Future vision

After the girls and I visited Brad two days in a row last week, we then went to San Diego for a little spring break. We had sunshine, pool and beach time, a meetup with good friends, and a lot of time to just read and rest. The girls have arrived at the age where it’s actually relaxing and pleasant to travel with them, and a change of scene was something we all badly needed. Meanwhile, Joe and Susan held down the fort here, visiting Brad daily. It was bittersweet to be on a family vacation without him, the more so as our seventeenth anniversary was on Monday.

Here in Sacramento, Brad continued about the same, eating a little and feeling a little better (albeit with ups and downs), but the big news has been about his eyes. Unfortunately, the promising improvement in his vision after the removal of the Prokera rings was extremely brief—possibly even illusory. By the end of Easter weekend he effectively could see nothing except a blur of light; his corneas now are entirely opaque, all blue. He has been increasingly down about the stagnant state of his vision, which has now been profoundly impaired for nearly two months, ever since it first seemed like he had a simple case of pinkeye way back on February 1. The total lack of improvement (indeed, the worsening) of his ability to see finally got to be too much. Meanwhile, we got word yesterday that cultures from his eyes had turned up positive for a rare bacterial infection, strep viridans, so he’s now had antibiotic eye drops added to his already considerable array of drops, ointments, and artificial tears.

His transplant team, too, has been concerned and finally agitated enough that Brad was sent out of the hospital over to the ophthalmology clinic, where he could see the top corneal specialist, the very eminent Dr. S. Getting him over there was quite a production, involving a transport team and an accompanying “action nurse,” and not surprisingly they were late for the 9:30 appointment. I was meeting them there, and as I waited I got terribly nervous that they were already back meeting with the specialist and I was missing it. As it happened, Brad’s arrival on a gurney, fully outfitted in protective gear, caused quite a stir in the waiting room—he was the VIP patient of the day for sure—so I doubt the receptionists could have missed it.

He was wheeled back and finally examined at length by Dr S, who at first asked a lot of questions about food allergies and whether Brad has ever had eczema (nope). Because the damage to the eyes is so symmetrical, he suspected it might be a rare eczema of the eyes. However, in the end Dr S feels that it was indeed graft vs. host disease, which is now ongoing but complicated by possible herpes simplex (an eye virus) and the definite presence of strep viridans (likely an opportunistic infection that arose after the Prokera rings were removed, but something that is not causing further vision impairment). Currently, there is damage to the epithelial (outer) layer of the cornea, as well as swelling and fluid in the middle layer, called the stroma, which has thickened like a bullseye. He said there may also be damage to the endothelial (innermost) layer of the cornea, but we won’t know that until after the epithelial layer heals and the stromal swelling resolves. I also asked whether he’s confident that the damage is limited to the cornea only, and he said he couldn’t be sure but there was no indication of inner eye damage. If there are no problems with the endothelial layer, healing in the other two layers should restore Brad’s vision; if the endothelial layer is compromised, however, he may eventually need a corneal transplant or other surgical intervention. (The endothelium can heal on its own but very, very slowly.) Dr S emphasized, however, that we are a long way from that.

Given that two months have elapsed with Brad getting both systemic treatment for the GVHD and topical eye treatments, Dr S felt that it was time to change up the treatment. The first step will be to greatly increase the lubrication of Brad’s eyes, giving him an ointment called Lacrilube hourly. Increased lubrication will, in theory, help the epithelial layer heal and resolve the scratches and tears there. In addition, Dr S noted that Brad’s lower eyelids roll in every time he blinks, thanks in part to the swelling around his eyes. (The technical name for this is spastic entropium. He still has some short, stubby eyelashes there and as the lids roll in, the lashes may be further scratching his eyes. (In fact his lashes and brows have been growing back in, much darker than they used to be, though his head is still bald; this contrast led Dr S, who was very cordial in manner, onto a chatty digression about interesting eyelash facts.) The fix for this was remarkably low-tech: Dr S rolled the lids out using his fingers and then stuck pieces of tape on Brad’s face. It turns out duct tape really can fix anything.

If these changes don’t help, there are two possible next steps. The first is a procedure called tarsorrhaphy, in which the eyelids are sewn or glued partially shut to promote healing. I am hoping they will proceed to this fairly quickly. The second is a treatment called autologous serum tears, and it was initially suggested by Joe, after doing some online research. Dr S was clearly surprised to hear it suggested by a layperson (Joe had passed the information along to me) but intrigued by the possibility and warmed to it very quickly. It involves making artificial tears from Brad’s own blood, stripping away the red blood cells to produce a unique serum that contains the growth factors and other biologically unique ingredients of real tears, which would promote healing.  Autologous serum tears are almost always made for outpatients, so there would be some logistical hurdles to overcome before that treatment could be made available to Brad in the hospital, but it’s a potentially promising avenue. Meanwhile, the ophthalmologists will be continuing to follow Brad extremely closely. It appears that his eye problems are just one more way in which his disease and its complications are very, very rare and surprise everyone.

All that is long and technical, so if you’re still with me, thanks. Long story short: there’s no immediate timeline for when Brad might be able to see again, and it may still be quite some time, but we have a much clearer diagnosis and a much better vision (even if that’s only metaphorical for now) of the plan for the future.

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5 thoughts on “Future vision

  1. Long and technical indeed, Kate: thanks so much for taking time to tell us about your days so thoughtfully and so clearly. It really helps us feel closer to you all through these ups and downs. Hugs to you all.

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