Wednesday, May 18, 2011

Regaining My Sight

This posting is about my adventures in navigating the world of medical diagnoses and treatment in my advancing (but still pre-Medicare) years. For the past three years, my vision has steadily deteriorated. This has affected my life in many ways. 

At 60 years old, my eyes have problems

 Driving any great distance has become difficult after a few hours so that I no longer travel alone when I drive out-of-state.  After driving for a while, road signs become difficult to read and the field of vision resembles a "white-out".  At night, headlights flare up and blind me, the sides of the road are so dim I fear that a person or animal might be hit by my car if they are in the road.  I drive with my bright headlamps whenever possible.  Other ill effects are the loss of acuity and bright color that have affected my art and photography hobbies. My interest and time spent on reading has diminished as my eyes tire easily.  Driving any great distance has become difficult after a few hours so that I no longer travel alone when I drive out-of-state.  After driving for a while, road signs become difficult to read and the field of vision resembles a "white-out".  At night, headlights flare up and blind me, the sides of the road are so dim I fear that a person or animal might be hit by my car if they are in the road.  I drive with my bright headlamps whenever possible.  Other ill effects are the loss of acuity and bright color that have affected my art and photography hobbies. My interest and time spent on reading has diminished as my eyes tire so easily. 

My mother had Macular Degeneration and eventually went totally blind in the last year of her life.  She lived alone and loved to read, crochet, and play cards and so her quality of life was very much affected by this debilitating disease.

My mother at age 76

 She continued her reading interest through the help of audio books for the blind available from the federal government for free.  She finished over 500 audio books in her last two years of life. Macular degeneration has become a major cause of blindness among the over 60 age group. Currently, 6.5% of adults over age 40 are estimated to have macular degeneration. You can use an Amsler Grid to help you identify and monitor this condition.

Amsler's Grid
I have worn glasses or contact lenses for my near-sightedness since I was about 11 years old.  After I reached 50 years of age, I had to get bifocals as my near sight became worse so that I could not read fine print nor thread a needle.  In 2008, I began to notice a film or curtain-like blurring of my vision, particularly in the morning, gradually clearing during the day.  Naturally, I feared getting macular degeneration so I went to an opthamologist in April, 2008 who diagnosed me with Dry Eye Syndrome and prescribed over-the-counter eye drops to moisten my eyes and suggested I take ICaps, a vitamin and mineral dosage formulated for eye health. There was no evidence of Macular Degeneration and I started using Systane eye drops and ointment and ICaps (both quite expensive). My vision only got worse over the next year and in February, 2009, I went to an optometrist for new glasses.  He informed me that I had scarring on my cornea and that I should see an opthamologist to investigate possible eye diseases and disorders (he wrote down a few possibilities such as Blepharitis and Fuchs' Dystrophy). I saw a new opthamologist at Eye Associates in July, 2009 and gave him the note from the optometrist suggesting possible eye disorders but the new doctor did not discuss these with me.  He confirmed the Dry Eye diagnosis and said I could have a choice of treatments: silicone plugs inserted into my tear ducts or a medicine called Restasis.  He discussed neither option with me regarding their effectiveness nor their costs to me.  I selected Restasis eye drops. The Restasis immediately cleared my vision much more effectively than Systane.  However, I was unprepared for the high cost of this medicine for which there is no generic formulation.  The retail cost was $238 for one month.  Because I have the "privilege" of paying a private medical insurance plan premium of $633 per month, my insurance co-pay for Restasis was a "mere" $75 for one month.  Restasis comes in single use vials for which you use one drop per eye and discard the rest.  You use two vials per day.  Although there was enough medicine in the vial for two doses, the instructions tell you to throw away the unused portion for fear of bacterial infection. In January, 2010 I saw my opthamologist again and told him the cost of Restasis was too high and he inserted the silicone plugs (took 5 seconds: $600 billed to my insurance company, $50 co-pay for me).  He also told me that I could "save" the unused open vial of Restasis by refrigeration in a plastic bag, thereby getting twice as much medicine than before.  (Now he tells me!)

