Your Eyes After Transplant

Transcript:

Welcome

Hello, and welcome back to Thrive! — a BMT InfoNet podcast about navigating life before, during, and after stem cell transplant and CAR T-cell therapy. I’m Eric.

In today’s episode, our deep dive focuses on ocular graft-versus-host disease — a condition that can affect vision after allogeneic, or donor, stem cell transplant. It often develops gradually, with early symptoms that can be easy to overlook. We’ll spend most of our time talking about how ocular GVHD develops, the warning signs patients and care partners should know, and what can help protect long-term eye health.

But before we get there, we’re going to take a quick look at a recent headline that speaks directly to how patients and providers navigate care together: Why Trust Matters in Medical Conversations.

Let’s get started.

A Few Updates

WHY TRUST MATTERS IN MEDICAL CONVERSATIONS

For this week’s news update, we’re sharing an article from Medscape, written from a doctor's perspective, that looks at a topic many of you have probably encountered firsthand: how doctors are trying to talk with patients about confusing or misleading health information — without damaging trust.

What stood out is that this article isn’t about “correcting” patients. It’s about protecting the relationship.

The clinicians featured talk openly about how often patients come into appointments with questions shaped by what they’ve read online, heard from friends, or seen on social media. And rather than seeing that as a problem, many providers are being encouraged to start from curiosity instead of correction — asking what patients are worried about, what they’ve read, and what matters most to them right now.

For people who’ve been through transplant, CAR T-cell therapy, or who are living with GVHD, this approach really matters. Care is rarely straightforward. Symptoms change. Side effects don’t always follow a clear pattern, and that lack of clarity can be overwhelming and take an emotional toll. It’s also common to hear different things from different providers — or to feel unsure about which information applies to your situation.

The article highlights something important: strong care isn’t built on perfect answers. It’s built on connection.

Doctors are being trained to slow down, listen carefully, acknowledge patient self-advocacy, and avoid language that makes people feel dismissed or talked down to. Asking questions, raising concerns, or bringing something you’ve read into an appointment isn’t a sign of mistrust — it’s often a sign of engagement.

One message we really appreciated is this: sometimes, simply maintaining trust and keeping the conversation open is a win. Not every concern will be resolved in a single visit. But staying connected makes it easier to come back with the next question — and the one after that.

For care partners listening, this applies to you too. You often notice changes first. Your observations matter. You are part of the care team.

What this article ultimately reminds us is that survivorship isn’t meant to be navigated alone. Healing doesn’t happen in isolation — it happens in relationship, built over time through honesty, listening, and partnership.

A Quick Note

Before we move on, just a quick note.

Where BMT InfoNet’s Facebook page is often a place for patients, survivors, family members, and care partners to connect and stay informed, BMT InfoNet’s LinkedIn page offers a more professional and practice-focused perspective. It’s a space designed for clinicians, trainees, and other healthcare professionals who want to stay connected to the patient experience, learn about programs and resources they can share, and see how peers across the field are engaging with these issues. If that sounds useful, we encourage you to follow BMT InfoNet on LinkedIn. You’ll also find similar professional-focused updates on X and Bluesky. Links to all three platforms are included in the show notes.

And as always, if this podcast — if Thrive! — connects with you on some level, one of the simplest ways to help it reach others who might need it is by following or subscribing on your favorite podcast platform or on YouTube, and sharing an episode with someone who could benefit. And if you ever want to reach out with a thought — what you’re enjoying, topics you’d like to hear more about, or ideas you might have — you can email us anytime at thrive@bmtinfonet.org.

Something That May Help

You know, one of the hardest parts of living with graft-versus-host disease isn’t just managing symptoms — it’s knowing where to turn for support when care becomes more complex, or when you need someone near home to help coordinate your care with your transplant center.

I’d like to share something that may help.

