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Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Eyes

Extensive chemotherapy and radiation to the head, as well as GVHD, can damage the glands in your eyes that produce tears. As a result, your eyes may not produce enough tears or the right mixture of oils and moisture to keep them healthy and comfortable. Sometimes the damage to the eye glands is permanent, and dryness may persist long after treatment and after the GVHD is resolved.

Some of the potential late effects of a transplant on your eyes can include dry, burning, or gritty eyes, itching, general eye pain, difficulty opening your eyes in the morning, sensitivity to light and wind, halos around lights, excessive tearing, and reduced visual clarity and/or blurring.^[31]

I really miss my tears. I miss the satisfaction of feeling tears rolling down my cheeks during a good cry or a touching part of a movie. My eyes feel very, very dry – like I have sand in them when I wear my contacts, which I can’t really do anymore. Wind, or anything blowing on them, is uncomfortable.

My eyesight went from 1.25 to 2.75 after the transplant. I have also become extremely sensitive to light. I now wear sunglasses even to watch TV. I always wear wrap-around sunglasses when I go outdoors, even for a few minutes. Light is piercingly painful.

Other than needing reading glasses (I’m 45), my eyes are in good shape. They were dry for a couple of years post transplant but are fine now.

Cataracts

Cataracts can develop after transplant as a result of exposure to radiation or as a side effect of taking certain steroids. Cataracts occur when the normally clear lens of the eye becomes cloudy or opaque. You can live with cataracts with very little visual impairment, or you may experience blurring and loss of visual clarity. Cataracts generally develop slowly. If you have cataracts, you can benefit from glasses or better lighting. If your vision becomes impaired, you can also undergo a simple and relatively painless surgical procedure where the cataracts are removed. Most ophthalmologists will perform cataract operations even in people with chronic GVHD or extremely dry eyes.

When I had the cataracts, it was very difficult to see things where there was a direct light source shining on my face. Having the cataract surgery really helped.

I had surgery in each eye but still have some blur and light refraction problems (poor night vision).

I recently discovered that the Light House for the Blind has yellow tinted glasses designed especially for low light situations. The glasses have really helped cut down the glare from night lights.

It’s Never too Early – and Never too Late – to Protect Your Eyes

We are all exposed to ultraviolet (UV) light, a form of radiation, every day when we go outside. The effect of UV light on the eyes is cumulative, so if you have had radiation to the head area, it is good to be extra vigilant and protect yourself by wearing eyeglasses with lenses that block UV rays. An eye care professional can help you choose what lens is best for you.

Getting appropriate treatment for your eyes is important because permanent eye damage may result from dry eyes that are left untreated. If you are experiencing eye discomfort, make sure to see an eye specialist, such as an ophthalmologist, who can determine the extent and cause of the dryness and recommend treatments. In some cases, dryness may be caused by low tear production. In other cases, it can be caused by changes in the composition of the tears, making them evaporate faster than normal. Excessive tearing may also be a symptom of irritation resulting from excessive dryness of the eyes.

If you are experiencing only mild dryness, your doctor may recommend something as simple as the use of over-the-counter artificial tears several times a day. Many transplant survivors who use artificial tears regularly recommend ones that are preservative free because the preservative can irritate your eyes. Survivors also report that some brands seem to work better than others. Lubricating tear ointments that tend to be thicker and oilier than artificial tears can also provide relief. Since these ointments can temporarily blur vision, it is better to apply them just before bedtime.^[32] There are also topical steroids or cyclosporine in the form of eye drops that may be helpful.

I use homeopathic eye drops with no preservatives (Similasan) several times a day. However, when my eyes get very dry, I need to supplement with a night ointment, like Refresh PM, which is thick and goopy, but which provides the added protection I need for the long dry night.

I’ve tried many different drops. The ones that work best for me are Tears Naturale II. And, I always use an ointment at night.

If artificial tears and ointments do not provide sufficient relief, tear ducts can be plugged with tiny silicone plugs. This reduces how fast the tears drain from your eyes and serves to conserve your natural tears and any artificial drops that you have added. In some cases, a temporary plug made from collagen that dissolves can be tried first to make sure that the permanent ones will not cause excessive tearing.

Other recommendations include applying very warm compresses over the eyes several times a day, avoiding very dry environments if possible, and adding moisture to the environment by using a humidifier in your house or office. There are also specially designed glasses that can create a moisture chamber around your eye to minimize drying. Some survivors have created the same effect by using swimming goggles to retain moisture around their eyes.^[32] There is also some evidence that a high dietary intake of omega-3 fatty acids (found in fish oil and flaxseed oil) may improve dry eyes.^[32] For individuals with very dry eyes, other possibilities include using autologous serum eye drops, which are produced from your own blood. The serum drops, which are biochemically most similar to your own natural tears, have many of the same healing properties as natural tears and can provide extended relief.^[33] People with severely dry eyes may also benefit from the Boston Scleral Lens, a customized contact lens that creates a fluid-filled layer over the eyes, thus preventing them from drying out.^[34] The key is to see an eye specialist who can review your situation and make the best recommendation for you.

Nothing has worked for my severely dry eyes except for my own blood serum. I’ve tried everything the doctors recommended for the last five years, but my own serum eye drops have been the best medicine.

I get relief from using Boston Scleral Lenses. I can’t imagine a day in my life without them. The only time I have any discomfort is when I remove them at night.

My ophthalmologist used laser and sutures to close my tear ducts to help me retain the tears I produce. And I use drops in my eyes every day.

Staying well-hydrated helps. I also always wear sunglasses outside because the sun makes my eyes feel worse. I also try to avoid air conditioning.

Dry Eye Solutions Summary

• Eye drops
• Nighttime eye ointments
• Sunglasses with lenses that block UV rays
• Humidifier (at home and at work)
• Glasses or goggles that create a moisture chamber around the eyes
• Serum eye drops made from your own blood
• Boston Scleral Lens (customized fluid layer over the eye)
• Silicone plugs to block tear ducts
• Flaxseed oil
• Topical steroids
• Cyclosporine
• Proper hydration

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