God’s Plan for My Life, My Politics, and My Health

tagline1Yes, 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.

US-News-rankings-2013I 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. 

cystinosis_research_foundation_partnerI 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.

Pre-op with family
Pre-op with family

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. 

Jon and me after our surgeries!
Jon and me after our surgeries!
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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)

UPDATE on MIKA!

PD Cycler
PD Cycler

 

 

 

 

 

Medically, I am a about the same as last time I wrote a post. Nevertheless, there has been some changes. For instance  I am now on Automated Peritoneal Dialysis, that I do at night using a machine called a cycler. This form of Peritoneal dialysis is great because I just hook up to the machine before I go to bed and then when I get up in the morning I unhook from it and go about my day without having to think about doing dialysis. This gives me a lot more freedom now. I still cannot just get up and decide to travel or fly to Washington, D.C. whenever I wish to (not that I have the money to do that). But, I still have a lot more freedom. If I do wish to travel I have to plan it ahead about 8 weeks so that I can have baxter deliver my supplies to the location I am going to. Then I have to carry my cycler with me however I choose to travel.

Jon Von Kampen and some other people are still getting worked up by the Transplant team at the University of Iowa in Iowa City.  Jon has transplant evaluation appointments at Iowa City on April 3 so I will be going with him to provide transportation for him (and to be sure he gets his ass there). Needing a kidney transplant is kind of a very serious thing. This kidney transplant will save my life. I am personally and professionally very thankful that Jon has stepped up again.

photo (1)Professionally, I am quite busy. I am working on the passage of Legislative Bill (LB) 380, to provide joint adoption to unmarried couples and qualify provisions in the State statute to provide second parent adoption. This week we have a pizza and postcard party for LB 380.  Through Forward Equality and MoveOn.org I have supplied postcard and pizza for this party. At the party we will fill out the postcards to be sent to members of the Nebraska State Legislature in support of LB 380. Currently, LB 380 is in Committee which we hope to get out of committee soon.

If anyone wants more information on LB 380 or would like to help out with making postcards and having free pizza please go to this page: https://forwardequality.wordpress.com/2013/03/14/tell-the-judiciary-committee-to-support-lb-380/

Medical Update

Hi,

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 mika.covington@yahoo.com.

*All information provided above was provided by the University of Iowa Organ Transplant Center.

2013 Drunk Queers/Pissing/Transplants 2013 Good or Bad???

2013 for me starts out at the Flix in downtown Omaha. The Flix is a queer bar. It is not the best queer bar in the town by the way. Anyways, I am there with a friend and after they do their little ball drop some dumbass kid who likes to go around and try to kiss and touch all the guys he likes there goes up to the wrong queer and tries to kiss him. This guy pushes this kid away from him and the kid falls back into this older queer and drinks fly and spill all over my friends and the old guy falls off his chair. It was a mess. If I were standing where my friend was I probs would have gotten injured. So Bad or Good?

After that event we decide to leave and go to the MAX which is a Queer Club in Downtown Omaha. A nice one by the way. Well we get there and they are not allowing any more people in.  So Bad or Good?

We decide to go to the friends place to sit for awhile I and would read more of the book I got for Christmas called Dune. Well, we are sitting there and I am reading. When the friends roommate comes how drunk off his ass with is friend. They sit there and be drunk and then finally the roommate’s friend passes out on their couch and the roommate goes up to his bed room to sleep. Well the roommate’s friend gets up drunkenly and moves to the dinning room and stands there mumbling something and then heads to the kitchen where he proceeds to piss on the kitchen floor. I get up and leave.  Oh and by the way this all happens within the first three hours of the new year. So Bad or Good?

Then this week I get word from my prospective kidney donor that she cannot donate her kidney to me. She explained that there were some concerns with some of her results and that it was not her choice, because she really wanted to donate the kidney to me. I am personally greatly thankful that she had the courage to take the steps to even try to donate her time and her kidney to me. It is unfortunate that things did not work out.  So Bad or Good?

Nevertheless, because of the transplant being canceled it has made me feel I must take a stand and get my story out there. It has also made me decide I should go to Denver to get listed there as well as in Iowa City.

But, I must point out that this is a major set back for me professionally and personally. I was indeed really counting on this transplant to work out and hopefully get it done in February so that I could move forward on other matters that are very important to me. Needless to say, that medically I am not doing the best.

Before I end this blog post I must point out the fact that I have not been blogging much lately. It could have something to do with the fact that I am more sick then I was before. It might have something to do with the fact that I continue to have set backs with my transplant. It might have something to do with the fact that most of my family does not support me and more than one of them has actively lobbied against my civil rights and/or supports churches and groups that actively lobbing against my civil rights. It could also have something to do with the fact that from the beginning before I started this blog  and before I really spoke out about what I think that I was actively attacked by many of the stuck up queers in the State of Nebraska. These queers have sought to destroy anything and everything I have worked on all for their own personal interests.