23 Years with Keratoconus and Counting

23 Years with Kerataconus and Counting

The Keratoconus Group has been both a source of information and hope for me since I found it about a year ago. It is helpful to hear others' stories and experiences and know that others can relate to what I've been through.

I'm 44 years old and my life with keratoconus began when I was 17. I had worn glasses from the time I was in grade school, but I remember going to the eye doctor and having him tell me that I might be starting to develop a more complex eye condition. It was when I was 21 that I was actually diagnosed with keratoconus and told that I needed to wear rigid contact lenses to be able to correct my vision.

I wasn't given a lot if information about keratoconus then and I had never heard of anyone else I knew having the condition. As time progressed, I became more and more discouraged. As my vision continued to deteriorate and having to go through the long process of fitting lenses at the time, I would always ask the doctor what can be done. In the beginning I was told that not a lot was known about keratoconus, but that research was being done and that hopefully by the time I needed it, their would be cure.

Over the years I was able to find more and more information about keratoconus, and my progression seemed to be fairly normally (from what I was able to understand). Then in 2008, I started experiencing a more rapid progression. I needed new lenses two or three times a year. That was very discouraging for me because from what I had read, progression was supposed to slow, but then my doctor told me that wasn't necessarily the case.

Fitting my lenses became more and more difficult and I starting having corneal abrasions from the lenses not fitting correctly. Each time an abrasion occurred meant days out of the lenses as it healed, which meant I couldn't drive and had difficulty working. The doctor decided it was time for piggyback lens in my left eye. I was mortified. I had no idea how I was going to make this work. I couldn't get the hang of soft contact lenses and it took me months until I was comfortable putting them in and taking them out.

Around the same time, the doctor thought it was time for me to consult with a surgeon. I was told that I was not a candidate of Intacs because my corneas were too thin. I was also told that I should start preparing myself for the reality that corneal transplants would be necessary within 5 years. That was about three years ago.

Kim Hall
Today, I'm sitting here typing my story, knowing that there is still much more to come. For the last week, my left eye (the one with the piggyback lens) has been painful and very sensitive to light. My night vision is horrible and my reading vision has even deteriorated to the point where I need reading glasses to read the tags on my clothes when I do the laundry. I have good days and bad days.

Honestly, I'm scared to death of the idea of corneal transplant surgery. I'm a busy and active person and the unknown about how my recovery will transpire is frightening. Not to mention that I hate being dependent on others.

As the rest of my story unfolds, I will be sure to share. I hope that my experience can provide support to someone else out there.

10 comments:

  1. Ask your doctor what happens if the transplant doesn't work? Ask them what the life span of the transplant will be. Its not a permanent cure, there are people who have had 10 transplants.

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    1. Estoy por trasplantar mi cornea...y muy asustada de escuchar esto!

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  2. I have had the corneal transplants in both eyes, with one more successful than the other. My first transplant was at 16 and the other at 32. I live a normal life, have regular check ups and follow the advice of my ophthalmologist. Have faith and remain positive, I am greatful for the donors, as without them I would be blind. The success rate for corneal transplants is exceptionally high. Stop reading the garbage on the net and speak with your specialist

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  3. Transplant is not the end of the world (except maybe financially...). On the contrary, it can be the beginning of normal life. I got my firs transplant 32 years ago, and the other was done 20 years ago. Both operations went well and I've been able to live normally, I even got to keep my drivers licence. The only hickup is my glasses, I have quite a lot astigmatism (cyl -12) - but even that can be dealt with. And the doctor that is taking care of my eyes told me that he has seen a transplant that has lasted more than 50 years. We all have our troubles, and at least I rather have this than, say, cancer.

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  4. Have you tried scleral lenses? They're great.

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  5. Kim,
    Since the age of 15 I have had 4 corneal transplants due to severe kerataconus. I am 47 now and doing very well. I do wear glasses although not all the time. Night vision could be better. I dump 3 types of pressure drops in both eyes twice a day. I live a pretty much normal life. I work for a major oil and gas corporation staring at a computer for 12 hours a day. I have learned to deal with the condition, and I do not let it get the best of me.

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  6. Good luck with your treatments!Sending my love xx

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  8. I had a transplant, and was almost back to "normal" within days. Yes, I couldn't see much from my left eye, but was driving (carefully, during the day, and self limiting), and was back to sewing (I make quilts and sell them online). The surgery itself isn't that difficult, and there are lots of drops after, night mask for sleeping, and safety glasses during the day for a few weeks, and no heavy lifting. No real pain, either. Removing sutures takes a while, but isn't painful, and then you'll get a lens or glasses. I have a Scleral. Don't panic or worry yet. Just start getting prepared. I cooked meals and froze servings for after (microwave dinners). I got extra dog food in, and upstairs. I made sure all laundry was done, and got something that made getting loads from 2nd floor to basement easier, without much lifting. Think of your chores that will need to be done for 6 weeks after, and find a solution.

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  9. Hi, I am 57 and had keratoconus since age 17. I've had 1 cornea transplant in my left eye (age 18) and have been wearing rigid lenses since then. I have had some issues with fittings, this last fitting for new lenses taking about six weeks, but due to the patience and care of my team of eyecare professionals, I see well enough to drive, both day and night. Yes, it's different and I have to be a little more diligent regarding my vision, but imagine the alternative. It's all about attitude.

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