Well, life in general has been good, I've gotten over the fact that my potential donor backed out on me. Ever since that day, life has been a roller coaster. My own mom brings up a point that she would like to get tested again, but we have one mian issue on our hands and that is Facter H. Would the factor H be a problem? My mom contacted my very nice and helpful transplant coordinator at Johns Hopkins to see if the factor H would be an issue, she is going to take that up with the team to see if there is some kind of hope that could come out of this. A day after my mom says this, my potential donor contacts me again, and says that Johns Hopkins contacted him, asking if he is still interested in donating, loan and behold he says to them that he is still willing to donate. I'm being confronted by another person at my school who would also like to be tested, it's strange how God works, but somehow he will choose the right one. It would be nice if my mom could donate, she has been wanting to do this since I was first diagnosed, but she was never a close match, only my dad was. My sister says to me today that she would be more than willing to donate, however, she wants to have kids, and in order for her to do that, she needs 2 kidneys to do that, if she gave me a kidney now and then tried to have children, it would be putting strain on her body. As loving and generous my sister is, I can't accept that gift from her, not right now since I do want nieces and nephews someday, so she is my back up.
It has been, without a doubt a roller coaster ride, my life is never ending (good thing). I've been keeping up in school, got keep up there, or else I'm in trouble. I have my fistulogram on Tuesday at 12pm, and who knows, maybe I can go and watch my dance class (if all goes well). My preceptorship- Oh my gosh, I'm enjoying that! I've intubated so many dogs, that it's not even funny, I've collected blood, ran hearworm tests, have heat fixed and stained some ear smears to look under the microscope, have restrained some animals, including a guinea pig, have taken and developed x-rays of some interesting animals. I have seen some very interesting surgeries as well, all in all I know this is what I want to do, but in maybe a zoo or aquarium setting. I enjoy animals behavior as well, so who knows, maybe somewhere doen the line you'll be seeing me in a seaworld show or something hahaha.
Comment
Comment by lisa ann peterson on March 19, 2010 at 12:40am
Comment by Cheryl Biermann on March 14, 2010 at 1:33pm WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
************************
NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

© 2012 Created by ALPHA MARKETING.
Powered by
You need to be a member of The Foundation for Children with Atypical HUS to add comments!
Join The Foundation for Children with Atypical HUS