Help Me Keep My Sight

I am losing my sight.  I no longer drive at night and I need to use the magnification tools on my work and personal computers. I'm already on page two as I write this. I have developed a condition that I shouldn’t have had to worry about for another fifteen years or so.  As most of you know, in 2016 I had an aggresive breast cancer and needed strong chemo drugs to save my life. These drugs also had strong side effects one of which has accelerated the growth of cataracts in both eyes.  

I was referred to Pacific Cataract & Laser (PCL) in Bellevue, Washington.  They have multiple offices in WA as well as Oregon, Alaska, Idaho and New Mexico.  After my initial consult they said I would receive a call from the surgical coordinator.  I got the call but it was the doctor.  He asked if it was possible for me to travel to Mesa, Arizona to see a surgeon who they (all of PCL) thought had more knowledge and experience with patients like me.  My first thought was of grocery check-out lines. I always pick the lines where they just stop moving – for whatever reason: coupons, price checks, cashier changes, the first three credit cards didn’t work and they're pulling out the fun stuff and paring down to the essentials - those lines. Meanwhile, all the other lines are moving and people that stepped in line the same time as me are already home putting their groceries away.  Why can't I choose the normal lines that keep moving and why can't I have normal eyes like everyone else?  Damn eyeballs! I said: “Yes, I can travel to Arizona to see the specialist.”  As stories go, that was just the beginning.

My chart notes etc. were forwarded to Dr. Warren Hill in AZ.   After a couple weeks I called his office to set up an appointment and I was transferred to his Physician Assistant. She told me that Dr. Hill didn’t think he could do the surgery either . . . however, he thought I should talk to Dr. Michael Snyder in Ohio at the Cincinnati Eye Institute (CEI).  “Yes, I can travel to Ohio.”

BEFORE seeing Dr. Snyder I had a phone consultation/3rd opinion with another specialist in Florida, Dr. William Trattler who said at the start of our call: "I understand why you're going out of state for surgery".  He knew Dr. Snyder and concurred with me going to CEI in Ohio.

My info was forwarded to CEI. Three weeks later Dr. Snyder called me.  He started by asking me how much I understood about my eyes and why so many surgeons didn’t want to operate on me.  I learned how unique my eyes are. He said, “I’m confident in my skills to operate on you. I’ve operated on patients like you before.  They present maybe once or twice every four or five years. That’s not what concerns me though. You need a 50+ diopter intraocular lens (IOL) to replace your lens that I will remove. The highest diopter made in the USA is 40. There are three labs in the world that could possibly make your IOLs. The best would be a lab in Germany.  I’ve already talked to them and they believe that they can do it. The hard part about this however. . .” - really? - “. . . is that we need the Food & Drug Administration’s (FDA) approval via Compassionate Use Device Exemption (CUDE) to ask the lab to make them, FDA blessing to have them pass through Customs and authorization for me to implant them into your eyes."   He spent over an hour on the phone with me making sure I understood the medical issues and financial implications if I decided to follow through with this.

The cost to say “Dear FDA” is $3000.00.  This weeds out the not-so-serious requests. That is approximately the cost of normal cataract surgery on one eye.  Gary and I need to fly round-trip to Ohio at least three and maybe four times.  #1 for a consult (which we did on Sept 8, 2017), #2 for surgery on the 1st eye (February 27, 2018) and 30 days later return for post-op on the first surgery and to operate on the 2nd eye. Only one eye can be operated on at a time. The possible 4th trip would be the 30 day post-op on the 2nd eye if I can’t have a Dr. at PCL in WA do this for me (FDA issue).

We took a red-eye for the initial consult and met Dr. Snyder and staff. We spent the night in Cincinatti and flew back the next day.  For each surgery, I’ll need to stay in Ohio one week for post-op care. The hotel room for the 1st surgery that we are staying in has a kitchen and that will help with the cost of meals plus they serve breakfast. There’s also a discount for CEI patients. We’ll also rent a car each trip because that's cheaper than other forms of transportation.  CEI is in Blue Ash a suburb of Cincinnati.

 My insurance will consider coverage only up until the normal fee for cataract surgery (approx. $7000 for both eyes) and only 80% of that amount. Anything incurred beyond that is my out-of-pocket expense.  That fee is: $18,000.00 plus the 20% co-payment.  I am appealing this and requesting consideration of the entire surgery due to my unique circumstances but since there is no published material regarding these IOLs with my type of eyes and also because whenever the ‘FDA’  is mentioned that automatically falls in the general exclusions section of my medical policy as Experimental Treatment. I’ll also need general anesthesia,  another not-normal-necessity for routine cataract surgeries.  Because of the general anesthesia, I also need an EKG and a pre-op physical. More extra-ordinary expenses because I'm special.

So what makes me different and my eyes so special? I was born with very small eyes. It is a rare congenital condition called: nanopthalmos.  My eyes are anatomically correct but much smaller than the average eye. There isn’t much room to operate in small eyes and surgeries on small eyes don’t present to surgeons often.  It does affect my vision and I’ve needed strong corrective (coke-bottle-bottom-thick) glasses since I was an infant to see  (see baby picture in 2nd Update) .  Thankfully I’ve been able to tolerate wearing contacts – including wearing two in one eye, one soft and one rigid in the good eye.  As I get older with dry eyes, the wearing time will get shorter until I won't be able to  wear them any longer.  Since my consult in Ohio, I've had laser surgery on both eyes in Washington to relieve the pressure that the growing cataracts are creating.

 We’ve already spent over $20,000.00 and I haven’t even had the 1st surgery.  I’m anticipating the total cost to be somewhere between $25,000 and $30,000.  Everyone has things they need and would like to do with their money. I understand that.  I keep trying to think of something I could do to give back.  I love pancakes and would love to be able to have the biggest  pancake breakfast with all of you.  The only viable things that I’ve come up with so far is to volunteer more and increase my goal of knitting 120 newborn hats this year.  Let me know if there's an organization that you would like me to volunteer with.  If possible, I promise I will follow through.

I know that I am fortunate for all that I have - especially surviving cancer and my attitude about any possible complications or loss of eyesight and impending debt will be managed with the same positive, humorous attitude.  It is hard asking for donations just because as one doctor put it: "You were standing behind the door when God was handing out eyeballs!"  See how early this pattern of standing in the wrong line is?

Thank you for reading this and for the help that you find you are able to give us.  No matter what happens, to my family and friends - I will always SEE you within my heart and love you with all of my heart. To those that I don't know and who have been kind to support me, I hope that we can connect so that I can thank you and that you'll become part of the first group.

Thank you,

Vicki (and Gary too)

 

 You know that white thing on my left eye?  It’s called a dermoid – it’s a raised scar on the surface of my GOOD eye.  A birthmark. You all probably thought this was the bad eye.  Not so.  The right eye is the one with very little – legally blind – vision. Another reason surgeons don't want to operate on me;  I already lost my back-up eye if I lose sight in one eye.  I had to say something about this now because when I tell this story and when I get to the end ( I know you're all sayin', "Merciful LORD finally!") I always get asked, “But what about that white thing on your eye?” It has nothing to do with the cataracts and doesn't impact my sight.