The disease quickly robbed me off all that. One of my first symptoms was an accumulation of ammonia in the brain. I became highly forgetful — I forgot how to get out of a car and how to answer the phone. I couldn’t remember how to make change for customers. One day, I tried to go home from work and got lost.
As the disease worsened, I tried to make the best of it. My wife and I were lucky to have private insurance for high-risk patients. It cost $2,000 a month with a $5,500 deductible. That cost was high, but we didn’t have any other choice. My liver ailment and diabetes were pre-existing conditions that would have made it impossible to find a new plan.
I stopped working at the store in November 2012. My life was a roller-coaster ride of monthly blood transfusions, hospital admissions, severe memory loss and the loss of my ability to drive. I slept most of the time and depended on my wife for all of my care. We would drive 3.5 hours to Duke Medical Center several times a month for transfusions.
Treating my condition eventually took up so much time that we closed our store. In June 2013, we sold our home in Pawleys Island and moved to Durham, N.C.
In October 2013, I got a letter from my insurance company telling me that my existing high-risk insurance would be ending effective Dec. 31, 2013. I was told that if I wanted continued medical insurance, I would have to find another provider.
I was terrified. At this point, I was so ill that my wife had to be a full-time caregiver for me. We were living on my Social Security Disability check, a drastic change in income for both of us. We could not afford the hundreds of thousands of dollars a liver transplant would have cost. And without insurance, I would have been dropped from the transplant list. I would have died.
My old insurer suggested we sign up for the Affordable Care Act exchange. So I called. The process was messy and frustrating. The Web site crashed; it took days to sign up, and countless phone calls. But eventually, I managed to enroll.
On Jan. 1 this year, I started on the Obamacare insurance. I now pay just $126 a month for insurance; a federal government subsidy covers the rest. If we had to cover the full cost of our health care, we would have just $574 left each month for all of our other expenses, including food and medicines.
At the same time, my conditioned quickly worsened. I was in constant pain, had no energy due to blood loss, had no appetite, couldn’t hold any food down, developed stomach swelling and was hospitalized twice for peritonitis. I was unable to walk unassisted and suffered from extreme confusion.
By April, I was dying. Then, miraculously, on April 3, a liver became available. I was given a second chance. I had the liver transplant, and my insurance covered the entire cost of the procedure.
Now, I spend my days recovering. For the first time in many years, I am feeling really good and am able to enjoy life again. My wife is my caretaker, though she works part-time for a catering company. I’m on powerful, expensive drugs that suppress my immune system. I also have had to undergo chemotherapy because my doctor found a tumor in my liver. Without insurance, these medicines and treatments would cost more than $5,000 a month. That alone is much greater than my Social Security payment. Bottom line, without insurance and the subsidy I would simply die, because I could not afford my drugs and my body would reject my liver.
After my year-long recovery is complete, I’m hoping to go back to work. I’ve had three careers — in higher education, in biomedical engineering sales and as a small-business owner. Because of my insurance, I’m able to contemplate my future. And I’m really frightened that the Supreme Court might cut the subsidy for me and so many others. For me, the subsidy is the difference between life and death.