This document summarizes ARJ Infusion Services' newsletter called "The Infusion Report". It discusses several stories of patients who receive infusion therapies from ARJ for various chronic conditions. It also provides information about ARJ's services, leadership team, new infusion suite, and an interview with the company's CEO who discusses the importance of patient-centered care.
This document provides information about recent activities and events at New Jersey Federally Qualified Health Centers (FQHCs). It begins with a letter from the President & CEO of the New Jersey Primary Care Association reflecting on the past year and highlighting their work supporting FQHCs. It then discusses various FQHC events from the past few months, including breast cancer awareness events, health center expansions and awards, and community outreach programs. The document promotes upcoming training opportunities through the NJPCA and their partnership with RWJ on Project ECHO for expanding specialty care access at FQHCs.
Our Vision for Patients
Educated, engaged and empowered patients actively managing their health and becoming advocates for healthy living within their family and the community, inspiring
others to value that good health is true wealth.
This newsletter provides information and advice for cancer survivors regarding returning to work after treatment. It discusses common concerns patients may have such as whether to continue working during treatment, when is the right time to return to work, and what physical and legal protections exist. The document addresses questions about job capabilities and employer obligations under the FMLA and ADA. It encourages patients to focus on healing, evaluate their options carefully, and understand their rights as employees with cancer.
VNAHG_Winter2015-2016_Newsletter_WebsiteJesse Dean
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The document discusses a partnership formed between VNA Health Group and Barnabas Health to provide home health, palliative, and hospice care beginning January 1, 2016. It also mentions that both organizations received high star ratings from CMS for quality. The partnership will operate VNACJ Home Care and Hospice in certain counties and Barnabas Health Home Care and Hospice in other counties. Additionally, it discusses how a fire damaged a home that was to be used for VNA Health Group's 2015 Stately Homes-by-the-Sea Designer Show House fundraiser.
Nova Health Patient-Centric Culture Code Kristine Rice
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The Nova Health patient-centric culture code is the convergence of our patients’ needs and our staffs’ deep-rooted desire to help care for our patients and each other.
This document is the spring 2016 issue of the Pennsylvania Nurse, a publication by the Pennsylvania State Nurses Association. It includes articles on issues related to nursing practice in Pennsylvania, such as nurse staffing levels, patient safety, and advocacy. The issue contains testimonials from nurses about challenges of understaffing, and articles about building a culture of safety and factors that influence nurse engagement. It also provides information about subscribing to the publication and submitting articles.
Komen Central Indiana's 2014-2015 annual report summarizes the organization's activities and impact over the fiscal year. It provided nearly $850,000 in grants to 11 local breast health programs, serving over 25,000 people. It also contributed $344,000 to breast cancer research. The report describes several grantee programs and how they helped people access breast cancer services. It highlights Komen-funded research in Indiana and individual survivor stories. The organization expresses gratitude for the support that allows it to further its mission of saving lives and ending breast cancer.
This document summarizes profiles of 10 notable nurses in Southeast Texas who were recognized during National Nurses Week. It describes each nurse's role, experience, accomplishments, and commitment to providing compassionate, quality patient care. The nurses work in various specialties including telemetry, home health, infection prevention, and infusion clinics. They are praised for putting patients at ease, advocating fiercely for their needs, and viewing nursing as a lifelong dedication to helping others through both challenging and joyous moments.
This annual report provides an overview of Lakeland HealthCare's activities and accomplishments in 2014. Key points include:
- Lakeland HealthCare expanded its robotic surgery program by purchasing two new da Vinci surgical systems, making it the only health system of its size in the region with three robotic surgical systems.
- The organization was awarded the prestigious HIMSS Davies Enterprise Award for its successful implementation and use of electronic health records to improve patient outcomes.
- Lakeland HealthCare closed its Berrien Center specialty hospital due to changing healthcare needs and the significant financial investment required to repair or replace the aging facility.
The document discusses collaboration between cardiology and neurology experts at Mills-Peninsula Hospital to better understand and treat strokes. Atrial fibrillation, a heart arrhythmia, can double the risk of heart-related death and increase stroke risk five-fold. However, the arrhythmia isn't always present when patients are evaluated for stroke. By working together, cardiologists and neurologists can gain a more complete picture of the relationship between heart issues like AFib and strokes, in order to provide the best care. The hospital is focused on detecting diseases that may cause devastating consequences through new technology and integration between medical specialties.
This document is the 2014 annual report of the Visiting Nurse Association Health Group (VNA Health Group). It summarizes the organization's mission to help individuals achieve their best health and well-being through compassionate home and community care. In 2014, VNA Health Group served nearly 110,000 people across New Jersey. The report highlights the organization's three programmatic institutes and new strategic plan focused on engagement, quality, innovation, and sustainability. It also recognizes the leadership's roles in advancing health care and their communities.
This document provides information about various services and events at LRGHealthcare facilities. The main pieces of information include:
- Convenience Care provides walk-in treatment for common injuries and illnesses at LRGH with convenient hours and no appointment needed.
