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Post Info TOPIC: Getting stronger - Jan's story


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Date: Sun Sep 24 6:27 PM, 2006
Getting stronger - Jan's story
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THE DRESDEN PROJECT


One week before the operation a friend of mine was supposed to drive me all the way from Copenhagen to Dresden and home again. Unfortunately, he broke his leg three places while he was on vacation. I decided to go to Dresden anyway without doing the operation because I was on my own now. So, I bought cheap return flight ticket (Copenhagen-Berlin) and train ticket (Berlin-Dresden). “If I am going to do this operation”, I thought, “then walking around Berlin, getting lost in the subway, and only have a minimum understanding of German language must be impossible.

I was devastated because I felt the whole Dresden Project was falling apart. It was time to call a good friend of mine and his girlfriend for help. I invited them for tee - I needed to talk now and it was urgent! That evening I told them about this eye disease that I had and that I was serious about going to Dresden and get an eye surgery done. My friend offered me to go with me, but somewhat spontaneously I refused – probably because I have been demanding too many favours from him before.

Although I had to bear in mind that an operation on both eyes was not possible because I was alone, I nevertheless decided to fill up my freezer with food, water my plants twice, buy baby soap (you know the kind with no perfume and toxic stuff), clean up my apartment to avoid infection of the eyes in case I was going for the operation anyway.

(to be continued…)



-- Edited by Jan84 at 18:47, 2009-01-21

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Date: Sun Sep 24 10:01 PM, 2006
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(Continued...)

I’ll make this very brief because people are already familiar with the treatment. I arrived late Sunday night on September 17, 2006. I went to the guesthouse and directly to bed so I would be ready for my examination the next day (day 1).

DAY 1

I arrive at the University Hospital at 10 am. There are going to examine my eyes and say whether I’m a possible candidate for crosslinking the next day (day 2).

They first examine me the same way opticians do (slit lamp, vision acuity etc.) and then they make a topographical scan. After this procedure they have to measure the corneal thickness. The corneal thickness is measured by a pen-shaped-thing that exerts a pressure on your cornea. The measurement is done in local anesthesia so it doesn’t hurt at all. However, you will see the effect of pressure the “pen” exerts on your cornea and it might be a little weird first time (I found the effect quite amazing). The effect you’ll notice is like dropping a stone into a quite lake. The stone will create waves propagating outwards.

My cornea was more than 400 micrometer thick which meant crosslinking was possible.

I then talked to Dr. Ulrike Köller about the treatment (this is also the time to ask remaining unanswered questions). To get the treatment done I have to sign a declaration.

DAY 2

I have signed the declaration, I meet the surgeon, and I’m ready to get my eyes fried with UV-light. During my operation it helped a lot talking to the surgeon about crosslinking science etc. This ways things went much faster and easier, especially because it was very disturbing being able to see all the weird things they were doing to my eyes – it didn’t hurt though, but in the beginning I felt like vomiting. Afterwards they add a therapeutical lens on both eyes to protect the cornea and to make the epithelium grow in peace. When I’m done I realize the whole world turns out green (because of the riboflavin) and very foggy. My vision according to the doctors is reduced to 20%.

Then the local anesthesia stops working which means pain. It is very hard to describe the pain I felt, but it was probably something in between eyes-popping-out-of-my-head and someone-is-continuously-rubbing-salt-into-my-eyes. There is also an enormous tear flow from my eyes. Also, my eyes got very light sensitive, so I made sure to wear a cap and sun glasses all the time. The hospital orders a cab so I can get safe to my guesthouse. They also give me painkillers and eye drops against infection etc.

DAY 3

Pain! Check-up at the hospital.

DAY 4

Check-up at the hospital.

DAY 5


Last check-up. The therapeutical lens is removed and my epithelium has re-grown. A short diagnosis and statement is written.

Next: Project “find-my-way-out-of-Germany” by using tram, subway, train, and airplane. The thing is I managed all of that. Before leaving Germany I decided to eat a proper meal and drink a good beer in Berlin. I even managed to seat an almost blind lady next to my table because she mistakenly thought I was the waiter. I had to warn her that my vision wasn't to good either, but I did my best to help her.

Now, it is time for a very long recovery period.

Jan

-- Edited by Jan84 at 18:58, 2009-01-21

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Phase Two

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Date: Mon Sep 25 12:13 AM, 2006
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Amazing!!! Friend... you are fluent in Keratoconus!!!


Those days recovering must have to long straight after the crosslinking... you are over the worst of the recovery and congratualations to you for doing it alone, that is just amazing, please continue to rest your eyes... we will be here for you, so write as much or as little as you want to...


Take Care


P.S I think because your cones are not central you will get more vision in the months to come, as usually the edges of the cone do regress.... so i think your cones are in a good postion to get regession... thats good to see on your topography...



-- Edited by QuintriX at 00:15, 2006-09-25

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Executive

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Date: Mon Sep 25 9:04 PM, 2006
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Jan, it's amasing, you did not have any support and you did both at a time! I did one per visit, for I told myself that managing on your own the whole project with both eyes done at a time is simply not possible. You proved the opposite! Well, I think your KC is less advanced than mine, so you'll have soon a better time

Besides, i recognise the views of Dresden. Beautiful city! it was called the Florence of the North. But than came the WW2...

Good recovery! The haze (its important part) will last for about a month. The most difficult time is dusk. Daylight and nightlight were fine with me. Otherwise I found it useful to moisten the eyes with physiological serum or just wettening eye drops.

Regards,
Yarsky.

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yarsky


Member

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Date: Mon Oct 2 4:49 PM, 2006
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Hi Jan84 .... you're welcome.

Nice post but ... how are you today ?

Do you smoke again ?

Ciao from Italy

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Executive

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Date: Mon Oct 2 7:32 PM, 2006
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Well done Jan... I've just finished reading your very informative post... all those photographs of food have made me hungry :) And that glass beer looks very enticing as well
Please keep us informed as to your progress.
All the best,
Hari

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Date: Mon Oct 2 9:35 PM, 2006
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Hi there Lucio and Hari,


At the moment (approximately 2 weeks after the operation) my vision is still very weak and the world is foggy. This week I'm going to be examined by two doctors in Denmark for the first time after the operation.


Take care! 


Best regards, Jan



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Executive

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Posts: 437
Date: Mon Oct 2 10:30 PM, 2006
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Hi Jan, do not worry about the haze. It goes away. Just be patient. Two weeks is a small amount of time. In 6 weeks post op it will be much better. That's my experience. Take care, Y.

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yarsky
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