Help Fund a Cure for Mika’s Disease

599457_111877858954314_119659440_nMy 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.

Post-Op Kidney Transplant
Post-Op Kidney Transplant

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.

IV meds post-op transplant. Not many compared to most transplant patients.
IV meds post-op transplant. Not many compared to most transplant patients.

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.

Me in Pre-op with Diane and family
Me in Pre-op with Diane and family

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.

Healthcare event in Council Bluffs, Iowa.
Healthcare event in Council Bluffs, Iowa.

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.

International Day Against Homophobia and Transphobia Rally
International Day Against Homophobia and Transphobia Rally

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.

National Institutes of Health (NIH)
National Institutes of Health (NIH)

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?

You can donate by visiting www.gofundme.com/9ibcmo or click here: Fund a Cure

*Funds will go directly to the Cystinosis Research Foundation (501(c)3 non-profit) that has no paid staff and sending all funds to cystinosis research. 

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Why Obamacare is important to me

1479020_10201819868972906_734981903_nMy 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.

Image from google
Image from google
Image from google
Image from google

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.

Six Month Post Kidney Transplant UPDATE

Me in Pre-op with Diane and family
Me in Pre-op with Diane and family

Yesterday, December 4, 2013, I went to the University of Iowa Hospitals and Clinics (UIHC) for my six month post kidney transplant check up. Kidney-wise, I am doing great!

The following are my most recent labs:

  • Sirolimus level – 11.7
  • BUN – 8
  • Creatinine – 0.9
  • Potassium – 3.7
  • Hemoglobin – 13.9
  • WBC – 5.2
  • Platelet Count – 233
  • CO2 – 25

These lab results indicate that I am doing great.

US-News-rankings-2013My UIHC transplant team has decided that I can stop taking sulfamethoxazole-trimethoprim (Bactrim) which I use to take every Monday, Wednesday, and Friday. Bactrim is an anti-bacterial drug. In addition, the UIHC transplant team decided that I do not need to have labs every week. Thus, I will have labs once every two weeks until February when I start having labs once a month. This means that I get to have much more freedom. I can travel and stay away from home for longer periods of time and now I have less medications to take. Finally, my next visit to UIHC will be in June of next year at my one year anniversary of the kidney transplant or as I like to call it kidney adoption day.

970200_581143018593377_1471588441_nMy new medication list only includes these:

  • Cysteamine Bitartrate: 50mg cap, 11 caps 4x daily
  • Levocarnitine: 100mg/ml solution, 2ml 4x dayily
  • Mycophenolate Mofetil: 500mg tab, 1 tab 2x daily
  • Cysteamine HCI BAC: Eye solution 1 drop each eye every hour while awake
  • Sirolimus: 1mg tab, 4 tabs 1x daily
  • Prednisone: 5mg tab 1 tab 1x daily
  • Sodium & Potassium Phosphates: 250mg tab 1 tab 2x daily
  • Docustate: 100mg cap 1 cap 3x daily as needed
  • Sennosides: 8.6mg tab 1 tab 2x daily as needed
  • Sertraline: 50mg tab 1 tab 1x daily
  • Ondansetron: 4mg tab 1 tab every 8 hours as needed
  • Acetaminophen: 325mg tab 2 tabs every 6 hours as needed
  • Sumatriptan: 100mg tab 1 tab as needed

Nevertheless, I also ended up getting very sick yesterday with acute nausea, vomiting, and diarrhea, blood pressure 147/103 with a pulse of 109 and temperature of 98.9. Thus, I went to the emergency room (ER) at Alegent Mercy Hospital in Council Bluffs, Iowa. At the ER they started IV fluids and gave me zofran. They then performed serveral tests including urinalysis & culture, CBC with differential, comprehensive metabolic panel, fecal hemoccult, abdomen complete 2v, culture stool, fecal WBC, and giardia/cyrpto screen. The medial team there diagnosed me with a gastrointestinal infection and put me on the following medications ciprofloxacin 500mg tablet and prochlorperazine 10mg tablet. This is in addition, to the acute sinusitis I was diagnosed with on Tuesday which my primary care physician prescribed me cefdinir 300mg capsule.

Overall, I am doing pretty well for a post kidney transplant cystinotic (cystinosis) patient of 22 years old. My kidney function is awesome and I am gaining back all of my strength. The kidney is saving my life. My current vitals include temperature 97.6, blood pressure 126/86, pulse 102, and wight 102.8. thus, I am doing good. But, my friend Paige is not. 

