Day +1551: I can see clearly now the rain is gone…

“I can see all obstacles in my way
Gone are the dark clouds that had me blind.
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.”



2/28/2015: I was fitted and trained with my new PROSE lenses this past week at Wilmer Eye Institute, Johns Hopkins. PROSE is an acronym for “prosthetic replacement of the ocular surface ecosystem.” I wrote notes daily as I progressed with the intention of rewriting and elaborating for my blog post. However, I’m feeling lazy so simply posting my unedited notes. Please let me know if you have questions, and I’ll write more.

Day 1 – 2/23/15
Dr. Hessen first administered a quick eye test to ascertain my baseline. She then inserted the lenses with no difficulty on first try. The right was itchy and the left a little uncomfortable. However, my left eye distance vision was perfect. My right eye vision was still blurry – it might not be correctable but she said she will try. She looked in my eyes with the microscope and determined that both lenses had loose spots, the left more than the right and the reason for the slight discomfort. I spent the next 3-1/2 hours wandering around Hopkins to give them time to “settle in” before I got remeasured. I sat in my car and verified I could see the dashboard ok. I tried on 1.50x and 2.00x strength readers at the optical shop and determined I could read with them. When I returned to Dr. Hessen, she re-examined them with the microscope and ordered a better fitting set to try tomorrow. I then went for a training session with Michelle, her assistant.

First, I had to remove each lens using a small plunger:
1. Wash hands.
2. Hold small plunger upright in hand on opposite side from eye
2. Put drop of saline solution on plunger.
3. Hold eyes wide open with lashes using hand on same side as eye.
4. Look straight ahead into mirror and place plunger at bottom center of iris (colored part of eye, 6 o’clock) until it “grabs.”
5. Tilt down and pull.
6. Hold lens gently by edge and rotate plunger to outer edge until it comes off.
7. Drop lens into case (white is left, blue is right).

Next, it was time to learn to reinsert using larger plunger.
1. Right lens has one black dot, left has two.
2. Hold plunger sideways, squeeze and place lens on it.
3. Hold plunger and lens upright in opposite hand from eye, and orient lens so dot is top center (12 o’clock).
4. Overfill lens with saline solution (note, let bottle pour a drop at a time; don’t squeeze a stream, as that will cause a bubble).
5. Hold eye wide open with hand on same side as eye, and lower head to face mirror flat on table.
6. Keeping lens level (don’t spill), stare directly down into center of plunger and place lens on eye until it “grabs” – will feel cool fluid first but that’s not far enough – keep pushing.
7. Let go of lids.
8. Squeeze plunger to release and remove.
9. Look in eye to check for bubble (or note bad vision indicating bubble) – if there’s a bubble, remove and return to step 1.

When I failed on the first try, Michelle said no one gets them in on the first DAY, but I think she was just saying that so I wouldn’t get discouraged. I got the left one in on my second try. The right one only took a couple of tries also but I had a bubble so had to start over. I think I did great for a first day! More practice tomorrow, plus I have to learn the cleaning and sterilization routine.

Dr. Hessen will try me with distance correction only again tomorrow and then with one distance and one near (monovision) on Wednesday to see which I prefer.

Day 2 – 2/24/15
Today did not go well. I made the mistake of putting Restasis in my left eye this morning so it was very irritated. Several traffic lights were out on the main drag around Hopkins and my usual parking garage was full. The guy in front of me at the deli got the last cherry Danish. FedEx was more than 2 hours late with my new lenses. I had a terrible sinus headache – my cheeks, eye sockets, forehead all sore and throbbing. The lenses finally arrived at 1:30. I got the right one in on my 3rd try. When I tried to do the left, I realized my eyeball was extremely sore. After a few failed attempts, we decided to let Dr. Hessen insert it for me which she did easily on the first attempt. The fit was better but still a little off. My left eye vision wasn’t as good as yesterday, due to the irritation, but the right eye vision was a little better. Tomorrow, I’m going to try distance correction in my left eye (same as before) and near vision correction in my right. If I can adjust to the decrease in depth perception, this will (in theory) enable me to do everything without glasses. If I’m not comfortable with it, I’ll stick with distance correction and wear readers and computer glasses as needed. We decided to give my eyes a rest, so no further training today. I came home, took Sudafed and Zithromax and spent the rest of the day and most of the evening on the sofa. Early to bed with Mucinex and Aleve. Tomorrow’s bound to be better.

