So finally I get to see my rheumatologist!  This is a day that’s been in the forefront of our minds ever since I got out of the hospital, really.  But my appointment isn’t until 11, which is perfect - it leaves just enough time to head over to Clinton Street to see who shows up.

Heart

5

Comment

0

Link

Log in to comment or reply

I’ve been anxious to finally met my rheumatologist for many reasons.  It will be the first time to have a real conversation about my condition, the treatment plan, what to expect as I taper off the prednisone, and so on.  I’ve got a general idea from my limited interaction and the initial blood draw, but there’s nothing to replace an interactive conversation.

And, of course, we’re viewing this appointment as the gatekeeper for our travel aspirations, the second green light we’re hoping for that will let us proceed with plans to return to Europe next month.

So how did it go?  First off, I’m lucky - he’s one of the good ones, a younger, engaged, bright, forthright man that inspires confidence.  He spends about fifteen minutes reviewing my situation, examining me, and discussing the treatment plan before asking what questions I have.  So let’s start there.

First, he sounds almost startled when I describe my left eye, and that it has returned to virtually its same state as it was before GCA began attacking my vision.  He said that’s really unusual and that they see very few cases like mine.  He agreed that the ophthalmologist was right in telling me that once you enter treatment the expectation is for no improvement and the goal is preservation of what remains - which you’ll recall was very gray: I was viewing the world through a fairly small, blurry oval - one through which I could see Rachael’s face, read and write the blog, work the crossword puzzle and sudoku, but not much more than that.  So I really have been blessed with a miracle here.

He goes on to describe the treatment plan, which generally aligns with what I expected - a series of blood draws roughly every two weeks, with the results monitored to see if the prednisone dosage can be further reduced yet.  And as an aside for those that are curious about or know of them, the draws are to perform two fairly standard diagnostic tests: CRP (C-reactive protein) and  ESR (erythrocyte sedimentation rate).

That general understanding is correct, but the added context he gives makes me more anxious, even somewhat fearful.  He said the goal is to work me off of steroids without triggering the reactivation of the disease.  Part of the treatment plan is for them to monitor my CRP and ESR results and adjust my prednisone levels.  The other part is my responsibility, to monitor myself for indications that the disease may be reactivating.  There is a real risk here that it could come back and attack my optic nerves again.  There is no guarantee that this miracle is going to last.

There are a few rules I’m to live by in this self monitoring.  If I experience deterioration in my vision, I’m to immediately increase my prednisone dosage back to 60 mg/day (the level I’m at today) and contact them for further instructions.  And if I experience any of the onset conditions - the headaches, the pain in the jaws - I’m to admit myself into an emergency room for another possible round of intravenous steroids.  

So that’s sobering.

So, my turn.  I tell him of our lifestyle and our hopes for travel, letting him know that we’d like to leave the country for the next nine months if not longer.  Our plan is to stay in Western European countries (Italy, Spain, France, England) where we should have no difficulty finding labs where blood tests can be performed and the results sent back to Oregon.  And our intent is to stay near public transportation that would let us fly home on short notice if the need arises.  Is that a viable scenario?

Yes, it is.  We talk it through, and he gives me everything we could hope for.  I leave the office with a cover letter from him that describes my diagnosis and condition and the fact that I need to have regular blood tests to monitor it; and he also sends orders for each of the two specific tests.  He says I should be able to just take them to any lab that performs these specific tests, show them the orders, and get tested.  And if I have to go to an emergency room the cover letter should be sufficient to get me admitted and treated.  

Is there anything else?  Well, yes.  We discuss my current symptoms - specifically the swelling, the knee pain and instability.  He doesn’t find anything concerning in them, but he says a good knee brace might help - and he orders up one for me to pick up on the cast room before I leave.  And, after testing it out afterwards, it definitely does help.

Heart

3

Comment

0

Link

Log in to comment or reply

So it’s a go.  green light, more details to come.  I’ll probably open up a new journal to describe the travel plans shortly.

I had started the day thinking I’d head down to Oaks Bottom for some birding next but instead I drive east toward the airport to pick up a pair of smaller brake levers for Rachael, who ordered them hoping that it will make braking easier for her.  I’ll take them and her bike down to West End tomorrow to see if they can fit the work in before we leave.

Heart

1

Comment

1

Link

Andrea BrownWhoa, I had no idea either. I think we've ordered at least six sets of tires from these folks.
Reply to this comment
1 week ago

Log in to comment or reply

There are other things that fill the rest of the afternoon, including a long phone conversation with Susan to discuss the state of the world and check in on her recovery from her unfortunate fall and rib injury.  Toward the end of the day though it’s relaxing to just sit around and enjoy the view and watch waves of crows start streaming in for the night from around the county.  The time will go fast, but I think we’re really going to enjoy our month here.

Heart

2

Comment

0

Link

Log in to comment or reply

Heart

2

Comment

0

Link

Log in to comment or reply

Heart

5

Comment

0

Link

Log in to comment or reply