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!
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 firstname.lastname@example.org
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.
This week has been a very busy week and a horrible week. This week I have been very sick. I keep running temps over 100 and vomiting. I ended up in the hospital where they kept telling me, “you may or may not have an Infection and you may or may not have Hep C or something else. We really just don’t know what is going on.” So they sent me home because at that moment it looked like I was doing better.
But in reality I was not doing better and I become more sick. I started having more vomiting and temps over 100 which I did not have in the hospital and very loose stools. In addition, I started getting pains in my right side all the way back to my kidneys. (I am having that pain right now).
So when I went to my dialysis center for my clinics I met my dialysis Nurse Practitioner who is the best and seems to be one of the best is worried about how I am doing. In addition, asks to look at the blood results from the Nebraska Medical Center whom did not tell me what those same results were when they were discharging me.
So she looked at the results and was surprised by them. She was informed that my liver enzymes were increased but did not know that they were that increased. Therefore, she said that I have some liver issues but is unsure what they are. So she has ordered more blood tests to see what is going on with the liver and she is checking the pancreas just to be sure.
What I do finally know is that I do not have an infection. They have rulled that out completely. Something else is going on here and she is worried.
Unfortunately, this may cause some issues with getting my kidney transplant and may post pone the transplant for months depending on what is going on here. I am very upset about that.
As I said this week has been very busy and troubling. I am very upset with everything going on. I am worried. I am sick. I am sad. I may even be falling into a deep depression. I am lost. Maybe this is what is like to finally grasp how serious my condition is. Maybe it wasn’t until now that I have realized my days are number and I am just getting worse.
So my question for the universe, What do I do now?
I have some very good news! The University of Iowa Medical Center will transplant me!!!!!! At this time, I am mailing out information packets to all my prospective donors for them to review the information and fill out the paperwork and mail it in to the UI Medical Center. Once the UI Medical Center receives the paperwork and call them and set up appointments for them to come in and get worked up to see if they are a match to me, we will then start talking about transplant surgery dates!!!! This is some fucking awesome news people!!
In addition, they do want to see the results from my endoscopy and my TB tests and call the notes from my dialysis center. Plus, they do want me to have on going sessions with a psychologist. Here are their exact words for why they want me to see a psychologist, “you got a lot of problems.” LOL I think that is a LOL moment because they are talking about my illness, relationships, family, being queer, and being genderqueer. I have a lot of stress in my life and I agree with them I should see a psychologist to work through all the stress and major life decisions I will need to make.
Therefore, I am working on all that stuff while preparing to go to the National Institutes of Health in Bethesda, Maryland on October 14th. There they will work me up to see how the Cystinosis has progressed and where I am at right now. I really hope to have at least some good news to bring back but IDK if I really will. I am in end stage Cystinosis and Cystinosis patients usually only live to be about 30 and I am 21.
Well some other news, I have not fought the University of Nebraska Medical Center Transplant Center yet for all the shit they put me through but their time is coming up fast. I am still so hurt and pissed off at them. They put me through so much shit and I really did hold it together. I did not fall apart when they told me that they were canceling the surgery that would save my life and I did not fall apart when they told me that they would not treat me there any long. Now that I have moved over to Iowa and I am a patient at the UI Medical Center, the time might be now to take action against the hateful UNMC Transplant Center! (I am not going to take any violent actions against them. There might be a protest but that would be about it. Maybe even a sit in sometime after my transplant at the UI Medical Cetner.)