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.

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