BMT InfoNet offers a Directory of GVHD Providers — a searchable resource designed to help transplant recipients and their care partners identify clinicians who have experience managing graft-versus-host disease or its symptoms. This directory is especially helpful for individuals who live far from their transplant center, and who need local providers to work alongside their transplant team.

What makes this directory particularly useful is that you can search by specific areas of the GVHD-related experience, including eye involvement, lung, skin, mouth, digestive system, muscles and genitals, among other categories. Many of the clinicians listed help manage GVHD-related symptoms and complications in coordination with a patient’s transplant team, providing ongoing, community-based care.

That means whether you’re dealing with ocular GVHD, another specific complication, or multiple GVHD-related concerns, this resource can help you identify providers who understand the challenges you’re facing — while still keeping your transplant team central to your care.

As always, BMT InfoNet encourages patients to reach out to their transplant team first for guidance whenever possible. If this directory sounds like something that could be helpful for you or someone you care about, you’ll find a direct link in the show notes — or you can visit bmtinfonet.org and look under “Find a Provider” to access the GVHD Provider Directory.

Deep Dive - Your Eyes After Transplant

There you are, lying in bed, awake before the alarm goes off again. Something that seems more common since treatment.

This morning, it was a robin giving its full-throated endorsement to the start of the day, yesterday maybe it was a passing car. But once again you find yourself lying there in the stillness of the morning, when the quiet gives anxiety a little room to breathe. So, you begin a mental scan of your body, just to see how it’s feeling today.

Everything seems mostly normal, whatever that means these days. The eyes are a bit crusty. They were a little yesterday too, and the day before that come to think of it. That’s not entirely normal for you. Not painful, not alarming. Just … noticeable. You register it, clear it away, and begin your day.

Later that afternoon, you notice your eyes watering. Randomly. You chalk it up to dry air, screen time, recovery fatigue — all the usual explanations.

Still, a small caution flag goes up. That quiet voice you’ve learned to listen to post-transplant. The one that tells you to pay attention. Hypervigilance, they called it. Being alert to changes. Knowing when something small might actually matter.

But eye crusting? Watery eyes?

HOST INTRODUCTION 

Welcome to this week’s Deep Dive segment. Today, we’re focusing on a complication that affects many people who’ve had a bone marrow or stem cell transplant: ocular graft-versus-host disease, often called ocular GVHD.

Many people associate ocular GVHD with dry eyes. But as you just heard, the earliest warning signs often look quite different — and recognizing those early changes can help protect long-term eye health.

Our guide for this conversation is Dr. Zhonghui Katie Luo, a physician-scientist specializing in ocular surface disease at Massachusetts Eye and Ear and Harvard Medical School. For more than a decade, Dr. Luo has worked closely with the Dana-Farber Cancer Institute to diagnose and treat patients with ocular GVHD.

In this Deep Dive, we’ll walk through how ocular GVHD develops, the early signs patients and care teams often miss, and the steps that can help protect vision when symptoms first appear.

SEGMENT 1: UNDERSTANDING WHAT GVHD IS

To understand how graft-versus-host disease can affect the eyes, it helps to start with what GVHD actually is — and why it happens.

Dr. Luo begins by explaining the role of transplant in treating certain blood cancers and disorders.

Dr. Luo
“When we have a person who’s got something wrong with their bone marrow, often times in the form of leukemia, lymphoma, or some kind of malignancy that has taken over their immune system — If all treatments fail, for example chemo, radiation, fortunately there is one way to still rescue it … that is by wiping out the recipient’s own immune system, including their bone marrow, and give them a fresh dose of stem cells from a healthy donor.”

The goal of this treatment is to eradicate the cancer and rebuild the immune system. And often, it does exactly that.

But there can be a tradeoff.

Those donor stem cells don’t just create new blood cells — they create an entirely new immune system. And sometimes, that new immune system recognizes parts of the patient’s body as foreign.

When that happens, donor immune cells can begin to attack the patient’s own tissues. That immune response is what we call graft-versus-host disease.

