Alyssa is not back from recovery yet but her surgeon reports that all went well and she is making urine!!!!Hooray!!!If anyone is interested in the details, please go to Alyssadupdate.blogspot.com. Everything went quite smoothly and I want to thank everyone for their support and prayers. It means so much more than I can express to have this a-HUS Foundation family!
Added by Deborah Deffenbaugh on October 26, 2010 at 3:20pm —
I had sent my blood samples to Dr. Goodship's lab in the UK. They got back to me saying that I had an abnormal form of Factor H called CFH/CFHR1 hybrid. This, they added had an 80% chance of aHUS recurrence after a transplant.
I guess Soliris will help with this as well going by all the news.
Does anyone else here have this genetic abnormality? Any idea what this means?
Added by Kamal D Shah on October 23, 2010 at 10:03am —
ok where to start.. lil miss has been having some hearing problems and we took her into the doctor and she failed the hearing exam so we gave her an antibiotic to help with her pertruding ear drums and well it didnt help she took another test today and failed she only got one sound right in her left ear and missed one sound in her right ear. i literally feel like i could crawl out of my skin. hasnt she been through enough crap.. AHUS, hypertension, low blood levels, sleep apnea, vision… Continue
Added by lisa ann peterson on October 21, 2010 at 9:46pm —
About 3 weeks ago, Ben's platelets began to slowly fall. His platelet baseline is usually in the low to mid 200's. On Monday, October 18, Ben's platelets fell to 100. What preplexed us and the Doctor's was the fact that all of Ben's other labs were holding steady or actually improving. What complicated our evalution was the fact Ben attracted a virus that caused croup that resulted in an overnight hospital stay last Thursday. This is our first cold/flu season, so we obviously… Continue
Added by Jonathan Aguallo on October 21, 2010 at 2:46pm —
Alexion Pharmaceuticals has announced interim results
from its Phase 2 studies investigating Soliris® (eculizumab) as a treatment for patients with atypical Hemolytic Uremic Syndrome (aHUS) for adolescent and adult patients in two… Continue
Added by Linda Burke on October 21, 2010 at 12:21pm —
Sorry, it's been a while since I've been on the site - people must think I've fallen off the face of the earth.
I posted pics for our golf tourney that we held late September. We raised $9000+ again this year for the foundation.
We've been toying with Ryan's infusions and tried spreading them out 4 weeks, but his lab results showed that was too long so we are going back to three weeks again. Hopefully that will keep things stable. Ryan started 6th grade this fall and it is a… Continue
Added by Heather Still on October 19, 2010 at 4:52pm —
Added by Linda Burke on October 18, 2010 at 10:30pm —
Hello all, I am wondering if anyone on this site has both CFH and FH ANTIBODIES? If you do or you know of anyone that does can you please contact me. It's been awhile for me being on here because we have been in and out of the hospital tring to get it under control. Finally after everthing else not working setup 2 a week plasma exchange. I also need to find out more or at least other input on the soliris. Well talk to you soon. Continue
Added by Destiny Floyd-Rakes on October 18, 2010 at 10:23am —
Thanks and congrats! to Kathy and Brandi
As Kathy posted on Oct 7th, 2010 Brandi underwent a successful Pediatric renal transplant using a solaris/plasmaphersis preconditioning protocol developed and approved by the multidisciplinary renal transplant team at the University of Iowa. As a group we are very excited about the potential for moving forward in the management of aHUS. We are happy to entertain questions you may have. Thank you for allowing us to be involved with the foundation and… Continue
Added by Patrick Brophy on October 16, 2010 at 11:42pm —
On Oct. 7, 2010, Brandi had her second transplant. We had lost her first transplant due to AtypicalHUS, at the time she wasn't diagnosised as having HUS until after we lost the transplant. Her own kidney's had been so damaged that they were not able to tell what had happen, with the transplanted one, they were able to do a biospy and discovered the cause. Didn't want to say anything until Brandi was out of the woods, so to speak, but as of this morning she is doing super and we are planning… Continue
Added by Kathy Yates on October 16, 2010 at 12:30pm —
Is any body here struggling with TTP (Thrombotic thrombocytopenic purpura)? My friends douther just got her tests results, and it is not HUS, but TTP.
