My Experience with Cataract Surgery

Two years ago my retinal specialist noted on a regular checkup that I had developed cataracts on both eyes. The cataracts were sitting right in the center of my only remaining window of vision. They were the type of cataracts that are commonly found in RP patients. About 50% of patients with RP develop them.

My doctor explained that post sub-capsular cataracts or PSCs are located on the backside of the natural lens and the pouch which holds the lens and they tend to grow quickly. She recommended they be monitored until they caused a significant change in my vision.

It was not long before I was having trouble with close up tasks such as reading and the cataracts began to  affect my visual function.  Everything appeared dull and clouded as if I had blobs of Vaseline in my eyes.  My biggest struggles were reading the computer and my iPhone which I depend on heavily and spending time outside in the sunshine.  I decided to talk to the doctor about cataract surgery.

Cataracts in and of themselves are not a big worry and the surgery is one of the most common and successful procedures done today. But when they appear along with RP or other eye diseases, it is more complicated.  Since patients with advanced RP depend on their remaining central vision, there is much to be gained from removing cataracts. But no surgery is without risks.  As a nurse, I knew it was important to learn all I could about cataract surgery and consider my options carefully. I began to do a bit of research.

Considering the Risks

I wanted to know what the risks were of losing the rest of my vision and whether I could expect improvement in my vision if I had the surgery.  I visited VisionAware’s section on cataracts and the cataract message board. Then I talked to my optometrist and low vision specialist.  We discussed my eye history, and my hyper-myopia and how that may increase risks. In the end, he said he believed I had more to gain than to lose in doing the surgery. He referred me to a cataract surgeon who was well-known to him and who seemed best suited to my case.

By the time I met with the surgeon for a consult, I was well-informed of the risks of this procedure. My goal was to preserve my ability to read my computer and iPhone with my low vision devices for as long as possible. The surgeon examined me, ran tests and took measurements. He declared that he believed I “was a good candidate for the surgery and would do well.” My surgeries were scheduled two weeks apart. I was sent home with a packet of instructions and prescriptions for eye drops to be started the day before surgery.

The Morning of Cataract Surgery

The morning of my first procedure, I felt nervous about having someone cut on my eye, but I was also confident in my doctors and in my decision. They all discussed my case and had my best interest in mind. There was a lot of discussion about which intraocular lenses would be best and what the prescription correction should be.

Choosing the Right Intraocular Lenses

Previously, I wore contact lenses that corrected my vision to an intermediate focal point, allowing my low vision devices to work well for me. When I want full correction for distance, I add a pair of glasses to complete my prescription. To read or do close up tasks, I use prism magnifying glasses. With just my contacts, I am able to work on the computer (with Zoomtext) comfortably and do most daily tasks without any glasses. This has worked very well for me. Based on the pre-op testing, intraocular lenses that correct astigmatism in the same prescription as my contact lenses were chosen for the best vision outcome. I did have to pay out of pocket for this type of lens (toric) as it was not covered by my insurance.

The procedure went smoothly and was over quickly. I was given light sedation and was aware of a few sensations, but had no pain. At home that evening, my eye was scratchy and my vision was very blurry. By morning, it was comfortable and my vision was already clearing up. I visited my local eye doctor the next day for my first post-op check. The lens was in good position. There was some swelling which was to be expected and I did have an increase in my eye pressure. So the doctor said he would monitor that.

Following Post-op Instructions

Eye Shields and Eye Drops

Eye Shields and Eye Drops

The next two weeks, I followed the post-op instructions vigilantly which included  administering several eye drops on a schedule, wearing eye shields to protect the eye,  and limiting physical activities as instructed. I had several more visits to the doctor for eye pressure checks. I was told this can happen due to swelling which blocks the drainage system in the eye. It is usually temporary and should resolve with healing and the medications.

On the morning of my second eye surgery, my eye pressure was too high in both eyes. I was immediately given eye drops to bring it down. The procedure went without a hitch, just like the first one. Within a couple of days, I was reveling in how much clearer my central vision became. I was so pleased that the gauzy film was gone, the glare improved and colors were crisper. With both eyes now corrected and working together, I was once again able to read my computer and iPhone.  A few weeks after surgery, I was reading 2-3 additional lines on the charts, which was very exciting.

It has been three months since my cataracts were removed. My intraocular pressures are still elevated and I am taking glaucoma eye drops. The doctors say I am what they call a “steroid responder” and this is why my pressures shot up.  They believe the pressure problem will resolve itself with time and I will be able to come off the eye drops. Of course, this was an unexpected outcome and there is cause for concern. But I am very happy with the improvement in my vision.  I feel as if I have dialed back time and got some vision back! And when you do not have much to start with, every bit of improvement can make a difference.

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Have You Heard About NVDA and Computers For the Blind?

