Category Archives: Marfan

Coming Out of the Dark

Note: I wrote this on February 27, 2014.

Coming Out of the Dark

Today is the one-year anniversary of our nightmare and our miracle.

On February 27, 2013, Aaron prepared for surgery for his third consecutive retinal detachment in his only working eye. He had already spent the majority of the past four months blind, or nearly so, and forced to sit, sleep, eat, and walk with his head down, face parallel to the floor, while a gas bubble held his healing retina in place. Except that it wasn’t working. Fluid was entering his eye again and would soon cause a fresh tear in his fragile retina. It was a fresh tear in our hearts.

For months he had endured—darkness, stiffness, pain, isolation, helplessness, dependence—propelled only by the hope that this obedience would make the difference, would save his right eye unlike the surgeries on his left eye when he was a teenager and did not follow these rules. Each day he sat alone, all day, save visits from friends to give him shots or help with meals. He lived on phone calls and text messages read by Siri and coffee drunk through a straw because he could not so much as tip back a mug and casseroles from church folks and the asiago cheese bagels my mother kept bringing to fill her own need to do something, anything.

As he sat, I ran, in frantic circles, overwhelmed by keeping up with work and after-school arrangements and care calendars and appointments and the neverending dishes he used to do so religiously and well-meaning questions with no answers to give but wait-and-sees and hopefullys and those damn, damn unknowns.

All of November. All of December. Most of January. Now February . . . and this last wound seemed worst than the first, for the doctor gave up hope that another gas bubble would work and planned for this third surgery to use silicone oil to fill the eye. It would not require the facedown positioning but also would not go away—it would be left in indefinitely, leaving Aaron able to see only what he could see through the oil, which we doubted with his already damaged eye would be much of anything.

It felt like a theft. Aaron’s vision had been improving, but because of the encroaching fluid, on Wednesday at 8:00 a.m. the doctor was going to take it away. He was going to make my husband functionally blind, to save some of his sight. Continue reading Coming Out of the Dark

The Frustrating Roller Coaster

“How’s Aaron’s eye? Are they going to do surgery or not?” Answers have varied much more than expected–and more than my emotional state could handle–over the last couple weeks.

On the 3rd the eye doctor said Aaron’s lens was “stable” where it was and so he shouldn’t have surgery. It was so stable, in fact, that it stayed where it was for four more days before shifting from the bottom of his eye over to the left side. So instead of seeing double when looking down, he started seeing it sort of pop in and out of his vision from the left. It’s not double vision but more like he has a hair in his eye that he can’t get out, and sometimes light reflects through it in funny ways. Assuming that it having moved meant it was, you know, actually not stable, we started thinking surgery again. He got squeezed in at the eye specialist’s on Monday afternoon, although he wasn’t able to see his regular doctor.

This guy said it probably had moved, but it was still not a problem to leave it where it was. Aaron said but this is really annoying in my vision. He said but surgery is risky. Aaron said you don’t understand how frustrating this is. He said you don’t understand how risky it is. He really pretty much made it his mission to scare the crap out of us as far as the idea of surgery. And it’s understandable–it’s their job to weigh the risks based on their expertise, and given Aaron’s history….  But still frustrating.

Aaron will see his usual specialist this week, but the discussion will probably be the same. The other doctor did say it’s possible the lens would completely detach and fall all the way down to the bottom of his eye where he wouldn’t see it at all, and they’d still probably leave it there. Maybe that would be less frustrating. Meanwhile please pray that stable really means stable, or if it’s going to move again it moves to the least annoying (but still retinally safe) place–and that Aaron can adapt to and accept however it’s going to be.

(That sermon on contentment really sucked!)

Now that this roller coaster of yes-no-maybe-so surgery thoughts is hopefully coming to a complete stop, we are looking ahead to seminary starting back up for Aaron and a new routine for all of us. This week is sort of the last hurrah of summer already, since orientation starts next week. I feel like I shouldn’t say it, but I think I’m ready for fall. But not winter!

Here Eye Go Again

I think I’ve written this post before. It sucks.

Aaron is going to have eye surgery soon. He only has vision in his right eye (due to retinal detachment in the left, years ago). So while we kind of took it in stride when we found out–because hey, what’s one more hospital trip this year?–the reality is that this is a big, scary, pain in the —— deal.

In 2006 he had an artifical lens implanted in his right eye. On Wednesday it fell out, basically. Aaron and our friend B.McD were going to take the kids to the beach, but as they were leaving Aaron felt like his contact was messed up. He couldn’t fix it, couldn’t fix it, and realized he couldn’t see anything with his glasses on either. A neighbor friend took him to the hospital and B. heroically insanely took all the kids to the beach anyway. The hospital sent Aaron to a nearby opthalmologist, where I met him.

The doctor seemed almost a bit too excited when he was able to confirm his theory: Aaron’s lens had dislocated and slipped down toward the bottom of his eye, so he was able to see pretty well looking straight ahead some of the time but had bad double vision especially when looking down because the lens would sort of float into his line of vision. The doctor said the lens possibly came loose because Aaron’s eye shape has changed quite a bit–his prescription actually went from a positive to a negative! This would be unusual for most of us but is not so unusual for someone with Marfan Syndrome, because it makes tissues stretchy, and the gas permeable contacts he was wearing may have contributed.

They’ll have to take the lens out of there, but this doctor thinks they won’t put in a new one because now he is actually seeing better without a lens than he was with the implant. Crazy. Tuesday he will see the vitreo/retinal specialist who will do the surgery, and we’ll see what he says about a new implant. Aaron did get new glasses with this new prescription Friday, so he can see and drive again in the meantime, although sometimes he still gets the double vision.

Please pray for all the doctors’ wisdom and for the upcoming surgery, which will probably be early next week, and that his retina is protected while the lens is floating around in there. I’ll let you know after Tuesday what the plan is.*

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*Dangitall, am I going to have to get on Facebook too?!