Mika’s Cystinosis

Mika’s Cystinosis

By Mika Covington

At age ten months, I became very ill and rushed into the Emergency Room. The doctors there diagnosed me with dehydration and failure to thrive. In the ER, I went through a system of tests including bone marrow taken from my hip. The doctors concluded from the tests they performed on my already weak body that I had Nephropathic Cystinosis. This was a very scary moment for my family, they had no idea what Cystinosis was, let alone Nephropathic Cystinosis. Later that evening, the doctors took my parents aside and explained to them what the illness was and that they did not know enough to effectively treat it; the doctor told them the news that they did not want to hear, that I might not make it.

In the next couple of years, my family met Dr. William H. Gahl. I owe my life to Dr. William Gahl from the National Institutes of Health. I began seeing hir in 1992. Dr. Gahl shortly before meeting me discovered that Cystagon and some other medications are successful in treating Cystinosis. I started the Cystagon treatment in 1992 during my first visit to the NIH. It is because of his research that I am still living. These medications are what keep me alive. The first group of doctors I saw when I was ten months old did not believe I would live to be six years old. They were right; I would not have made it if I did not have the Cystagon.

Nephropathic Cystinosis has become part of my life. I look at Cystinosis as a tool. I have been able to educate myself on so many things that most people do not understand because of this illness. I understand all the facts of all the medications in my treatment, the effects of Cystinosis, what Cystinosis is, what Creatinine is, and so much more. I have been able to see places that not many people ever seen because of the Cystinosis. For instance, I have been to National Institutes of Health in Bethesda, Maryland more times than I can count. I have seen that place grow from  building 10 being only one building, to now three buildings they call building 10.

Cystinosis has done many great things for me. I became more mature then the rest of my class in middle school and high school. I have become very open-minded. I try to never judge anybody because of hir actual or perceived race, religion, sex, sexual orientation, gender expression, gender identity, mental and physical ability or disability, physical attributes, etc. I have held the belief that I should never judge another human being. We all are humans, we all have issues and problems, and we all make mistakes.

Other positive aspects to having Cystinosis is that I am able to go see places that not everyone are able to see or go to. I have been to many states, to different hospitals. I have been to San Diego to visit some doctors that specialize in the Psychology of Cystinosis patients and I always fly to Bethesda, Maryland to go to the NIH. The NIH is the lead research facility in the Nation.

The negative aspects of having Cystinosis are that I have been to so many hospitals that I have lost count of them. I have been touched by the hands of so many medical professionals that now I try to tell them what to do, or when they are about to take my blood I tell them what arm is the best and what vain they should use. Now, when I go in to have rounds of medical testing done I tell the technicians not to waste their breath I know what they want me to do, I know what is going to happen, and I know all about the scans. All of the scans that I have been through have caused me to be exposed to more radiation then any average human would go through. I use to have blood tests every six months to check up on my kidney function. Then it got to every three months and now it is like once a month.

With Cystinosis, I have to take all sorts of medications, which make me smell badly some days. Many of those days have been when I have school, and then I am harassed and bullied throughout the day.  I always get hurt from the bullying and harassment I went through, although I knew that the kids were wrong because I did take baths and brush my teeth. I realize that I had unavoidable odor because of the medications I had to take. Thus, I was able to teach some of my fellow students about my illness and that the odor was because of my medications.

Additional, problems I have had include; issues with medical insurance and I will continue to have issues with insurance because Cystinosis is a life threating illness. I will always need to see doctors and have many medical tests done on me yearly. Cystinosis is downright expensive. Right now, I do not have medical insurance. I have applied for Disability and Medicaid, but time is running out. I am becoming sicker. I have about two months left of medications and then I am out. I need to go in and check up with a nephrologist but because I do not have insurance, hospitals do not want to see me as a priority so I have to wait another week.

The first day that I went in to the Social Security Office to apply for Disability, they did not take me seriously. The social workers that I talked to thought I was making it all up. Well, at least that was before they saw the amount of medical records I have. Then they believed me. The social worker told me that he would make sure personally, that he got all of my records to the proper person as soon as possible. After that day, I have been in and out of both the Social Security Office and the Nebraska Medicaid Office trying to get them to speed up the process. I as of the time of me typing this still am waiting for Disability and Medicaid to make their decisions.

I am now 19 years old. I am a transgender-genderqueer woman, and my name is Mika Covington (My legal name is Michael Covington). Cystinosis has had a great impact on my life good and bad. Cystinosis has given me the strength to stand up for persons with disabilities, persons with Cystinosis, and for my civil rights; I am part of the LGBT (lesbian, gay, bisexual, and transgender) Community. I am currently working on the Iowa Pride Network’s College Leadership Team. I help run the Iowa Pride Network’s Regional Southwest Iowa Gay-Straight Alliance Coalition. I have done volunteer work with GLSEN Omaha (Gay, Lesbian, and Straight Education Network). During my senior year of High School at Millard South High School, I reintroduced a Gay-Straight Alliance Club. I then ran the club as President that school year. Quiet recently I participated in the Pride Rally outside the Omaha City Council Chambers in support of the City Ordinance that would have added sexual orientation, gender identity, and gender expression to the city’s non-discrimination laws. Even more recently, I went to Ames, Iowa to take part in Iowa Pride Network’s Queer Leadership Summit.

Before I came out as Transgender, I worked on advocating for the Forgotten Children of Uganda. I posted pamphlets in local stores and restaurants with information on them to where you can donate to help those poor children. I even created a couple presentations that I gave during my Advanced Speech class in 10th grade. I have created presentations for Speech Competitions on what Cystinosis is, the different types of Cystinosis, and how to combat Cystinosis. The presentations also included information on the Cystinosis Foundation and Cystinosis Network.

Recently I have been to the NIH in Maryland. While I was there, I was told that my kidney function was 21% and my creatinine was 3.5. Approximately 3 weeks later, I ended up in the ER at the Nebraska Medical Center. I went in because the whole day I was laying on the couch feeling like crap. I did not eat much that day. I was extremely thirsty the whole day, and I noticed my skin color was off. It was around 6:30pm that I told my roommates that I needed to go into the hospital as soon as possible. At the ER, I found out that my kidney function had dropped from 21% to 18% within 3 weeks and my creatinine levels were 3.9. The doctors there wanted to put me on dialysis but because I did not have any insurance, they sent me home instead.

Currently I am living with my Grandmother just outside of Malmo, Nebraska. I moved to her place because I had to quit my job; I just could not work anymore. I am so tired and sick to do any more work or do any standing for long periods. I am staying here until I get Disability and then get a one-bedroom apartment in Omaha so I am closer to the Hospitals there. I am hoping that I will get a kidney for my Christmas gift or one for my birthday gift in February.


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