Why Do I Bother?

Had a 9.00am appointment yesterday (Friday, 9 July) with my glaucoma doctor at Wills Eye Institute in Philadelphia.  We usually schedule appointments that early for the cornea and retina doc’s in Bala, since Jane’s school is on the way and we can drop her off, so I guess we were in that frame of mind when we made the appointment (because Jane has been on summer break for a month…)  I’m not sure why I even needed this appointment since I was just there in May.

We left the house at 8.15am and traffic was surprisingly light.  Even the road work on the Girard Point Bridge didn’t slow us down.  Things were going great until we were about 25 yards from the parking garage at Wills Eye.  A minivan was at the entrance and the driver seemed like she didn’t want to go in.  Once she noticed us, she proceeded slowly.  She got her parking ticket out of the machine and continued very slowly up into the garage.  We always like to park on the top floor, which is the seventh, because it is the only floor that you don’t have to go to the ground floor, get off the elevator, and then get on a different elevator.  On seven, you walk right into the hospital and grab an elevator to either nine (low vision,) ten (cornea,) or eleven (glaucoma.)

Anyway, after a couple of floors, this lady has a parade of cars behind her.  She sees an open spot and tries to park.  She pulls in at the wrong angle and sees she will hit the car on her left.  Backs up, but doesn’t change her turn at all.  Tries to pull in exactly the same way, then backs up again because she sees she still doesn’t have clearance on her left.  Horns start honking.  People start yelling.  She then just stops.  Seriously.  I ask, “Who’s driving that car, Stevie Wonder?”  She is in the middle of the driveway, blocking us and everyone behind us.  More honking.  More yelling.  Eliz did neither.  She pulls away from the space to give us and everyone else room to get past her.  At this point, I’m regretting coming to this appointment.  We get to seven and head inside.

We sign-in on the eleventh floor and have a seat.  Eliz starts to read out the letters for the word scramble in the newspaper.  My mind is not in shape for figuring these out (I was up until 2.30am researching colognes, perfumes, and other hair and skin care products that can be drop shipped to our customers — watch for them soon on ForYourSalon.com.)  After a couple of minutes we get called to the desk to confirm my info and to pay the copay.  As the receptionist is running our credit card (we always pay by credit card at doctors’ appointments because we’ve been burned in the past by having to prove we paid,) she is distracted from another receptionist talking on her mobile phone.  She realizes as she’s handing Eliz the slip to sign that she charged us $25, not the correct amount of $20.  “Oh, I’m sorry, I’ve charged you $25.  You don’t mind if we just put the extra $5 on your account, do you?  It really is a pain to void it,” she says.  Eliz says okay and signs the slip.  We head back to the waiting area.  I’m more annoyed now.  I’m not sure if it was just the receptionist I was annoyed with or me for not saying anything about it.  Eliz and I discuss what just happened and then Eliz starts back on the sudoku.  I close my eyes and wait to be called back.

After some time, we get called and head to a room.  The tech takes us to a room we’ve never been in and begins to ask how things are going.  I tell her the same old story.  She then asks about my meds.  I begin to tell her about the eye drops I’m on, while she is reading the meds that were written in my chart from the last appointment.  She interrupts me before I get one med out of my mouth.  She says, “Are you still on Predforte?”   I answer no and again begin to tell her what I’m on.  She interrupts again asks about another steroid, similar to Predforte (but not the one I’m on.)  Again, I say no and say I’m on Durezol, but pronounce it Durzol.  She then says, “Do you mean…” and says something with about something that begins with a “D,” but is about six syllables longer than Dur ez ol.  Eliz and I say no.  This goes on for another couple of minutes and we move on to the next eye drop.  Since it is the newest one, I had ripped the top of the box off and brought it with since I couldn’t see to read the name.  I then have to explain to her several times how it is applied (though it is an eye drop, the cornea doc told me to put it on my finger — it is very thick — and, with my eye closed, rub it along the seam where my lids meet.)  She wasn’t getting it…  The last eye drop was an easy one.  She writes it down and has a look at my eyes.

She asks me to cover my left eye while she shines a light into my right.  She asks if I can see it, which I can.  She moves the light back a foot or two and asks again.  This time I can’t see it.  Okay, now onto the left eye and the eye chart.  I was happy that it was a different chart, one I haven’t memorized.  “Do you see that,” she asks while showing the big E.  I tell her yes, it is the E.  The next line was a C and a D, which I also am able to read.  I can’t really see the next line, so she hands me the pinholes.  Still no luck.  She says okay and takes the pinholes from me and writes somethings in my chart.  While she’s doing this, I continue to try to see the 20/100 line.  One of the letters in the middle looks like an H or an N.  I ask if that is true and she says, “Yes, it’s an H.  I’ll give you a plus one.”  Hooray.  We then have to go back to the waiting room until there is a room the doctor can see us in.  I’m happy to get away from that know-it-all tech.

