The Atypical HUS Foundation

Family Story - Alyssa

A Brother's View -   Ryan Deffenbaugh

 

Earlier this summer my sister,  Alyssa, was preparing to move out of our family home and into an apartment with a friend from high school when she had asked me for a simple favor: she called down to me from her room upstairs and asked if I could bring her up a box. The request, innocuous as it was, immediately sent shivers down my spine and put my mind into a dizzying whirl. “Do you realize what that sounded like?” I asked, running up the stairs and toward her. She paused for a moment, confused as to why I had suddenly came charging up the stairs. “What what sounded like?” she asked. “Can you get a box,” I repeated back to her, emphasizing each word.  “Wow,” she said finally. “I... hadn’t even thought of it when I said it.” We both broke out in a laugh. After a moment, I looked up at her to see her eyes had welled up with tears.

 

 Just two summers earlier, no one in our family could have imagined we would be helping her move anywhere besides in or out of a hospital room. Two summers earlier, asking for a box to be brought up would have meant that either my brother, father or I would need to trudge down the basement stairs late at night to grab a ten-pound box of dialysate solution, stacked five up and ten across in the far room of our basement, and bring it up to her bedroom two staircases up, where she would plug it into her peritoneal dialysis machine before going to sleep. This was a nightly routine for each of us for a year and a half, sliding in between turning off the lights and brushing our teeth. It was a small task, but one that defined both how much things had changed in just a year and how far we had come in that time.

 

Alyssa was diagnosed with aHUS on January 20 of 2009. It was one week after she had been checked into a hospital for the first time, eleven days after she first became noticeably ill, and two months before her kidneys would be classified as in permanent renal failure. I know these dates with certainty because they’re all documented and recorded. For three years, my mother and father blogged daily about Alyssa’s life for a period that included rooms in four separate hospitals in two different states, daily blood draws and hourly blood pressure checks, and countless nights spent trying to sleep while scrunched awkwardly into hospital bedside chairs. They documented it all, my father somehow managing to bring levity and personality to a situation once entirely unimaginable and my mother using it as an outlet for the hours upon hours of research she had done on the disease and its treatments. The posts remain there today, four full years from that bleak winter and two years after the transplant that has allowed her life to return to some semblance of normal.

 

They serve to remind us of the small details lost over time. Alyssa has thankfully been able to live what could be considered a relatively regular life following her transplant. She still goes to treatments every other week for Soliris, the “miracle drug” that helps keep the aHUS from attacking the new kidney, and carries with her on a daily basis far more medicine than any 25-year-old should, but has been able to to go back to work and live on her own in an apartment. We could never forget the experience of Alyssa’s day-to-day suffering and struggle, but the small details have a way of disappearing from our daily consciousness over time. When reading through these posts, it’s these small moments that come rushing back: the image of my sister in the ICU of Rochester General, unconscious with a tube running down her throat following a morning of multiple seizures, my mother standing over her, rubbing lotion on her feet and legs because it was only thing she could do not to feel helpless. The days we spent tracking blood pressure counts hour-by-hour with clenched fists and jittering legs. The sitting. The waiting. Alyssa flinching at the constant coughing, sneezing, groaning and other sounds of sickness that echoed through the hospital dialysis room from other patients and persistently reminded us of our young sister’s sudden grouping among the hospital’s worst. Watching from upstairs as Alyssa finally broke down into tears and asked why this was happening to her, the only time I ever saw her do so, as my father held her in his arms and told her they would get through it together. These are moments that feel like forever ago now, and thankfully no longer exist in our daily lives.

 

“Blessed are the forgetful,” as the saying goes, and that we are. But our family is far more than blessed just because we have been able to put these nightmares in our past. We are blessed that Alyssa found a donor, her cousin Jenn, courageous and selfless enough to offer a kidney without a moment of doubt. We are blessed that medical science has come to the point it has today, where Alyssa can now ride on the edge of medical innovation and beat the odds every single day. I am blessed that phone calls home from college no longer center around where Alyssa is in her treatment, but instead on how work is going, or the new apartment, or even what’s going on with a new guy in her life (though I seriously prefer other topics). Most of all, our family is blessed that, when we think of Alyssa, we no longer picture the tubes coming out of her arms and stomach, or think to ask where her blood pressure count is. We just picture our sister, the one who loves the Red Sox almost as much as her two year old dog and just spent the summer learning to water ski.

 

We are not out of the woods just yet. Many aspects of post-transplant life, the exhausting treatments every other Tuesday, the  swelling caused by the prescribed steroids, the implications on her future life, still weigh on Alyssa on a daily basis and test her seemingly everlasting will-power. We try our best to support Alyssa as she learns to adjust to her new life and stay positive, and she amazes us everyday with the fearless manner in which she faces her daily challenges.Sometimes all it takes is a simple thing, like asking for a box, to take us all back to the beginning and remind us: it has been worse, and it will get better.

IN REGARD TO MEMBERSHIP REQUESTS

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The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation 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.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
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It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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