My name is Mika Covington and I am a first generation Iowan. I grew up in a small town in Nebraska in a middle class family with three siblings. Life was difficult for my family because I was born with a rare disease called Cystinosis.Cystinosis is a rare metabolic disease that causes early cell death and it slowly destroys my organs including my kidneys, liver, and eyes. There is no cure for Cystinosis, however there is some amazing research being done at the National Institutes of Health (NIH) and at the University of California at Los Angeles (UCLA)with stem cells. Because of having this disease my parents always were worried about how to pay for my medical care and still pay for all the other bills. It was always a struggle for them.
I am now 22 years old and live in Council Bluffs, Iowa where I am working on getting some college classes done at Iowa Western Community College while recovering from a kidney transplant that I had last year at the University of Iowa Hospitals and Clinics (UIHC). Because of my disease and having the kidney transplant, I cannot work and so I am on disability. Luckily, because of the Affordable Care Act (Obamacare), my insurance cannot put a lifetime cap on my coverage and when I am able to work, again I cannot be denied coverage because of having a pre-existing condition.
This spring I volunteered to be an organizing fellow with Organizing for Action because I believe that healthcare is a human right and I want to be sure that as many people as possible can get covered through the ACA. I believe it is important to make sure Iowans are educated about what the ACA is and how it is already benefiting them. Unfortunately, many Congressional Republicans want to repeal and defund the ACA. They refuse to help kids and young adults like me to get the lifesaving healthcare services because their plan is to let insurance companies put lifetime caps on insurance and deny people like me coverage because of having a pre-existing condition.
As an organizer with OFA my goal is to make sure that doesn’t happen and make sure everyone understands what the ACA is and how they can get covered through it. I want to stand up for those who cannot speak for themselves and to stand up for the least of these.
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.
I am Mika Covington, I’m 22 years old, and I have Cystinosis. I was born with this disease and diagnosed around age 10 months.Cystinosis is a metabolic disease that causes cells to crystallize causing early cell death. This happens because amino acid cysteine gets into the cells, but has no transporter out. Cystinosis slowly destroys the organs in the body including the kidneys, liver, eyes, muscles and the brain. Cystinosis has always been a struggle for me and my family and friends. My disease has caused a lot of trauma to myself and my family and friends. I know that it must have been very difficult for my family to learn that their child has an incurable disease that will eventually take their life. I personally cannot comprehend how they could have handled getting that news.
My family first learned of my disease from the University of Nebraska Medical Center (UNMC) Nebraska Medical Center where they took me to try to figure out what was going on with me. Before they took me to the UNMC they took me to many different hospitals in the Omaha Metro area. UNMC was the one to diagnose me with Cystinosis because one intern happened to read an article talking about a mysterious disease. Nevertheless, at the time UNMC did not know exactly what to do with me and said that they did not think I would live much longer then about 6 years old.
Luckily, because of that intern my family heard about the trial going on at the National Institutes of Health (NIH) in Bethesda, Maryland with Dr. William Gahl. During the trial, I started taking oral Cysteamine four times a day, and later I began doing the Cysteamine eye drops that are taken every hour while awake. Moreover, of course many other medications for all the different problems that come with Cystinosis, like low sodium, potassium, phosphorus, protein, and excessive thirst.
Now, I would like to fast forward to when I started dialysis because I finally went into end stage kidney failure (ESKF). I started dialysis at the end of May in 2011. I first started on hemodialysis. Hemodialysis is a form a dialysis that is usually done with a cardio catheter placed in the chest that is used as a port to cycle blood into a machine that cleans the blood and returns it. If you are doing a long-term hemodialysis, a surgeon will create a port in your arm or leg called a fistula or graft to do dialysis. It is kind of like creating a thick vein to use to access the blood. I personally was on hemodialysis for a little over a year and then switched to peritoneal dialysis. More on that later.
However, before I started hemodialysis in 2011; I was being worked up at the University of Nebraska Medical Center (UNMC) Lied Transplant Center to get on the waiting list for a cadaver kidney (dead person kidney). I did pass all of the tests and was placed on the list as of March 2011. Then I started to look for living donors. I found Jon von Kampen who happened to be a match. Therefore, we set up a surgery date but eventually were unable to do the transplant at the UNMC Lied Transplant Center.
