I am 25 years old and I live with cystinosis. Cystinosis has been a struggle. I live with it every day and many days I do look ‘normal’ and healthy. My illness is not usually visible on the outside to most people.
Living with cystinosis has been a challenged for me and those who care about me. It is such a challenge because of my continued fight to either have health insurance or keep my health insurance. It is so difficult on those who care about me because they see the emotional toll the fight has had on me, and how close I get to giving up sometimes. This seems like a never ending fight with the government to have health insurance, the insurance companies themselves, and the pharmacies. Living with this orphan disease is more than just living with a disease, it effects all aspects of your life.
I was diagnosed with cystinosis around the age of 10 months old. Cystinosis is a rare orphan disease that causes the amino acid cystine to accumulate in the cells, it slowly damages organs including the kidneys, liver, thyroid, eyes, lungs, muscles, and brain. An orphan disease is a disease that has no been “adopted” by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat it.
In 2010, my senior year in high school, is when the fight with the government begun. I turned 19 and lost my health insurance. I lost the health insurance because in Nebraska you are an adult at age 19 and must re-apply for Medicaid. After applying four times I kept getting the same result, that I was not eligible for coverage for having a pre-existing condition, the cystinosis. This resulted in me having no health insurance for nearly eight months and led to me going into end stage renal or kidney failure. I went from needing a kidney transplant in 2-4 years to needing one in six months to a year.
I was on dialysis for almost three years. I started dialysis in May 2011, when I was a patient at the University of Nebraska Medical Center (UNMC) or Nebraska Medical Center (now: Nebraska Medicine) being evaluated for a kidney transplant.
At the beginning I was on hemodialysis, a form of dialysis that is performed with a catheter placed surgically in the chest that is used as an access to cycle large amounts of blood and returns it to the body. Fortunately, I was only on this form of dialysis for nine long months. Until I switched to peritoneal dialysis.
In March of 2012, I started peritoneal dialysis. I switched because I was denied a kidney transplant at the Nebraska Medical Center from my living donor and would need to be on dialysis much longer, additionally hemodialysis was not working out for me.
Peritoneal dialysis is performed using a catheter that is surgically placed in your abdomen that cycles a dextrose mixture fluid into your peritoneal cavity that uses the wall of the cavity as a natural dialyzes that cleans the blood.
Today, I am again fighting the government for healthcare. I was told that I am no longer disabled and that all of my Social Security benefits will end on the last day of July this includes Medicare coverage. i am on my second appeal of their decision. This has taken a lot of me as well.
If I lose the health insurance this will be a very bad thing. I will not be able to have access to most of my medications including my anti-rejection and cystinosis medications. Without the anti-rejection medications my transplanted kidney could start rejecting within a week and I would need to be hospitalized, and I could lose the kidney.