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.)