- A new communication system called Voalté allows the healthcare team at LRGH to communicate instantly to coordinate patient care.
- Living Well workshops help people manage chronic health conditions through education on nutrition, stress management, and goal setting.
- Advanced Orthopaedic Specialists, formerly Orthopaedic Professional Association, provides joint pain treatment and holds seminars on joint health.
- Upcoming events include a hospice care discussion, golf classic
The document outlines plans for a spiritual care volunteer program at University Hospitals Seidman Cancer Center. It describes the need for such a program given the number of cancer patients served each day. Volunteers would provide compassionate presence and support to patients through active listening and referring those in spiritual distress to chaplains. The program would provide training on communication skills, caring visits, and setting boundaries. The goal is for volunteers to help address patients' existential questions and enhance their quality of life and care.
The Ottawa County Department of Public Health administers the county's Medical Examiner Program. The program investigates all sudden, unexpected, accidental, and violent deaths as required by Michigan law. It consists of a medical examiner, forensic pathologists, medical examiner investigators, and a medical examiner specialist. The report provides first-hand perspectives from a medical examiner investigator and outlines the roles of all personnel involved in investigating deaths and determining causes.
This newsletter provides summaries of successes from various 360Care providers. It discusses a cerumen management course provided to Georgia providers. It highlights positive stories from providers, including an audiologist helping patients resume activities like singing after removing earwax, a podiatrist providing beneficial foot care to nursing home residents, and an optometrist discussing a new amniotic membrane therapy to help patients heal. It also provides tips on denture repairs from a dentist and encourages providers to connect on LinkedIn to help expand 360Care's reach.
April is Parkinson’s Awareness Month and it’s an ideal time to take a look at your estate plan to ensure you’ve made accommodations should you or a loved one is diagnosed.
JESI Management Solutions is a global journey management software company that operates in over 16 countries to streamline journey management and provide real-time visibility and safety of mobile workforces. Their solution automates emergency alerts and response for organizations with mobile workforces in industries like resources, construction, health, and education. JESI aims to give peace of mind to those who care for mobile workers by reducing costs and increasing safety associated with managing workers who travel or work in remote locations.
This document provides information about Santiago Garnes Simon, including his education credentials and experience. He has a BA in Civil Engineering from Polytechnic University of Valencia and international work experience in the UK. His areas of expertise include urban developments, city planning, infrastructure projects, highways, and water/drainage systems. He is proficient in various engineering software programs and committed to technical solutions for civil engineering problems.
The document discusses the importance of planning and preparation in life. It provides advice around not getting overwhelmed by work, utilizing your time effectively, asking for what you want, knowing when to take action, the value of reputation, maintaining health, setting clear goals, the returns of investing in knowledge, taking things slowly at first, communicating with others, being transparent, and building a genuine network rather than engaging in online scams. Planning is presented as key to achieving the best outcomes and an enjoyable life.
El documento presenta los detalles de un proyecto de construcción incluyendo el título, fecha, diseñador, constructor, materiales y especificaciones. Contiene información sobre las dimensiones y detalles de la estructura así como las vistas y planos del proyecto.
Summary of E. Placencia's Accomplishments at Toyota Financial ServicesEd Placencia, MBA
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Ed Placencia has accomplished much in his role at Toyota Financial Services' Enterprise Compliance Department from 2011-2014. Some highlights include managing regulatory compliance testing of all 30 dealer sales offices within 12 months in 2014, expanding his responsibilities to include privacy, insurance, and sanctions compliance. He also hired consultants and additional staff, presented at an innovation fair, tested account servicing compliance, and served on the corporate policy review panel. Earlier he established the department's first compliance testing and monitoring function and coordinated several complex consumer refund campaigns.
This document is a questionnaire for audience research on music magazines. It asks respondents for their gender and age range, which music magazines they have read, what music genre they listen to and why they like that genre, which artist they would most like to read about, and how much money they would spend on a music magazine.
Efsa: best practice for crisis communicators cercalanotizia
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This document provides best practice recommendations for communicating during food or feed safety incidents. It outlines key principles such as taking control of communication, being transparent, and collaborating across borders. It describes a communications workflow with four elements - information gathering, preparation, communication, and monitoring & review - that are often repeated as an incident develops. The document provides detailed guidance on tasks within each element, such as developing clear messaging, distributing holding statements, preparing spokespeople for interviews, and collaborating with EFSA and other organizations.
The document discusses a young girl named Jadynn who was diagnosed with a rare bleeding disorder and how ARJ helped provide her infusion treatments at home. It describes how ARJ nurses developed a friendship with Jadynn and her family and helped establish a routine of home visits for her infusions. The family credits ARJ's high-touch care with helping Jadynn gain independence and confidence while managing her condition so she can enjoy activities like bowling with her family.
