Team Member: Sara McInteer
EVENT DATE Apr 24, 2015
Its been a year since Duy Liem Le was diagnosed with Type 1 Diabetes, Hypertension, Kidney Failure, and Diabetic Retinopathy and Retinal Detachment. When I came up to Maryland last year, I had no idea what was going on. I had been Duy Liem's girlfriend for less than a year and then he moved away, suddenly texting me that he was sick, asking me what I would do if he died. It bothered me, but he wouldn't tell me anymore and I didn't have a car to go see him.
I finally saved up enough, put in my two weeks notice, and with a couple days off, planned to go see him. I packed up and was ready to go the next day. That following morning, he texted me and finally told me what was wrong. He told me that he couldn't see anything now, that he had slowly been losing his sight, and how scared he was and how he loved me. I called him immediately and left shortly after.
I remember driving through Virginia. It was raining hard, but I didn't stop even though, through the tears and rain, I couldn't see anything but two red lights in front of me. I remember driving up to his home and calling him to tell him I was there. Watching him stumble towards me in the dark, calling out my name.
I knew nothing about any of this, even though my grandmother had diabetic retinopathy with retinal detachment as well (I didn't even know that's what it was called at the time). I didn't know anything about Diabetes even though I had a friend with Type 1 and several family members with Type 2.
I didn't know about blood pressure until his nurse took it four times, convinced that the numbers were wrong and the machines taking it were broken. "Are you ok?" she asked him. She looked angry, sounded like she was trying to convince him that he wasn't. Duy didn't even know she was talking to him; he turned to me, reached to hold my hand, and asked if I was ok.
"She's asking you," I told him, I felt so afraid and so ignorant, "Are you ok?" He told her that he felt fine and she rushed him into a room.
The doctor came in shortly after, shook everyone's hand, and told us Duy shouldn't even be standing in his condition. Then she looked at me and asked me how I could have let this happen. I was shocked, she kept talking to me, yelling at me, even though his family was right there. I couldn't cry, her words drained me. "Take him to the ER right now." Everyone asked if I could as we walked out of the building. I nodded. I told them I would and could.
In the ER, we arrived around 1 p.m. and didn't get out until after midnight. They were trying to get his blood pressure down, take tests for everything that could have been destroyed by his uncontrolled diabetes and blood pressure. Every few hours, it was more awful news. I held his hand and told him everything would be ok. Even though he couldn't see, I didn't cry unless Duy was asleep.
After they finally got his blood pressure normal, they sent us to the heart floor in the hospital. We were starved, but nothing was open. I had a chair and a couple of cushions to sleep on. The day had been exhausting. We would be at the hospital for four more days; I will never think of a hospital as a healing place ever again.
But we finally got out the hospital. Duy was set up to do dialysis and I wasn't scared about the money. Even though we had to fight hard for it, he was getting both Medicare and Medicaid. It was tough adjusting but we trucked though.
We struggled through the high and low blood sugars. We stuck to every diet restriction. We made hundreds of calls and appointments. He took eye injections and had surgery. His lab results came back better and better. It was a relief, even if he was permanently disabled.
After all the mess Duy and I trudged through, we reclaimed our weekends. I decided to go home and visit my parents. They tried to convince me to leave him. Come home, they said. They told me he would probably die soon and most certainly die young. I couldn't believe my ears.
I make calls to doctors and insurance and organizations despite my anxiety. I drive him everywhere, cook for him, and keep his spirits up despite my depression. I told them that above all else, I loved him and it would absolutely crush me to not be with him.
Going through this has been hard. Its felt like its only been the two of us. Trying to get help feels like a fight every time. We've fought social security and lost over and over again but fought it each time. We had small payments to live off of and insurance until January 2016. We still have Medicare, but we are hitting a brick wall trying to get supplemental insurance back. Today we got a bill for over two thousand dollars from his dialysis center. We're getting charged for all of his dialysis appointment and nephrologist visits.
There are other bills that we have been doing our best to pay. Hundreds of dollars for his eye injections and retinal scans, doctors and medications. I have my own debts and no college education.
I can't do this, but I am trying my best.