After a short wait, we head to a different exam room.  The tech this time is William, who is 43057895743759385473% better than the first tech, puts some drops in my eyes and Dr. Pro walks in.  He greets us and asks me a few questions.  The first couple of answers where fairly short, like, “yeah, it is about the same as the last time I was here.”  He then asks me another question, but after I say about five words, he begins talking to William.  I stop talking.  He says go on.  I start again and he starts talking to William again.  He says continue, but after a few words, his mobile goes off and he checks it to see that it is a doctor that he needs info from (Eliz later told me that he had an emergency surgery scheduled at 10.30am, so it probably had to do with that.)  He hands the phone to William to get the info and asks me to put my head in the machine so he can have a look.  Let’s face it, I really didn’t have anything good to say, and even if I did, I don’t think he was really interested.  He has a look and then takes the IOP of each eye (13 in the right, 8 in the left.)  William has finished on the phone and Dr. Pro starts giving him the info of what he saw in my eyes (besides the blank stare back.)

Dr. Pro then tells me things on the glaucoma side look good.  He says he believes the vision issues I’m having aren’t glaucoma related and it is best for Dr. Ayres (cornea) and Dr. Garg (retina) to figure out was the issue is.  News flash, no one seems to know why my vision came around for those ten days in April after the surgery and then went bye-bye.  Not me, my doctors, or even that voodoo woman named Phyllis.  We shake hands and head to a different reception desk to checkout.

We get to the desk and the receptionist is finishing up with a woman.  When she is done, she says to us, “I’ll be right with you, I’ve just have to send a fax to a doctor.”  Her tone made me believe she meant: You’re done, you’re not as important as a doctor, so just wait a few minutes.  After about five minutes, she starts to help us, but notices the lady before us is still there.  The receptionist asks her if she had a question.  The lady says she was just waiting for an appointment card for her next visit.  The receptionist apologized for not giving her one and writes one out for her.  Now it is our turn.  She reads the form Eliz handed her and says, “You’ll have to call back on Monday.  The doctor wants you to have a Fields test and I can’t schedule that now.”  So, we wasted our time standing there waiting.

Let’s recap:  We wasted nearly three hours (an hour and a half at Wills, plus travel time to and from) on this appointment and wasted over $43 (the $20 copay, the $5 credit we’ll supposedly get for next time, and over $18 for parking — that is with validation, otherwise it would have been $22.)  I told Jake the night before it was going to be a waste of time.  I only wish I could use these Nostradamus powers to select the correct Powerball numbers.

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Almost Unbelievable…

As you’ve read here over the past seven weeks, I’ve been pretty frustrated and miserable.  On the way to my my cornea specialist, Eliz and I were talking about what I was planning on discussing with Dr. Ayres.  I was going to tell him how tired I was running back and forth to all these eye specialists who couldn’t really figure out why my vision had deteriorated to 20/200 (close to my pre-surgery acuity) after I was able to read most of the 20/100 line a week after the surgery.  I was also going to ask Dr. Ayres to ease off some of the drops.  I was up to about 8 to 10 per day, and after some, my vision was blurry for varying lengths of time, reducing my vision further.

So we’re driving down Lancaster Ave. after dropping Jane at softball camp at Villanova and we turn on Preston and Steve on WMMR (Eliz is a huge fan.)  They were talking about some guy who was trying to get into the Guinness Book of Records by singing the lowest note ever.  The discussion somehow turned to the Oak Ridge Boys and their hit Elvira (warning, don’t click the link, you won’t be able to get the song out of your head…)  They were talking about how deep one of the members of the band could sing, were making fun of the song and then mentioning that one of the members was from Collingswood, NJ (it is in southern New Jersey.)  I was laughing so hard I was crying.  Tears were streaming down my face for over five minutes.  When they finally stopped, we were just passing St. Joe’s on City Ave.  I grabbed a tissue and wiped my eyes and began to look around.  Things looked clearer to me.  We stopped at a red light and I looked at the trees and buildings and told Eliz that things looked better than before the tears flowed.

We were only a minute or two away (his office is on Presidential Blvd. in the Pagoda Building, just off City Ave.)  We sat in the car for a minute or two since we were early.  I looked at the building and the trees and things still looked better.  Once we walked in, things were still tough to see inside.  We took the elevator to his office and signed in.  Eliz grabbed a magazine and started looking through it.  I glanced at the front cover, but couldn’t make out the title, so I thought my vision was returning to its current normal.  After a few minutes, I was called back to Pod 3 (which I suggested on multiple occasions to rename EyePod 3.)  Tia was the name of the tech and she questioned me about what meds I’ve been taking and how my vision was doing.  Then she turned on the eye chart.  E looked clearer.  So did SL.  I was then able to make out the L first, then the P in the OPLB line.  (As I’ve mentioned before, I know all the lines down to DAO6, the 20/60 line, so I’m never 100% sure I’m actually seeing them.)  There is no alternative 20/100 line other then the OPLB line, like there are for the 20/80 line and better, so I was given credit for seeing the P and the L.  With the pinholes, I tried both the CAV8 (20/80) line and its numerical alternative without being able to read anything.