Therefore, I would be on dialysis longer and I did not like or do well on hemodialysis. That is when I concluded that maybe peritoneal dialysis would be a better choice for me. Therefore, in February of 2012, I was set to have a PD catheter place in my abdomen. Then in March of 2012, I started peritoneal dialysis. This form of dialysis was the best for me. I got many parts of my life back and was able to become more politically active once again. I liked it a lot. I also felt better on PD.
My journey would soon take a major turn. The summer of 2012, I met Amber Tracy a Field Organizer from Organizing for America (OFA) or the Obama Campaign. She invited me to a couple of events she was holding at the college I was attending for political science and psychology. After she became to know me a little more and all of things I was doing and active in. She recommended that I apply to become a Summer Fellow (intern) at OFA. I agreed that would be fun and a great learning experience and so I applied and came to Council Bluffs, Iowa to first volunteer on the campaign until I was accepted and interviewed for the position. Once, I was accepted, I began doing a lot of work to elect the President. I organized house parties and other events like our Equality night. I made many calls talking to voters about what President Obama has done for the State and me and why they should consider voting for him. I also had the chance to go to Des Moines, Iowa to see the President of the United States of America speak to a crowd of supporters at the Iowa State Fair Grounds where I was able to stand on the stage behind the President.During this entire time, I was doing Peritoneal Dialysis four times a day. The Obama Campaign even arranged for me at the President’s event to get dialysis done before he spoke. They were so considerate of my condition and me.
During my time in Council Bluffs, Iowa working with Organizing for America (OFA), I started looking into the University of Iowa Hospital and Clinics (UIHC) to see if I could possibly get on the transplant list there and maybe get a live donor kidney transplant. I did a bunch of research on the hospital and their transplant team and then I finally decided to call them and get a packet of information and paperwork to fill out.
In September of 2012, I was set to go to Iowa City, Iowa to be worked up at the UIHC Transplant center to see if I could be placed on their transplant list. I did pass and was placed on their list the following month, then set out to find another living donor. I sent out about eight packets of information to people who expressed an interest in donating their kidney to me. Out of the 8 packets only 3 where returned and only one was chosen to come to Iowa City, Iowa to be worked up to see if they were a match. That donor was a match but was eventually denied by the committee to donate and so I had a choice to make, send out more packets or see if Jon was still interested in donating.
Luckily, Jon von Kampen was still interested in donating his kidney to me. So, he filled out the packet and sent it in to the UIHC Transplant Center. They immediately saw that he was a match because he was the original donor when I was at the UNMC Lied Transplant Center. Within a month or so Jon was called and asked to come to Iowa City to the UIHC Transplant Center to have some tests done to make sure he was still able to donate. Later of course, Jon was ruled able to donate his kidney and so they scheduled the transplant for May 30, 2013.
Last month, Jon, I, and our families went to Iowa City, Iowa to the University of Iowa Hospitals and Clinics (UIHC) Transplant Center to have the kidney transplant. We arrived at Iowa City a day before our pre-operative appointments because it is about a 4.5-hour drive to Iowa City. We both passed all our tests well and went back to hotel to wait until 5am the next morning to go in to have the surgery.
On the morning of the surgery, we all had to get up very early in the morning to get to the hospital by 5:30am, Jon’s surgery was scheduled for 7:15am, and mine would be about 20 minutes after. My surgery took about 5 hours to finish. The staff at UIHC was wonderful to both Jon and I. Once I was moved to stage 2 right before they took me to the operating room the family started taking photos of me while I was waiting. The staff was able to get the IV started very easily. The staff also explained everything to me and I understood what was going to happen before it happened. After the staff explained everything they rolled my bed out of the room on our way to the operating room. They kept me calm and relaxed almost the entire time. When we got to the operating room they started to give me more medications, got me up on the table, and then started to put me to sleep.
After the surgery and after they had me in recovery for awhile, I finally wake up with the new kidney that I named Serenity and Serenity was working very well. Of course though, I was in a lot of pain but I was already feeling much better. After surgery that night my medical team wanted me to get up by 10:30pm to do my first walk. My goal was to walk every 4 hours and sit in my chair 3 times a day for each meal. I was able to get up and walk at about 9:30pm. It was very painful but doable. This went on for a couple of days and then I was discharged on June 3, 2013.
Now, I am living with full kidney function and I am no longer in End Stage Renal Failure. My incision has finally healed and my health is so much better. Nevertheless, I had to have another surgery to remove my peritoneal dialysis catheter. That surgery was also done at the UIHC by my transplant surgeon. This surgery had some complications because of how the UNMC Transplant surgeon put it in. My UIHC
Transplant surgeon has never seen a PD catheter placed like mine was so it wasn’t a laparoscopic surgery and they had to keep me over night because of my pain levels. I was discharged the next afternoon and went back to the hotel to rest before we would head back to Council Bluffs, Iowa.
