Nicolette G.

Condition: GvHD

Nicolette faced a terrible decision: have a stem cell transplant or die within two to eight months. She chose the stem cell transplant, although she says, “it wasn’t much of a choice.” She had the transplant in December of 2019 and 6 months later was in remission. However, Nicolette developed Graft versus Host Disease (GVHD), a common complication of stem cell transplants, with more than 70% of survivors developing the disease.

GvHD occurs when the new immune system created by the stem cell transplant attacks the organs and tissues of the patient. According to the Meredith Cowden foundation, “it can be fatal if not controlled and currently there is no cure.” Treatment for GvHD includes immunosuppressant drugs, which also have side effects.

Nicolette developed ocular GvHD, too, which produces significant inflammation of the ocular surface and conjunctiva, the mucous membrane that covers the front of the eye and lines the inside of the eyelids.

“My eyes and every mucous membrane of my body was affected,” she says. “My tear ducts scarred over, I stopped producing tears, I had severe dry eye, and my corneas developed abrasions.”

Nicolette describes her corneas as feeling “chewed up.” The graft blood she received doesn’t recognize where it is and so it starts eating away at the foreign mucous membranes, and in Nicolette’s case, her corneas, which can develop holes if not treated. Every time she blinked, she was in severe pain as the eyelids scraped across the damaged cornea. On average, humans blink between 15,000 and 19,000 times per day.

By June of 2020, Nicolette was putting a patch over her left eye, which was slightly worse than her right eye, to keep the lid closed and stop blinking. It was so inflamed she couldn’t see out of it.

“I was dealing with so much already and my eyes became another thing to manage. I even had to stop driving.”

Her retinal specialist referred her to an ocular GVHD expert, Dr. Mina Farahani at Ophthalmic Consultants of Boston. Nicolette started using serum tears, eye drops made from a patient’s own blood and which provide healing properties beyond commercial tear products. The serum drops had to be used constantly, and although they helped, they weren’t a long-term solution and can be prohibitively expensive for many patients, costing upwards of three hundred dollars per month. Dr. Farahani referred her to BostonSight to learn about PROSE Treatment.

A “Martini Glass” on your eye

Nicolette met with Dr. Bita Asghari, a PROSE Provider at BostonSight in Needham, MA, and felt comfortable right away. After countless hospital, ER, and office visits in 2020, the year of the global pandemic, Nicolette says, “the COVID protocols at BostonSight are better than any I’ve ever seen, anywhere. I was so impressed. And Dr. Asghari was amazing. She said, ‘I want to get this 100% right.’ She is a rare combination of kindness and expertise. I’m really grateful to her for being so on top of the experience and making sure I had a good outcome,” says Nicolette.

And while the patient experience was excellent, Nicolette doesn’t mince words when it comes to the PROSE devices.

“The PROSE devices are big. I say I have martini glasses on my eyes,” she says over laughter. I admit I was kind of down on the devices at first. I thought, ‘this is just another thing I have to do.’ But I knew I had to get past it.”

PROSE devices are similar to contact lenses however they are larger, and made of rigid, gas permeable plastic that is customized to each patient’s eye. PROSE devices vault the cornea so as not to touch it, and instead rest on the sclera, the white part of the eye. The resulting reservoir is filled with preservative-free saline, which hydrates the cornea. PROSE devices are just one part of the PROSE Treatment process. PROSE Providers work in conjunction with a patient’s medical team, including primary care, ophthalmology, and any other specialties, to create a comprehensive plan that will improve vision and comfort immediately, while healing the ocular surface and promoting long-term ocular health. PROSE Treatment can often avoid the need for a corneal transplant or other corneal surgery.

Nicolette has had her PROSE devices for three months and is now an expert at applying and removing them, but it took some time.

“I wore contact lenses for 25 years. I thought putting in PROSE devices would be a piece of cake. Stephanie, [a BostonSight ophthalmic technician] was my coach. She was amazing. I had several visits at BostonSight to learn how to apply and remove the lenses correctly, and she recommended using a special applicator with a light at the bottom. It worked for me.”

Nicolette starts her day with medicated tears in her eyes. She waits 30 minutes while deciding how long she plans to wear her PROSE devices that day, anywhere between 12 to 15 hours. If she has a long day, she holds off on applying the lenses too early, but that waiting period is excruciating.

“I’m irritating my corneas every time I blink. When I put my PROSE devices in, it’s instant relief,” says Nicolette. “They are incredible.”

In the evening, she uses her serum tears after removing her PROSE devices, as PROSE devices are not recommended for overnight wear.

“Since my eyes have been bathed and pampered all day, taking my PROSE devices out at night is not terrible.”

Today, Nicolette uses eye drops (Refresh Plus as recommended when the lenses are in) about 3 to 6 times per day, as compared to before her PROSE lenses when she used eye drops every 10 to 30 minutes.

“With all the challenges I’ve had to deal with, PROSE devices are the most worthwhile challenge to overcome. They are probably one of the best things in my life.”