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  • Phyllis Kaplan/Dinobetic

Diabetes Retinopathy

(Written in 2016 when my blog was on blogspot) I don't talk much about complications. Not because I don't

have any or because I'm in denial about them.  I know the complications I have today are a result of something that happened in the past and I can't go back and fix that.  I do the best I can every day.

 I know if a new complication comes up that my health care providers will help me through it.

 Growing up I went to the eye doctor once or twice a year.  Things remained fine until I was 18, sort of.  I was at the Joslin Diabetes Center DCTU (an in-patient program), and the eye doctor said I had papillitis that and since I was 18 I could sign the forms and he could start dong laser immediately.  I was by myself at this point in my stay.  I was scared,. I cried but I did not let him bully me.   He said something to the fact that he was the best, and I remember telling him there were good doctors in NYC as well. Instead I told him I needed to call my parents and we came to  a quick decision not to proceed.  We got a second opinion which lead to a third opinion, both of which said I did not have papillitis.  It was at this time that I met my beloved Dr. Weiss.

Dr. Weiss and his colleague both said my eyes were fine  They stayed fine for another 6 years or so. I was in graduate school when I had my first, second, third, fourth (you get the picture) hemorrhage. I cried at the diagnosis of retinopathy.  Laser?!?  Would I loose my vision??  Would the laser hurt?Would I have to leave school?  What if the laser didn't work?

It was rough.  The first appointment I had for laser, I was so anxious, so in my own head.  Dr. Weiss got me ready - chin on the laser, lens on my eye, ready to go. And I passed out.  Yes, before he started.  We waited a few minutes, I felt better and he set it up again.  And, the same thing happened.  Passed out twice within 10 minutes, from anxiety.  We eventually got through the first session of about 500 burns.

There were some weeks I was at the eye doctor 2x a week; for laser.  Some hemorrhages were bad; some just seemed bad because they were in my center of vision. There were some days when we considered what the  next step would be, but thankfully never got to that point. The laser over time, did the trick.  I believe I asked what ALL of the options were, as it made me feel better to know there were other things to try.

Despite this misery I did not drop of out graduate school.  It was at this time I decided that I wouldn't not let diabetes win.  There were some days I had laser in the late afternoon, put my sunglasses on took the subway back to school and attended evening classes (with my sunglasses still on).  There was only one class I needed an extension on for a term paper  I consider that a win.

Over the years I've had some bleeds, that typically resulted in a bit more laser.  I was always surprised that he could fit more in, as my retinas look like Swiss cheese from all over the laser burns.  I know that Dr. Weiss saved my vision  That's the reason that I continued to seeing him even after I moved to Boston.

About six years or so ago I tired to find a local doctor  and it was a very bad experience.  She looked at my eyes and told me that if I didn't have an injection of Avastin that I'd lose my vision quickly.  She didn't even have my medical records yet; nor did she offer a second opinion.  More tears.  To no surprise, I didn't let her touch my eyes but did call the office to request a copy of my medical record.  It was at this time that she offered a second opinion or for me to come in and talk.  She tired to evade the question for the medical record, and I told her I'd be at the office the next day to collect it.  I knew legally she had to provide it upon my request.  I went back to Dr Weiss, and he did some more laser, and we were status quo for quite some time.

In the middle of last year I decided to try once again to find a local ophthalmologist.  I ended up interviewing 2 doctors.  Both said Dr. Weiss did impressive laser, and both confirmed he saved my vision.  I think I have found a new doctor here in Boston, but it will take some time to adjust

So, there you have it.  The good the bad, the ugly of my life with diabetes complications of the eye. And don't let a doctor ever try to bully you into doing something. If it doesn't seem right, or you have questions, don't proceed.  You are in your right to ask questions, and get another opinion.

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