Today I will be leaving for Bethesda, Maryland to go to the National Institutes of Health (NIH). I am going to the NIH because I am in a clinical research trial for my Cystinosis. We are working on a cure and better treatment for Cystinosis. I will be at the NIH through Wednesday October 17. While there, I will have almost a full work up. I will have some bloodwork, Echocardiogram, Pulmonary Function Test, Ultrasound of my kidneys, Dental exam, EKG, and Eye checkup. On the last day of the visit, I will meet with Dr. William A. Gahl and his research team.
I have been seeing Dr. Gahl from since I can remember. I have basically grown up at the NIH. Some of their nurses have taken care of me from when I was a binky baby to now being a 21-year-old person. So many memories there. Some of them are some really awesome memories and some of them are not so much. See the last time I was there I got the news that I would need to get a kidney transplant and this year I am worried what I will hear. Nevertheless, I know that there must be something negative because I am in the final stage of Cystinosis but yes, it is the longest stage depending on how well your medical team and support teams are and how compliant you are as a patient.
Well, I have been a compliant patient but there was a period that I did not have insurance to cover my medications and so I did not get the medications that I need for almost a year that would help prevent the illness getting worse. Now, I could have had my kidney transplant a year ago but I face discrimination based on my gender identity at the UNMC Transplant Center in Nebraska. Therefore, I am now working to try to get the transplant done this winter at the University of Iowa Medical Center.
So anyways, I happen to be very nervous for this trip that I am actually having an anxiety attack worrying about that will happen while I am there and if they will tell me some really bad news. So please everyone please keep me in your prayers, thoughts, and send me some positive energy. Thank you so much!