Day 3 – 2/25/15
No Restasis last night or this morning. My sinuses felt much better. The traffic lights were all working again, and I got the last cherry Danish. My lenses arrived less than 30 minutes late and they were a perfect fit this time. I got them both in on my first try but had bubbles so had to remove and reinsert – at least it was more practice. My left eye was corrected for distance vision and my right for intermediate which had the potential to badly affect my depth perception. However, I think because my right eye vision has been worse than my left for so long, I barely noticed. Reading wasn’t as clear as with no glasses or lenses but doable. I tried on a pair of 1.25x readers and everything looked very good, even fine print. I could see the computer screen very well without glasses. My left eye still felt a little irritated but OTC lubricating drops helped. When Dr. Hessen checked them in the afternoon, she said they looked like a perfect fit, and she was pleased that I did so well with the “monovision.” Because I’m doing so well, she altered the routine for tomorrow. Instead of coming in for the morning appointment, she instructed me to get up, insert them by 8 a.m., and come to the afternoon appointment with them still in. I had the option to wear them home today but I was nervous about driving without sunglasses (mine are prescription) so opted to let her remove them and put them in a case for me. Michelle instructed me how to clean and sanitize them overnight (about a 10 minute procedure, not nearly as bad as I expected). She keeps telling me most people have way more trouble learning to use the lenses. I’m basically a day ahead of schedule even with the loss of training time yesterday. I nervously cleaned the lenses at home tonight. They seem so fragile but it was easy. Fingers crossed that tomorrow morning goes well.

Day 4 – 2/26/15
8-8:15 a.m. I put the lenses in by myself this morning. It took me 3 tries on the left but I got them first try on the right. I don’t have to go to Wilmer until this afternoon. Good thing since it’s snowing! Michael drove me to my afternoon appointment. Dr. Hessen said both lenses looked beautiful and that there was no need for me to return tomorrow. She asked me to see her again in three months to assure no final tweaking is needed. I can stop using Restasis (Hurray!). I should continue using OTC lubricating drops a couple of times a day so edges of eyes don’t dry out. Instead of using Genteal ointment at night, use Genteal gel. Continue hot compresses morning and night. If I wear makeup, put it on after inserting lenses. My eyes look bloodshot all the time. They’ve been like this for years post transplant due to the damage from chemo, GVHD and general dry eye. I was disappointed when Dr. Hessen said that the lenses probably won’t change that appearance, despite my eyes feeling much better and healing medically. I’ll know within a couple of weeks if there will be any cosmetic improvement. At least they won’t continue getting more bloodshot.

I saw Michelle for a few last-minute cleaning instructions. Drop plungers in 50% peroxide + hot water for 20 minutes every two days and air dry to sanitize. Daily, clean tips with alcohol wipes and air dry. Hard case should be stored dry and lenses should be stored dry in them if not wearing for a day. She gave me some information for ordering supplies.

8:20-8:35 p.m. I removed the lenses on first try, cleaned and sanitized. Eyes feel good after getting the lenses out. Fantastic that I wore them 12 hours. I can keep them in all day/evening but must remove before sleeping daily. I was worried that having to insert and remove them daily would be very difficult and thus a deal breaker for me but it turns out to be MUCH easier than expected. The benefits of being able to see well again and having my eyes less irritated far outweigh the inconvenience. Why did I wait so long to get these?!

Day 5 – 2/27/15
It was great to sleep as long as I wanted this morning. I waited a couple of hours until I was thoroughly awake to put in my lenses. I got them both in first try but the left had a smudge so I removed and rinsed it with saline, then reinserted, again on the first attempt. My vision is excellent for distance, very good on the computer without glasses and excellent close-up with 1.25x readers. I can read without glasses but it’s more comfortable with.

I was tired after a late dinner so removed and cleaned them around 9:30 p.m. with no problems. Cleaning routine was about 10 minutes.

P.S. Bragging rights – Michelle told me, “You are truly the best student I’ve had so far!” 🙂 Michelle, that must be because you’re the best teacher.

6 Comments:

  1. Johnny Nash “I Can See Clearly Now”

    https://www.youtube.com/watch?v=FscIgtDJFXg

  2. Great post! Nice detail 🙂

  3. I’m so happy for you Karen! Hopefully they will get better each day! Since I had cataracts removed and glaucoma surgery my eyesight is great. :). Dry eye is better and will hopefully be even better when I can stop the prednisone drops! Such a relief! I have red eyes too. I figure everyone thinks I am stoned lol. Keep me updated! We can see. Whooooaaa

  4. Glad to hear of your success! Hope we hear more good stories like this. Love you! 🙂

  5. michele makinney

    how long did you wait to seek out PROSE? What did you do about your eyes( to treat the dry eye) before PROSE? I have been out of (my second)transplant for seven years and have struggled. The first drops I tried was Rastasis and it caused extreme discomfort and burning, so could not continue with that prescription. I use refresh plus lubricant plus preservative free vials throughout the day (about 3-5 vials a day). I recently tried mono-vision soft lenses, but am starting to feel they are becoming less effective and more uncomfortable. Also there are times throughout the day they just fall or pop out of my eye due to the dryness or irritation from change in environment or weather conditions.

    • Michele, I waited too long! I heard of PROSE about a year before I finally investigated. I had my transplant at the end of 2010 and started having dry eye issues less than a year later. I tried OTC drops (Refresh made them worse, Genteal helped a little), prescription drops, gels, and ointments (Restasis made them more irritated, steroid drops increased eye pressure), hot compresses. My vision was terrible and it had a big impact on my quality of life. PROSE lenses restore my quality of life. I wish I didn’t have to remove them for sleeping – my eyes still dry out at night – but daytime is great! If you can’t get PROSE where you are, ask about any scleral lenses.

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