Monday, April 27, 2020

You Are Your Best Advocate. Find Your Voice.

When your fears get so big that you feel helpless and hopeless, it is time to take action. You can do something about it. I want to share an experience.  We will call this doctor, Dr. X.

Dr. X (former ophthalmologist/retina specialist) was recommended by my optometrist. Everything with her was unpleasant. I just did not know any better at the time - from the location to the cost of parking, to her personality, to the pain of the injections, to my out-of-pocket cost per injection even after my insurance.

She was in the heart of the Houston Medical Center. It was a very beautiful building and all, but the parking was expensive ($10-$12 per visit), and the traffic was insane.

She had no bedside manner. She was very outspoken and very critical of things that had nothing to do with my eye, like my weight, or what I was wearing, even my lazy eye and she was the same with her employees. She would even criticize her employee about his weight in front of me. At the very least that is unprofessional.

She did not let me ask questions and she barely answered them. When I answered her questions, I had to be fast and concise or she would get impatient. Sometimes I was not sure. It is difficult to describe how my vision has deteriorated. Sometimes it is like I am looking through water. Other times it is like someone took an eraser and blurred some of the images. How do you describe that, except like that?

The pain was awful. I was told the drops they gave me should be enough, but when I tell you I could feel everything,  Imean exactly that. It was an awful experience every time. I thought I had to warrior through it and I was willing to do it because I did not want to go blind. I already have an uncle who is blind from diabetes because he left his untreated.

Last but certainly not least, the cost per injection per eye was $368 after insurance. I had no idea how I would be able to keep that up. They also could not schedule any appointments until my insurance approved so it was always hit or miss on the day or the time and I would have to wait to get in.

I was willing to do all of the above if it meant I would not lose my vision but the last two visits she told me my vision had not only not improved, but even got worse.  She blamed me saying I had to learn to control my diabetes. At that point, I was done. I thanked her for her feedback and never returned. But I was really scared because I had no idea what to do now. Shortly after I was laid off and I had no idea where to begin to find another specialist, but eventually I did.

I have a retina specialist now who is amazing!  Everything is better - from the location to the cost of parking, to her personality, to the pain of the injections, to my out-of-pocket cost per injection after my insurance.

The location is great. I get there in 30 minutes and trust me when I tell you that for Houston, that is a great time. Right now, there is no traffic but even when the traffic starts back, it will be better than driving to the Houston Medical Center. Parking is super easy to get to and it is free!

She and her staff are amazing in my opinion. They are compassionate, efficient, thorough, and attentive. I can ask anything, and they will answer. They listen to my concerns and address them all.

There is no pain from the injection. I do feel pressure, and of course, it still feels scary to have a needle stuck in your eye, and the liquid from the injection feels weird, but I recover right away. On a scale of 1 to 10, I give the discomfort a 3. I return to work with no problems. The antiseptic that kills off all the bacteria burns and the speculum used to keep my eye open hurt more than the actual injection.

And the best part is that my out-of-pocket expense is $35 instead of $368 per injection! They immediately enrolled me into the program to help pay for the difference in the co-pay and supposedly this medicine is one of the better ones. Her office took care of submitting all the paperwork for me. I could not have asked for a better experience.

Since I was diagnosed in 1999 to now, there has been a steady movement toward empowering the patient.  You are responsible for 99% of your own care and are responsible for the many day-to-day decisions.  If your doctor is not listening to you, do not hesitate to find a second opinion.

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