If you had a stem cell transplant and are suffering from occular graft versus host disease (GvHD), I want to share my experience in the hopes I can make your life a little more comfortable.
First, don’t try to treat yourself. I wasted a lot of time trying to treat my severe dry eyes with over-the-counter artificial tears and warm compresses. By the time I sought professional help, I had caused damage to my corneas.
I recently went to the Bascom-Palmer Eye Center in Naples, Florida where Dr. C, who specializes in dry eyes, confirmed the earlier diagnosis of occular GvHD that I received from MD Anderson.
My eyes were severely inflamed and red. Dr. C inserted Kontur lenses which are soft contacts that act like a “bandage” to protect corneas. Kontur lenses are worn night and day for weeks, and even months in some cases, to promote healing of corneal erosion. Because infection is always a risk with the extended use of soft lenses, Dr. C prescribed antibiotic drops. She also prescribed steroid drops to clear up the inflammation. A recent study showed that “bandage” lenses can improve the healing of corneas in at least 50% of ocular GvHD patients. I am happy to report that the combination of Kontur lenses, antibiotics, and steroids helped to reverse some of the corneal damage that occurred over the past year.
Dr. C also recommended Autologous Serum Eye Drops (ASED). Serum drops are made from your own blood. Your blood is drawn and allowed to coagulate. Then it is spun in a centrifuge and the serum is isolated and diluted with a saline solution. Mary Pat calls them “Vampire Drops”. I received an eight week supply of bottles of serum tears which are stored in my freezer. i take out one bottle per week and thaw it in the refrigerator. I use four drops per day. Serum drops contain growth facotrs, Vitamin A, and albumin which is not found in artificial tears. In theory, serum drops help the eyes heal from the damage caused by dry eye.
I have been going to the Baylor College of Medicine for the past several weeks to get fitted for Prose Lenses manufactured by BostonSight. Prose lenses are extra-large hard contact lenses that sit on the sclera which is the white part of the eye. Scleral lenses look like martini glasses without the stem. A sterile saline solution is placed in the Prose lens before it is placed over the cornea. The cornea is bathed in saline solution all day long while you wear the lens. The process of getting a proper fit is a long and tedious one. I spent the better part of three weeks going to Baylor twice a day to get fitted and to take measurements. The measurements are sent to Boston where new contacts are ground. The lenses are overnighted to Baylor where they are fitted the next morning. The process is repeated on a daily basis. I was warned that it could take up to 6 months to get a satisfactory fit. I am due to go back to Baylor in several weeks to continue the fitting process.
The hardest part of wearing Prose lenses is inserting them in the morning. I have had a great deal of trouble getting them inserted. The key is to pull your eyelids far enough apart to get the large lens in the eye without interference. That’s easier said than done. I sometimes spend up to 30 minutes in the morning in repeated attempts to insert the lenses. Mary Pat can always tell when I’m putting in the lenses because of the frustrated shouting and cursing she hears coming from the bathroom. There is an instruction video on the internet that makes it look easy. Believe me, it’s not. I am hopeful that the Prose lenses will help to reduce the pain and will improve my vision which has been impaired by the severe dry eye condition. Hope springs eternal. Onward and upward!