When I met my husband to be, Roger, he informed me that I really shouldn’t get serious with him because he had the worst luck in the world. Because I felt I was extremely lucky, I didn’t listen, and although I am glad I didn’t, I really didn’t expect that our life together would progress as it has.
When Roger was 5 years old he came down with a rare
illness, hemolytic uremic syndrome. He was hospitalized for five weeks and
in recovery for months. His parents made arrangements for his three brothers
and sisters to live with relatives while they tended to his recovery. But
he survived, and although he had a difficult time catching up in school, his
family came back together.
When Roger was 9, flu passed through the household.
Roger didn’t get better, and was hospitalized again with hemolytic uremic
syndrome. Uncertain of Roger’s chances to survive a second attack, his father
got leave from the Navy to be by his bedside. His mother quit her job and
this time neighbors chipped in to take care of his brother’s and sisters.
This recovery was longer, lasting almost a year. Roger remembers a time of
doctor’s visits and needles.
At the age of 19 Roger tried to follow in the footsteps
of his father and older brother and signed up for the Navy. During the physical
the doctor found that his blood pressure was high and there was protein in
his urine. His application was rejected; he was hospitalized for tests on
his kidneys. Despite these facts, at the age of 28, I had a hard
time believing our life would be anything but normal. Roger appeared to be
healthy and I believed that we would be a normal two career couple, and raise
a family. About a year after we married, Roger had flu-like
symptoms. We had been very active the previous week; I thought Roger was just
over tired. On Sunday morning we went to the emergency room; Roger was admitted.
Not understanding the nature of the disease, it took the doctors four days
to diagnose hemolytic uremic syndrome. This bout
ended with Roger in complete renal failure. He left the hospital after about
a month with a graft in his arm to facilitate dialysis. The seemingly healthy
man I married had lost 20 pounds during his hospital stay and was no longer
able to work. We worked hard to maintain the strict diet required
for dialysis patients, and attempted to
get on with our lives. Roger was bitter constantly fatigued. I lost my job
as a property manager. Unable to survive on Roger’s disability pay, I quickly
got a job as a waitress so that I could be flexible to care of my husband.
Despite our vigilance, Roger did not do well on dialysis,
and his health continued to decline. Within months he was placed on the waiting
list for a kidney transplant. On Thanksgiving weekend, the call came. A cadaver
kidney became available, and Roger checked into the hospital. The transplant
was successful, and Roger checked out of the hospital the week before Christmas
wearing gloves and a surgical mask to prevent him from contracting illnesses
due to his suppressed immune system. Two days later, he checked back in to
be treated for rejection. He finally came home on Christmas day. We were 30
just years old. The recovery was slow, but steady. Roger went back
to school and got a degree in Accounting so that he could get a job better
suited to his health. He had previously worked in labor intensive positions,
but could no longer depend on his strength. We had our first child 6 years after his transplant,
a healthy 10 pound baby boy we named Jack. Twenty months later we had our
second child, again a healthy 10 pound baby boy we named Clint. Our family
was complete. Roger was employed with the Social Security Administration,
I had a good job with a private employer. Finally, we were as we dreamed, a two career couple
raising a family. Our boys were perfect. They were healthy, handsome and smart.
Life was finally turning around. Our oldest child took after me in thoughts
and actions, and the youngest was the spitting image of Roger, so much so
that I asked our pediatrician when we would test kidney function. Hemolytic
Uremic Syndrome, I was told, was not hereditary.
But shortly after school started in 2002, Clint came
down with a sore throat. He was uncharacteristically lethargic so I took him
to his pediatrician. A strep culture was negative and we were sent home with
a diagnosis of a virus. By Sunday of that week, Clint had not improved. He
had been throwing up and I was concerned he was becoming dehydrated. I forced
him to drink liquids, which he would throw up within minutes. On Sunday night
I watched Clint urinate, and the words of Roger’s mother echoed in my mind,
“Roger’s urine was the color of Coca Cola.” Clint’s urine looked like Coke
too. I was terrified. On Monday morning, we went to the emergency room.
After the doctor drew blood, Clint laid very still on the hospital bed. “Mommy,
he said- is heaven real?” Of course, I replied. “Am I going there now?” he
asked. Please dear God no, I screamed in my head. The doctor diagnosed HUS
immediately. Roger joined me in the emergency room and sobbed. He fully understood
what the doctor’s diagnosis meant. So now we know that HUS is hereditary and
that it is recurrent. We are living with two shoes in the air, and if our
oldest son also has a tendency, perhaps three shoes in the air getting ready
to stamp on our dreams and wishes for the future I had actually gotten used
to worrying about Roger, laying in bed and wondering how long it had been
since he peed, taking his blood pressure when he had a headache, letting him
sleep in when he seemed overly tired. Now I follow Clint into the bathroom,
and watch the color of his stream. This morning before going to work I got
Clint out of bed so that I could watch him go to the bathroom, because I had
had an uneasy feeling in the middle of the night. I desperately want to get to the bottom of this disease
that now affects 50% of my family. I cling to the idea that Roger has had
many healthy years between childhood and our late twenties, and I pray to
God with all my heart that Clint is able to grow to be the man God intends
him to be. I want to believe that medicine has come a long way since the 1960’s
when Roger first had his bouts with the disease, and even the 80’s when his
transplant surgery was done, but I am disturbed to see the treatment is remarkably
similar now to when Roger was 5!!! With medical science and technology so
advanced that some day we can clone humans, why does the treatment for HUS
remain only supportive?? And when I watch Clint wrestle with his older brother,
and I want to forget about HUS - I can’t because I think of Ryan Still and
Nathan Bierman, and all the other kids I’ve come to know through
the Foundation. And then I think of future children, including Jack and Clint’s
children, and the devastation that this disease wreaks on entire families.
The injustice of our having not progressed to the point of actual treatment
of the disease cannot continue. We MUST find a cure for
this tragic disease.