Thus, today I have pain from the two incisions for the PD catheter removal and one of them was left partly open to drain in case of infection. But other than that I am much better but I do sleep a lot and I have been able to decrease the amount of pain killers I am on to about 2 tabs at bed to help sleep more comfortably and fully without the pain. Those two incisions currently have constant pain.
Any questions about my journey or about kidney transplants or Cystinosis feel free to email me at email@example.com
I am a survivor and there is nothing that can take that away!
I would like to also tell you about how my days go medically.
7am: I take medications
Sertraline 2 tabs – for depression/anxiety
Phospha 250 Neutral 1 tab – for Cystinosis
Mcyophenolate 1 tab – for prevention of kidney transplant rejection
Sulfamehoxazole-TMP-SS 1 tab – for transplant to prevent infection prophylaxis
Rapamune 4 tabs – for prevention of kidney transplant rejection
Prednisone 1 tab – for prevention of kidney transplant rejection
Levocarnitine 2ml oral solution – for Cystinosis
Cystagon (LTD DIST) 10 caps – for Cystinosis prevention of additional organ failure
Cysteamine HCI BAC eye drops one drop in each eye – for Cystinosis to prevent corneal crystal buildup (I try to do these every hour while awake like prescribed)
9 or 10 am: I get out of bed to really start my day
I weigh myself and record it
I take my temperature and record it
I take my blood pressure and pulse and record it
I fill all my water bottles (need to drink at least 2 liters of water a day, my doctors want me to drink between 3-4 liters of water a day)
11am or 12pm: Meds again
Cystagon 10 caps
Ondansetron 1 tab – for prevention of vomiting as needed (many of my medications especially the Cystagon make me very sick some days)
Vitamin D 200 IU
6pm: Meds YAYS!
Mcyophenolate 1 tab
Phospha 250 Neutral 1 tab
Cystagon 10 caps
Cysteamine eye drops
8 or 9pm: I get ready for bed on days that I don’t have any events for LB380 or other
I take my temperature and record it
I take my blood pressure and pulse and record it
11pm or 12am: Yays meds again!
Cystagon 10 caps
Cysteamine eye drops
That’s how my days on average go.
Finally, here are some videos that I found that I find moving and inspirational.
Below are pictures of my incisions so don’t look if you might get sick. I cannot be held responsible.
So as everyone by now knows I need a kidney transplant. Yes, I have friends working very hard to try to get me a pool of donors for the transplant. Nevertheless, I would like to share some information from the University of Iowa Organ Transplant Center.
First I must point out that, organ donation to another person must be done on your own free will; that means no one can force you into this decision. Second, the donation must be given altruistically; this means that there is no illegal financial gain by anyone. Third, the Transplant Center must always maintain the best health interests of the donor. If there happens to be a clear – cut reason for the donor not to donate, the Transplant Center may deny the donor that option, even though the donor may still wish to donate.
There is no director medical benefit to donating a kidney. Although, the benefit that you will receive as a living kidney donor is the opportunity to give another person the possibility of better health compared to if they received a kidney from the list of cadaver donors. Living donor organ transplants usually increase the chance of a successful transplant. Successful transplants result in improved rates of functioning kidneys at one year, and especially in the long term, at five, ten, or more years. Additionally, there is often a longer waiting time for deceased donor transplant in which time the recipient can become more ill. (By the way I am going on my third year of waiting for a kidney transplant. My specialist on Cystinosis at the National Institutes of Health (NIH) in Bethesda, Maryland wanted me to get a transplant almost two years ago.)
It is a rare possibility that you could develop kidney failure in the future, either as a result of the donation or more likely, due to unrelated causes. Another, less obvious benefit of donation, is the discovery of an undetected illness that might benefit from treatment.
There are some risks to living kidney donation. The kidney removal for donation is usually done by using surgical instruments and a small incision (laparoscopy). There are some short-term risks of surgery for donation include, but are not limited to: death, bleeding, need for blood transfusion, wound infection, pain, bowl symptoms, and development of a blood clot in the legs after surgery. The risk of operative death from this kind of surgery is about 1 in 10,000, the same risk for any elective general surgery procedure. Donors can expect to experience a mild to moderate degree of pain for several weeks. Rarely, patients experience pain for up to two to three months. Occasionally, patients have some discomfort for up to six months, but pain beyond six months is rare.
