Sneaking this quick update in under the wire, as it is still February 6 here on the west coast. Brad seemed very fatigued today and, honestly, a little down. He is still having a lot of trouble with his eyes and his gastro symptoms continue. He’s not eating at all and has a lot of nausea at the mere mention of food. He is, however, spending a little more time up and out of bed, sitting in a chair, so that’s a bit of improvement.
We had been promised that the big fancy corneal specialist team would be around today, so Joe, Susan, and I tag-teamed to make sure someone was there all day long, from 9am until after 5pm. Wouldn’t you know it, the specialists showed up after 6pm, so we missed them, but Brad updated me and seemed more engaged by the discussion regarding his vision than he has been for some time. (He’s understandably seemed pretty worried about it all.) The corneal team, apparently, pushed to do the eye procedure the other eye specialists were touting earlier in the week; however, this was strongly nixed by the transplant attending physician, Dr A, who feels that Brad’s immune system and overall state is not robust enough to withstand an operation. (Dr. R, previously mentioned on this blog, has ended her two-week rotation and now Dr. A is in charge.)
Brad told me, via text, that the doctors conversed and agreed upon a different procedure, inserting something called Prokera rings into the eye. According to my rather brief, late-night googling about these, they are a bit like contact lenses made from amniotic membranes (the tissues are donated and subject to quality controls), which in effect temporarily bandage or protect the eye surface and also help heal corneal damage without requiring surgery. (The surgery that was proposed also would have involved amniotic membranes, but a more permanent placement.) The timing of when Brad will receive these is unclear, but it’s encouraging to me that they have a treatment that is a happy medium between nothing and a more invasive surgery that he can’t have right now.
It was also very heartening to hear that the eye specialists have said that they don’t feel his vision is at risk for the long term. Honestly, it feels a little sad that the good news today is “hey, you’re likely to continue to be able to see!” For most of us, that’s just the baseline expectation we take for granted, not actual good news. But we’ll take what we can get—and hope the trend of small, incremental gains continues.
3 thoughts on “Day +26”
So glad Brad’s long-term vision does not appear to be threatened, and so sorry that all of you have to go through this. Thinking of you. Millie Bortin
Sent from my iPhone
I am with Millie.
Here is to small incremental gains.