Thursday, May 2, 2013

GVH of the Eyes

I'm just sharing a very odd—in my opinion—remedy for GVH of the eyes.

*GVH is Graft-versus-Host disease, which happens to bone marrow transplant recipients. It is explained at end of this post.

My ophthalmologist gave me a steroid drop to use on my eyes when I get a GVH attack, but the steroid drop is not the remedy. Instead, the instructions for applying the steroid drop are the remedy. Those instructions work even when I don't put the steroid drop in.

The instructions tell me to pull down my lower eyelid, put a drop in the pouch that forms, then close my eyes and put pressure in the inner corner of the eyes for about two minutes.

One day, I was getting out of the car at a gas station, and a gust of air blew across my eyes and instantly my immune system went on the attack. When that happens, the pain is too bad for me to open my eyes, which means driving away from the gas station would have been impossible and pumping gas would have been extremely difficult. Since it can take from 15 minutes to 2 hours for a GVH attack to subside, this was a problem.

I sat back down on the front seat with the front door open, and I put my fingers on the inner corners of my eyes. The pressure was pretty uncomfortable, and I couldn't keep my fingers in one spot because my eyes were already soaking wet from tears. I had a couple napkins in the glove compartment, so I grabbed one, and I used it to apply the pressure.

From the moment I started pushing on the inner corners of my eyes, I could feel the relief start. I think I ended up pressing on my eyes like that for 2 or 3 minutes, and the GVH attack was over.

My eyes were still sensitive, so I slapped on some wraparound sunglasses before I pumped the gas. After I was done, I used the napkin to apply pressure again, and it helped relieve the sensitivity a bit.

I have tried this method numerous times since, and it has been at least moderately effective every time, often completely effective. I have begun applying pressure to the inner corners of my eye for a minute or so a couple times a day, just for prophylactic (preventive) purposes.

Some Explanation of the difficulty of relieving GVH

GVH, or Graft-vs-Host, is an attack from the immune system when your immune system has been replaced with the rest of your blood as a result of a bone marrow transplant. Bone marrow transplants are generally done only on Leukemia, Lymphoma, and Multiple Myeloma patients—in other words, people with blood cancers.

A GVH attack on the eyes is not like having something in your eye. If you get a speck in your eye, once you remove it, the pain subsides immediately. GVH means your immune system is attacking the eye. It is not enough to remove whatever irritated your eyes and spurred the immune system attack. The pain will not go away until you get the immune system to stop attacking. Getting rid of the irritation helps make that happen, but, at least for me, it's hard to say how long it will take for the immune system to back off. Like I said, it can take up to two hours.

During those two hours, the pain is not too bad if I keep my eyes closed. The tears keep running, but otherwise it's pretty bearable. If I open my eyes, however, the pain rapidly increases so that I can't keep them open for longer than 3 or 4 seconds.

Before I found this remedy, I would usually just go take a nap if the attack doesn't stop in ten minutes.

A Possible Explanation for Why This Remedy Works

I just went to a Bone Marrow Transplant Information Conference in Costa Mesa, CA a couple weeks ago. I asked why pressing on the inside corner of the eyes might help shut down a GVH attack, and the ophthalmologists doing the GVH of the Eyes seminar didn't have an answer. They told me that I was surely blocking the canals that drain the tears to the back of the nose, but that really didn't explain the effectiveness I was experiencing.

One doctor suggested I find out what magic was in my index fingers and market it.

That's funny, but the fact is, it works for me. (If you suffer from GVH of the eyes, please try this and tell me if it works for you.)

Earlier in the presentation, however, the doctors had answered a question that might explain my remedy better than just blocking the tear drain canal.

Apparently, we need not only the tears our eyes produce, but also need an oil coating produced by glands in our eyelids. One man there had been told by his doctor to close his eyes and press on his eyelids to express the oil from those glands. The doctor explained that GVH can beat up on those oil glands enough that they are not as soft as they should be, and the oil can't get out of them.

The doctor at the conference confirmed this is a good idea, and he said that a warm compress can do the same thing by thinning the oil and relaxing the glands.

So I wondered if maybe I'm not just blocking the canal that drains the tears in my eyes, but that I'm also expressing oil onto the eyes when I press like that. Maybe my GVH problem is not just dry eyes from lack of tears, though I do produce only 30% (left eye) to 50% (right eye) of the tears I'm supposed to produce. Maybe, however, with more oil, which helps the tears coat the eye, my cornea is being taken care of well enough.

Loose Thoughts on the Issue

First, the whole topic seem paradoxical. Lack of tear production is both a symptom of GVH and a cause of those painful GVH attacks. Yet, when I have an eye attack, as I call them, my eyes produce tears profusely, like a teenage girl at a chick flick. (Okay, or like me at a love story, or any heart-warming story for that matter.)

Anyway, where are all those tears coming from is the problem is tear production?

Second, we have two ducts to drain our tears. One is in the lower eyelid, near the corner of the eye, but not at it. I can see exactly where mine are because my ophthalmologist put tiny plugs (latex?) in the duct in the lower eyelid. This was to give me a bigger "tear lake" since mine, as I mentioned, were only 30% and 50% of full.

Third, I corresponded on Facebook with a person that produces no tears at all as a result of GVH. I have to suspect my method wouldn't work for her. She did find a great line of sunglasses called 7 Eyes Air Dams, though, that has an inconspicuous rubber ring around the lens on the inside of the glasses that butt up against your face, around your eye, to prevent wind and dust from getting in. I was very interested in those. My only complaint is that there are so many choices, I was really thrown.

I have finally decided to get prescription Air Dams, but I have to go get a prescription locally first.

They're available at I'd give you a link, but I can't get to load right now even though everything else I'm trying is working fine. Is it possible for to be down?

Have a great day!

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