We lowered the dose on all the meds for my transplanted eye. The pred-forte is now 3x a day, the chloramphenicol and gentimicin are 2x a day, and the tobrex ointment is just once a night. Left eye meds stay the same.

I go back to the doctor in 3 weeks.

My biggest issue is that the bandage lens does not fit well. The new cornea is too high on one side and the lens won’t lay completely flat. This causes constant scratchiness.

Vision has improved some, but is still nonfuctional. I am able to keep my eye open a tiny bit because my brain is starting to adjust to primarily use the input from my left eye. I can’t read any text with the right eye, but when looking at the TV, while sitting on my bed, I can see bodies moving, but not facial features. I can see the black captioning box, but no text. On the computer (with 5x magnification), I can see the contrast between different paragraphs of text, but can’t distinguisn between words or letters.

I did discover that there are a few things that I can see with the transplanted eye that I cannot see with the other eye. For exmaple, I was able to see a stoplight in the daylight, but I can’t see the the cars moving. That might create a nice bit of functionality for me.

The doc said the new cornea looks great, miraculously great, he said. That’s the good news. Also in the good news department, no signs of infection. I was able to see 2 very blurry fingers at about 4 feet. I can see large shapes (like trees, picnic table umbrellas, and the like) from 20 or 25 feet away, but no detail. My next recheck is in 2 weeks.

The not so good news is that I am developing a cataract, due to the effects of the infection. We are also watching my eye pressures closely because the scarring in and around my iris and lens can cause very high pressures. We changed the bandage contact lens today, but part of my cornea has a very steep curve and we can’t get a soft contact to fit well.

Tonight my eye is irritated, but not significantly more painful.

My vision in that eye is highly variable. This afternoon, while grilling, I was able to see the dials on the grill, I could see the holes in the lattice on the deck, and I could see part of my patio table from about 15 feet away. However now, 4 hours later, I can’t see my hand when my arm is outstretched.

My pressure was up a bit, to 22 again so they are keeping a close eye on that. It was 21 the day after surgery, and 19, and 17 at the last 2 doc visits. If it goes higher, they will probably add some pressure reducing drops. I go back next Wednesday, because Tuesdays are a terrible day for me at work, and it’s so hard to get down to the doctor’s office. There is no public transportation down there, so I have to get a ride.

I did talk to the lens people today, and they aren’t sure when they will reschedule the training, but are hoping to do so in about 2 weeks. My fingers are crossed that it will be soon.

Pain was a little worse tonight, but between the eye exam with the resultant poking, proding, bright lights and all, I am not surpised. I had to take my hat and glasses off a lot today to try to read paperwork, and I had to do some work from my cowoekrs computer, so visually I am exhausted. Even though I mostly keep my transplanted eye closed, that kind of strain seems to cause issues in that eye too. So after 2 days of no pain meds, I had to take a little tonight. The difference between now and 12 days ago is that the pain meds completely take the pain away, while before, they only slightly dulled it.

I am off to San Francisco for 3 days. I will update again on Saturday after I get back.

I didn’t get fitted for my scleral lens today.The fitter had a death in her family, and the training had to be rescheduled. I hope to find out more on the new schedule when I see the doc tomorrow.

I am amazed at how much better I feel. I hope it stays that way.

That brings me to another problem. My right eye, the transplanted eye, is my dominant eye, and the dominance is very strong. So now, that the pain has improved, vision is improving some, I can keep it open, however, in doing so, I can’t get my brain to ignore that faulty input, and I am unable to focus on anything.

The other thing I have noticed is what look like some eye muscle issues. My eyes are not tracking together well. I can see that right eye rotate to the outside, or up. I’m not sure where that is from.

Visionwise, things might be a bit better today. When I set my screen enlarger to 22x, I can make out letters. However, at that kind of magnification, I only get 3-4 letters on my 17″ screen at a time.

I am going to be fitted for a scleral lens on Monday, so that is very good news. I am looking forward to having more comfort in my left eye (the untransplanted eye) and if I am luckly, less light sensitivity and better correction.

My vision is also improving a bit. I can see very rough shapes. For example, in the shower I can see the blue shampoo bottle against the white background. It still looks like a blue blob, but at least I can see a blue blob 3 feet from my face. I could see the outline of one one of my aide’s lower half (black pants against the light colored wall), but coudn’t tell where her top half was (light on light).

I am supposed to travel next week, and last night I was thinking there was no way I was going to be able to, but I feel so much better today that I think it is a possibility. I’ll see how I feel tomorrow however.

Oh, the other good thing is that I found out that the trainer will be here on Monday to train folks in my doctor’s office in how to fit scleral lenses. Scleral lenses are gas permeable lenses, that unlike other contacts, do not rest on your cornea. Instead they rest on the relatively insensitive white part of your eye (the sclera — hence the name). They are great for SJS eyes because you can fill the space between the cornea and the lens with saline which is a great refractor that fills in the uneven surface of the cornea, reducing light sensitivity, glare, and allowing better visual correction. In addition, they provide a better barrier between the scarred ocular surface the sensitive cornea, protecting the cornea from as much damage, and they keep the cornea lubricated which reduces the risk of developing infections and ulcers.

We are hoping I will be able to use the scleral lenses. I won’t know for sure until they try to fit them, and the training coordinator is reviewing my chart to see if I am a candidate to be fitted during the training on Monday, but my fingers are crossed that I will be. If so, in a couple of weeks, I should have the new lenses. Otherwise I will have to wait until I get back into town to schedule a fitting. The other hurdle I have is insurance coverage. Insurance doesn’t typically cover corrective lenses, however scleral lenses are more akin to DME and a prosthetic device (manufactured specifically for the shape of each individual eye), than a corrective lens. I hope I can get Medicaid to cover them. Medicaid has been covering my bandage contact lenses for the last 4.5 years, so I am hopeful. If not, they will be very expensive ($500 for the fitting and $300-450 for each lens).