I have been on dialysis for 14 years now. 14 years! Gosh, that's long! I was diagnosed with aHUS in July 1997.
A few months back, I started noticing my skin become increasingly brittle, prone to cuts. I also started getting blisters on my hands and feet. I showed this to my nephrologist who asked me consult with a dermatologist. The dermatologist said this could be a condition called…
Jack came home from the hospital on Monday - this week was a little overwhelming, just trying to adjust to the sudden, new and different lifestyle. Clinic twice this week - modifications to some meds; phosphorous, potassium and magnesium on the low side, so taking supplements. Otherwise, he is feeling great and it's amazing how healthy he looks! We still want to shield him from the outside world, but are trying to be sane about it.
I had taken…Continue
Please see the latest publication from the University of Iowa.
Added by Bill Biermann on June 24, 2011 at 3:00pm — No Comments
As you know, following, approximately 5 years of dialysis we are persuing a transplant with Eculizumab. Private insurance becomes secondary to Medicare, (required by law), after 30 months of dialysis, so we approached Medicare for Compassionate Use of Eculizumab. Medicare does make some exceptions, but aHUS is not one of them. Their policy is neither approval or denial, they just do not comment at all! We spoke to another family in the same situation, but who had TWO additional insurances…Continue
Contaminated foods have caused illness and death in many countries throughout the years, but current reports of E. coli outbreaks in Germany are a serious issue in global news. First appearing in May as a concern for those traveling to or living in Germany, a new and virulent form of E. coli has proven difficult and complex to treat. In very rare cases this bacterium can cause STEC-HUS, or shiga-toxin…
Added by Linda Burke on June 20, 2011 at 11:44pm — No Comments
Well, it's been a while since my last post. Let's just say that I didn't want to make myself out to be bragging on how wonderful Brandi has been doing since her tranplant, but wonderful she has been. We are hitting a little over 7 months since her transplant, and things have been going fairly smoothly. About a month ago, she got a bad kidney infection and had to stay in the hospital a week, but has recovered from that nicely. She has been fighting off a nasty virus, that doesn't allow her…Continue
Jack moved from ICU to the Transplant unit Wednesday night. The staff is great - very intent on educating us about the new med regiment - meds to fight rejection, infection, hbp. Central line for dialysis was removed yesterday:)!Electrolytes have been on the low side, so Jack is getting IV sodium, magnesium, phosphorous, and drinking those delicious potassium powered drinks.
This morning's labs include: Creatinine: 0.51, HCT:…Continue
Added by Linda Burke on June 16, 2011 at 11:30pm — No Comments
I am 29 years old and diagnosed with aHUS two years ago. It was scary for me because I had never seen a hospital bed before that - except when I was born. After recieving LOTS of plasma pheresis and some dialysis, I got better and even though things weren't perfect, they were good enough to not have treatments and lead a somewhat normal life. I did have to take blood pressure medicine but other than that, nothing was all that bad. Well, this past February, I had my second relapse,…Continue
Hi, I am a mother of 4 (plus 2 stepchildren) and have recently remarried (hence the photos!)
I have had 2 children affected by aHUS. In 1993 my 4 month old daughter Jaimee was diagnosed with HUS. She became very unwell and ended up on peritoneal dialysis. Very sadly we lost Jaimee at 13months old. Her HUS was thought at the time to have been caused by an ecoli infection. Twelve years later my oldest daughter Kasey became unwell and was also diagnosed with HUS although this time…Continue
We received 'the call' from MGH on Sunday afternoon and Jack was in surgery at 2:00 am, Monday morning. He received both plasma pherisis and his first dose of Soliris prior to surgery and had a second infusion of Soliris last night. Before getting off the operating table he had already produced a liter of urine...his latest creatinine level today was .9. In the PICU now, but will probably move to the Transplant unit…Continue
SAVE THE DATE:
The University of Iowa has graciously volunteered to host the 3rd "Atypical HUS Parent Conference" . This is a great way to meet the top medical Professionals while socializing with parents at the same time. Here are the specifics:
Friday, Oct 7th Early Arrival 7:00pm Meet and Greet
Dinner sponsored by the Foundation
Saturday, Oct 8th The Confererence at the University…Continue
Join Dr. Tim Goodship at Newcastle upon Tyne for the UK's 1st Atypical HUS Conference on June 11, 2011. Details are at www.aHUS.org.uk .
The Center for Life (A Centre for World-Class Science) is the…
Jack had been feeling unwell all week, plagued once again by abdominal issues, and did not make graduation last night. He put in a good effort, arrived at rehearsal with cap & gown, but became sick before the march began. So, we all turned around and came back home....a letdown, but the good news is that he is feeling better and better today.
On the bright side, the Hemodialysis clinic threw him a spectacular surprise party yesterday morning. (Steven and I knew, but Jack…Continue
IF anyone is interested - here's the link to a letter in the NEJM where Soliris (Eculizimab) has been used in treatment of normal HUS after ecoli. If you google German eColi and Soliris - there are a flood of stories out there - Alexion is actually offering the drug free of charge in Germany when requested it looks like. Not sure how this affects us but definitely interesting.
In Europe, we face an outbreak…Continue