Univ of Iowa Pediatric Transplant

[Patrick Brophy]

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 allowing us to post this. Patrick Brophy MD

[Deborah Deffenbaugh]

Thanks for getting back to me so quickly. We have discussed this with Alyssa's doctors and the decision was made to wait and see how things go for now. She is on blood thinners and we would rather not risk a bleeding issue unless the procedure is essential and her doctors agree that it may not provide any additional information than all her blood work does for the time being. They will watch her labs closely as she increases the time between Soliris to two week intervals. Thanks again for your input.

[Patrick Brophy]

Hello Deborah
Our protocol does not have any stipulation for surveillance biopsy in our eculizumab induced transplant patients. We use standard clinical/laboratory transplant and aHUS indices to make our decision whether or not to biopsy.
It would be best to talk with your physicians and ask about their rationale for wanting to do a biopsy.

I hope this helps and good luck

Pat Brophy
University of Iowa

[Deborah Deffenbaugh]

Hi Dr. Brophy. Alyssa's doctors are advising us to have a kidney biopsy done and that it is the Iowa protocal to do a biopsy. Alyssa is not showing any signs of rejection and we are just wondering why it is necessary and wondered if you could explain if it is Iowa protocal and why. Thanks for any insight or input you can provide As you can imagine, we don't want to put her through unnecessary procedures after all she has already been through without understanding the reason for it.

[Patrick Brophy]

Thanks Linda
Indeed this appears to be the first one in the US (maybe the Western Hemisphere). Thank you for your kind comments. We are very excited about this and hope to continue to define treatment options for aHUS and other Rare Renal Diseases through our multidisciplinary clinic.
Pat

[Linda Burke]

Thanks for posting, Dr. Brophy! The Foundation for Children with Atypical HUS is proud to be partnered with the University of Iowa for aHUS research and genetic testing. I'm sure members of this website join me in sending congratulations to the University of Iowa's nephrology and transplant teams for its ground-breaking renal transplant with Soliris therapy - the first in America, I believe.
Behind Iowa's innovative protocol and leadership in the field of aHUS research and testing is the patient/family story, and we beam with joy at this life-changing event for Brandi and the entire Yates family. We look forward to the upcoming posts noting Brandi's continued recovery and her path to a bright, happy future. There ARE happy endings.....and we appreciate all who have had the vision, the compassion, and the commitment to ensure a better quality of life for those struggling with aHUS issues!
For readers who have questions regarding kidney transplants with a Soliris therapy protocol, I'd like to remind you that every aHUS case presents a different and varied scenario for physicians, requiring detailed analysis of each patient's situation and lab values. Therefore, I urge you to have your physician contact Dr. Brophy or others listed in our Home Page's "Doc to Doc" directory, and for those doctors specifically interested in Soliris to have the physicians directly contact Alexion Pharmaceuticals at www.alxn.com .

[Patrick Brophy]

Hello
The question posed by the Biermann's is an important one that must take into account a number of factors. The decision to do either is based on the patient's status: dialysis dependent versus not, size and age of the patient, type of genetic mutation (if known) and status of transplant match, among others. Each must be carefully considered by the folks involved in the decisions (especially families!). The rationale below is our approach and likely needs to be tweaked to take into account each unique aspect of the patient. Most of the time when we perform pheresis we replace with Plasma (or FFP). Sometimes you can get away with FFP by itself. In the case of pheresis you remove the plasma and give back FFP (which contains normal factor levels). Part of the decision to use pheresis in the case of transplant stems from the fact that pheresis may also have a benefit in removing circulating antibodies to a potential donor. We also use this because we can remove the extra fluid (that we cant when we use FFP alone). This is really important for those folks on dialysis with limited urine output- this way we dont fluid overload our patients. For our transplant population with aHUS I would probably want a central line for the transplant itself. While I realize that this is invasive, I think it is important at this time as we are entering a new phase of potential treatment for aHUS and want to have our bases covered with all options available. I hope this sheds some light on this decision.
Patrick

[Cheryl Biermann]

Dr. Brophy,

I cannot express to you our thankfulness to you for the developement of protocols for our population when considering a transplant with Eculizumab and for your great care of Brandi. It is an exciting time for us; I don't think anyone can really understand the joy of finally reaching a point where we can all go beyond the crisises, work and perserverance to finallly have the light of hope for our loved ones.

We have all heard conflicting opinions on whether or not to also treat with pheresis or plasma; and for those of our population who have had their central lines removed, I imagine it is an added stress to their preperation considering a transplant. Would it be possible to share how you reach a decision whether or not to use the pheresis or FFP infusion?

Again, with a tremendous amount of appreciation for your participation in our foundation, we thank you.