Image from Help Find Paige a Kidney Facebook Page.
Image from Help Find Paige a Kidney Facebook Page.

Paige Orlinski needs a kidney to survive, she is only 12 years old. If you are willing to be tested to see if you are a match for Paige, please contact the transplant team at Egleston in Atlanta, Georgia by calling (404) 785-1405 and ask for Debbie. Tell them you wish to donate your kidney to Paige Orlinski. For more information on Paige and kidney donation please visit my post on Paige, “Save Paige’s Life and Get Tested.”

 

Medical and Life Update

SAMSUNGToday, my lab results came in from the Alegent Creighton Clinic on West Broadway where I see a new physician who is just amazing! The results are just awesome! I am doing very well for a post-kidney transplant Cystinosis patient.

Medically, I am doing good. I gained weight so I am working on loosing that. I keep having headaches but mostly I am doing good. Although, as a Cystinosis patient I must watch my Thyroid and other systems since the Cystinosis affects the entire body. I am doing more walking again. I was additionally more depressed so I think that effected my weight a bit too.

My life update, I just went to my grandmother’s today, and I plan to stay here for a couple days. I plan to help her out with some house work and just visiting with her since most of the family don’t spend any time with her. I am going on a break from most of my political organizing for the rest of the year. I am doing this because I am trying to financially (I live on Disability) save more of my money instead of spending it out travel expenses for the LB380 (Second Parent Adoption) campaign. In addition, I need to spend more time focusing on myself. I need to figure a lot of stuff out and work with my medical insurance to cover the new form of Cystagon and get my insurance to pay for the eye drops that were just approved by the FDA. I need to prepare for the next chapter of my life. The next chapter of my life, should include going back to college. I need to finish my degree in Psychology and Political Science so I can get a job at the University of Iowa Hospitals and Clinics and hopefully work in the transplant department. My goal is to move to Iowa City and go to the University of Iowa for my masters degree in Psychology and Political Science. I also hope to help out on political campaigns while in Iowa City.

US-News-rankings-2013Here are those results:

  • WBC (White Blood Cell): 6.7
  • RBC (Red Blood Cell): 4.98
  • Hemoglobin: 13.9
  • Hematocrit: 43.3
  • Platelet Count: 219
  • Neutrophils: 72
  • Lymphs%: 18
  • Monocytes%: 7
  • Eosinophils%: 3
  • Basophils%: 1
  • TSH: 1.560
  • Glucose: 92
  • BUN: 8
  • Creatinine: 1.0
  • Sodium: 138
  • Potassium: 4.1
  • Chloride: 103
  • Calcium: 9.5
  • Protein: 7.9
  • Albumin: 4.3
  • Alkaline Phosphatase: 111

Clarification: All those results are great.

Now, here is all the medications I am on including Vitamins and Sinus spray:

  1. 970200_581143018593377_1471588441_nCystagon (LTD DIST) 50 mg cap. 11 caps 4x daily
  2. Mycophenolate 500 mg tab. 1 tab 2x daily
  3. Rapamune 1 mg tab. 4 tabs 1x daily
  4. Prednisone 5 mg tab. 1 tab 1x daily
  5. Phospha 250 Neutral tab. 1 tab 2x daily
  6. Levocarnitine 10% oral solution. 2 ml 4x daily
  7. Cysteaminine Ey Drops. 1 drop each eye every hour while awake
  8. Sulfamethoxale – TMP SS tab. 1 tab every monday, wednesday, friday
  9. Ondansetron HCL 4 mg tab. 1 tab every 8 hours as needed
  10. Sertraline HCL 50 mg tab. 1 tab 1x daily
  11. Sumatriptan SUCC 100 mg tab. 1 tab as needed
  12. Clindamycin 300 mg cap. 4 caps 1 hour before dental appointment
  13. Docusate Sodium 100 mg tab. 1 tab 3x daily as needed
  14. Sennosides 8.6 mg tab. 1 tab 2x daily as needed
  15. Vitamin D 2000iu ta. 1 tab 1x daily
  16. Magnesium 500 mg tab. 1 tab 2x daily
  17. MutiVites Vitamin Gummies. 2 gummies 1x daily
  18. Acetaminophen 325 mg tab. 2 tabs every 6 hours as needed
  19. ProAir HFA 90 mcg inhaler. 2 puffs every 6 hours as needed
  20. Oxymetazoline HCI 0.05% Mist. 2 sprays each nostril every 12 hours as needed

 

What Next!?

