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Starting Over: Questions for a New Retinal Specialist

My father's eye specialist abandoned him recently, and it was quite a trauma and upheaval for us.

Abandoned by a healthcare provider

He is 96 and living in residential care in a regional town in Australia. He has wet macular degeneration. His specialist closed her practice in our state and moved back to her main practice north of the border. Evidently, COVID issues made it difficult for her to cross the border weekly.

Unfortunately, we were given very little notice. A text message two weeks before my father’s next appointment was all we received. It was a shock to hear that his appointment was canceled, and the practice in our state was closed. No referral to another doctor was provided. Nothing was said about his medical records, which we later had difficulty obtaining.

Finding a new eye specialist

We felt quite vulnerable at that time, and the search was on to find a doctor who would accept a new elderly patient. I wanted the doctor to understand that my father’s sight is especially important, as he also helps my legally blind mother with her day-to-day activities. Eventually, we did find a new, understanding eye specialist, but it was almost as though we were starting again.

Prepping for the visit

We prepared a list of questions for the doctor because we really wanted to understand where my father was at with his eyes, and what would happen from here on, with his condition, and with his treatment.

As it turned out, the doctor gave us the answers to many of these questions before we asked him, but I felt reassured, having the list in my hand, that we wouldn't forget anything. I knew I needed to advocate for my father and be assertive in order to get answers to the most pressing questions. There were some questions that could be left until the next visit, but they were staying on the list!

Questions

These are the questions we asked on behalf of my father. I have added some that we already knew the answer to, just to make it a more complete and useful list. We needed an answer for each eye.

  • What is my exact diagnosis?
  • If it is macular degeneration, is it wet or dry?
  • If it is dry, what stage is it – early, intermediate or advanced?
  • If it is wet, will I need injections?
  • How long will it be between injections at first?
  • Which medication will you use in the injections and why have you chosen that one? I know there is Avastin, Lucentis, Eylea and more recently, Beovu.
  • With the injections, are you aiming to improve my vision or simply keep it stable?
  • What can I do to slow the progression of the macular degeneration?
  • Do you recommend AREDs2 supplements or other supplements?
  • How do you feel about the 80 mg of zinc in these supplements for me?
  • Do you have any brochures on a recommended diet?
  • Please explain about the Amsler Grid and how you want me to use it. How often should I look at it? What exactly am I looking for on the grid?
  • Between visits, what sort of changes in my sight should bring me back to see you urgently?
  • Will you let me know if any clinical trials come up that may be suitable for me?

Ready for the next visit

I’m sure there are more questions we could have asked, but I didn’t want to overwhelm the doctor, especially at the first visit. I persevered to get the answers we needed for the time being, and other questions will go on a future list.

Everyone’s list will be different, and there was certainly a lot of deciphering to be done of my scribbled answers when we got home. Because of those questions, and the doctor’s considered answers, we certainly came out of that appointment with a clearer picture of the situation, both now and into the future.

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