GSK has launched a new website, APositiveLife.com, as an interactive resource for patients newly diagnosed with HIV, those receiving treatment, and caregivers. The site features video testimonials from real patients and caregivers sharing their stories in a positive light. It provides information on how HIV works, where to get help, financial assistance programs, managing side effects, related health issues, and questions for doctors. The goal is to make HIV understandable for a wide audience and provide an interesting, positive experience for people seeking information and support.
Cardon Outreach is a company that helps reduce the cost of uncompensated healthcare by assisting uninsured and underinsured patients. They have over 1,200 employees across 43 states who work directly in hospitals and clinics to determine patients' eligibility for assistance programs, help with denied disability claims, and provide other revenue cycle management services. They handle billions of dollars in medical billings annually. Erin Keene, regional vice president of their Kansas office, says their work not only helps hospitals but also benefits patients through advocacy. The company also supports local communities through philanthropic donations.
The document discusses rehabilitation for patients recovering from health events requiring hospitalization. It introduces ReSTART, a website created by the Association of Rehabilitation Nurses to provide information and support for patients and caregivers during rehabilitation. ReSTART aims to help the 75 million Americans with disabilities understand the rehabilitation process and empower them to regain independence. The goal of rehabilitation nurses is to help patients recover to a point of self-sufficiency and ability to live full lives despite any chronic conditions.
Six nurses from the Visiting Nurse Association (VNA) recently received certification in chemotherapy from the Oncology Nursing Society after completing a two-day training program. The VNA also welcomed two new patient care managers and one nurse received wound care certification. Additionally, the current medical director of VNA Hospice is relocating and several changes are being made to physician coverage of hospice patients and facilities. The newsletter also provides information on the VNA's cardiac care program and answers frequently asked questions about artificial nutrition and hydration at the end of life.
Nursing involves promoting health, preventing illness, alleviating suffering, diagnosing and treating human responses to illness. Nurses protect patients, recognize them as whole individuals, and help patients understand their health needs and navigate the healthcare system. Nurses are problem solvers, guardians, and cost-effective members of the healthcare team who save lives, prevent suffering, and save money through their medical knowledge and caring approach.
This document summarizes how donations support Seattle Children's Hospital in providing care, pursuing research, and serving sick children. Donations allow the hospital to say yes to hope, care, and cures for families. They fund research for new medical treatments and help advance care so children can thrive. The hospital helps the most complex cases from a large regional area regardless of families' ability to pay due to donor support.
1. infusion
ARJ InfusionSERVICES
ARJ Publication for Patients, Families, and Partners | Spring 2016
REPORT
Limit7 decades
living with a chronic
disorder, ARJ arrives in
the nick of time
the
Sky’sthe
Seizures won’t stop this young
outdoor enthusiast from living
his best life
The
BOLD
Brothers
A New
‘Leash’on life
Relying on man’s best friend
has gained more acceptance in
the medical community
2. 2 | the infusion report | spring 2016 G+
Find out more about the ARJ Advantage.
Give us a call. We’re always happy to chat.
(866)451-8804
fax (877)451-8955
arjinfusion.com
As a home infusion pioneer, ARJ Infusion Services
provides therapies to children and adults with acute, rare,
and chronic disorders—and no condition is too complex.
As a value-based organization, we understand healthcare
encompasses more than modern medicine alone. We
believe in treating the entire person.
Wellness worth celebrating
In 2015, ARJ secured $625,000 in third-party
assistance and resources for patients
Received a 99 percent score in patient satisfaction
Donated millions of dollars to community and
non-profit organizations
Won numerous awards for delivering exceptional
nursing care and specialty pharmaceuticals
ARJ is proud to celebrate 16 years of quality
home infusion care across the United States!
To our communities and our neighbors,
to our patients, families, and partners,
it’s because of you we’re able to do
what we love every day.
Thank You.
CALLING ALL CLINICIANS
Is your patient in need of
quality home infusion care?
Celebrating Our
4. 2 | the infusion report | spring 2016
ARJ Employee Receives
Prestigious Award
Specialty medication is expensive.
Every day, patients are dealing with insurance companies,
out-of-pocket co-pays, and unexpected costs.
However, if you ask an ARJ patient, many will tell you
that’s not the case. Why, you ask?
“We have one rule: We don’t turn our back to anyone,” said
Linda Kriner, patient resource coordinator. “Regardless
of what’s available, we’ll show people options.”
Kristin, a Missouri mom whose son has a chronic
condition, understands these difficulties. “ARJ has helped
myfamilyinwaysIcouldneverimagine,”saidKristin.“It’s
not a one-time conversation.”
Linda helps families across the
Midwest that require assistance.
What makes her and the rest
of the team different is their
background and knowledge.
“There are many things people
don’t think about when it comes to assistance,” said Kathy
Blevins, director of reimbursement services. “We focus
on both the big and little opportunities, many of which
patients don’t know about.”
Having the right people on your side is crucial. “We
support our patients by connecting them to different
resources such as holiday financial relief, school supplies,
utility assistance, and covering the basic needs of human
survival,” said Linda.
“We’re empowering people,” said Kathy. “By connecting
patients with resources, we enable them to take control
again.”
