Retinopathy Update

Realizing that it’s been a while since I posted a retinopathy update, I figured it was about time.  So, as promised, here it is! 

My lack of posting about retinopathy doesn’t mean that there’s nothing to post about.  I wish it did.  Unfortunately there’s still a fair bit of activity in there…but it is starting to change a bit.  There’s still the constant leaking and oozing, but it seems that it might be slowing down (*fingers crossed*).  Initially the leaks had been pretty big and dark and oozy, but at this point theylook more like a fine mist, or stringy streaks, when they happen.  

The bleeding is still happening in both eyes, which is discouraging.  I was hoping the bleeding from the right eye would be a one-time-thing, but it’s actually the more active eye at this point.  It’s still just leaking from the one place (the bottom outer edge), but it bleeds fairly regularly.  Thankfully the resulting mess stays mostly just in the periphery.

The bleeding from the left eye has been a bit from here and a bit from there.  Again, it’s largely in the periphery, but this eye tends to get “misting” throughout.  There’s still a pretty big glob dangling from the top left corner – the location of the initial bleed.  I’m not sure how much of it is from that first bleed, and how much of it is from subsequent ones.

I do have another ophthalmologist appointment coming up next week.  Hopefully he tells me that there are no new developments, but I’m not sure that will be the case.  I had an optometrist appointment (including pupil dilation) about a month-and-a-half ago and he noted some new growth that didn’t sound like anything my ophtho had mentioned before, so it could be something fresh.  Here’s hoping that it’s not! 

Avastin shots are an option I’m considering pretty heavily at this point.  I’ll probably go for them, but I want to ask my ophtho more about it at my appointment before I decide.  Hopefully he can give me his take on the chance of success, and also tell me what the risks are.  I don’t want anyone sticking a needle in my eye before we discuss risks!  As you may recall, I’m generally not a fan of needles, so the thought of this treatment does give me the willies in a big way, but I think I can handle it.

I’m actually interested to hear if any of you blog-readers out there have had experiences with Avastin shots that you can share with me.  I’m curious about how successful they have been.  If you don’t want to post your experience in the comment section of this post, feel free to email me at mewithd “at” gmail “dot” com.

The other consideration in all of this, of course, is the potential for my husband and I to expand our family further, and the impact that retinopathy may have on this.  We’ve always said that, assuming the activity in my eyes settles down, we want to have two kids.  We fully expected that my eyes would settle down after the pregnancy factors (i.e. growth hormones and high blood pressure with pre-eclampsia) were gone.  Unfortunately it hasn’t quite worked out that way.  My obstetrician said at my post-natal appointment that he would like us to try to conceive within two years of my previous pregnancy if we’re going to go for it again.  My understanding is that this is because of the complications I had with the first one, and the fact that there is a greater chance of having complications again (or worse complications) if I’m older.  Two years would put me at 32, which isn’t really that old, but I’ve always heard that 35 is sort of the “magic number” (not that there really is such a thing) in terms of risk, so I guess he wants me to stay as far away from that as possible.

Anyway, at this point, I’d really like for my eyes to have been clear, and the retinopathy inactive, for a year (not that 1 year is a magic number either…) before conceiving again.  Since my daughter is already 15 months and my eyes are still leaky, this is putting us a little past the 2-year mark that my OB called for.  Obviously the 2 year mark isn’t set in stone, but still…  I feel like the possibility of that second child is slipping away month by month. 

Maybe the Avastin shots will help.  We’ll see.  It will obviously also be dependent on any whether or not there is any new blood vessel growth.  Until now, my ophtho has always maintained that there has been no “neo-vascularization” since my pregnancy, but I don’t know if that will still be the case at my next appointment given what my optometrist said.  I guess I’ll have to wait and see. 

It’s still a waiting game.  Maybe it always will be.


2 responses to this post.

  1. Posted by Sylvie on August 29, 2010 at 2:33 pm

    This retinopathy thing sucks. To never quite know, always at the back of one’s mind…..that is stressful. Sounds like you are handling it well. I love the last post with the new glasses distracting you from the retinopathy. I have a few favorite runners that seem to ‘hide’ some of my neuropathy (can’t “feel” the numbness as much). Diabetes does affect a lot of small day to day decisions and big life decisions too, I think. The fact that PWD still are able to accomplish a whole lot of “normal” things is just a testament to a whole lot of strong will, perseverance and dedication. Hope your appointment goes well this week and that the waiting game for you will be on hold for a very long time.


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