Keratoconus recommendations from a long term KCer

Hi, I’m Sarah and I am 35 years old and live in New Zealand.  I have had keratoconus for more than 20 years.  I wear piggybacked Rose K lenses, and I had a corneal graft on my left eye 4 years ago.  I thought I would write all my recommendations after all my years experience with this disease.

Life with keratoconus can be very frustrating and disconcerting, so it is important to find ways to cope...

Artificial tears

If you wear contact lenses, these will soon become your best friend.  I do recommend tears without preservatives, as the preservatives did eventually start to irritate my eye.  Use them lots throughout the day.  You may get strange looks and people questioning you about why you are using them so often, but your eye comfort is the most important thing to get you through your day with contact lenses in.

Sunglasses

Another very good friend to us KCers.  You may need to wear them on cloudy days, but again comfort is the most important thing, don’t worry about what others think.  They also allow you to drive without pain from glare.

Piggy back lenses

Another saviour for me.  They have allowed me to wear RGP lenses comfortably and they stop pain from protein build up on the lenses.  Unfortunately unless you can wear daily lenses, it does mean cleaning 4 lenses each night which is a pain.  If you have trouble tolerating RGP lenses, consider trying piggybacks.

Your optometrist

You need to find someone you trust, and who has good knowledge of keratoconus and fitting contact lenses for keratoconus.  You will be seeing this person at least every 6 months, so this you need to be able to develop a good relationship with this person and if you are having trouble you need to be able to trust that this person will listen to your problems and do their best to help you.  I have been so impressed with my optometrist.  My journey to corneal transplant started when the only soft lens I could wear on my left eye was discontinued.  My optometrist tirelessly continued to try and find a lens that would fit and sourced lenses from different manufacturers worldwide to try and get one that I could wear.  I was able to go through the graft knowing everything possible was tried to help me.

Eye specialist

Again, this is a person who you need to be able to trust fully.  If you don’t feel comfortable with what the specialist is saying, get a second opinion.  You can read about my journey, with trying 3 different doctors before I found one I was happy and comfortable with, and who was willing to help me on this site.

Corneal graft

If you have a corneal graft, patience is the most important thing.  I have heard of people getting very good vision immediately post graft, however this is not common and most certainly did not happen for me.  I did not see the full benefit until 1 year post op when the sutures were removed.  I can tell you though, the wait was worth it!

Rest times

If you are wearing contact lenses, do give your eyes a rest from contacts.  I know this a difficult, as often glasses provide very little help, but I know I feel so much better when I am able to give my eyes contact lenses free time.  During this time you need to find things you enjoy which either don’t require vision, you are able to do with the vision you have, or can do with aids to help you, i.e. magnifying glass sheets.  I have found reading with my e-reader fantastic.  I am able to increase the font size so that I am not straining my eyes.  I really struggle with books with small fonts and the e-reader means I can read these books easier.  Another option which I haven’t tried is talking/ audio books.

Humour

Find the funny things in life.  I love to laugh, and when I feel sad watching a funny tv programme or film can really pick me up.  Life with keratoconus can be very frustrating and disconcerting, so it is important to find ways to cope – humour is mine.

The above story was shared by Sarah Monehan.

10 comments:

  1. Thanks for the tips. We really need them.

    ReplyDelete
  2. This piece is like a boosting article for me.
    Thanks for sharing..

    ReplyDelete
  3. I am 54 years old and I am suddenly going downhill with my vision. I wear a hard contact and trifocals. And I continue to struggle. I can't focus for at least an hour after I wake up. And I get severe migraines. Everything is getting worse suddenly. I'm afraid I'm going blind. Any ideas?

    ReplyDelete
  4. Thankyou for sharing your story. I have been wearing hybirds for 6 months and love them. My problem is if I give my eyes a rest I am blind and csn not see at all. I thought when I started wearing contacts things at night would get better. I can not drive at night at all.

    ReplyDelete
  5. Thankyou for sharing your story. I have been wearing hybirds for 6 months and love them. My problem is if I give my eyes a rest I am blind and csn not see at all. I thought when I started wearing contacts things at night would get better. I can not drive at night at all.

    ReplyDelete
  6. These tips are amazing and right on point. Thank you.

    ReplyDelete
  7. These tips are amazing and right on point. Thank you.

    ReplyDelete
  8. Thank you Sarah! My story is identical to yours except I am 55 and had my graft 17 years ago. If I was a new KC patient I would be very scared and discouraged by most of the posts I read. Understandably, most people who post are needing help with problems, but there are plenty of us who have severe KC and manage it just fine. Managing it is the key. I have thought about writing something exactly like this to give real and helpful suggestions to people and if I did, it would look exactly like yours!

    ReplyDelete
  9. I am 56 and was diagnosed 30 years ago. My story and suggestions are identical to yours. I also wear piggybacks (with sclerals) and it works for me. My softs are disposable weekly's so I don't have to clean them. Have had one graft but it was almost 20 years ago and I understand the techniques have changed. Anyway, thanks!

    ReplyDelete