It has been several weeks since I received the new kidney and a couple weeks since I had the Peritoneal Dialysis Catheter removed. I lately have been having a difficult time. It is hard to explain for me. But, my life begins a new, because I am no longer sick from the kidney failure and I am not needing to do dialysis every night with the PD cycler. I still have many great responsibilities with my post-transplant care from doing my vitals every day to going to the hospital twice a week for labs to making sure my immune-suppressants (anti-rejection) are taken at the right times, and finally, to dealing with all of the side effects from these medications.

This does not even come close to covering everything that has been going on. In addition, I am struggling with where I go next. I mean from November 22, 2010 I started this journey to kidney transplantation.  From that moment on I was only figuring out how to survive not really living but just struggling to survive. I had to fight to get medical coverage again because that year I turned 19 years old and Nebraska Medicaid dropped me.  I knew that the Affordable Care Act had passed and that would prevent some of the discrimination I would face of having a pre-exciting condition. But, I had no income to buy insurance and I could not work because of the side effects of End Stage Renal Failure.  Thus, I did a lot of research into what happens now that the Affordable Care Act had passed and how I could get back on Medicaid because I knew that since I was not living at home and my family was not providing any food or shelter for me that I should not be considered a dependent. Thus, I finally figured out that I could file for disability and get on Medicare. I did that and won the case and soon got a Nephrologist just a couple months before I had to start dialysis.

Then once, I finally had insurance, a lot came at me at once. I was getting sick all the time. I was on hemodialysis which made me sick too because the doctors were not experienced in Cystinosis and would not listen to me when I told that they my kidneys were still taking fluid off of my blood so do not take more than 1 kg off my blood. Most days they would not listen to me and they would dehydrate me almost every time I did dialysis which messed up my body. I now have this heart issue that seems to not get better that causes my pulse to run high when I am even at rest.

During this time I did not have much family support. I really only relied on myself to get everything done. Which made things more difficult but I became more and more resilient to all of the obstacles I was facing. Then I did a lot of work to try to get a kidney transplant and went through the UNMC Lied Transplant Center which did not work out.

Finally, I move to Council Bluffs, Iowa to work for President Barack Obama on his re-election campaign and started the search again for a kidney donor and to get on the transplant list at the University of Iowa Hospital and Clinics, where I finally was accepted and placed on their list.  And as you all know this year on May 30th I finally received the kidney and am living again.

So, here I am. Now, where do I go? What is next? What should I do?

I don’t remember what it is to just live without there being a struggle. But, I guess I am still struggling to live openly and fulling. I guess that would be because I am still unable to work and make a living because if I do get a job or a good one that is, I will lose some if not all of my medical insurance and right now there really isn’t many insurances that will cover everything I need. Because for instance my medications alone in a month cost over $3,000.  I would love to go back to school t0 finish getting a degree in Political Science and Psychology but there again is another struggle because Iowa Western Community College did not want to give me a medical incomplete when I started the hemodialysis and instead gave me an F so I lost my pell grant and cannot afford to pay that off. Not to mention the problems I had with trying to live on campus. They did not wish to let me because of my gender status of being in between genders.

Again, here I am, where do I go? What is next? What should I do?

I really don’t know how to answer those questions. I have many conflicting feelings and thoughts about what to do now. I know my physical life is much better and now I am not just surviving I am living again. I will soon be able to do many of the things I could not do and had to give up for the past 3 years. Such as, taking a bath, swimming, lifting more than 20 lbs, I can travel without tubes or dialysis.

I realize that this is a new beginning. But again, where do I start, what do I do?

Thank you for listening to my troubles. I know that there are many others in other parts of the world that don’t have these troubles. But you know,  I feel that after all the struggles I have been through, from growing up being taught that you are one gender when you really aren’t to being  so liberal minded, from not having a home, not having family support. I believe I deserve to be able to just live and not have to worry about these things that I have had to face before I was even out of high school.

Well, here I go. With the help of the support I do have now, I will move Forward!

(Sorry no pictures this time)