GVHD can affect one organ or many. It may involve the skin, liver, digestive tract, lungs, or eyes. Because of this risk, patients are placed on immunosuppressive medications after transplant to help keep the new immune system in check.

Over time, those medications are reduced. The immune system needs to recover and do its job — and it can’t remain suppressed forever. It’s often during this period of tapering that graft-versus-host disease begins to show itself, though the timing can vary from person to person.

SEGMENT 2: THE EARLY WARNING SIGNS MOST PATIENTS MISS

So what does ocular GVHD actually look like in its earliest stages — and why are those signs so often overlooked?

Dr. Luo explains that while dry eyes are the symptom most people associate with ocular GVHD, they usually appear later in the disease process.

Dr. Luo
“Oftentimes, we equate chronic ocular graft-versus-host disease with dry eyes. That’s not completely wrong, but I want to make everyone aware that while dry eyes are the most common symptom, dry eyes are actually a late sign.”

What many patients notice first isn’t dryness, but changes in how their eyes function in everyday life.

Dr. Luo
“A common sign for spotting a patient with ocular GVHD is that they’re typically squinting, and they often wear sunglasses indoors. Sometimes they put their hands over their brows. And while their eye exam numbers might be pretty good, their functional vision—such as driving, watching TV, or enjoying some reading on the iPad—is not good.”

These functional changes often show up quietly, and they’re easy to dismiss — especially when patients are already dealing with so much during recovery.

In her research, Dr. Luo began seeing patients very early after transplant, before classic dry eye symptoms appeared. What she found were small but consistent changes that often went unreported.

Patients described things like crusting on their lashes in the morning, increased discharge or tearing, watery eyes, light sensitivity, and the need to squint or wear sunglasses indoors.

When Dr. Luo examined these patients more closely, she noticed physical changes under the upper eyelids — areas of raw, eroded tissue that patients themselves often couldn’t feel or see. At this stage, many had no other complaints besides discharge.

Over time, those erosions could begin to scar. And once scarring sets in, the damage to tear- and oil-producing glands can become permanent.

Dr. Luo reviewed more than 200 patient cases over a 12-month period and found that a subset showed these early lesions before dryness ever developed. Without early treatment, those changes could progress — quietly — into long-term eye damage.

SEGMENT 3: WHAT TRIGGERS OCULAR GVHD TO START?

One of the most important insights from Dr. Luo’s work is understanding what tends to trigger ocular GVHD in its earliest stages.

As she followed patients closely after transplant, she noticed a consistent pattern. In the weeks leading up to the first eye symptoms, nearly all of these patients had experienced something that activated the immune system.

Dr. Luo found that these immune-activating events often occurred within about one month before symptoms began.

They included things like tapering or discontinuing immunosuppressive medications — such as tacrolimus or oral steroids — receiving post-transplant vaccines, or undergoing a donor lymphocyte infusion.

Each of these events has something in common: they stimulate the immune system.

Dr. Luo began to see that when the immune system was activated, eyes that had seemed stable could suddenly develop erosive changes under the eyelid.

She also observed  that when these lesions were identified and treated early, there was often less scarring. When they went unnoticed or untreated, the scarring could become much more severe and lead to lasting damage.

This is why timing matters so much.

SEGMENT 4: HOW OCULAR GVHD DAMAGES THE EYES

Once these early erosions develop, the process that follows is often predictable — and damaging if left unchecked.

As inflammation continues, scar tissue can begin to form. Over time, that scarring interferes with the eye’s ability to produce tears and oils — the very things that protect and nourish the surface of the eye.

Without adequate tears and oil, the eye becomes increasingly vulnerable. Healing is impaired, and the surface of the eye can begin to break down.

This is why early attention matters so much. When changes are recognized and treated before scarring takes hold, there is a better chance of preserving the glands that support long-term eye health. Once those structures are damaged, the effects can be difficult to reverse.

