You Are Not Alone

So there I was 62 years old, fat, dumb, and happy and getting close enough to retirement to sniff it.

Eight years ago I simply went to an optometrist for new glasses, I had not had an eye exam or new glasses in several years. Upon completion of the eye exam using fancy machines, the optometrist had concerns I wasn’t expecting.

Did I have drusen?

He told me he saw some shadows in the macula that could be what is called drusen and he wanted to refer me to a retina specialist. This was quite disturbing but at the time I didn’t know enough to be scared, that came later as I will soon describe to you. I waited about a week for my appointment with the RS and while I waited, I googled drusen, macula, and other eye-related issues. (I mean after all Google is our friend, right?) During my web searches, I discovered AMD and hoped I didn’t have this!

An appointment with the retina specialist

The day finally arrived for my appointment with the RS and off I went. I was quite nervous and the hour-plus wait to see the doctor did not help. In fact, I never saw the doctor who had his name on the building (later I did, but I’ll get to that). Instead, I saw one of his ‘fellows,' I guess that’s short for fellowship, read "new guy” or doctor-in-training.

Diagnosed with macular degeneration

The “fellow” did some tests and went out of the room and when he returned, he was all chipper and happy acting and said, “Yep! You have it! Wet AMD in the right eye and dry in the left. Please coordinate with the nurse for a follow-on appointment for your first injection." And BAM! He was out the door like a shot! Boy, did I feel alone, confused and scared! I made a follow-on appointment and left. I stewed and simmered over my new plight, not really knowing what to do or who to talk to. I went home and further scared myself half to death on the internet, let’s just say, I was not having a good day!

Finding the right retina specialist

I will fast forward a year now and share what ensued. I went back and during the year probably had 5 or so injections, at that time they were using Avastin. It would temporarily halt the leak or bleed but had to be repeated throughout the year. During this first year, I had injections by “fellows” and even by the doctor with his name on the door. He was deft, skilled and professional, but he lacked empathy. I found out it really does matter who gives you the shot. One time, a ‘fellow” (read new guy) really did hurt me! He jabbed the needle into my eye so hard I literally almost jumped out of the exam chair and scared both of us! That was it for me at this practice. I then proceeded to wander the vast expanse of retinal practices and was rewarded by finally finding a truly great doctor. I have more to share on my experiences through these past 8 years but won’t bore you by getting too windy.

Finding information outside of your doctor

That first year in my now 8-year journey left me pondering, "Why is it so hard for the laymen to determine the difference between a mediocre, good, or excellent doctor?" It’s a real labyrinth almost a maze it seems. This draws me to close this particular post by saying, I have discovered many things, in the form of people, websites (this one in particular) and resources that can help ease fears and answer questions for the people recently diagnosed. You are not alone! There is a lot of help out there and I’m glad you found this one!

Were you recently diagnosed with macular degeneration? What was your experience like and did/do you still struggle with your diagnosis?