Retinal Thrombosis

My Hematologist yelled at me.

Okay, he didn’t really ‘yell’, but he scolded me. It was my fault. I didn’t tell him about something that I apparently should have.

Back in August, I walked out to my garden. As I was crossing the back yard, I was annoyed by a spot in my vision. You know how if you look at a very bright reflection, and then look away, you have a spot in your vision? Well, that’s what this was like. It stretched across my entire field of vision, in a wide band – oh, maybe a quarter of the height of my FOV – located just below the halfway point. So, like the lower 50-75% of the ‘window’ of my vision. It wasn’t a straight line, it was jagged, as if someone tore out that part of my vision and this ‘reflection-damaged’ area was behind it.
Well, quite honestly, I figured I had glanced at a window and caught the reflection. I expected it to go away quickly. It didn’t. In fact, it got stronger. Not bigger, just more noticeable. I closed my left eye. Still there. I closed my right eye. Gone. Okay, so whatever it was, it was only affecting my right eye.

Well, if you’ve read the rest of my posts you know that my whole ET experience started with a ‘smeared’ spot in my vision (which still remains, by the way). I had waited months to mention it to my doctor, and in trying to figure out what it was we uncovered my ET. So when this new vision problem remained for only a few hours, I went in and called my doctor. The general practitioner, not the hematologist. He immediately referred me to the Opthamologist I had seen two years prior for the smeared spot.

I was able to get in to see him within a few days.  The spot was still there.  The doctor dilated my pupils and took a look.  Then he leaned back and said, “it’s in your right eye, isn’t it?”  Yes.  “Whereabouts?”  I told him just under the halfway point.  He nodded.  He told me that I had a damaged area on my retina.  He said the blood flow had been cut off, and that part of my retina was ‘dead’.  But, he assured me, it would most likely heal itself as blood flow returned.

So, I asked him the obvious question, Was this caused by a blood clot?  Yep.

We agreed it was likely caused by my ET.  Then he said to come back in 3 months to make sure it was healed (I did, and it was…the vision was slowly restored to that area over time, although that pesky smeared spot still remains).

So, anyway, I went on my merry way, figuring that was that.  I continued to go for my monthly blood draws, and 3 months later, in November, I went to see my Hematologist as normal.  He asked me how the last 3 months had been, and I said something along the lines of, ‘oh, and there was this blood clot, but that’s gone now’.  He calmly put down his pen and gave me that look.  “Blood clot?”  I shifted in my chair.  “Er…yes.”  And I explained to him what had happened.

That’s when the scolding began.  I was made to understand that this was not a symptom.  This was an episode.  We mention new symptoms to our Hematologist at our next appointment.  We immediately call our Hematologist to tell him about an episode.  Understood?  Yes, understood.

My platelet count at the time was in the 400s.  Not bad, really.  In fact, pretty good.  But my Hematologist said that, given this ‘episode’, it was still too high.  He said this new episode showed that we needed to be much more proactive.  That meant bringing my platelet count down lower.  So, my Hydrea dose was increased to 1500mg/day.  And that’s where it stayed until this past week, which I will tell you about in another post.


~ by julie70 on December 4, 2010.

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