Before donating, you must be evaluated to determine if it is medically appropriate for you to donate a kidney. You must be 18 or older. You must have a number of blood tests. This includes screening for HIV (the virus that causes AIDS), Hepatitis B (which I am immune to, so I can receive Hep B positive kidneys), and Hepatitis C (viruses that can cause liver disease). It is a possibility that an unexpected finding during the evaluation might affect your ability to get health, life or disability insurance in the future.
Some of the long term risks of living kidney donation include the possibility of a greater risk of developing high blood pressure as you get older. This is particularly true in African-American donors. Kidney donors may also have higher chance of increased protein in the urine. Everyone loses a small amount of kidney function as they get older, even with two normal kidneys. The rate of loss of kidney function after removal of one kidney is the same as before surgery. With no kidney disease, one kidney should be adequate for the normal human life span. At present, no studies have shown any abnormal loss of kidney function in kidney donors, even up to 15-20 years after surgery. Having only one kidney puts a person at a disadvantage in cases of kidney cancer or injury that results in the need for removal of that kidney. These are rare problems, but you should tell us if you think they may cause specific trouble for you. Kidney stones can also be more difficult to treat.
You cannot have diabetes if you wish to donate. There are no tests that can predict with certainty if you will get diabetes as you get older. Diabetes is particularly of concern if you have a family history of diabetes. Your risk of diabetes later in life will be influenced by your diet, weight, and level of exercise. If you have a higher likelihood of developing diabetes, and your laboratory tests indicate some level of concern, you might not be able to donate.
The process to donating a kidney starts with a simple health status questionnaire and a blood sample to determine your blood type and compatibility. If it is determined that you are a potential donor, you will be invited to Iowa City to complete your evaluation. The evaluation includes interviews and examinations with physicians, a clinical psychologist or social worker, and a donor advocate. There will be other blood tests, and routine medical screening tests such as an EKG and chest x-ray, and a CAT scan of your kidneys. We expect your routine general health maintenance tests (e.g. mammogram, Pap test, colonoscopy, etc.) to be up to date.
In order to complete the evaluation, the transplant team will check your ’tissue type’ or ‘HLA type’ which is the complement of proteins that your cells have that are recognized by your immune system as your own and by your kidney recipient’s immune system as foreign. Since these proteins have a strong influence on the success of the transplanted kidney, it is important for the team to identify your HLA type. This is done via a blood test and involves genetic testing and by Iowa law requires your informed consent.
Once all the testing has been completed, the transplant team and your donor advocate will meet to determine whether or not it is in your best interest to proceed with donation. The transplant coordinator will let you know the result of the meeting.
You may decline to donate at any time before, during or after the evaluation for any reason. If you chose no to donate, the reason for your decision can only be disclosed if you allow it. On occasion if you chose to donate, portions of your medical information may need to be shared with the recipient so that they can consider the risks and benefits of accepting a kidney from you.
After the donation surgery and after being discharged from the hospital, you will be asked to return to the University of Iowa Hospitals and Clinics for a post-op visit with your surgeon. This is usually scheduled 1-2 weeks after discharge. The primary reason is to ensure that your wound is healing well and that you do not have any other problems. Ideally, the transplant team would like to see you at 6 months, 1 year, and 2 years. You will receive a letter with the team’s recommended follow up at the 6 months, 1 year, and 2 year intervals. The team can work with your primary care physician to accomplish this if travel to Iowa City is too difficult.
All medical costs of your evaluation as a potential kidney donor, and the cost of the actual surgery, will be covered by the recipient’s insurance. There will be no charge to you or your insurance carrier for these medical expenses. However, sometimes during your evaluation, the team may find conditions that may require further tests and treatments for your own benefit. Whether you become a kidney donor or not, paying for these tests and deciding where they should be done, will be a choice made by you and your insurance company.
The cost of your first follow-up visit after surgery will also be covered by the recipient’s insurance company and/or Medicare. In addition, any problem occurring during the first 6 months after surgery, which the UIHC transplant physicians believe is related to the donation, will be covered.
After 6 months post donation, the Transplant Program will no longer assume responsibility for the costs of care related to complications of donor surgery or the recommended follow-up care described above.
So there is much of the information that is most important to the donation process. If anyone is interested in donating please send me an email at firstname.lastname@example.org.
*All information provided above was provided by the University of Iowa Organ Transplant Center.