Dr. Ayres came in a few minutes later and I told him about what happened on the way into the appointment.  He then took a look and had me blink twice.  He noticed that my eye was losing the tear film in about five seconds (he didn’t use a stopwatch, instead opting for the technical Philadelphia, as in one Philadelphia, two Philadelphia, etc.  We always used Mississippi when we played football as kids.  You could blitz on five Mississippi…)  He then explained to Eliz and I that 10 seconds is the norm for the tear film to last after blinking.  I’m not surprised that my eyes aren’t normal.  Never have been, never will be.  He also mentioned that once the eye begins to dry, the visual acuity begins to fall.  He gave me more drops, over the counter lubricating drops for during the day, and a prescription for a drop to use at bedtime.  It is an antibiotic that evidently is somewhat thick.  It is used for infections in the eye, but I was instructed to close my eye and massage it onto the edge of my upper and lower lids.  I’ll let you know how that goes in a few days since I haven’t used it yet.  Dr. Ayres also took me off one of the steroid drops (two less drops per day) and Muro 128 (four times per day.)

Can it be that at least part of my current eye issues were discovered because of Preston and Steve?  Yup!  So, thank you Preston and Steve (and Kathy, Casey, Nick, Marisa, the Oak Ridge Boys, and that guy trying to sing the lowest note!)  Now I just have to hope that the new drop works.  Wish me luck (again…)

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Glaucoma Study

My latest Fields

My latest Fields Test done at Wills Eye during a glaucoma study.

Over the past year, Eliz and I have taken part in a glaucoma study at Wills Eye in Philadelphia.  I was asked if I’d be willing to participate and when they realized that Eliz would be bringing to each session, she was asked to participate as part of the control group.  Fortunately, Eliz doesn’t have glaucoma!  The study included a (torturous) visual fields test, IOP and vision  check, a questionnaire on how glaucoma affects your life, an obstacle course, spotting different size boxes around a room, dialing a “telephone,” reading in varying lighting conditions, spotting objects moving on a computer screen, and, my favorite, matching socks.  It takes about three hours to complete and we had to go in four times within a year.  Last Thursday (17 Sep) was our last session.

We were compensated $20 (total) and had our parking validated at each visit.  At the end of the study, we are each to receive $160 (which is due in the mail in the next week or two.)  To get paid to get a fields test is AWESOME!  It’s like getting paid to be water boarded…  The fields test is so exhausting to me, because I have trouble just looking at the dot in the center of the machine.  I only get the test done on my left eye, as my right eye can barely tell light from dark (I can tell light is shining on it by waving my hand between my eye and the light source, about 10 inches from my eye.  If I see a shadow, I know there’s light and six more weeks of winter.  Of course, I could always just open my left eye, but I like to know what I can see with the right eye.)  For those that haven’t taken a visual fields test, as you look at the center dot, a series of lights, ranging in size and intensity, flash all around the inside of the machine, one flash at a time.  You have button in your hand that you press if you see the light.  It’s kind of like being on a game show.  I would hope that I would hit the button more if I were on a game show…  I’ve posted my my fields test from that day so you can see the results, they weren’t pretty.

One of my concerns that day was the eye chart.  I could only see the big E at the top with my left eye (the “good” eye.)  That is the 20/400 line.  I was able to see the E on the 20/200 line, but only with the pinholes.  I have noticed over the past few months that my vision seemed to be slipping (again.)  I have also noticed some double vision, especially on lighter objects with a dark background.  This is extremely frustrating, because it has really effected my reading on the computer.  I have a local ophthalmologist appointment next week, a glaucoma specialist appointment the following week, and my cornea specialist appointment in mid-October.  Hopefully, one of them will be able to find the problem and fix it (though I’ve been waiting my whole life to have my problem fixed, so I won’t hold my breath.)

I was asked at the glaucoma study if I would be interested in participating in more studies.  I told them I’d be happy to so.  It upsets me when I see a young kid at Wills Eye to see a glaucoma specialist.  I know what is ahead for them and it isn’t fun.  I also know what you are now thinking, ‘With technology and stem cell research, they’ll be able to take care of that problem…’  I hope so, but pardon me for not being as optimistic.  Those same things have been said to me over the years, from the time I was in middle school to the present day by friends, teachers, coworkers, employees, and others.  I’m still waiting.

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