I have been surviving on the computer with Zoomtext for the last 12 years. It has been wonderful to have such access. I actually started with “Bigshot”, a precursor to Zoomtext, and it allowed me to continue my job for years. But alas, my vision continues to change and technology changes even faster! I now have cataracts that affect the last bit of vision I have to read. I am making plans to have them removed and hoping to clear up my central vision. But at the same time, I have been thinking about making the transition to using a screen reader rather than a screen magnifier program so I can continue to use a computer.

I understand that the JAWS screen reader is difficult to learn and quite expensive. I am intimidated by it and dread learning it! Then there is Windows Eyes which I hear has some issues and seems to have less tech support available. In some cases, the state Vocational Rehab agencies will purchase access software and provide training for users. But in my state, there is a 2-3 year wait for these services. Many blind and visually impaired people cannot afford these expensive products on their own and it is sad how companies seem to exploit the disabled. So many blind and visually impaired people do not have access to a computer, social media, on-line shopping and the wealth of internet information.

That is why I am so excited about NVDA-nonvisual desktop access! This is a free screen reader that is compatible with Windows and available for download. Here is an exerpt of the story of how it was developed and made available for all from the website http://www.nvaccess.org/ :

Michael Curran and James Teh met as children on a music camp for the blind, where they realised they shared a strong interest in computers. Several years later they decided to join forces to help improve the accessibility of computers for blind and vision impaired people.

For blind people to use a computer, they need a screen reader which reads the text on the screen in a synthetic voice or with a braille display. But in many cases screen reading software costs more than the computer itself. In the past this has left computers inaccessible to millions of blind people around the world. This is a critical problem, because without computers, access to education and employment is severely limited, not to mention everyday functions such as online banking, shopping and news.

In April 2006 Michael began to develop a free screen reader called NVDA (NonVisual Desktop Access) for use with computers running on Windows. He invited James, who had recently completed his IT degree, to develop the software with him.

Together these two fully blind men founded the not-for-profit organisation NV Access to support the development of the NVDA screen reader. Before too long they were able to work full-time on the project thanks to a series of corporate grants and individual donations.

NVDA has been translated by volunteers into more than 43 languages, and been used by people in more than 120 countries. It has also won multiple awards.

NVDA is open source software, which means the code is accessible to anyone. This enables translators and developers around the world to continually contribute to its expansion and improvement.

Through this work, Michael and James have gained extensive expertise in software accessibility. They have also fostered relationships with companies such as Mozilla, Microsoft, IBM, Adobe and Yahoo! and have contributed to the accessibility of their respective products.

NV Access is based in South East Queensland, Australia.

Yay for these lads who have made computers more accessible with the NVDA screen reader! They have created tutorials to make NVDA user friendly. Check out these links:

http://nvda.wikispaces.com/

https://www.youtube.com/watch?v=qOQ7zELFmLE

And did you know about Computers for the Blind? It is a program that refurbishes desktop and laptop computers and then makes them available to people who are visually challenged for a nominal fee. The computers come preloaded with either magnification software or NVDA screen readers, monitors, keyboards and more. The mission of Computers for the Blind (CFTB) is to open the world of information technology to persons who are blind or visually impaired by providing computer equipment, software and training. Check out their site at: http://www.computersfortheblind.net/index-2.html or call 214.340.6328 to learn more.

I hope these resources are helpful to you or someone you know. Pass the information on…

 

More Women Than Men Have Vision Loss

We all know men are from Mars and women are from Venus. But you may be surprised to learn there are gender differences when it comes to eye health. As a nurse and a woman with a visual impairment, I was surprised to learn there are more women than men who are blind or visually impaired. I have a degenerative eye disease called Retinitis Pigmentosa and have been legally blind since 1994. Though this condition is genetic and untreatable, there are many steps I take to preserve and protect my remaining vision. And I want to urge other women to take good care of their eyes so they will last a lifetime.

 
Women’s Eye Health Task Force reports that nearly two-thirds of all visually impaired and blind people in the world are women. More women than men suffer from eye diseases such as cataracts and macular degeneration. Research has shown there are gender specific symptoms, conditions and risks associated with vision loss. April is Women’s Eye Health and Safety Month. It is a good time to learn about women’s eye health issues.

 
Prevent Blindness America or PBA, reports similar figures for the U.S.; 66 percent of people who are blind or visually impaired are women. Women have more risk factors and thus, higher rates of vision loss than men. To make matters worse, a recent survey done by PBA revealed that only 9 percent of women realize these troubling facts. Many blinding eye diseases can be treated to prevent blindness and almost all eye injuries can be prevented. Therefore, women need to know what their risks are and learn ways to preserve their vision. PBA launched a new program called See Jane See: Women’s Healthy Eyes Now to educate women on their unique eye health needs.