SHORTS
The Myasthenia Gravis Asso-
ciation of Kansas City recent-
ly presented Lonnie Kersey,
account manager at ARJ
Infusion Services, the “Stack-
house Distinguished Service
Award” in recognition of
his outstanding leader-
ship, dedication, and com-
mitment. The award, pre-
sented to Kersey on Nov. 6,
2015, is the organization’s
greatest honor.
Myasthenia Gravis is a neu-
romuscular autoimmune dis-
order that affects communi-
cation between nerves and
muscles.
“Lonnie has devoted count-
less hours to our association.
He’s involved in support groups, events, and has a true
desire to help those affected,” said Danielle Walk,
executive director of The Myasthenia Gravis Association
of Kansas City.
In Good Hands
In 2015, ARJ secured $625,000 in
financial resource assistance for patients
Connecting
ARJ patients
to over 40
organizations
Find out more!
arjinfusion.com/resources
(866) 451-8804
“We couldn’t be more
proud of Lonnie
and the public
awareness he has
brought. His loyalty
to this community is
inspiring.”
— Lisa Sackuvich,
president and owner of
ARJ Infusion Services
Myasthenia
Gravis is a
neuromuscular
autoimmune
disorder
that affects
communication
between nerves
and muscles.
5. spring 2016 | the infusion report | 3
Our Patients Rock!
AR
Long wait times. Hospital traffic. Unexpected delays.
Today, healthcare patients are turning to more convenient
care. Home health is often the best option to meet patient
needs.
ARJ’s reputation is known for delivering high-quality
home infusion care, but has added a new choice in
receiving infusion. This premier suite offers an on-site
pharmacist and nurse, as well as entertainment and
technology options.
“Our private room offers a modern, comfortable feel for
our patients and their families who visit us,” explains Andy
Copeland, vice president and general manager of ARJ
Infusion Services. “The suite offers entertainment options
that some may not have in their home.”
Amenities include:
• Comfortable leather
recliner
• 50” flat-screen TV with
digital cable access
• PlayStation 4 with games
• On-demand TV shows and movies
• Fast, free Wi-Fi
ARJ’s infusion suite is located in the Kansas City metro
area. It’s setup to treat individuals with different genetic
disorders, such as, hemophilia, autoimmune and
neurology disorders, and rheumatic conditions.
SHORTS
ARJ Opens Premier
Infusion Suite
New suite offers entertainment and
convenience
Check it out!
arjinfusion.com/suite
(866) 451-8804
Independence is key for these
first-time infusers
It’s important we recognize ARJ patients, family
members, and caregivers who have independently set
up and properly mixed, stuck, delivered, and cleaned up
after infusing. No matter where you are in your education
of infusing, we’re proud to celebrate your remarkable
accomplishments.
Mommy Rocks
Nancy R., Kansas City, Kan.
Hope C., Independence, Mo.
Ciara C., Kansas City, Mo.
Bravery Award
Ruben A., Wichita, Kan.
McAger T., Andover, Kan.
Klaytin H., Benton, Kan.
Chris D., Hutchinson, Kan.
Muri B., Wichita, Kan.
First Stick Award
Jan W., Omaha, Neb.
Do you or someone
you know deserve a
shout-out?
Send us an email at InfusionReport@arjinfusion.com
and tell us your first self-infusion story.
Your story matters!
Did You
Know...
ARJ nurses are great
educators and love to
help individuals who
want to become more
independent.
The Patient Notification System (PNS) is a valuable resource available
to patients and families who use plasma and recombinant therapies.
Recalls and withdrawals for medical products and ancillary supplies
do occur, and ARJ wants to keep you and your family informed. When
a recall or withdrawal is announced, ARJ pharmacists will be sure to
notify you. In the meantime, PNS is the fastest way to learn about the
latest medication announcements and recalls.
6. 4 | the infusion report | spring 2016
Staying Power
I
n the past I’ve written on the importance
of advocating for you and your family’s
access to care. I’ve seen firsthand how
families are tested every day. This can be
the painful chronic disease itself, searching
for patient assistance, lobbying to be heard
by your state representative, work-life
balance, and the list goes on.
I found myself on the patient side of
healthcare this past year and was appalled.
The challenges were frustrating and
extremely hard to navigate. During this
strung-out experience, I found myself
asking questions—is this really happening? What can I do to make this
better? Is everyone receiving this type of care? Then it hit me: there was
no advocacy, personalization, and care.
Power within
The word staying power comes to mind when
thinking about those living with chronic
disorders who have the incredible strength
to keep moving forward despite the fatigue
and difficulty. The up-and-down journey
is continuous for these vigilant advocates;
mothers, fathers, spouses, and caregivers.
As we celebrate 16 years of service, ARJ
is committed in not only providing home
infusion care, but taking time to listen to the
patient and their needs. We’re treating not just
the condition, but all aspects of one’s life.
Patient- and family-centered care
In this edition of The Infusion Report, we take a closer look at how
ARJ patients overcame the challenges that were presented to them.
