Alexion Pharmaceuticals, makers of Soliris (eculizumab), asked the Biermanns and I to participate in an advocacy meeting on August 5th, 2010 to discuss issues regarding aHUS patients and families. We very much appreciated their kind invitation to visit Alexion Pharmaceuticals in Conneticut to speak with senior staff. In… Continue
Added by Linda Burke on August 31, 2010 at 3:00pm —
I had sent my blood samples to the Mario Negri Institute in Bergamo, Italy for genetic testing. They could do only the ADAMTS13 gene and for the rest of the tests, they got back saying that the DNA could not be extracted!
I have no idea why. I am really disappointed because I sent the samples in March this year and have been waiting anxiously for the results. The results would have helped me decide about a second transplant (first transplant Nov 1998 - HUS recurrence). A… Continue
Added by Kamal D Shah on August 31, 2010 at 4:25am —
I know I'm not on here much, but here's yet another awaited update. I'm enjoying my last full week of freedom before I head back to classes next week on Sept 7th, where I will be taking my place as an upperclassman as a Medaille College senior classman. This is going to be a hectic year, with all the responses I've been getting from people who want to get tested for me to donate a kidney to me. I've been getting emails and phone calls from people from other… Continue
Added by Jessica Olivia Frysz on August 30, 2010 at 12:48pm —
Ania is doing well. She just turned 8 on Aug. 26th. She gets FFP
every twelve days, b
ut we will try to extended times between getting FFP to 14 days and even more. She is on ramiprilum, losartanum kalicum,… Continue
Added by Zofia on August 30, 2010 at 4:43am —
Ben is doing well. He just turned 5 on Aug. 24th. In the hospital CHOP a few times this summer. Treatment FFP and Steroids did the trick. He was home each stay within two days. Much better than before. Still gets FFP every ten days. On lisinapril for BP. That seems to work for him. Waiting for lab results from Iowa from Dr. Brophy. Thanks to this web… Continue
Added by NATALIE WALLACE on August 28, 2010 at 9:01am —
lil miss had her check up on wed and well the kidney function is better whoop whoop... her blood pressure is 119/78 and her hemoglobin is 10.6 and her hematocrit is 27 and her platlets are 220 and her albumin is 3.4.. we also found out that the protocol for solaris is supposed to be approved in november i dont know much more but that hopefully by the end of the year she can do the study but she has to relapse first.. i keep hearing diff dates but dr. h said that it should be approved by… Continue
Added by lisa ann peterson on August 27, 2010 at 11:48am —
Hi there everyone - I'm late updating from this last clinic honestly because we are in a bit of a funk. A little bit stalled on the medical stuff - so I'll run through that and then get to the fun stuff ;-).
For the #'s folks - things are rocking along, Potassium of 4.3, phos of 8.5 (this is back up this month so they may change around some meds), BUN 44, creatinine 10.5, Platelets 215 and HGB and HCT down a little to 9.1 and 26.2. We are increasing his Aranesp from every 2… Continue
Added by Phyllis Ann Talbot on August 27, 2010 at 11:16am —
Has anyone heard about the new drug TT30? I just came across this link:…
Added by Kamal D Shah on August 25, 2010 at 10:21am —
I finally got to talk to my brother and he said Ben has the factor H gene mutation. He said the type of mutation that Ben has is a very mild form of AHUS. According to his facebook post, they are going to do plasma infusion once a week for a month. The other option that they have is Soliris. The doctors do not seem to think that any of the other children have this but if they do, they do not believe it will become active. He also said that if any of the children or my son gets AHUS, they would… Continue
Added by MARCIA AGUALLO BAKER on August 22, 2010 at 10:12pm —
Hello everyone! We finally got some of the long awaiting genetic testing back on Ben and it looks like one of the test came back showing it is genetic. I am not sure which factor it is yet because my mom couldn't remember. This makes me very concerned for the other 2 children my brother has. Can anyone please fill me in on what this means when it is genetic? Does both parents have to be a carrier or just one? Also, what about my son. Is there any other family members like cousins that have… Continue
Added by MARCIA AGUALLO BAKER on August 20, 2010 at 8:45pm —
Well this mroning at 10:50am, I received a phone call from my transplant coordinator. My cellphone was turned off from the night before, so that I could get some decent sleep. She tells me that she has no further information for me, until she gets some more paperwork from one of my other doctors. UGH this is taking such a long time to get some answers around here, I'm trying to find a donor;two of my professors also want to help me out in the perspective, but unfortunately I have to wait… Continue
Added by Jessica Olivia Frysz on August 19, 2010 at 2:02pm —
Hello everyone! Ben is still holding his own and is such a fighter. He had a really rough night. They tried to decrease his Lasix and developed fluid in his lungs again. He still continues on the Milrinone IV heart medication and 3 other blood pressure medicines. He is on a total of 2 diuretics, a seizure medication, and iron supplement. They had to do 2 more pheresis treatments and tryin to find the right balance has been very difficult. They are discussing the Soliris drug again but not heard… Continue
Added by MARCIA AGUALLO BAKER on August 11, 2010 at 8:31am —
Hi everybody. It's been awhile since I've posted so I thought I'd give a quick update on Brody. It has been one year this month since his last plasma infusion. Is it possible to hold your breath for a whole year???
Currently we are getting his labs done every two months. Last labs showed his LDH slightly above the normal range. Everything else was good though, including his Haptoglobin and C5 assay. So???
Other than that Brody got his cast off two weeks ago finally. Which now I… Continue
Added by Amy Swarbrick on August 10, 2010 at 1:04am —
First I cannot thank all of you enough for all you have done. You have not only helped me but now are helping my mom through this difficult time. She finally was able to post something on the site and all she kept saying was how wonderful you guys are. I am not sure where to start on all the news. First thing is Ben did make it through the heart catherization. His heart is still functioning at around 7%. We were hoping to find the cause but it told us not only was it not bacterial but it is… Continue
Added by MARCIA AGUALLO BAKER on August 8, 2010 at 9:02pm —
I was wondering if anyone of you have used any other treatment other than dialysis to treat high potassium levels as a long term treatment???
Ash has been constantly having high potassium levels and his docs have been using resonium to bring his levels down and that is effective however the docs say this is not a good long term option. I asked Ash's doc if there is anything to treat it with long term other than dialysis and he didnt really give me a straight answer which makes… Continue
Added by Kerri Grey on August 7, 2010 at 7:22am —
Does anybody know if AHUS can reccur once your kidneys have already been damaged? My son doesn't seem to have been ill since he 1st went into hospital on June 22nd 2009 (has been on dialysis since). I just dnt know if it would show again and how it would appear as like I said his kidneys have been completely useless for 13 months x
Added by Stacey on August 2, 2010 at 1:06pm —
Today Ben is having a heart cath. He has had aHUS for 4 months now. His HUS is fairly quiet, labs look great. His heart has moved to the front of the line. Due to the fluid in his lungs, they thought initially that he had pneumonia, wrong, it was cardiomyopathy. That was about 5wks ago. With meds, they got his heart to pumping at 25%; two days later back to 15%.
Over the weekend, his heart is only pumping between 7 and 12%. Of course this causing his lungs to be very wet.… Continue
Added by Virginia (jenny) Aguallo on August 2, 2010 at 11:56am —