume 1 drop a day of the FML that I was using before this whole thing
happened.
On 11/16, resume 1 drop every other day of the FML, until my next checkup.
Barring any further problems, I can get a new contact lens for my transplanted
eye on 11/09, and I can't wait! We may need to refit it at that point, but in any
case, I am hoping to have a new lens for the eye before we fly to North Carolina
for Thanksgiving Weekend.
My next checkup should have been around 01/15, but we chose to reschedule it to
02/01, since my baby is due in mid-January! Dr. Gilbert says if all looks well at
that time, he will remove the remainder of the running stitch.
The one-year anniversary of the transplant will take place on 02/09/2000. I am
looking forward to that moment and if everything continues, I will consider (as I
already do) the transplant experience a complete success!
I will update this web page again either when I next have a problem or when I get
a contact lens again in early November.
Back to Table of Contents.
--------------------------------------------------------------------------------
October 22nd Update
I really meant for my October 15th update to be my last weekly update, but
yesterday changed all that.
Yesterday, I lost the RGP I've been wearing in my left eye. I've used this exact
lens in that eye for more than a year, and have never had any problems, and it's
always fit perfectly. I believe that being pregnant has changed that eye, and
that's why I lost the lens.
It's always a pain to lose a lens, but my right eye, the transplanted one, is so
good that I didn't even notice I'd lost the left lens until hours later when I
went to remove it for the night.
Because my vision, with no contact lenses, is so good right now, I think I am
going to try the replacement right lens in November and then will decide if I
even need it or not. Let me rephrase that statement: For the first time in my
life, I have acceptable, functional vision without any corrective devices
whatsoever. If that's not a miracle, I've never heard of one.
I'll reevaluate this whole needing-a-lens thing in February with Dr. Gilbert,
after the baby is here. Maybe I will want RGPs again to fine-tune my vision, but
I think that I will enjoy a few months without lenses.
| |
网友评论：（只显示最新10条。评论内容只代表网友观点，与本站立场无关！）