Transplant Time - #1 10/25 - 9:00pm

Jen & Alyssa - What a Team!

First Soliris Treatment

The waiting is over...we are all sitting in Alyssa's private room in the University of Rochester Medical Center (URMC.) After a rather loud, “Glee” filled ride to the hospital (led by “River Deep, Mountain High”,) we have settled in and are all anxiously awaiting Alyssa's Kidney Transplant, which will take place tomorrow morning around 6:00am. It has been a long, tough road for Alyssa, but we are all hopeful that she is about to see a big change for the better beginning tomorrow! Although she is very excited about the potential of getting her life back, she is understandably very nervous about entering into the uncharted waters of this procedure.

It's been a while since we've posted, so I'll provide a brief overview as to what the plan of attack is, then provide continuous updates as we get into the transplant and related activities over the next hours, days and weeks. Each update will show a time and date. For a detailed history as to how we got to this point, please see the older postings that began in January 2009, when Alyssa was diagnosed with Atypical Homiletic Uremic Syndrome (aHUS,) which immediately resulted in total kidney failure.

Without going into too much detail, Alyssa will be only the second patient to ever undergo this procedure in the US and only the fourth in the world...the first transplant in the US was performed just two weeks ago at the University of Iowa Medical Center on a 13 year old girl who is doing just great! The transplant itself isn't what concerns us the most - it's the return of the aHUS that almost took Alyssa from us a couple of times in early 2009. The doctors tell us that the odds of the aHUS returning following a kidney transplant are 80-90%, which is why kidney transplants on patients that suffer from aHUS are rarely performed.

Due to research at the University of Iowa & the Mayo Clinic, doctors have found that an "orphan drug" named Soliris, which was developed specifically to treat Paroxysmal Nocturnal Hemogloginura (PNH,) has shown great promise in treating individuals with aHUS. However, all the treatments performed to-date have been on patients that had aHUS, but, had not lost the use of their kidneys. So far it has worked very effectively with these patients.

Soliris is only reason that Alyssa will be able to proceed with her kidney transplant. Without its ability to fight off aHUS, the doctors would never attempt this very risky procedure. Whether or not the Soliris works and how the new kidney reacts are questions that no one can answer as there is no history or precedent. But this we know, three years ago, Alyssa would probably never have survived the aHUS attack. Six months ago, they would never have attempted the transplant. Medicine keeps moving forward and we can only hope that we at the point where they can give Alyssa back her life. In 2009, her life as she knew it was taken from her. She may look great on the outside, but on the inside is a body and soul that has been ravaged by this awful disease. Her beautiful smile hides the daily battles that she facing doing even the most basic of activities. As many doctors have told us, she is battling a horrific disease, but at a time when there is hope to help her. It sounds cliché, but all of her lead doctors have told us that if this were their daughter, they would proceed as we are.

We ask that you keep Alyssa and Jennifer in your thoughts and prayers tomorrow and over the coming weeks. Your support has helped get her this far, now we need it for the next big step.

We are not naïve to what we are about to face. The two page addendum to the standard surgery consent form, listing 15 additional items specific to Alyssa’s case, is a chilling reminder of this, but we are very optimistic that this is all going to work perfectly for her. God has opened many doors for us to get to this point and we are praying that he continues her healing and that her donor, Jennifer, flies through this with ease. Thanks for your support and prayers.

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