SEGMENT 5: WHAT YOU CAN DO: PREVENTION AND DAILY CARE

Dr. Luo emphasizes that when it comes to ocular GVHD, preventing damage is far easier than trying to repair it later. Much of that prevention comes down to everyday habits that help protect the surface of the eye.

One of the most important steps is avoiding touching or rubbing the eyes. Even gentle rubbing can significantly worsen inflammation and damage already fragile tissue.

Screen use is another area where small changes can matter. When we stare at screens, we blink far less often, which reduces the natural spread of moisture across the eyes. Taking regular breaks and being mindful of eye comfort can help reduce strain and dryness.

Dr. Luo also encourages patients to pay close attention to their environment. Using humidifiers, directing air vents away from the face, and wearing sunglasses or moisture goggles can help maintain moisture and protect the eyes from drying out.

Warm compresses can be especially helpful for supporting the oil glands in the eyelids. Used gently and consistently, they can improve comfort and help maintain the quality of the tear film.

Finally, Dr. Luo urges patients to report any eye discharge — especially mucus — right away. This kind of discharge is often not caused by a bacterial infection, and antibiotic drops may not help. Early communication with a care team allows providers to identify inflammation sooner and adjust treatment before more damage occurs.

SEGMENT 6: LUBRICATION, MEDICATIONS, AND PROCEDURES
When ocular GVHD leads to dryness and surface damage, treatment often focuses on two parallel goals: keeping the eye well lubricated and reducing inflammation.

Dr. Luo explains that for many patients, the foundation of care starts with preservative-free lubrication. Because preservatives can irritate an already fragile eye surface, she recommends using only drops clearly labeled “preservative-free.” Using smaller amounts more frequently can be more effective than using large amounts all at once.

For some patients, thicker lubricant ointments used at night can also help, though Dr. Luo notes that they don’t work for everyone. Finding the right balance often takes some trial and adjustment.

When over-the-counter options aren’t enough, prescription treatments may be added. Dr. Luo discusses medications designed to stimulate tear production, such as cyclosporine or lifitegrast, which can be helpful for patients who still have some functioning tear glands. Oral medications sometimes used for dry mouth may also support tear production in certain cases.

Another way to support lubrication is by helping the eye hold onto the moisture it already has. Dr. Luo describes procedures that partially or permanently close the tear drainage system, allowing tears and lubricants to stay on the eye longer. These approaches are often done in the office and can make a meaningful difference for some patients.

For more severe or persistent symptoms, Dr. Luo highlights additional options aimed at reducing inflammation and protecting the eye surface. These can include short-term use of steroid eye drops, serum tears made from a patient’s own blood, or specialized contact lenses known as therapeutic scleral lenses, which bathe the eye in fluid throughout the day.

Across all of these options, Dr. Luo emphasizes that care often needs to be individualized and coordinated — involving both eye specialists and the transplant team — to balance symptom relief with long-term eye health.

SEGMENT 7: WHEN SURGERY SHOULD AND SHOULD NOT BE USED
As ocular GVHD progresses, questions sometimes come up about surgical options — and about which procedures may or may not be appropriate.

Dr. Luo is careful in how she approaches this. Her primary goal is to avoid surgical intervention whenever possible, especially when inflammation is still active. Procedures like corneal patches or transplants may be used in urgent situations, but they are not curative, and their long-term success can be limited if the underlying inflammation isn’t controlled.

She also advises patients to avoid elective eye and eyelid surgeries, including LASIK. In eyes affected by ocular GVHD, these procedures can introduce additional trauma to an already fragile surface and may worsen symptoms rather than improve them.

Cataract surgery is an important exception. Dr. Luo notes that many transplant patients develop cataracts, and addressing them can significantly improve vision. When cataract surgery is needed, she emphasizes that it should be approached thoughtfully, with careful planning and post-operative care that differs from the general population.