 
Women are more likely to lose their vision for several reasons:
1. They live longer than men. Many eye diseases are age-related. As women live longer than men, they are more likely to be affected by conditions such as cataracts, macular degeneration and diabetic retinopathy. The rates of these diseases are increasing as the population ages, especially among women.
2. Some eye diseases are intrinsically more prevalent among women. For instance, dry eye syndrome which is believed to be linked to hormones is two to three times more common in women than men. Hormonal changes across the life span of a woman, from pregnancy to post-menopause, can influence vision changes. Women also have higher rates of autoimmune diseases such as lupus, rheumatoid arthritis, and multiple sclerosis. These conditions often have serious effects on the eyes, causing vision loss.
3. Social and economic factors can limit the frequency, quality and availability of health care for women. Since blindness and vision impairment can be prevented through early detection and treatment in some eye conditions, access to proper eye health care is believed to influence the greater rates of vision loss among women.
4. There are behavioral and environmental factors that can increase the risk of eye problems, though they are not specific to women. Among them are poor nutrition and obesity which can cause diabetes and subsequent diabetic retinopathy,a leading cause of vision loss. Smoking is also a proven risk factor for eye diseases, including cataracts and macular degeneration.

 
Women can help themselves and their families to lower the risks of vision loss by educating themselves on eye health and following these guidelines:
1. Get a comprehensive, dilated eye exam at age 40 and continue these exams every two years. If you have a family history of an eye condition or have been diagnosed with an eye disease, follow the recommended schedule of your eye doctor. If you experience any vision changes, eye pain, signs of infection, or eye injuries, see an eye doctor right away.
2. Quit smoking! Smoking affects many organs in the body and the damage is irreparable. Heart disease, lung cancer, stroke and other vascular problems have long been known as good reasons to quit smoking. Now you have another: blindness. Talk to your doctor about ways to “kick the habit.”
3. Maintain a healthy body weight. Start a weight loss or management plan to accomplish this goal. A healthy body weight lowers your risk for heart disease, stroke, and diabetes which can all cause loss of vision. Be sure to include daily activity in your plan as this has many health benefits that can protect your vision. Begin with 30 minutes of walking at least three times a week.
4. Eat an eye healthy diet, rich in colorful fruits and vegetables. Foods containing carotenoids and anti-oxidants such as green leafy vegetables, and fruits high in vitamin C, like oranges, strawberries and melons, may protect eye health. Also include foods rich in omega 3s such as nuts, salmon and egg yolks in your diet. There are supplements available to maintain eye health which contain these micro-nutrients, but it is best to eat fresh, whole foods in a variety of colors to get the best nutrition from your diet.
5. Protect your eyes from harmful sun rays. Invest in good quality sunglasses that have full UV-a and UV-b protection. In beach and snow conditions, darker tints are needed to filter out the harmful rays. Wear ball caps or hats with a wide brim for additional protection from scattered rays that reflect off of surfaces. Avoid prolonged periods in the sun without eye protection.
6. Use cosmetics and contact lenses safely. Wash hands and face thoroughly before applying contacts and cosmetics. Keep contact cases, make-up brushes and applicators clean. Throw away eye shadows, eye liners, and mascaras after three months. They expire and can become a breeding ground for bacteria. Do not share makeup. Follow the recommended wearing and cleansing schedules for your type of contacts.
7. Learn proper eye safety and first aid for home, work, and recreational environments. Wear protective eye gear such as goggles when using chemicals, tools, and machinery. It is important to protect the eyes from burns, cuts, and foreign objects that can damage the corneas and other structures of the eye.

Note the sunglasses and ball cap..who cares about "hat-hair??"

Note the sunglasses and ball cap..who cares about “hat-hair??”

My sister Adrianne and I, taking a morning walk in the beautiful Arizona desert

My sister Adrianne and I, taking a morning walk in the beautiful Arizona desert

 

 
Women live very busy lives juggling the demands of jobs, children, their households, and aging parents. We often play the caregiver role, but sometimes neglect our own self-care. You may take your child for eye screenings or an aging parent to the eye doctor, but when did you last have an eye exam yourself? The power to prevent vision loss is in your hands. Awareness and knowledge are the tools you need. Your sight is precious-save it! Treat yourself to an eye exam today.

 
Learn more at:
http://www.visionproblemsus.org
http://www.lighthouse.org/eye-health/womens-eye-health

What Do You See?

I am asked this question many times and it is difficult to answer. Often, I do not know what I see…for what I am looking at does not declare itself readily. The world through my eyes is a shadowy, ill-defined place with uncertain shapes and colors. I am losing the ability to detect light and color in increments as if the world around me is a watercolor scene fading into the canvas. At times, I see nothing, only darkness and danger; other times the world is brilliantly washed in diffuse light and a soft blurriness which is almost beautiful… like a Monet… Almost…

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