Because of their never give-up attitude, they were able to persevere
against all odds.
We’re honored Klaytin and his family, along with Carl and Frank, who
decided to share their real-life experiences with our readers. The stories
are inspirational. I’m proud of our team of clinicians and staff who also
acted as advocates, getting them back to the life they love—because they
sure do love life!
Here’s to a great start in 2016!
Lisa Sackuvich, RN, BSN, CRNI
Owner & President
INFUSION & INSPIRATION | A MOMENT WITH OUR CEO
Treating our patients
the way they should be
treated. See what patients are
saying about our services.
“I’ve always had great
communication with the
ARJ folks. Thanks so much
for your service and help.”
— Teresa D.
“Great service. Entire
company has been great to
work with!” — Janine K.
“Keep up the GREAT
service! I really like my
nurse, she’s great!! I feel very
confident in her!”
— Thomas S.
“I am completely satisfied
with the service ARJ has
given me throughout the
years. You are a blessing to
me!” — Melissa P.
“Stellar care in pharmacy,
nursing, and answering any
of my billing questions. Your
employees are the best.”
— Helen S.
“I am in great hands and
feel very comfortable with
these nurses. They are
professional and courteous
every time!” — Frank K.
“I love your packaging of
my supplies when I receive
them. I know it’s safe to use.
Great team.” — Susan M.
7. spring 2016 | the infusion report | 5
A New ‘Leash’ On Life
Animal-assisted therapy can lead to emotional
healing and lessen depression
P
et therapy is gaining not only admirers, but the respect of clinicians as
well. Although clinical care is crucial for survival, so is your wellness
and mental health. The growing trend of including pets in therapy is
helping children and adults who are in need of emotional support. And
pets have been found to provide comfort, friendship, and happiness to those
suffering from depression and anxiety.
More practitioners are praising the benefits of animal-assisted therapy as they
help patients reach goals related to self-esteem,
social skills, and anxiety. This allows
providers to add one more tool to their
toolbox of solutions outside of modern
medicine.
“Our physicians love the animals,”
said Allison Bowring, Patient
Activity Coordinator at Children’s
Mercy Hospital. “Not only are the
clinicians advocates of the program, many
have dogs of their own who understand the
comfort these animals bring.”
Allison is part of the hospital’s Facility
Dog Program, which was founded
last year. It’s based around two golden
retrievers named Hope and Hunter. The
two dogs are trained to help children
facing different challenges.
Interacting with a friendly pet may
provide such health benefits as:
• Lower blood pressure, cholesterol, and
heart rate
• Increase in serotonin and dopamine,
resulting in joy and happiness
• Reduce mental fatigue
Find a furry pal the next time you’re looking
for someone to watch the game with or
challenge you to a two-mile walk. You
may be surprised at what you find.
Catch up with us!
arjinfusion.com/blog
Animal-assisted therapy may
not be right for everyone.
Consider these other forms of
expressive healing that have
also been found to improve
patients’ lives.
Art | An art therapist
facilitates this therapy by
focusing on artwork as a way
to explore feelings, reconcile
emotional conflict, and bring
self-awareness. Activities may
include drawing, painting, and
sculpture. arttherapy.org
Play | Imagination and creative
visualization are key in this form
of healing, which encourages
patients to express themselves
through different types of play,
including storytelling, role-play-
ing, and toys. playtherapy.org
Music | This approach can
help address psychological and
behavioral needs through music
by providing a form of commu-
nication to those who find it dif-
ficult to express themselves with
words. musictherapy.org
Family Therapy | Families
may benefit from support through
a marriage or family counselor
to help ease the stress of coping
with a chronic condition.
aamft.org
Group Support | Expressing
yourself to others who share
similar feelings is a great way
to connect with people. Join a
discussion through a community
support group or online blog.
HEALTHCARE TRENDS AR
8. 6 | the infusion report | spring 2016
When Rebecca, an
education specialist, and
husband Devon, a shop
foreman, welcomed baby
boy Klaytin to the world
seven years ago, they
were on cloud nine. It
wasn’t until after Klaytin’s
first birthday the couple
noticed peculiar behavior
coming from their son.
“He kept falling over and
not being able to control
it. I initially thought he
was being silly and wanted
to play,” explains Rebecca. “As each day passed, we
started seeing more signs that something wasn’t
right.”
Calm Before the Storm
Not thinking too much about it, Rebecca and Devon
paid a visit to their primary care physician and later
to an orthopedic specialist. “Everything appeared
fine,” said the mom of three. “But that gut feeling
wasn’t going away.”
Over time, Rebecca continued to see Klaytin
struggling in pre-K activities. He was having
difficulty remembering shapes, numbers, and colors.
“He would learn things and then later forget,” said
Rebecca.
The persistent parents saw the family doctor again,
who later referred them to a neurologist. “Our
family physician wasn’t sure where to send us. It was
getting scary,” said Rebecca.
