ICE SYNDROME SYMPTOMS SUBSIDE!

 The past 16 months have been rough as it relates to ICE Syndrome....2 cornea transplants and 2 glaucoma tube shunt revisions, and 1 tube shunt removal with ECP.   Honestly, it has been ROUGH and it has been TIRING.   Days laying flat on my back looking at the ceiling, high pressure aches, stabs of pain, headaches, double vision, clouded blinded vision, various cocktail of eye drops that sometimes create undesirable side effects, swollen red eye and on and on.     I am very much in the middle of this ICE stuff and it tries to take my "life" away.   I try so hard for it not too - but sometimes it just can't be helped.    Sometimes also, it feels like it just paralyzes me into inaction.  

But life does go on.   In those 16 months, my dear son went from a third quarter 4th grader to graduating out of elementary school.  Where does the time go - so MUCH I wanted to enjoy - and only feeling up to being able to do a LITTLE.     Still able to encourage and sometimes prod, I wanted to do so much more.   Sure, I went to parent teacher conferences, cheered at sporting activities, went to plays & ceremonies - but as I look back - did I really get to enjoy them as much as I could?    Did I savor the moments?   Could I have done more?    I enjoyed - but it seemed like ICE was at every nook and cranny trying to knock me back.  

My appointment on Monday was decent.    In the past two weeks, my pressure dropped to an acceptable level....between 17 and 21.   I had remaining sutures removed - which is helping stop the excessive thick watering.    There is still cloudy vision and double shadow vision - but that is a new normal now and one that I'll live with for a long while if I can.    I just don't want to hit the surgery table anytime soon.   Can I really start living again?    It's summer - can I really enjoy it?    Can I savor the moments this summer with my son before he hits those middle school years?   

One thing is for sure - I'm going to give it all I got to make it happen.     My new command:  "ICE symptoms subside - I have more important things to do right now!"

The ACHE and When Eye Pressure Just Won't Stay Down

It was just four weeks ago when I had my tube shunt removal - and some laser zapping of cells that make aqueous fluid.     Day One after surgery - eye pressure was 9.    One week after surgery - eye pressure was 11.   Beautiful! 

Late last week I felt a couple of little twinges on the inner upper quadrant of my eye & eye socket....I'll just call it "the ACHE".    I really didn't think much of it - although I did wonder if perhaps it had to do with sutures from surgery or some other little complication of surgery.   My three-week surgery followup was earlier this week and I mentioned "the ACHE" to the tech and my doctor took notice of the note in my record right away.    Observing the physical condition of my eye - nothing was really out of the ordinary - just my typical corneal edema.   

And then it was time to measure the pressure.   It seemed a little quiet a little longer than normal and then my doc asked the technician to bring in a pen to try to get a different reading.   I'm thinking "uh-oh".   And yes, in fact, in two weeks time my pressure jumped from 11 to 27.    Unexpected and disheartening to me.   27 was essentially the pressure that got me into surgery - and now - just after one month after surgery, I am back to where I started - less one tube shunt in my eye.   A still swollen cornea, high pressure, double "shadow" vision.   Ugh.   I guess I can celebrate that I have just two tube shunts, not three - so my eye just doesn't feel quite as full.  

I then remembered "the ACHE".    In all of my over-zealousness that my pressure might be getting under control, I had forgotten the true meaning of the "the ACHE".   You see, over all the years, "the ACHE" has been the warning signal that my pressure has climbed or spiked.   To what, I never know.    But in this case, my eye was telling me, that the pressure was not staying down.    

If you have ICE, take note of what you're feeling.   KNOW YOUR EYE.    I can always tell when something is not right.    Oh - so many times - I just wish someone would confirm that I am imagining "the ACHE"!   But so far, I have been right most of the time.  

So the plan of attack - drop down to one steroid (Pred Forte) drop per day (I had already tapered down from three to two drops/day) because the steroid drops to control the inflammation & potential rejection of the cornea transplant can cause increased eye pressure.   Add an additional drop daily to my glaucoma medication - in this case Xalatan with my ongoing twice a day Cosopt.    I see the doc again in two weeks.   We'll see.

So in this mystery of a disease & its complications, I'm continuing on through the journey.   So many things to try to correct - and so many variables to deal with.   Honestly, I just need a little break and a little good news for a little bit longer than two weeks. 

Oh well, I have been so busy with life - that I'll just try to push this aside until I have to face it again in two weeks.    In the meantime, I will live life today & tomorrow & the next, & next.........