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)