The Foundation for Children with Atypical HUS

A month ago I had an individaul come to me offering to donate a kidney transplant. Last night at the time of 8:38pm, I get a phone call with a laughing tone on the other end, telling me that he is going back to his ex to get married and that I am not to receive his kidney. This brought my hope level up and now I'm hurt, and have dealt with disappointment long enough. I'm ready to find a donor, or just accept a deceased kidney at this point, to be honest. It seems like as my hope goes up, my courage ends up going up, and then all of a sudden it's brought down again. Depression is not a good thing. I'm not crying over a selfish individual (even though I want to call him more than that, but am being discreet) . I feel that if you are going to offer an organ, you should follow through, but it's the idiots that don't understand this.

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Comment by Heather Still on March 12, 2010 at 7:50am
So sorry that didn't work out. I think that a living donor situation often has setbacks and disappointments. My siblings were being tested to donate to my sister at one point when the doctors discovered research that showed related donors and aHUS isn't a good idea because of the possibility of the donor developing aHUS. My sister and my brother were both perfect matches for her. She did well at shielding her disappointment, but I know she was heartbroken. She was on the list for 3 years and the night we got the call for her transplant was something I'll never forget. We were celebrating her hope of a better life while another family was mourning the loss of a loved one. She has had a successful transplant now for 5 years. I hope that your time comes soon!!! Hang in there.
Comment by Amy Swarbrick on March 11, 2010 at 12:20am
That really pisses me off! Uh oh, did I say that out loud;) You must have a better kidney out there waiting for you because we all know you deserve it! Good luck Jessica and I will keep you in our prayers.
Comment by Jessica Olivia Frysz on March 10, 2010 at 10:23pm
Thanks for the support everyone! Things are getting better, little by little each day. I tend to do things to keep my mind off of the situation, such as going to my preceptorship and taking care of those animals that are in need, that look to me to comfort them, because I understand. I had a beagle with renal failure keep her eye on me, she must've known something, because she was just watching my every move. As I went up to her cage, she would wag her tail and come up to the door of the cage, somehow she knew something. I am not letting this depress me, because there is someone out there (family or not) who is willing to give me a kidney, and who knows....it would be nice to find my significant other in the near future, but I'm not jumping to any conclusions.
Comment by Grace on March 10, 2010 at 6:49pm
That was an incredibly thoughtless way for your potential donor to deal with the situation. Unfortunately, most people out there don't have the requisite maturity to bow out gracefully when they're in over their head. It must have come as a nasty shock for you. I know you'll bounce back strong, ready for a better kidney that's waiting for you.
Comment by Cheryl Biermann on March 10, 2010 at 11:51am
What a dissappointment! It is so sad to see such immaturity in people. Just remember these people are the exception, but because we are all so shocked by it shows you most people wouldn't think of doing something like this. Why does it seem to happen to people who are the most fragile, I'll never understand. I only know that you are strong, brave, courageous and a much better person. To allow this to depress you would only give the action a power it doesn't deserve. Think of it as one unexpected hill in the mountain range of life. We'll keep praying for you...
Comment by Zofia on March 10, 2010 at 2:11am
So sorry. I'll pray for You. You are amazing, brave, young woman. I think of You so often. Don,t give up!
Comment by Linda Burke on March 9, 2010 at 8:39pm
Few people can understand the angst involved with your current situation - I'm sorry that you've had to deal with this turn of events. It's said that when one door closes, another one opens....so keep the faith that a better opportunity will arise. May a door or window with a gorgeous view soon open for you!
Comment by Svetlana Finley on March 9, 2010 at 2:53pm
Sorry to hear about this, it must be very hard, but don't give up!!! God has plan and He will find you awesome kidney!!. We are praying for you!!

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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?
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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
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It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
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