In March, 2010, I sought out my opthamologist again, having no relief to my blurry vision, pain in my eyes, and my vision was getting worse.  He examined my eyes and announced that I had possibly "Fuchs' Dystrophy" and he referred me to a specialist in Fuchs' at Eye Associates for a corneal transplant.  Well, I was sort of in shock.  I didn't know what to ask. I knew nothing about Fuchs.  I figured that I would discuss this diagnosis with the new doctor, Dr. Kenneth Himmel.  The next appointment available was more than 6 months away, in September.  I went home with so many questions and felt like I was blind-sided.  I began to search "Fuchs Dystrophy" on the Internet to answer my questions.  After discovering that this was an autosomal dominant genetic disorder, I wondered if my mother had been misdiagnosed with macular degeneration, or if my father was undiagnosed as he had many of the symptoms I now have but such symptoms were subjugated by his more serious diagnoses of Alzheimer's Disease and Parkinson's Disease.  I found an Online Support Group and began to teach myself about the disorder and it's outcomes. Since Fuchs' is a problem with too much moisture in the cornea, I couldn't understand why I had "Dry Eye" treated by adding moisture.  I called my doctor who explained I had "both" disorders.

In September, 2010, I was examined by Dr. Himmel who said I definitely had Fuchs' Dystrophy as well as mild cataracts in both eyes. My left eye was 20/25 with corrective lenses and he suggested I return in 6 months.  Eventually, I would have to have a corneal transplant, but not yet.  But in January, 2011, I felt my eyes were getting much worse and I scheduled an appointment with Dr. Himmel and found my left eye was now 20/40 corrected.  He suggested that I have cataract surgery followed by a corneal transplant 4-6 weeks later.  He said it was up to me and my comfort level as to when I should have the surgery -  now or later.  Otherwise, he'd see me in 6 months for follow-up.  I left thinking I would wait but after thinking about the surgery, I decided it was better to go ahead rather than to wait until I couldn't see to drive or work at all.  I scheduled the cataract surgery for May 16 and the corneal transplant for June of this year. 


 On Monday, May 16, I had the cataract surgery on my left eye at the Albuquerque Ambulatory Eye Surgery Center where the procedural cost without insurance is apparently about $3600, purportedly the least expensive cataract surgery in town.  I was in at 6:15AM and out by 8:30AM. The procedure was efficient and painless with only a slightly bruised and swollen hand where the IV was.  Insurance co-pay was $350. Co-pay for eye drop prescriptions: $95.  My eye was blurry for a day and a half. Now the vision is crystal clear.  Everyone who has had cataract surgery, including my husband, informed me that it is "a piece of cake" and I would be quite happy with the results.  Eventually, I will get a new eyeglass prescription but I must wait until I have the corneal transplant and recover from that. I'll see Dr. Himmel next week, and we'll discuss my prognosis.

Meanwhile, my neighbor and good friend, Cathy, thoughtfully brought me flowers (smile)  and my husband took very good care supporting me during the whole routine (love).  Good medicine to be sure!

My friend, Cathy




















I hope all goes as well for the future surgeries on my eyes.  The corneal transplant is a lot more involved and riskier.  For now, for the first time in three years, I'm hopeful that I will recover my full vision.   
Me and my youngest daughter, Mary, on Mother's Day, 2011
Post Script: After seeing my doctor May 24th for follow-up on the cataract surgery, we decided to postpone the corneal transplant surgery.  My vision (corrected) now is 20/40 in the left eye and 20/25 in the right eye.  I think I can live with that for a while.  We'll evaluate the vision in June, and see if we proceed with cataract surgery in the right eye or the corneal transplant in the left eye in the near future.

P.S.S. Saw my doctor December 5, 2011 and am now scheduled for the DSAEK Corneal Transplant for late January, 2012.  I'll keep you posted on the results.

1 comment:

  1. Each and every little part of our body is very important. Without it, would truly be incomplete. And losing the eyesight can really make one's life totally different. I am so thankful that you're now regaining your sight now, and we do hope that you'll get back to normal, soon!

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