He suggested they visit a
neurologist who would
later perform a video EEG
(electroencephalogram).
This test monitors and
picks up electrical signals
produced by the brain. The
tests revealed abnormal
activity, indicating Klaytin
had been experiencing
seizures.
The seizures were never
consistent . . . every single
episode looked different—
so did the time it happened and its severity.
After much research, the family found out their little
boy suffered from a rare epilepsy disorder called
electrical status epilepticus during slow-wave sleep
(ESES).
Things were finally adding up for the family of five.
It’s common in children with epilepsy to experience
developmental and emotional problems if not
handled properly.
“We’re finally getting answers,” Rebecca cried.
The family felt their persistence was paying off;
however, this uncommon chronic condition was
going to have them entering an even darker journey.
An Unknown Forecast
“We started to realize how rare this diagnosis was,”
explained Rebecca.
W
hat do 200 balloons, a ‘buddy’, and a family’s love
have to do with treating a rare seizure disorder?
Everything.
“Everything appeared fine. The gut feeling wasn’t going away.”
The Sky’s the LimitSeizures won’t stop this young outdoor enthusiast
from living his best life thanks to the right care team
FEATURE
Klaytin
9. spring 2016 | the infusion report | 7
Only .05 to .06 percent of all childhood epilepsy
cases are identified with this type of illness. “We
had a diagnosis, but what about treatment?” asked
Rebecca in disbelief. “I need something that will give
my child a normal life.”
As the desperate parents continued
their search for answers, they found
a family friend who experienced
a similar condition. Tragically,
their child passed away from
having too many seizures and not
finding treatment that was effective
enough. Rebecca and Devon were
beside themselves.
Each case is unique, and currently
there is no medication that works
100 percent of the time. As the tenacious mother
logged hours online finding support groups and
possible treatment options, she needed something to
give her peace of mind. “Google is dangerous,” she
laughs. “You have to know what’s accurate and what
isn’t. You can drive yourself crazy.”
Persistence Pays Off
Eventually Rebecca found a family in the Republic
of Turkey that experienced a similar situation with
their child. They offered mild solutions, but nothing
concrete. However, through every conversation,
she became closer to her ultimate goal of finding a
solution.
During this time, Klaytin tried and failed many
anti-epileptic drugs and received steroids daily to
help minimize the symptoms. “Nothing was really
working and I was growing impatient,” said Rebecca.
Months later, Klaytin’s neurologist connected the
family with physicians at Mayo Clinic and other
practices around the world. They recommended
trying IVIg (intravenous immunoglobulin), a
treatment used to help patients with autoimmune
disease. This approach is slowly growing in
popularity with people being treated for specific
cases of epilepsy.
And with their clinician’s consent, the family decided
to move forward with IVIg treatment.
ARJ Rolls Up Their Sleeves
It was ARJ’s outstanding reputation, services, and
word-of-mouth referral that encouraged Rebecca to
seek specialty care from ARJ. “It was through prayer
and the support of others that I
found them,” explains Rebecca.
Part of ARJ’s character is the
quality-of-care the team brings.
“Before finding ARJ, we thought we
were going to have to travel to the
hospital regularly,” said Devon. “We
were glad to find out they could
come to us. It would have been a
long drive.”
The care plan was set. ARJ’s
pharmacists would help manage the medication
while nurses would create a comfortable infusion
setting for Klaytin.
Almost immediately after his first treatment, Klaytin
began revealing extreme anxiety and stress about
receiving infusions. “He wanted nothing to do with
it,” said Kim Bushell, RN, ARJ Infusion Services. “It
was becoming a problem, he didn’t understand what
was happening.”
Play Therapy
As with any lifelong condition,
it can have lasting emotional
effects. ARJ clinicians are
ready for the unexpected—it’s
not the first time the team has
encountered a child who doesn’t
want to receive care.
One day, ARJ nurses
Dedria Spaulding, RN,
and Bushell gave Klaytin a
small figurine customized
in his likeness. However,
this wasn’t just any toy. It’s
designed for children who
have an illness, disability,
or are in need of medical
care.
“Klaytin performed the infusions on his
‘buddy’ Woody—it even had a port.”
AR
“Google is dangerous.
You have to know
what’s accurate and
what isn’t. You can
drive yourself crazy.”
FEATURE
10. 8 | the infusion report | spring 2016
Created by the Shadow Buddies Foundation, Klaytin’s
new buddy is a condition-specific toy designed
to be a friend to a child who needs emotional and
psychological support. This hands on approach
allows experts to educate the child and their families
on the condition and treatment.
“Klaytin performed the infusions himself on his
‘buddy’ Woody, it even had a port,” said Dedria. This
provided the then 6-year-old boy to ‘play’ out his
feelings.
“I could tell he was struggling,” said Rebecca.
“However, once he could see what was happening
from a third-person perspective, it started to click.”
Over time, his anxiousness and worry went away.
