I live with a very rare genetic condition called cystinosis which slowly destroys my organs including the eyes, kidneys, liver, muscles, and brain. Because of this, I needed a kidney transplant in 2011.
At the time, I lived in Republican-controlled Nebraska where I went to the Nebraska Medical Center to get the transplant. However, the dominant narrative got in the way. This narrative says that society does not need to treat transgender people with dignity and respect.
On several occasions, while sitting in the waiting room at the Nebraska Medical Center Holly Fox, the transplant nurse coordinator would call my name. Instead of calling me by the name I identify with or the gender pronouns I prefer she called me Michael and Mr. Covington. Many of the staff there fought with me over their issue with the dominant narrative that says those who are different do not deserve to be treated as a human being. They even made excuses for their behavior and they claimed that it was illegal for them to use my preferred name and pronouns.
There was little for me to do because I accepted the dominant narrative and let them demean me.
The dominant narrative led to me not fighting when the Nebraska Medical Center staff treated me like shit and refused to do the kidney transplant. They even pretended to get ready for the surgery by actually scheduling it and having me go through all of the pre-operative appointments. Then at the last minute, they canceled the surgery. All of this happened even though I had a living donor ready to do the transplant. All they needed to do was perform the damn surgery.
These medical professionals obeyed the dominant narrative that said I am not worthy of life.
Because I did not get the treatment that I needed I was forced to have a less effective treatment that did not benefit me and in the long run hurt me.
Thus, because I did not get the transplant I needed I was forced to go on dialysis to extend my life. And because I did not get the transplant several complications occurred that was 100 percent preventable.
I had many surgeries that I did not need. Some of the surgeries were dialysis catheters that were placed in my chest for access to perform dialysis. I experienced many complications that led to me going to the hospital and having even more procedures. It led to needing to switch to another form of dialysis which meant more surgeries.
Everything I went through for three years was 100 percent preventable. None of this benefited me and I could have died waiting for the transplant.
Because of the medications, surgeries, and dialysis, years may have been cut off my life.
Who benefited from this and from me accepting the dominant narrative? The hospital, the medical supply companies, the pharmaceutical companies, the insurance companies, and everyone who made a profit off my suffering. These people and institutions made hundreds of thousands of dollars off the unnecessary medical procedures and medications.
This happened because of the dominant narrative and because I and others were not fighting it.
Nevertheless, I have the power to change this and so do you. Together we can win the fight for universal health care as a human right and we can win basic human rights for all people regardless of your gender identity or gender expression.
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.
My name is Mika Covington and I live with Cystinosis. I am 23 years old and hope to live 23 more. I was born with Cystinosis and diagnosed around age 10 months. Cystinosis is a rare metabolic disease that causes cells to crystallize causing early cell death. This happens because the amino acid cysteine accumulates in the cells, but has no transporter out. Cystinosis slowly destroys the organs in the body including the kidneys, liver, eyes, muscles, and brain. Cystinosis is a progressive disease. As I age, the disease affects my body further, inflicting damage to multiple organ systems. The medications I take only slow the progression of the disease but there is no cure. I have already been through the kidney failure, next up is thyroid insufficiency, calcifications on my brain, muscle wasting, and swallowing difficulties.
Cystinosis has always been a struggle for me and my friends, and my family. It of course continues to be a struggle. It has caused a lot of trauma not only to me but also to those who care about me. I cannot even comprehend how difficult it was for my family to get the news of my disease and how it will eventually take my life if we do not find a cure.
A year ago, I had a living donor kidney transplant at the University of Iowa Hospitals and Clinics (UIHC). At UIHC, I received excellent care and treatment. I personally feel they are the best in the Midwest. I was on dialysis for almost three years. I began dialysis in May of 2011, when I was a patient at the University of Nebraska Medical Center (UNMC). I first, was on hemodialysis, a form of dialysis that is usually performed with a catheter placed in the chest used as an access to cycle large amounts of blood into a machine that cleans the blood and returns it to the body. If you are on hemodialysis for a long-term period, a surgeon will create a port in your arm or leg called a fistula. However, I was only on this form of dialysis for nine month, until I switched to peritoneal dialysis.
I started peritoneal dialysis in March of 2012, because I was denied a kidney transplant at UNMC. Peritoneal dialysis is performed using a catheter placed in your abdomen that cycles a dextrose fluid into your peritoneal cavity that uses the wall of the cavity as a natural dialyzer that cleans your blood. I was on peritoneal dialysis until May of 2013, when I received the kidney.