Dr. Luo also explains that some vision-saving surgeries — such as glaucoma procedures or certain retinal surgeries — can be especially hard on eyes affected by ocular GVHD. Still, when surgery is necessary to prevent vision loss, it may need to be done.

In some situations, earlier glaucoma treatments — including laser procedures or surgeries that lower eye pressure — may actually be encouraged. By reducing reliance on pressure-lowering eye drops, which can be harsh on the eye surface, these approaches can sometimes help protect the eyes over time.

In more severe cases, Dr. Luo notes that procedures to partially or completely close the eyelids — either temporarily or permanently — may be used. These are therapeutic steps, designed to reduce exposure of the eye to the outside environment and help protect the ocular surface.

At the same time, she strongly advises against cosmetic surgeries involving the eyelids. In eyes affected by ocular GVHD, cosmetic procedures can significantly worsen symptoms and increase the risk of long-term damage.

Across all of these decisions, Dr. Luo stresses the importance of coordination. Eye care should be closely aligned with transplant care, and any surgical decision should take the broader immune and inflammatory context into account.

SEGMENT 8: HOPE, ADVOCACY, AND EMPOWERMENT

Despite all of these challenges, Dr. Luo expresses optimism. She has cared for hundreds of patients and learned from each of them.

Dr. Luo
“I have met so many patients going through this enormous journey of transplant and then graft-versus-host disease. I have learned so much from them. I have seen so much strength, have felt their resilience, and have felt that bond and support from family and friends. There is still so much overwhelm, and issues like oGVHD can be very difficult and discouraging.

Dr. Luo
“I've learned from you to appreciate life and to appreciate what we have. I want each of you to cherish that inner strength, and feel empowered to speak up, as you know your body best. Tell your doctors about any changes right away, because only then can we know you need something and help you.”

She urges patients to request ophthalmology consults early — both inpatient and outpatient — and to advocate for eye-specialist referrals when needed.

Dr. Luo
“….Everything comes down to you. If you know that ocular GVHD is not just dry eyes and that it can happen early on, you might be able to advocate for yourself.”

Awareness is power—and prevention is possible.

OUTRO
So, here’s what I hope you take with you.

Ocular graft-versus-host disease often begins quietly — long before the dryness many patients expect. Subtle changes like crusting on the lashes, increased tearing, light sensitivity, or difficulty with everyday vision can be early signs of inflammation that deserve attention.

Noticing those changes and bringing attention to them early — especially during periods when the immune system is being activated — can help preserve eye health over time. Early evaluation, regular monitoring, and working with an eye specialist who understands GVHD all play an important role.

Dr. Luo also emphasizes that patient awareness matters. Understanding that ocular GVHD is more than dry eyes — and that it can show up early — helps patients speak up sooner and advocate for the care they need.

To explore this topic further, you can watch Dr. Luo’s full presentation and find additional resources at BMTInfoNet.org. Links are in the show notes.

One Last Thought
Before we wrap up, I just want to leave you with this.

Recovery after transplant isn’t only about the big, visible milestones. It also involves paying attention to subtle changes — especially ones that are easy to dismiss early on, but can have a real impact on daily life if they go unnoticed.

Ocular graft-versus-host disease is one of those complications that doesn’t always announce itself loudly. Symptoms can start gradually, and it’s common for people to assume they’re just part of normal dryness, fatigue, or aging. But noticing those changes — and bringing them up early — can shape how effectively they’re addressed over time.

If there’s one takeaway from today, it’s that your experience matters. Paying attention to what feels different, asking questions, and advocating for follow-up when something doesn’t feel right are all important parts of protecting your long-term health.

Now, next week, we’ll be talking about transplant and CAR T-cell therapy in older adults — exploring how clinicians and patients weigh potential benefits and risks, and how those decisions are shaped by individual goals, health, and quality of life.

Until next time —

Keep asking questions.
Keep seeking answers.
And remember that you. Are not. Alone.