“Any time children have a chance to express
themselves, it allows them to have another venue
to work through their emotions,” explains Carmy
Goodwin, licensed clinical social worker with
Heartland Play Therapy Institute. “It may seem
strange initially, but it’s a very natural process. We
are returning back to the basics and letting our brain
naturally heal.”
Bunch of Balloons
April 24, 2014, marked the one-year anniversary of
Klaytin’s seizure-free life.
To celebrate the occasion, the happy family threw a
partywithmorethan200familymembersandfriends
in attendance. There was tug-of-war, old-fashioned
outdoor games, and comfort food. But what made
the event memorable was a special balloon release
to honor Klaytin’s recovery. Each guest wrote down
what they were thankful for on the balloon before
releasing them into the sky.
“It was a big moment for us,” said Rebecca, grinning
from ear to ear. “We needed to rejoice.”
Today Klaytin is loving life and doing what he enjoys
most—being outside, fishing, and helping his dad in
the garage. “We’re always finding something to mess
with in the garage,” laughs Devon.
Things are looking up for this family of five today,
which also includes 11-year-old Kaidynce and
9-year-old Kyleigh. This April, Klaytin will be three
years seizure-free thanks to his parents’ and ARJ’s
perseverance.
The renewed energy and happiness in this
young boy’s heart are reason enough to never give
up hope.
FEATURE
This April, Klaytin will be three
years seizure-free thanks to his
parents’ and ARJ’s perseverance.
Release of balloons
Klaytin’s family
11. AR
Antibiotics: The Good,
the Bad, and the Ugly
When you hear‘infectious disease’do you think‘super-bug’or‘flesh-eating
bacteria’? Ok, so you might not think of either, but there are many diseases
out there that require powerful infusion antibiotics.
spring 2016 | the infusion report | 9
Q: Why would I want
infusion therapy as an
antibiotic option?
In my opinion, IV antibiotics
usually work better in comparison
to oral medication for long-standing
or high-risk bacterial infections.
What makes infusion therapy
different from orals is how it enables
the liver to metabolize the antibiotic
faster into the bloodstream.
Be sure to speak to your physician
to determine treatment options.
Q: How long does it take to
complete the therapy?
On average, it takes around four
to six weeks. It depends on the
infection and its root cause.
Q: Do I need to get a referral
from my doctor? Yes, you need
consent from your physician if you
start antibiotic infusion therapy. Be
sure you are given an explanation
of your illness along with any side
effects and risks.
Q: Do I have to visit the
hospital to receive treatment?
No, there are many home health
agencies that can provide treatment
right in your home. Your insurance
carrier plays a huge part in deciding
if you’re covered. Be sure you speak
to your insurance representative to
understand the costs.
Also, research your home provider’s
years of experience and patient
satisfaction scores.
Q: How can I learn about
self-infusion? For self-infusion in
less complex situations, be sure to
ask about a home provider who can
send a nurse to the hospital before
you leave. They should be able to
teach you the basic knowledge of
self-infusion. Ask your discharge
planner for a list of home infusion
providers.
Q: What would lead me
to need IV therapy? There
are many bacterial diseases that
infusion therapy covers:
• Autoimmune diseases
• Pre- and post-surgery, including
transplant
• Infected wounds and skin
infections
• MRSA
Q: What’s one thing you’ve
learned in this field?
I believe many oral antibiotics
are over-prescribed. We receive
so much of it during our lifetime
that the immune system builds
resistance. We continue to need
stronger drugs, such as IV therapy,
to make a treatment work.
The
ARJadvantage
INDUSTRY & INNOVATIONS
Misty Sargent, emergency medical technician for KC Infectious Disease
Consultants, discusses what patients need to know when it comes to IV antibiotics.
Find out more!
arjinfusion.com/antibiotics
(866) 451-8804
ARJ’s multidisciplinary
care team was created to
help enhance the level of
communication for everyone
involved.
Coming on service with
ARJ means you have trained
nurses, pharmacists, an
insurance specialist, and
patient support ready to assist
you when needed.
12. 10 | the infusion report | spring 2016
From the beginning, Frank and Carl
have been living with hemophilia B.
More than seven decades later, they re-
call a time when life was much harder.
Little House on the Prairie
The courageous brothers, just four years apart in
age, grew up in a small town in southern Kansas.
Raised primarily by their mother, they also had
eight brothers and two sisters. The large, tight-knit
family lived in a small two-bedroom house with no
running water, electricity, or proper insulation. “We
never knew anything different,” said Frank. “The
boys slept with mom and dad in one room and our
sisters took the other.” And as with
most families living with this genetic
disorder, there was family history—
three of their brothers were also born
with hemophilia.
The Not So Simple Life
Frank, Carl, and their siblings grew up doing
everything they could for their family. Daily life
included tending to several acres of farm land. They
looked after one another and understood the value
of teamwork. “That was our life,” explained Carl.
“Everyone did their part.”
Bold BrothersSeven decades living with a chronic disorder,
ARJ arrives in the nick of time
W
hat if your earliest childhood memory was figuring out how to
survive? It’s what two brothers with hemophilia B have been doing
for more than half a century.