Today, I am living with a new kidney and doing wonderfully in aspects of my renal (kidney) health. The transplant team at the UIHC was impressed with how well my body accepted the kidney and recovered from surgery. My creatinine level, which determines how well the kidney is doing, is 0.9. This number is awesome. You do not always see transplant patients do that well after transplant. My incisions are completely healed. I am down to only having blood draws once a month and only needing to visit UIHC once a year.
In 2010, my senior year in High School, I turned 19 and lost my health insurance. This happened because in Nebraska, you are an adult at age 19 and you must re-apply for Medicaid. I did just that and was denied. I was told that I was not eligible for coverage for having a pre-existing condition. I tried applying four times with the same results each time. However, I was still in High School, therefore I stopped trying and instead focused on graduating High School. I went most of that year without any of my medications. It is a fact that because of this, it cut a couple of years off my life and made me go into renal failure more quickly. I went from needing a kidney transplant in 3 – 5 years to needing one in six months to a year. If I would have had health insurance, coverage I would have been able to wait until after college to get a kidney transplant.
Since I graduated from High School, I have wished to contribute to society in any way possible and work to create the change I seek. However, because of having Cystinosis and going on dialysis forced me to stop working. To stay busy I volunteered on issue and political campaigns such as fighting for Full LGBT Equality, voting rights, and health care for all. I am passionate about these because I look forward to a future where everyone has the right to vote, has full and equal human rights, and access to high quality health care. For me, these causes are important because I know first-hand how not having access to health care can cause chronic diseases to get worse like my disease did.
I am currently not employed because even though my kidney issue is resolved for the moment. I still have Cystinosis. Remember it affects my entire body. Because of Cystinosis, I have Fanconi Syndrome, where molecules that should be reabsorbed into the blood stream are instead eliminated in the urine. This leads to the loss of important minerals, salts, fluids, and many nutrients. I also have issues with my eyes being extremely sensitive to sunlight and light in general. I have some issues with my heart and starting to have some neurological issues and frequent headaches. This all leads to a lot of stress and feeling sick. Not to forget, during my time on dialysis, I gained a lot of weight, which in of itself is causing problems.
I am participating in long-term clinical research study at the National Institutes of Health (NIH) in Bethesda, Maryland. I see Dr. William Gahl, one of the leading researchers in the world on Cystinosis. Dr. Gahl’s study was one of the first studies of its kind on Cystinosis. I currently see him for specialized study of the progression of Cystinosis in my body and to aid his research into the long-term effects of the disease. I first saw Dr. Gahl in 1992 shortly after I was diagnosed with Cystinosis. Since then I have participated in several studies elsewhere including at the University of California at San Diego Medical Center (UCSDMC) where they studied the psychological and neurological effects of Cystinosis.
There has been a lot of progress in treatment and management of Cystinosis. For instance, I take Procysbi instead of Cystagon. When I took Cystagon, I had to take 13 capsules four times a day and the medication made me sick. With Procysbi, I only take five capsules two times a day with nearly no side effects. There has also been progress made in studies using stem cells, which could cure Cystinosis. Therefore, there really is hope.
I am raising funds to help find that cure for my terrible disease. I hope you all will join me in this effort. Finding a cure not only will save my life but will save my little sister’s life and many more.Can I count on you all to join me?
At age ten months, I became very ill and was rushed into the emergency room (ER). The doctors diagnosed me with dehydration and failure to thrive. In the following months, I went through many tests including bone marrow taken from my hip. The doctors concluded from these tests that I had Nephropathic Cystinosis. This was a very scary moment for my family, they had no idea what Cystinosis was.
I owe my life to Dr. William Gahl from the National Institutes of Health (NIH). I began seeing him in 1992. Dr. Gahl shortly before meeting me he 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 and those medication that I am still living. The first group of doctors, I saw at the University of Nebraska Medical Center were useless, they told my parents that they did not believe I would live to be six years old because they didn’t wish to go out of their way to really figure out what was wrong with me. Nevertheless, they were right, if I would not have started the Cystagon I would have died.
Cystinosis has become part of my life. Cystinosis had done many great things for me. I look at Cystinosis as some sort of tool. I have been able to educate myself on many things that most people do not understand because of this illness. I understand most if not all of what many of my medications do and how they work. I understand what Cystinosis does and what Cystinosis is; I know the many different functions of the body especially the kidneys and what levels should be. I am able to travel to many different places. For instance, I go to the NIH once every other year, which is located in Bethesda, Maryland just outside of Washington, D.C. It has given me the opportunity to travel to California where I took part in a psychology study in San Diego. Cystinosis has also made me become more mature then many people my age and thus, I look at the world much differently.
