Day +1490: How dry I am, how dry I am…

“It’s plain to see just why I am…”


12/29/2014: My consultation with Dr. Michelle Hessen at the Wilmer Eye Institute at Johns Hopkins went very well today. The purpose of the visit was to decide if I’m a good candidate for PROSE (prosthetic replacement of the ocular surface ecosystem) lenses, developed by the Boston Foundation for Sight. Although scheduled for 90 minutes, we finished in a little over an hour.

After updating my medication list, Dr. Hessen administered a vision test and examined the surface of my eyes to assess any changes in the past two months. Apparently, nothing changed – good news because I’m completely weaned off steroid drops and ointment with no adverse effects and bad news because my eyes have not improved despite increased Restasis and hot compresses.

I asked her why she recommended scleral lenses instead of IPL (intense pulse light) or Lipiflow. I mistakenly thought that the latter two addressed the underlying cause of my dry eyes while the lenses merely treated the symptoms. She explained that the chemotherapy/GVHD damage to my lacrimal glands which affect tear quantity is irreversible. IPL and Lipiflow target the Meibomian glands which produce oil that keeps the tears from evaporating, i.e., tear quality. My tears are of both poor quality and insufficient quantity.

Scleral lenses are called “lenses” because they are placed in the eyes but are completely different from [regular] contact lenses. Contact lenses rest on the cornea and are visual aids like glasses. However, scleral lenses are prosthetic devices that vault over the cornea and rest on the less sensitive sclera, the white part of the eye. The scleral lens maintains a constant layer of sterile saline that allows the dry, damaged cornea to heal and protects it against further damage.

Dr. Hessen selected a lens from her sample kit, filled it with saline and asked me to face my lap, open both eyes wide, and use my index finger to pull down the bottom edge on my right eye. She inserted the lens with no difficulty on the first try and said I did great. I was shocked at how comfortable it felt with no irritation – just a slight swollen feeling like I’d been crying a little. After awhile, I couldn’t tell it was there. The cool liquid felt immediately refreshing. She examined my eye closely and determined there were no gaps or bubbles. She repeated the process for my left eye. This time, I could feel the lens in my eye – it wasn’t horrible but I could feel the edge of it along the bottom. When she retested my vision after about 10 minutes, I was surprised at how well I could read the eye chart without the usual straining and squinting. My right eye vision wasn’t as sharp as my left but it was close. She removed both lenses with a tiny suction cup and put the right lens in my left eye. It was a better fit comfort-wise but still not perfect because it was a little loose on one corner. My vision was great. There are many complex parameters to custom fit the lenses correctly. The goal with the samples was to get a near fit to asses my tolerance level.

Dr. Hessen declared that from her medical point of view, I’m an excellent candidate for PROSE lenses, and suggested that I try them. This will entail going to Wilmer twice a day (11:00 a.m. and 2:30 p.m.), five days in a row for training and adjustments. She recommended that I wait until a month to six weeks after my chin surgery to begin so I won’t have too much going on at once. When I saw her assistant, it turns out the schedule is so full, I wouldn’t have been able to get in sooner anyway. I’m booked for the last week of February. If all goes well, I’ll see her only once a year after that. She warned me that there’s a definite learning curve to inserting them without spilling or getting bubbles in the fluid. Also, even if the lenses are successful, I’ll still need to apply drops a few times a day for the outer edges that the lenses don’t cover. I’ll have to learn to recognize the changed symptoms for when they’re needed. The lenses can be worn while bathing or showering but not while sleeping.

My medical insurance will probably (hopefully) cover the full cost of the fitting and lenses ($5600 each). If I lose or break a lens, I’ll have to pay $750 for a replacement but they’ll give me documentation to try for reimbursement from insurance. If a lens gets scratched, I send it to Boston to be polished and returned. Typically, the lenses are good for 2-5 years before another fitting is required due to changes in the shape of the eye. At that point, the insurance would cover, same as the original fitting.

I was surprised at how good my eyes felt the rest of the afternoon after I’d worn the lenses for such a short while for the assessment. I went to the appointment filled with doubt and skepticism but departed with much hope.

Further Reading

P.S. If I lived closer to Dallas, I might have tried these lenses instead of PROSE:
http://laserfitlens.com. I like the idea of complete personalization. However, I was nervous about being so far away from the source if anything went wrong or needed adjusting.

9 Comments:

  1. PS Otis from Andy Griffith? I’m sure I’ve heard Bugs Bunny/Daffy Duck, etc, do that one, too 😉

  2. They sound wonderful Karen! I actually was imagining what it would feel like having that moist feeling throughout the day! My dry eye has been tolerable since I stopped the glaucoma drops. Now, however, I see double out of my right eye…. eye Docs are all on vacation. grr Anxious to find out what this is about. I’m so happy for you. How far is Hopkins from you? Hugs, Lori

    • Lori, I live 29 miles from Hopkins – about 45 minutes. I strongly recommend that you check the link below and try to get a consultation at one of the PROSE locations closer to you. There’s no obligation to get the lenses if you don’t think they’ll help or aren’t a suitable candidate. If you don’t have insurance coverage, I think Boston Foundation offers financial aid. How far are you from Dallas? The laser fit place is another possibility. Karen
      http://www.bostonsight.org

  3. The “prosthetic” sounds really neat. I’m glad to hear that you are such a good candidate for this and that you’ll be getting it soon. 🙂

  4. This is great news! You will be very busy getting everything sized and ready for you. Plus the training. But I am sure it will be wonderful when it is all over!i love the advancements that are being made in medicine all the time. And so thankful you are a candidate for this one. Let us know how it goes.

    Irving Berlin Lyrics. The Near Future

    Love,
    Cathy 🙂

  5. I read this a few days ago but was on my phone and it was too hard to post a message. I love how well written this was…the pictures…the descriptions…everything….it really made it easy to understand. I really hope this works for you!! I am glad you felt relief after only wearing it for only a few hours.

    Love you, Laura

  6. Karen
    Thank you for sharing your info on your blog. I originally found it through marrowforums. I had a bone marrow non related transplant on 1/28/12. Complications have been fatiguing. Began with cmv;then Acute GVHD, and currently cGVHD. Steroids have left me almost totally immobile and Osteoporosis has developed. So now we look to Photopheresis. I have no port and do not welcome one. I will have a challenge getting to a hospital on a regular basis.Would love to chat, Donna

  7. Donna,

    I replied privately. You may not need a port for photopheresis if your veins are good. Sorry for your complications! I hope you get some relief and feel better soon. Congratulations on your upcoming 3rd rebirthday.

    Karen

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