Question, probably for Bill & Cheryl....It's time again for my company's United Way campaign. Last year I designated my contribution to the aTypical HUS Foundation as a 501(c)(3) tax-exempt organization. I obviously want to continue to do so and encourage others to as well....my concern is - is the money really getting to the foundation?!
Posted on October 12, 2011 at 9:10am — 4 Comments
Hi Everyone!
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…
ContinuePosted on June 24, 2011 at 5:46pm — 2 Comments
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:…
ContinuePosted on June 17, 2011 at 9:34am — 11 Comments
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…
ContinuePosted on June 14, 2011 at 8:31pm — 10 Comments
Linda Burke said… Linda Burke said… Hi Dana,
Just checking in for an update and to hear some new good news about Jack....
Linda Burke said… Hi Dana,
Hope things are progressing well with Jack's transplant team and all the things that need to be processed in order to be "listed'. Have you gotten insurance approval for Soliris already, or is that still an ongoing process?
It's interesting that several of our aHUS kiddos have vision issues, so if Jack's nephrologist has some articles, I think everyone would appreciate the info. If you'd prefer to email the articles to me at Linda@atypicalhus.org , I'll be certain to post them. Best wishes...please keep us posted.
Cheryl Biermann said… Cheryl Biermann said… Linda Burke said… 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.
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