Last wks Eye Appt went ok, turns out there where changes in several areas though I am not sure I'll remember it all correctly.. Vision wise the astigmatism is worse, far sighted vision has worsened and he added to my eye glases script for near sighted issues as well which he said had worsened since last yr. I can't remember what the 1 other issue was but mustn't have been to big. I did figure out if when they put in the dilating drops you don't keep your eyes closed the entire time they say your vision will be blurried but certainly not as out of focus as otherwise! This was nice and good as I had somewhere I wanted to be a few hrs after!
This yr the Eye dr. highly recommended (emphasized repeatedly) that I add the bifocal option to my new far sighted lens script. In addition last yr this Dr had recommended bifocals but the script was mild enough I could get away with out it (mostly just didn't want to adapt, lol) and honestly when the shunts where really good vision for reading was much improved so those periods where shunt(s) weren't as good I just haven't read much.
Thankfully things like this I can enlarge as I type and edit (though clearly anyone who reads this knows I still seem to likely miss enough). =)
The vision issues have admittedly stunk some as I love picking up a good book to read so perhaps it will be a good thing if I can get used to having the bifocals on the new frames as I can hopefully read more easily again?
Hopefully these things will help overall though at this pt (not yet having the new script or frames) I admittedly am thinking it's pretty unlikely the worsened pressure/vision is going to improve just by having the new/stronger glasses (lenses). In the past almost anytime vision was like it is now it would improve when we got the shunt/shunts working better again so I admittedly just don't know. Who knows?
I should get the new frames w/lenses (very similar in style to my current) sometime later this wk.
Because the pressure/headache type symptoms just seem to be getting worse over the past few weeks and not at all improving + the vision
and in general so many areas just off I talked to Dr.Bragg and am going in to see her tmrw (Tues). She would have seen me today (Monday) but the weather here in WI is pretty miserable so she offered to see me Tues. which I am grateful for. I think she may be on vacation or not in the office the rest of this wk, I am not entirely sure but whatever the case very grateful she made time to see me.
I was really, really, realllyyyy trying to avoid having to see her (not b/c I don't like her, she is more than kind and has done so much for my care) but just want to figure this out, this time has been weiirrddd in many ways compared to many shunt issues.. I am always amazed honestly she doesn't give up and doesn't seem to get tired of trying to help me!?! I am definitely grateful though.
Like I said I really wish I wouldn't need to ask for her help, again not b/c she's not in reality amazing but I also know these symptoms are so off, worse than sometimes (but not vomiting off, just off in a weird, hard to explain way) so Dr.Bragg's Secretary called this morning and they've scheduled a CT Scan + Appt with Dr.Bragg Tues afternoon.
Hopefully, maybe some simple answer? I meet with the Heart Surgeon next wk Tues and this wk due to the weather today am missing ERT. It is a LITTLE frustrating that given FMLH's infusion clinic is open 7days a wk they can't manage to fit in the ERT Infusion a different day this wk but it's always that way "b/c your infusion runs over such a long period". When at CHW and my Infusion Nurses did ERT 1 day a week then had regular jobs at CHW they still managed most of the time to be able to reschedule infusion for a different day during the wk if I was sick or bad weather.. FMLH is CRAP in this regard!
Ironically, unrelated (and I don't at all regret not taking the earlier date) but had I opted for the 1st OHS date offered 1.5wks ago i'd be done with the 3rd OHS and on to recovery. Like I said though I don't regret not taking that 1st offered date - I am glad to have been able to spend Christmas outside the hospital! We had a good few days, even if I wasn't feeling the greatest at many moments I am still very, very grateful I was outside the hospital and with family!
Will update any info from tomorrow's Appt with Dr.Bragg in the next day or two.
Thanks for stopping by,
Erica
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