Gratitude in adversity

Life’s hard lessons

Background: Two weeks ago, I was diagnosed with a detached retina. In this post, I will answer some of the questions people have asked me about my experience and share some of the lessons I’ve learned. If possible, I’d like to spare others.

Two Sundays ago, I began having a lot of floaters. Suddenly, my vision got a lot worse, and I experienced what is often described as a curtain coming down over the retina. I went online, read about my symptoms and was sure I’d had a detachment. (I realized, with regret, that if I’d been more knowledgeable about the condition, the problem might have been found earlier, when it was a retinal tear. Then, I might have been treated in the doctor’s office, more simply, with a shorter recovery period.)

I decided that I didn’t want to enter the health care system through the emergency department. First thing Monday morning, I contacted my eye doctor’s office and quickly was seen, diagnosed and given choices of where to have surgery. I chose the UNC Kittner Eye Center and am very glad I did.

Information seeking: I spent time Sunday night learning all I could about the pros and cons of different surgical treatments. Knowing that the condition would have to be dealt with quickly to avoid even greater long-term effects, I tried to find credible meta-analyses and recent reviews of the main procedures. During this period, I applied the lessons I’d learned from studying online communities and from years of research on patient decision making to seek information that would improve my clinical outcomes and reflect my preferences about what matters to me—which every patient should be able to do. Ironically, the President’s Cancer Panel, which I chair, is focusing on connected health, and I wanted to have the presence of mind to remember what I was thinking and doing so that my experience might enhance our report. Information seeking and finding value in a miserable situation were positive coping strategies for me.

By Monday morning, I was aware of the main surgical techniques and their side effects—and I had some strong ideas about my preferences. I wanted to get back to work and working out ASAP and spend a minimum of time lying face down—the dreaded positioning that follows placement of a gas bubble in the eye, one of the main procedures to treat retinal detachment.

It is difficult to choose a doctor in a crisis, so I was grateful that the surgeon who could see me welcomed my participation in the decision-making process and was responsive to my values and preferences. Of course, I am not an eye expert and could not have hoped to understand all that a professional would have known. My surgery was scheduled for Wednesday. On Tuesday, in addition to completing as many things as possible at work, I created a decision table and emailed it to my doctor. She read it and replied by email that night. That’s decision-making nirvana!

Surgery: We went to UNC Hospitals’ Hillsborough, N.C., campus, and it was fabulous—new, easy to navigate, great staff and easy parking. Since I had general anesthesia, I can’t report on much more.

Post-surgery: Recovery from a retinal detachment is a process. It can take months, especially after a vitrectomy, which is what I had. I still see primarily out of one eye. It takes time for the bubble to dissipate and to know whether you’ll regain the vision you had pre-surgery. Remaining in a head-down position for the first five days after surgery and sleeping with one’s head in a foam box for weeks is not fun. I couldn’t do much work at all the first couple days and grew increasingly impatient to get back up to speed. I devoured Audible books, and the iPad really became my EyePad since I could keep my head down and still see it. I used the treadmill on slow speed, with my head tucked to my chest, and was able to maintain some physical activity. So many people from the Gillings School, University and Wellness Center conveyed their concerns and empathy, sent cards and emails, shared personal experiences, offered to help and took me off emails I did not need to know about (a true blessing!). It made me even prouder of and more grateful for our community.

Learning from the experience: Seeing the world through one eye and experiencing diminished depth perception have been humbling, occasionally frightening and enlightening. I’ve gained new empathy for those who live with greatly diminished vision. For example, I did some shopping in a Raleigh grocery store housed in an older building, with narrow aisles and boxes of food all over. Navigating an oversized shopping cart (the only kind they had) down those aisles and trying to turn the cart when I was about to run into someone was frustrating and embarrassing. I was the clumsiest person in the store and came away feeling stressed and with great appreciation for anyone with a disability in a place like that. I spilled three glasses with liquids the first week, because I thought I was placing something on a table and didn’t quite get it right. (Another reason not to drink sugary drinks—my diet Cokes cleaned up easily.) I’m sure there are people I should be seeing and yet am missing. I hope they’ll forgive my seeming rudeness. As a person who treasures independence and autonomy, having to depend on others for rides beyond the tiny arc of home and office is a huge loss of freedom. For myself, I hope that these are short-term obstacles, but I have new respect for people with serious eye problems.

What I’m grateful for: A great, supportive Gillings School and UNC-Chapel Hill community and a wonderful team in the School’s central units; the Internet, without which I would have known much less and felt a greater loss of control; Bernard, Liz, Sara, Dickens and Faulkner; Odette Houghton, MD, my surgeon; UNC Health Care; people who shared their personal stories with positive outcomes; Audible; friends from the Wellness Center and the facility itself; good health other than this, a job that is a mission and I love and a lot more.

Happy Monday.
Barbara

Vocabulary
Q&A

Floaters: Little “cobwebs” or specks that float about in your field of vision.
Retinal detachment: The retina is the light-sensitive layer of tissue that lines the inside of the eye and sends visual messages through the optic nerve to the brain. When the retina detaches, it is lifted or pulled from its normal position. If not promptly treated, retinal detachment can cause permanent vision loss.
Retinal tear or break: Small areas of the retina that are torn can lead to retinal detachment.
Vitrectomy: A tiny incision is made in the sclera (white of the eye) and a small instrument is placed into the eye to remove the vitreous (a gel-like substance that fills the center of the eye and helps the eye maintain a round shape). Gas is injected into the eye to replace the vitreous and reattach the retina by pushing the retina back against the wall of the eye. During the healing process, the eye makes fluid that gradually replaces the gas and fills the eye.

Why does retinal detachment happen? Can it be prevented?
A retinal detachment can occur at any age, but it is more common in people over age 40. It affects more men than women, and more Caucasians than African-Americans.

A retinal detachment is more likely to occur in people with the following risk factors (and I had several of these):

  • Are extremely nearsighted (check)
  • Have had a retinal detachment in the other eye
  • Have a family history of retinal detachment
  • Have had cataract surgery (40 percent of detached retinas occur in people who have had cataract surgery) (check)
  • Have other eye diseases or disorders, such as retinoschisis, uveitis, degenerative myopia, or lattice degeneration
  • Have had an eye injury (check)

What are the symptoms?
Symptoms include a sudden or gradual increase in either the number of floaters, which are little “cobwebs” or specks that float about in your field of vision, and/or light flashes in the eye. Another symptom is the appearance of a curtain over the field of vision. A retinal detachment is a medical emergency. Anyone experiencing these symptoms should see an eye-care professional immediately.

Sources:
“Facts about Retinal Detachment,” National Eye Institute of the National Institutes of Health
“Retinal Detachment Risk Factors,” Mayo Clinic

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