Added by Zofia on October 14, 2010 at 1:46pm —
I am curious as to how many aHUS patients need transplants? Is it just a matter of time before each will have to endure this or does it depend on other factors?
Added by Sharon Madrid on October 13, 2010 at 4:52pm —
Our long awaited transplant date is upon us--on October 26th Alyssa will have her transplant with Soliris. We are very excited to begin this chapter of our lives. The past year and 8 months have been grueling and Alyssa's young adulthood very different than what we had always envisioned for her. She is understandably nervous and experiences panic attacks when she realizes this is all about to happen. She is also more ready emotionally than she has been and admits that her brain knows that it is… Continue
Added by Deborah Deffenbaugh on October 13, 2010 at 12:14am —
Hi everyone - updating before our next clinic but there's been alot going on around here!
I'll start with the 'business' - we have been going round and round and round on alot of things with the transplant team, our docs, our insurance, etc. since Hyde had his kidney transplant eval and we had a care conference today with our nephrologist and our transplant coordinator and I think we finally have a few answers and a game plan in place. We 'think' we have the experimental drug… Continue
Added by Phyllis Ann Talbot on October 12, 2010 at 4:41pm —
Sitting here thinking I should write an update for Matthew. He turned the wonderful age of 1 on Aug. 27 and was home with a fever and rash. Way to party, and he did with his big Smile and alittle frosting on the side:) He has been doing pretty good since earlier this year. We always seem to find the bug or virus at least once a month, but nothing the little guy hasnt been able to get rid of. Recently within the last month, we still cant seem to rid that icky rash as it seems to come and go… Continue
Added by Kristina on October 7, 2010 at 9:32pm —
Woohoo! Guess what? We only have to have kidney doc checkups every 6 months now! Tristan weighs a beefy 40 lbs now at 2 1/2 years. He's a tank. He's starting to swallow certain foods. Especially goldfish crackers. But now we have to follow a pretty strict renal diet as he progresses with his eating. We are starting to wean him off of his tube feedings too. So far he's been replacing the bolus we took away. But he is still super picky about his food.
We have to eyepatch his good eye… Continue
Added by Wendy Flinn on October 6, 2010 at 9:30am —
I was so happy to come across this website, as I have been searching for some type of support and information regarding this disease. My 10 year old daughter was recently diagnosed with aHUS. In May of this year I took her to the doctor because it looked as if she had blood in her urine. It was confirmed that she indeed had blood in her urine however for reasons nobody could explain, all tests came back normal, which included blood work, CT's, ultrasounds and UA's. Little by little I noticed… Continue
Added by Sharon Madrid on October 5, 2010 at 12:02pm —
Today, we had a visit from the newest Child Life Specialist, and as she was familiarizing herself with our family history, and the foundation she seemed very interested in how it all began. When I was finished with my story, she informed me that she had once been a cancer patient here and that her mother started a program called Baskets of Hope.
Baskets of Hope is an organization of volunteers who raise money to fill baskets for holidays for the parents of sick children. Her… Continue
Added by Cheryl Biermann on October 1, 2010 at 11:52am —
Well, currently I'm in my senior year at Medaille College, getting ready to go ahead and take my state exam to become an LVT. I'm nervous, but excited at the same time.
On another note, I didn't have a very good treatment on Wednesday :( I ended up getting an infiltrate and my nurses were looking at me to give them an answer of what they should do about it. By the time someone could fix it, it was too late. But, I am doing better now, it doesn't hurt as bad, but I did have to… Continue
Added by Jessica Olivia Frysz on October 1, 2010 at 9:11am —