Macular Degeneration and Me

Low Vision and High Hope

Pepi the Patient

Recently I was asked to give an interview about my experience with Eccentric Viewing, a technique to use your peripheral vision to read.  Leslie Degner from WebRN-MacularDegeneration.com contacted me after reading one of my posts and suggested I do an interview for her newsletter.  Delighted to tell more about EVT and the benefit of learning to ‘see’ this new way my interview can be found by clicking here.

Leslie is a registered nurse with more than 20 years experience with a passion for educating and raising awareness on the causes, symptoms and types of treatment for macular degeneration.  Her website is a treasure-trove of information and resources.   Please take a moment to visit, sign up for her newsletters and take a look at some great ideas to help someone with low vision.

Thanks for the opportunity to share my story with your readers, Leslie.

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4 thoughts on “Pepi the Patient

  1. lincoln cathers on said:

    Hi Pepi, You are one tough gal. Hopefully this EVT will work to help you more fully to enjoy life. All the Best, Linc

    _____

  2. Katharine Emsden on said:

    Hi Pepi. I’ve returned to my regular retinal surgeon after 2nd opinion fouind pucker (in eye not responding to Luc.,Av,Eyl and going down to 20:200 in Feb.). To my surprise regular doctor said he’d do another Lucentis! Then when I said, “what did he think about the pucker?” he dashed out (I decided he had not seen this diagnosis or the angiogram or OCT sent him 28 days earlier). He said he’d do an Avastin, then he changed again and said he’d just treat the other eye (steady at 20:30 several months). I am supposed to go in 4 days for the pucker to get a shot. The 2nd opinion man did not recommend this, so I’m lost.
    How is your vitrectomy healing going? Eyesight? My regular doctor is convinced that there is mac.degen.as well as pucker in R.eye. He says he wants to clear up the mac.and then deal with the pucker. I am worried about his plan. NOTHING has worked on the pucker eye since 2010 when he saw drusen and gave it the first shot. 3 years..I want to focus on the other eye. I am doing Eccentric V. myself, and it does make a difference.
    katharineemsden@hotmail.com

    • WOW! You really have been through a lot. I cannot offer any medical opinion but will relate my experience with the pucker and the diagnosis by the original ophthalmologist – he told me in Jan 2008 that I had wet macular degeneration and started me on almost monthly shots of Lucentis. That went on for 2 years when I decided I wasn’t satisfied with his lack of explanation and his lack of communication. By the way, Lucentis and Avastin are similar drugs and made by the same company. the big difference is the $$$.

      I selected a new ophthalmologist based on someone who was a researcher as well as well-credited. My eye guy is a major stem cell researcher and very well known and respected in his field. After my initial exam and OCT he immediately said I had a macular pucker in the left eye and that the only way to remove the pucker (it’s something like scar tissue growing over the macular which pulls on the macular distorting vision) was to peel the tissue off the macular – a very sensitive operation.

      Never having heard of this I spent quite a bit of time researching and studying. I also contacted patients of his who had this operation. I learned that ophthalmologists performing this operation should have lots of experience.

      The pucker continued to get worse, my vision became more distorted and then finally there was the day when I could only see the top line of the eye chart. Like you, I needed to do everything possible to save what vision I still had and as I age I can expect more loss in the other eye so I went ahead with the vitrectomy.

      My doctor was amazed to find out that I had three layers of tissue growing on the macular, he’d only seen two layers before me. That’s why it’s taking longer to heal. It may take up to a year to really get the vision back

      I have an appointment on Monday and think I will read at least down to the 4th line. I have much more light and my depth perception seems to have improved. When I look at my last OCT in January and compare it to the one in June even a lay person can see the improvement. So I remain hopeful as always.

      That brings me to something I think is important for anyone having an OCT (ocular scan). My former doctor just showed my the print out – since my eyes were dilated and frozen for an injection I could barely see what he was telling me. My current doctor shows me a computerized version of the OCT which can be enlarged and so it’s easy to see.

      So ask to see your OCT and have your doctor explain where the pucker is, how s/he can tell there is wet mac degen under the pucker (should be interesting), bring an advocate who can see the OCT as well.

      And finally, I decided these were my eyes and I had to have implicit faith in my doctor. Without that, I would find someone I could really rely on.

      Here’s one last idea – look at your procedure receipt and see what your insurance company is being billed. Go back to the older ones and see if Macular Pucker was checked off along with other things.

      And Katharine (and everyone else) – don’t be afraid to ask questions or be bullied by anyone including your doctor.

      Again I do not give medical advice but I do believe everyone has the right to a clear diagnosis, a clear and concise plan of action and complete transparency.

      I’ll be thinking of you.

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