FEATURE
“That was our life,” explained Carl. “Everyone did their part.”
OURFAMILY
13. spring 2016 | the infusion report | 11
AR
Their mother, Dora, was an asymptomatic carrier of
hemophilia—in other words, she had the disorder,
but didn’t display symptoms. “It was no secret our
family had the disorder, but there wasn’t much to
know at the time,” explains younger brother Carl.
Tragedy struck these boys at an early age when
their father passed away in 1951. This
left their single mother to tend to 12
children—almost half of whom had
a chronic disorder. This catastrophic
event made everyone grow up even
faster.
During the late 1950s and ‘60s, their
childhood consisted of taking care of
the homestead, going to school, and
attending church. “My siblings and I would walk four
miles to get to school and back,” said Frank. “Often
times, we would encounter rain, snow, and dust
storms. We would just link our arms and follow the
fence line to find our way back.”
Constantly on the go, these teenage brothers often
found themselves in situations not suitable for
someone with a chronic disorder.
Tending to animals can be dangerous—especially
for those with hemophilia. All types of accidents
occurred, causing long bleeds. Time after time, the
brothers went on bed rest and waited for the bleed
to stop. “We dealt with all sorts of different injuries,”
said Carl. “Our duties on the farm were sometimes
more dangerous than playing sports.”
During this time, the life expectancy of someone with
severe hemophilia was 20 years of age. Treatment
options were still limited. “We had to choose how bad
a bleed was,” explained Frank. “Is it worth traveling
to the nearest hospital, hundreds of miles away?”
The family only had one car. A visit to
the emergency room was an all-day
event.
The 1970s and ‘80s also came with
challenges. Many of their brothers
passed away due to different disease
states and poor health conditions. The
blows kept coming, too—by the mid-
1980s, it was confirmed that HIV/AIDS could be
transmitted through the use of blood products, such
as those used to treat hemophilia. “It was a scary
time,” said Carl. “There was nothing we could do.”
Over time, the brothers started focusing on new
endeavors. Carl continued farming. Frank decided to
start a welding shop. “We literally built the shop by
hand. We stacked every brick to create a successful
business,” exclaims Frank.
ARJ Arrives Countryside
The fun-loving brothers needed more than just
modern medicine. Kim Bushell, RN, an ARJ nurse
supervisor, explains that when she met the brothers
FEATURE
“Is it worth traveling
to the nearest hospital,
hundreds of miles away?”
“We had to
choose how bad
a bleed was.”
14. 12 | the infusion report | spring 2016
almost a decade ago, clinical work
was required. “Not only did they
need infusion care, they needed the
emotional support of people who
understood what they were going
through. Frank and Carl both needed
different types of attention.”
As with any ARJ patient, each brother
came on service with a skilled care
team to help manage their infusions
and quality of life. “It’s not just the
pharmacists and nurses who’ve
helped us—our patient services rep,
John, has been fantastic,” said Frank.
ARJ has been there for Frank and
Carl. “Everyone has been great,”
added Carl.
Today, their ARJ patient services
representative, John, has become
a source of happiness. “He’s been a
great friend to us,” said Carl. “He’s
been by our side for years.”
With ARJ’s assistance, the brothers are
able to manage their chronic disorder
and live a normal life. “Without ARJ
we may not be here,” said Frank. “They
saved us.”
Don’t Let This Define You
Today, Carl and Frank still have
brothers and sisters nearby.
Carl’s true passion is woodwork. He
carves memorabilia wood chests for
every family member.
Carl and Frank still live in the
town they’ve always called home.
Frank built a successful auto repair
business. Both brothers are involved
in managing the family farm. Being
lifetime residents of their hometown,
they know just about everyone. They
enjoy striking up conversations with
locals and childhood friends.
As the brothers reflect on their
lives, they think back fondly.
“You only have one life,” said
Frank wisely. “Enjoy it, despite
any hardships.”
“Without ARJ, we may not be here.”
1769
First family with a
bleeding disorder
is documented in
Switzerland
1803
Further research finds
Hemophilia affects
males, but is carried and
transmitted by females
1837
Queen Victoria is a carrier
of Hemophilia B and
passes it on to her heirs,
thus the name “Royal
Disease”
1950
Hemophilia A and
Hemophilia B are
recognized as two
separate diseases
1969
First factor IX product for
Hemophilia B is licensed
in U.S.
Mid-1980s
Problems arose with
complex factor carrying
Hepatitis and AIDS virus
1990
Purified factor IX product
is accessible to everyone
1997
Recombinant factor
IX product (disease
transmission free)
becomes available
Hemophilia B Milestones
Source: coalitionforhemophiliab.org
Frank and Carl
Brothers’ childhood home today
15. California and North Carolina are currently
pending pharmacy coverage designation
ARJ Infusion
SERVICESarjinfusion.com/locations
G+
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town countryside,ARJ provides specialty pharmacy
coverage across the nation
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(877) 451-8955fax
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