So let’s wrap back around for a closer look at that ophtho appointment we glossed over.  This will be one of those rare TA posts, one with no photographs.  Nothing to see here folks, but hopefully something worth your while to read.

I’m not really clear on what the purpose of this second ophtho visit is, or of many other things about my treatment plan either.  I’m making the assumption though that it’s a follow-up to see how I’m doing on the prednisone treatment and to decide whether it’s time for changes.  I half expect that given how well I think I’m doing he’ll start dropping me down from my daily 80 mg dose.

And I’m right in general about that, except when I walk out I’m still set at 80 mg for now. Exactly the same tests and observations are made as last week, changes are noted, conclusions are shared, and then the time comes for me to hit him with the list questions I’ve come with.

#1: it feels to me like my vision improvement in the good eye has leveled off in the last few days.  Am I likely at the best it’s going to get now, and is it time to make an optometry appointment for a new prescription that fits my new needs?

In general he agrees.  He’s seen a lot of improvement, and it won’t be a surprise if it stops here and hopefully doesn’t regress.  But let’s give it another week or two.  There might still be some improvement to hope for in the days ahead.

And, as we saw in the previous post (I can see hummingbirds!!), I was wrong and he’s right.  It is still getting better, and today is the best yet.

#2: And what can I expect of the bad eye?  Am I right that even though there is some light and some shadowy outlines of fingers and forearms  coming through the haze I’ll probably never have useful vision in that eye?

Yes, that is probably the case.  Unfortunate, but most likely true.  The medical profession missed the boat (though he doesn’t actually say this of course for obvious reasons), and that ship sailed probably a week ago.

#3: So what can I expect from the bad eye, because right now it’s a problem.  It gets tired and even a little achy from eye strain.  There is still some scintillation, and blurry images from the right ant times affect vision on the other eye so there’s blurry news and sometimes a little double vision.  And strangest of all, the eye generates its own imaginary lightlight.  At nighttime, with the lights off and the curtains closed and my eyes shut, I go to sleep in a dim grey light, an imaginary effect created by that eye.  Sometime there’s even a bright point source radiating from the upper edge somewhere, but when I look with the other eye there’s nothing but darkness there.  I’m learning to ignore it a bit, but it’s an unwelcome distraction.  Will that ever go away, or how do others deal with this situation?

You’ll adapt.  The miraculous brain’s got it covered.  It will eventually figure out what’s going on, filter it all out, and you won’t ’see’ any of this any more.

#4.  So what is rheumatology’s role in all this, and how urgent is it even if the soonest I can get in to see them is eight weeks in the future?

He agrees that it’s ridiculous that I won’t get a physical visit until so far off into the future, but says it’s not a concern.  Their role is to take over treatment in general, and to manage monitoring or reducing my steroid dosages.  Going forward, ophthalmology is in a support function, performing periodic exams or stepping in if something unusual with the eye itself needs attention.  

The rheumatologists are in charge now, starting today, and they’re already on the case.  I’ve been scheduled for blood tests early next week to check for ‘elevated markers’ that I haven’t read up on yet to understand more than it’s what they’re called.  He said that his expectation is that they’ll examine the test results, contact me to let me know what they mean, and likely reduce my prednisone dose before long as a result without actually seeing me in the flesh.

#6.  So what can I expect in the way of treatment in the months or years ahead.  I’m getting the idea that it will be episodic, with periodic visits with him or with rheumatology to assess my progress or regression, with the goal of getting me either off of steroids completely or on as low a dose as possible without regression.

Yes, it will be about like that, for as long as it takes.  Could be months, could be years, could be for the rest of my life.  It depends.

#7: and finally, the question that TA has been waiting for an answer to as much as anything.  I share with him the vision we have of how we plan to get on with our lives.  Does it sound reasonable, prudent, wise?  Does it fit in with the medical treatment plan I’m facing, which is obviously the most important consideration?

We have a long, frank, talk.  He’s an alert man, a good listener, but direct and honest.  I feel like I’ve been heard and understood, and I appreciate his honest response.

We schedule our next follow up, for two weeks from today this time.  And before I leave he gives me two pieces of advice.  One is that I need to start taking calcium and Vitamin D supplements to help protect me from the osteoporosis that’s a possible side effect of long term use of prednisone.  So that’s a part of the daily routine now, a simple thing to fit in.

And he tells me to always wear my glasses going forward, whether I need them or not.  It’s for protection.  I’m gifted to be walking away from this with one pretty good eye, but accidents happen.  He advises me to get ones with strong frames and impact resistant polycarbonate lenses with us protection, the sort of eyewear folks like triathletes use to protect their vision. They’re needed to protect me from risk of injury flying debris or unseen twigs or road accidents that might cost me the good eye and really change everything.  Its a giant step down to zero from one, a very sobering thought I’d already started thinking about on my own.

__________

So that’s it.  I thank him again, and plan to return in two weeks for my third ophtho visit.  I step back into the waiting room where Bruce has been patiently waiting for the last hour.  He looks up, I give him a smile and a quick thumbs up.  If I’d been quicker-witted I’d have taken a photo of Bruce so we’d have some show to go with this long  tell.

And then I reach for the new phone to give a call to Rachael to give her the verdict to the question we’ve had our lives on hold for.  Green light.