A Letter to My Retina Specialist

By Brown Eyed Girl

3 min read

There are things I would like to tell my retina specialist face-to-face. He’s too busy to hear most of these things, so I’ve written him this letter.

I know you gave up a lot

Dear Doctor,

Thank you for looking after my eyes and my dry macular degeneration.

I know you gave up a lot to become a doctor. You probably became an ophthalmologist first, then went on to become a retina specialist.

I appreciate all the training you’ve done. I know you have possibly completed more than 1 university degree and further postgraduate studies. I understand that you have worked at various eye hospitals, sometimes with very long, late shifts, and for not much pay in the beginning. You’ve possibly dragged your family around the world to get international experience. And keeping up with the latest research is time-consuming.

Some things you should know about me

Your time is valuable – I recognize that. I know you want to see as many patients as possible in a day, and I think you really want to help people.

But there are some things I’d like you to know about me, too.

Because I know you are busy, I try to arrive early and never keep you waiting. I’d rather be an hour early than 5 minutes late (I think this is a genetic trait I inherited from my mother, but it has stood me in good stead over the years!).

I would like you to realise that I am nervous. I know today I will eventually leave your office with good news or bad news. All the time I am waiting, I am wondering how I will feel as I leave. By the time I get to see you, I’m often scared. I may have been scared and worried for weeks.

Travel to a doctor's office can be difficult

Please realise that it takes me nearly all day to get here and to get home again on public transport. If I seem a bit stressed, it’s not only because I’m seeing you today. It’s because I had to walk, catch a train, change trains, catch a tram, and then walk again to get to you. And, obviously, I’ll have to do the same in reverse to get home.

I’m not complaining. It’s even more difficult for other people. Some people have come from out of town, and they may need to stay overnight somewhere. I see people in your waiting room in wheelchairs or on walking frames, and I realise I’m not too badly off. But please understand if I look a little flustered after my journey.

Please don't short-change me on time

I changed doctors to come to you, so I have high hopes.

And this is what I hope for from you:

Please don’t overbook, and please give me the time I need when it’s my turn. Don’t roll your eyes when you spy my list of questions. I’ve thought about these questions carefully and researched what I could. I know I’m not here for a chat – I really want to know the answers to these questions. Sometimes you will have emergencies to attend to, but please don’t short-change me on time.

I would like you to listen and respect my opinion when I tell you I have seen changes in my vision, even if you can’t see them on the OCT. I want you to know about my squiggles and blank spots.

You may know there is nothing more you can do for me at that particular visit, but I would still like a few moments of your time. I don’t just want to see your assistant doctor.

Inform me of new research and treatments

I would like you to mention to me if you are aware of any new and upcoming treatments. Even though you may not be using them yet, it gives me a chance to research and think about what might be available in the future.

I would like you to be aware of some complementary supplements and possible treatments such as saffron, curcumin, or red light therapy, which may be of benefit. I would appreciate a comment from you, and for you not to dismiss them out of hand.

I hope we can form a partnership that works on respect and understanding that goes both ways.

Your patient,

Wendy

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Blue Lady Member
Hello Brown Eyed Girl, I didn't know it was so hard to get to your Retinal Specialist! Where I live I can get the community bus which serves seniors and disabled, right to my door! This is a service for medical appts. only. Do you have that where you live? And it seems that there are too many patients for Doctors to handle now! Is it that we are "boomers" most of us? We're all getting older and a lot of us living older than previous generations ever did, so even though I know of no one in my family with mCMV, if they had lived long enough they might of gotten it. Is your Doctor so arrogant? I wonder with so many patients that we begin to look like specimens? I think patients (and their doctors too) would do better if there were advocates there in the office to help give support to patients and help doctors as a result. It must be strain on everyone. I would hope that my RS keep up with new treatments of course. What happened to previous generations without any treatments at all? As far as Red Light therapy, I read that it may prevent mCNV if used in children.
1. Brown Eyed Girl Moderator
 <inline-mention username="Blue Lady" user-id="8884115"/> community buses here only take people locally. My journey "into town" as we say, is far too long for that. I'm not really complaining. I can do it. But if this specialist does my cataracts in due course, I think I'll stay overnight at a hotel, because the trip two days in a row would be a bit much. Someone in this community travels all day down from the mountains in Alaska for their eye injection. My journey is nothing compared to that! Wendy, Patient Leader.
Blue Lady Member
That's really rough! We also have free transportation here from our Health Insurance companies that will take people to appointments out of town. A friend had to go quite a ways to the only Radiation Center in this Tri- county area. A lot of older people cannot drive. I don't know what I would do if I had to have to go so far and stay overnight. I guess Dr.s have their own way of doing things regardless. I do not feel like my condition has improved, even though their tests say that I did. (I may have gained some letters on the chart) Everything else is the same, and I would like to have my medication changed to Lucentis which I believe is the only FDA approved treatment for my condition. I will inquire next month with my Dr., it's all up to her I guess. In the meantime I have anxiety about the prospect of this happening to my other eye.
1. Brown Eyed Girl Moderator
 <inline-mention username="Blue Lady" user-id="8884115"/> I can understand your anxiety. Many of us worry about our other eye if one is better than the other, or not affected. I hope you can get Lucentis if your doctor thinks it will be better. I find those eye charts a bit subjective. I squint and guess a bit, and sometimes I guess correctly. I shouldn't do that! I have top private health insurance, but as far as I know, in Australia, noone is covered for trips to any medical appointments except veterans. I try to make sure now that any new doctors I take on are close to home. Wendy, Patient Leader.
Leelars Member
Wendy - this is such a well thought out and very important letter -- thank you for taking the time to think it - write it - post it!! You are terrific! You covered it all -- for all of us. 😀 Muchos Gracias...
1. Brown Eyed Girl Moderator
 <inline-mention username="Leelars" user-id="6759874"/> thank you so much. I appreciate your comment. Wendy, Patient Leader.