My Journey: From Dry to Wet Macular Degeneration - From Despair to Hope

by Jean
(Natick, MA)

Sharing my experiences with macular degeneration with those who "get it" has taken me from despair to hope--and back again--many times as the disease responds to treatment, progresses, or stays the same.


To begin with the present, at age 72, I am currently receiving monthly Lucentis injections in both eyes.

My left eye--after 30+ injections--is holding its own at 20/30, though I also have glaucoma in that eye. My right eye, initially the better eye, has lost central vision and may be too scarred to respond to additional injections. That eye is currently 20/160.

Diagnosed with dry-macular degeneration in both eyes nearly ten years ago, my eyes stayed asymptomatic for about six years, until the left eye became wet.

As I said, it responded to injections. The right eye remained dry with no problems until a year ago and has not responded to treatment.

The first retinal specialist I saw years ago said, "Oh, you have macular degeneration. No big deal. You just won't be able to read or drive." I got rid of him quickly, filed a complaint about him; he is still practicing.

Reading and writing are my life. I have published four books and many, many articles, essays, short stories, and poetry. At present, I am still able to work, though I need bright light and occasional large print online. It is difficult for me to even think of investigating alternative materials.

An avid traveler to and activist in developing countries, I have had to restrict these trips just this year, and am uncertain about any future journeys at this time.

A former tournament tennis player, I also had to stop that activity this year. Some of these restrictions come with age, in any case. And I'm adapting to adapt to these losses.

The worst--and I don't wish to make this piece only complaints--is that my husband died two years ago and I'm alone in dealing with AMD.

Though he was very ill for a long time, his compassion and understanding for my eye condition was an enormous boost to my well-being. Hence, the absolute necessity for those like me who live in isolation with this disease to connect with others.

I still drive, live in my own home, and work. As a substitute for tennis exercise, I got a terrific rescue dog with a great sense of humor and upbeat disposition. But, like all of us with this condition, I worry about additional losses in vision.

Thank you for this site. It reminds me that I am not alone.

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Oct 19, 2011
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Macular Degeneration injections
by: Anonymous

I can't believe you have had to have that many injections. You are getting them monthly?

I have had one in the right eye and 2 in the left and another is due in the left in a week or so.

I had no pain after the first one in my right eye but have terrible pain for several hours after the two in my left eye.

They are giving me Avastin. I hope I don't have to get them as often as you do. My heart goes out to you for that.

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Age Related Macular Degeneration--Dry to Wet in 18 Months

by Bert's Daughter
(Wisconsin)

It was Sept. of '07 when my dry macular was diagnosed. I had just turned 67 and it was not the news I wanted to hear.

I took all the preventive measures--avoiding sun exposure, new prescription sunglasses, AREDS Preservision and more focus on eating healthy.My father had age related macular degeneration (AMD) so this was the luck of the draw.

Eighteen months later when we were looking for new shingles for our house it was apparent there was a problem as all the colors looked green and I noted some distortion in the left eye using the Amsler Grid.

My ophthalmologist immediately diagnosed wet ARMD and referred me to a retina doctor.

In April of '09 injections of Avastin, a series of 3, 6 weeks apart were started. The vision held in that eye at 20/40 until October when new bleeding occurred. Another series of injections were started and after the 2nd a minor inflammatory reaction occurred in the eye.

This was thought to not be related to the injections however after #3 injection a massive reaction occurred requiring an emergency vitrectomy.

Lab reports did not show any bacteria so the reaction was believed to be to Avastin. Vision following the surgery was 20/70 but the eye was still bleeding. In Feb. and June, cold laser with Visudyn was used with not the desired result.

In October, the option was purposed to try Lucentis as a last effort after more research had indicated this formulation was hopefully enough different from the Avastin (both similar products of the same drug company but Lucentis, specifically developed for the eye.)

Lucentis was used for a series of 3, a month apart and the eye stabilized sufficiently to have a needed cataract removed on that eye in May.

Post-cataract there was still a bubble of fluid that needed to be resolved and another series of Lucentis were completed. Vision on that eye is now 20/200 and the retina appears to be scarred over with no more bleeding.

Meantime, in December of 2010, I noted some white spots in the vision of the right eye. OCT and radiography of that eye revealed the beginning of wet ARMD and a series of 3 Lucentis injections has that eye in a "dry" state since Feb. of 2011 with 20/20 vision.

The good news is that I'm still able to read and drive. Other than adaptations to bring more light into my life I'm not impaired with any daily living. Watching daily for any vision changes is part of my daily routine and I'm thankful for each day I can enjoy our world.

WebRn Macular Degeneration has provided good resources on reading about the condition and how to live with it. I have recommended the Website to everyone else I know who is facing the challenges of ARMD. Educate yourself sooner rather than later!

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MY STORY WITH WET AND DRY MACULAR DEGENERATION

by Lee Alex
(Tucson AZ USA )

When I was diagnosed with Macular Degeneration I did not even know what the word meant. My ophthalmologist did not explain to me about macular degeneration or tell me to take some eye vitamins.

It was years later when I was starting to lose my vision I made an appointment with a retina specialist and was told I had one wet and one dry eye.

Now I receive an injection at least once a month in my wet eye. It was stupid of me not to question the doctor and his stupidity not to warn me that one day I would lose some of my vision.

I suggest you talk to your doctor and ask questions. Today my vision is not what it used to be but thank goodness for the injections they have really helped me and with the support of lots of light and magnifiers I do just fine.

REPLY

Thanks Lee for sharing your story. Here is a list of questions to ask your doctor.

Questions for Your Doctor

Leslie Degner, RN, BSN

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