This post is designed to share my search for relief from severe dry eyes. I received a stem cell transplant to treat acute myeloid leukemia in May of 2016. Since then, I have been diagnosed with Ocular Graft vs. Host Disease (GvHD). At the time of my transplant, my brother’s stem cells were accompanied by some of his T-cells that could not be filtered out. Those T-cells mistook some of my organs for foreign invaders and attacked them.
Many of the GvHD symptoms I suffered from have gotten better with time. I no longer get a rash all over my face and arms when I take a warm shower. I can now eat slightly spicy foods without feeling that my throat and stomach are on fire. However, really spicy foods are still off limits for me and that is hard for a Cajun who used to liberally apply cayenne pepper to almost everything he cooked.
I continue to take tacrolimus to tamp down the T-cells and decrease the GvHD symptoms. However, the tacrolimus suppresses my immune system which makes me succeptable to viral and bacterial infections.
One GvHD symptom has not improved. The T-cells have apparently attacked and damaged my lacrimal glands that provide tears to keep my eyes moist. I now have severely dry eyes. The condition is made worse by dry air, air-conditioned rooms, and any breeze. What little moisture I have in my eyes dries up almost immediately if not replaced by artificial tears. When that happens it feels like someone has poured sand into my eyes. The really dry air in Colorado forced Mary Pat and me to sell our lakehouse in Colorado that was supposed to be our retirement home at some point in the distant future. Even Houston is difficult given the fact that air-conditioning is pervasive here.
At first I tried to use small plastic vials of preservative-free saline like those marketed by Systane and Refresh. I was using the saline so often that it became too expensive to use the small vials. I switched to PuriLens which is available from Amazon or the Dry Eye Shop. That made more economic sense but it seemed as though the more saline I dripped into my eyes, the more they hurt.
Then I ran across a product called Nature’s Tears. It is basically pH adjusted spring water in a small pressurized can that can be misted into your eyes. The website for Nature’s Tears describes three tear film layers on the surface of the eye: the Lipid Layer, the Aqueous Layer, and the Mucin Layer. The Lipid Layer is a layer of oils that help prevent the Aqueous Layer from drying out. According to Nature’s Tears, when we drop saline drops into our eyes, we wash away the oils in our Lipid Layer. That makes it easier for the Aqueous Layer to dry out. Nture’s Tears avoid that problem by providing a fine mist of water that penetrates but does not wash away the Lipid Layer.
I liked Nature’s Tears and I found that it worked better than saline eye drops. However, the product was hard to find, the cans were small (1 ounce), and I thought they were pretty expensive for the small amount of water in the container.
I decided to try to duplicate Nature’s Tears by using a mister I found at Walgreens and by filling it with distilled water. However, it quickly became obvious that the distilled water did not have the correct pH for my eyes. I compromised by putting Purlilens preservative-free saline into the mister. That seems to work better for me than saline drops. Just one word of warning. There is a risk of infection from using the same mister over and over. That risk is increased for folks like me who are on immunosuppressing drugs like tacrolimus. I take a great deal of care to clean and disinfect my misting bottle whenever it is empty. I’m willing to take the risk, but I can’t advocate that anyone else do so.
My opthamologist recommended that I wear swim goggles to try to prevent my eyes from drying out. The problem was that swim goggles quickly fog up which makes driving and reading difficult.
I ran across a pair of motorcycle riding goggles at Harley Davidson that have a gasket that prevents the wind from drying out a biker’s eyes. The glasses are sold under the trade name The Tank . They have gaskets to prevent air from blowing across the eyes and they have small vents that help to minimize fogging. However, I find that they still fog up as you can see in the photo below.
Mary Pat says they make me look like Ali G to which I reply “Respect”.
I understand that BostonSight offers something called the Prose system. I understand that the Prose lens is an over-sized contact lenses that sits on the white of the eye and contains saline solution which bathes the cornea in moisture. There are only a handful of facilities in the United States where you can get fitted for the Prose system. There are two facilities in Houston but both have recently lost their opthamologist who was trained to fit patients for the Prose system. I found a facility in Florida but their opthamologist recently left on pregnancy leave. I’m hoping to get into one of the Houston facilities in September or October when their new opthamologist finishes training at BostonSight.
In the meantime, I am continuing to try to find relief from the pain and sight problems caused by Ocular GvHD. Reading, driving, and computer work are made very difficult and painful by this condition. Of course, all of this is better than the alternative without my stem cell transplant. If any of you have GvHD and have suggestions on how to get relief from severe dry eye, please share your advice. In the meantime, onward and upward.