Nonetheless, there are many negative aspects of living with Cystinosis, such as I have been to so many hospitals that I have lost count of them. The hands of so many medical professionals have touched me, which has led to me trying to tell them what to do, when they draw blood and start IVs. I have had so many different scans and X-rays that now, I have been exposed to more radiation then an average Iowan. I also take many different medication, which have many different side effects. Some of those side effects including vomiting, diarrhea, headaches, and bad breathe. Thus, the medications are another negative aspect of Cystinosis. But, I guess the most negative aspect of living with Cystinosis is that it will eventually kill me.
Today, living with Cystinosis is much easier because I finally after 3 years of waiting and the first transplant center refusing to do the transplant after scheduling it twice in the same year, I got my kidney transplant. I am doing much better and continue to improve. I owe that to the University of Iowa Hospitals and Clinics and Dr. Reed who did my kidney transplant. Oh and I guess Jon the donor. But, he didn’t have a huge roll in it, he only had to lay on a table and give up his kidney. Thanks Jon!
The following are graphs of my blood levels post kidney transplant.
Yes, I am a Christian and soon I will be joining the United Methodist Church (UMC) and will be joining the congregation at Broadway United Methodist Church in Council Bluffs, Iowa. With that said, I believe that God has a plan for my life, my politics, and my health. I believe that he put me on this journey for a reason. I better understand why I am going on this path and that it is with his guidance. I believe that his reason for putting me on this journey because he wants me to encourage others to stand up, speak out, and take care of each other who has less then us.
I believe that it was God’s plan for me to go through so many challenges to make me stronger. I believe that it was him who gave me the power to be able to speak out for myself. Which, lead to me speaking out against the discrimination, harassment, and bullying I faced in high school over my gender identity, and that led to me re-starting the Gay Straight Alliance at my high school which is still thriving. I believe it was him who gave me the strength to start Forward Equality back in 2010.
I believe that it was God’s plan for me not to get my kidney transplant at the University of Nebraska Medical Center (UNMC) Nebraska Medical Center so that I would go to the University of Iowa Hospital and Clinics (UIHC) and meet the great people of Council Bluffs, Iowa. In doing this, I got the wonderful opportunity to work (non-paid) on the Barack Obama re-election campaign, which taught me a lot in political campaigning. This created the opportunity for me to meet some truly amazing people in Council Bluffs, including Michele Lendt, Nancy Flores, Diane, Bob, Tom Dean, Connie Lairmore, Sue Hendricks, Linda Nelson, Chad Hannan, Melissa Head, Mike Gronstal, Leonard Boswell and many more. Living in Council Bluffs, gave me many great opportunities to learn and expand my knowledge to better work for my political goals of workers’ rights, healthcare for all, civil rights, adoption for all families, and safe schools.
I believe he gave me the courage to continue to fight for my life and to keep my head up while dealing with my illness, Cystinosis and all the crap it throws at me. I believe he is the reason my family had me participate in the clinical trial at the National Institutes of Health (NIH) in Bethesda, Maryland with Dr. William A. Gahl. That trial has lead to better understanding of the effects of Cystinosis and the U.S. Food and Drug Administration (FDA) approving the Cysteaminie eye drops which help reduce the formation of crystals on the corneas of my eyes. He gave me strength to keep fighting when I went into kidney failure and when things were quite difficult. He gave me the strength to not give up when it seemed hopeless. He continues to give me the strength to stay in the clinical trial at the NIH and help make lives better for future generations of kids with Cystinosis.
I believe it was God’s plan that Jon von Kampen donate his kidney to me. I believe this because how close of a match he was and because of how great my body has accepted his kidney. Here are my most recent lab results: Platelet Count 184, WBC (White Blood Cell) 7.2, Hemoglobin 13.7, Creatinine 0.8, BUN (Blood Urea Nitrogen) 10, CO2 23, Potassium 3.8. I am doing so well that the U of Iowa transplant team has lowed my dose of anti-rejection medications and has even cut one of my medications out of my regime.
I believe it was God’s plan to have me work to end oppression and stand up for those who have less then others. I believe it is his hand that leads me down the road into my field of politics, and my passion for medicine and wishing to help others with illnesses find the greatest healthcare professionals to help them.
With that said, I feel grateful to the Pottawatomie County Democratic Chair Linda Nelson for inviting me to speak at the Pott. County Women’s Dem lunch on December 2nd to speak about my story, my illness, and Forward Equality.