Day +100

So. Today is the hundredth day post-transplant. We haven’t been paying much attention to the calendar and counting of days that used to govern everything, but this one I noticed. It seemed like a good day for a status report.

Day 100 is traditionally seen as the cutoff between a diagnosis of acute graft-vs-host disease (GVHD) and the chronic variety, or ongoing issues with GVHD that are usually less severe. Brad’s GVHD is greatly improved from its harshest manifestations of a couple of months ago, but he does have some ongoing issues, including stomach pain when he eats. The good news there is that he’s eating, and even having some solid food—the other day I arrived at lunchtime to find that he’d had half a grilled ham and cheese sandwich. That represents a big advance. He remains on IV nutrition, but the doctors have adjusted it so that he only receives it at night—and thus he is able to be disconnected from the IV completely during the day. They’ve also shifted all his (considerable number of!) medications to oral versions. That has been great, and enables us to take him out for walks untethered—a huge sense of freedom after three months tied to a an IV pole. It’s turned warm here, and he likes to go over to the shady and relatively quiet breezeway in between the buildings of the Cancer Center, across the street from the hospital.

His vision continues to be a problem and the tarsorrhaphy (in which his eyes were sutured shut) is still in place, and likely to remain so for some time. The next-step treatment, autologous serum tears made from his own blood (so they mimic his natural tears precisely) is now underway—it’s a lengthy process to make the tears and then quarantine them, however. We expect to get them in 3-4 weeks and are hopeful they will speed healing of the corneas along. For now, however, he functionally has no vision, though when the eye doctors open the tarsorrhaphy he is noticing slightly improved peripheral vision.

Speaking of a timeline of 3-4 weeks, we are also getting some indications that the medical team may be ready to send him home within that timeframe. That, of course, depends on continued improvement. But, with a view to him eventually being at home, the medical team is getting him some more physical therapy to increase his strength and ability to handle the challenges of being home, as well as occupational therapy and other services to help him cope with his functional blindness. With the help of some friends, I’m working on lining up reliable in-home care. While it all seems a bit daunting, we are very much looking forward to him being home at some point.

Eyes wide shut

Since my last update, Brad has been getting eye lubrication hourly, in the hopes that that would help the epithelial (outermost) layer of his cornea heal more quickly. While he has recovered a little more peripheral vision and his central vision seems very slightly less clouded, the progress (as with everything else) remained very slow, so the ophthalmologists decided to go forward with the next procedure they had planned: the tarsorrhaphy, which was done yesterday in his room.

I’ll start out by saying that the procedure, which Brad’s eyes are being held temporarily closed to facilitate healing, went very smoothly and Brad feels just fine today and is in no pain. I don’t plan to get too graphic in this post. But that said, before I continue, let me give a warning to the very squeamish: even though Brad’s procedure was very smooth sailing, you may want to stop reading right now. Yes, you; if you used to do a full-body shudder as a kid whenever anyone said that gruesome rhyme about truth telling (you know the one: “cross my heart, hope to die, stick a needle in my eye”), you should definitely not google “tarsorrhaphy” and may not want to read this post. Just know that Brad’s eyes are getting a complete rest to speed up healing and everything is fine, and we’ll keep you posted on how things are going with his vision. I’ll also say he’s starting to eat a bit more (latest: beef stew) and they are doing a calorie count on him and reducing his IV nutrition, though he still has a long way to go on volume of food before he can leave the TPN behind. And, as you know, he’s starting to feel better and get out of the hospital room more, so progress on his overall condition continues, slowly.

For those who want a few more eye details, they lie ahead.

The idea behind a tarsorrhaphy is to speed healing by ensuring that the regrowing, healthy epithelial cells aren’t continually irritated by blinking and the friction of the eyelid on the eye. In Brad’s case, the fact that his lower lids were turning inward (along with the lashes) made this function of the tarsorrhaphy especially important. Although he was keeping his eyes closed most of the time, he still involuntarily blinked. Thus the doctors decided to do a “temporary drawstring tarsorrhaphy,” which prevents him from opening and closing his eyes but allows the doctors and nurses to check his progress and provide eyedrops by opening his eyelids gently. The lids are sutured together, with small transparent plastic strips lying over the top of his eyelid (right along the line where eyeliner would be applied if he were an eyeliner kind of guy). The doctors threaded the ends of the sutures, which are extremely fine, through the plastic pieces, and they are looped and tied for use as the “drawstring” of the name.

Brad was understandably anxious about the procedure but the worst parts turned out to be the anticipation and the numbing. He obviously got a big dose of local anesthesia to numb the eye area completely. After that, the suturing went relatively quickly. By luck, the ophthalmologists turned up to do the procedure (which was all done in his room, with him lying on the bed) while I was there, so I was able to stay and hold his hand during the procedure. He did great throughout and today said that the sutures are not bothering him. Thanks to the clear plastic strips, from across the room his eyes don’t look that different from usual closed eyes, and even up close his eyes don’t look too bad or swollen. (Though, he has two pieces of tape on his forehead holding the suture ends up and out of the way. Again, I had no idea tape figured so prominently in the ocular-medicine world.)

The eye doctors don’t have a timeframe or projection for how long they will keep the eyes closed; that depends on his progress. They do say that when the vision is improved, removal of the tarsorrhaphy will be simple and painless. So, as with so much of the rest of Brad’s recovery, now we wait.

A note from Brad

Hi everyone. This is Brad, speaking through Kate’s fingertips. I’m sorry I haven’t posted anything in my own words on this blog for a long time, but I’ve never liked the idea of dictating to someone else, even in this manner. Besides, for a long time I was too sick to formulate any thought I felt was worth sharing. Now, however, I am feeling considerably better and more coherent, but my vision is still too poor to permit me to read, write, or type. Kate and my mother have been reading many of your messages and blog comments to me and I want to acknowledge them, thank you for them, and let you know that my spirits are good and that I am continuing to recover. I value your good wishes and engagement with my situation more than you can know. This is the hardest period of my life so far, but it will come to an end eventually, and I look forward to being able to communicate normally again.