Dialysis Patients and COVID 19: Should I get the Vaccine? How to Prepare your Child for a Hospitalization
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issue number 13
Dialysis Patients and
COVID 19: Should
I get the Vaccine?
Read on page 4
How to Prepare
your Child for a
Hospitalization
Read on page 10
New Organ
Transplant
Guideline
Read on page 9
President’s Message
I
issue number 13 want to thank our Board of Directors, staff, and our
Dialysis Patient Community for this opportunity to
serve you as the new President of DPC’s Education
Center. I want to thank Nancy Scott (our founder) for
creating a space for our organization to educate and
deliver the tools needed to fight this illness. Her shoes
Board Members will be tough to fill so my goal will be to continue in
her footsteps and carry on our mission to empower
and Advisory Council individuals through education, to improve kidney
patients’ quality of life and reduce the occurrence of
Board Members end stage renal disease (ESRD).
Merida Bourjolly, President
As a kidney transplant recipient, who suffered from
Pius Murray, Vice President
ESRD, I know firsthand the importance of patient education and the critical role
Diane Brisbane, Secretary it plays in improving our health. My goal is that we share our experiences with
Mike Guffey, Treasurer others in various communities, who may be unaware of our fight. That way we
can better prepare patients to take the necessary steps to improve their self-care
Donnie Anderson
and possibly become transplant recipients.
Andrew Conkling
Danny Iniguez As the world is in a race to improve the fight against COVID-19, U.S. President
Biden signed an executive order that requires our government to take meaningful
Adrian Miller
steps to prevent and reduce the number of patients that contract COVID-19. He
Pius Murray also laid out his COVID-19 vaccination plan. As kidney patients, we should take
Maria Robinson all precautions to follow the CDC guidelines of wearing a mask while receiving
treatments in all clinical settings. Patients should follow CDC’s guidelines for
Tracy Woodson wearing gloves which will vary by situation. Usually, patients are not required to
Natalie Zuniga wear gloves during dialysis treatment. You can find more information about when
to wear gloves at https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-
sick/gloves.html. . Kidney disease and transplant patients who received the
Advisory Council vaccine, who are waiting for the vaccine or who decide not to receive the vaccine
Kathryn Aebel-Groesch, LCSW still must remember to minimize their risk of exposure.
Sandra Amaral, MD, MHS
The DPC Education Center’s mission is to educate our community with the
Akhtar Ashfaq, MD knowledge you need to make educated decisions about your healthcare. In the
Kerri Cavanaugh, MD, MHS words of Hrant Jamgochian, our DPC Chief Executive Officer, “disease advocacy
transcends politics.” As advocates and concerned citizens, it is our responsibility
Debbie Cote, MSN, RN, CNN, NE-BC
to focus on ensuring the best quality of life for all patients. Do your research, seek
Steven Curtiss, MD your providers for counsel and expert advice to help assist you in making the right
Elizabeth Jones, LCSW decision for your health. We at the DPC Education Center urge you to be proactive
in your healthcare. I cannot stress enough how important it is to do research and
David L. Mahoney, MD
educate yourself about your health. Looking beyond COVID-19, we need to detect
Rajnish Mehrotra, MD kidney disease earlier so patients can have a chance to slow its progression and
Cheryl Neal, MD potentially avoid kidney failure. Approximately 80 million adults are at risk for
kidney disease, mostly due to diabetes, hypertension, and cardiovascular disease.
Stacy Ogbeide, PsyD, MS, ABPP
Jessianna Saville, MS, RDN, CSR, LD, CLT We will also continue to provide information and programs about kidney disease,
Joanne Smith, RN treatment choices, patient empowerment, communication, medical advancements
and tips and tools you can use to improve your health outcomes. I want to thank
Joan Thomas, MPA, CEM, ABCP, MEP the kidney community for its continued support with getting out our critical
Steve Wilson, MS, CSP information and spreading the word about our educational content. I hope I can
count on your support as we fulfill our mission. I will continue to advocate for us
because there is still a lot of work to be done to raise awareness and inform the
community about kidney disease. It is an honor to accept this position and to help
educate our community, as it will not only help save lives but also my own.
How I Cope During the
COVID-19 Pandemic
By Nina Kasl, Working a puzzle is a great way to enjoy each other through our issues.
Dialysis Patient spending time alone or with family. You
might in fact like playing games with the Kidney failure patients have so much
T
his pandemic has us isolated kids or grandkids. frustration. Wanting to get on the list.
from things we used to enjoy! Trying to do everyday things and feeling like
We are unable to visit our friends I love to color. They have adult coloring a burden to their families. Or the families do
and families. It is not going to go away books. Mandalas and numerous other not know how to help or what to say.
anytime soon. Just taking walks by myself things. So, get colored pencils out and relax.
was not making me good at all. I knew We go through so many emotions. It is not
then I needed to do something. Taking care of a plant. Talk to it give it just emotions it is grief. The stages of grief
a name. It does not talk back to you and we go through many times.
That something had to be done. I was tired listens to what you say without judging you.
of the isolation I felt. I needed something Find someone you can confide in. A friend,
that I could do on my own or with the If you have Facebook find a crocheting group, clergyman. Or what I did is to turn to a
immediate family. I made an idea sheet. It wood working group. Cricut group. Etc. therapist. We all need someone to confide
showed me what I can do. in at some time in their life.
I learned diamond painting. You can find
I found journaling as a way of expressing the kits on Amazon. As I said I talk to a therapist. She listens to
myself. You can yell scream, shout, and what I say. She will not talk to my family
cry. No one cares. You can show it to your A Davita support group is online. They and keeps it between us only. If I want my
family, so they understand how and why are on Facebook. These people are facing family to hear what I am going through
you feel that way. It is especially a great dialysis and pandemic issues. We call she helps mediate. There is no judgement 3
recall when and if you talk to a counselor. ourselves the dialysis warriors. We help just ways to cope with ESRD.
Dialysis Patients
and COVID-19:
Should I get the vaccine? If I
get the virus, should I take
the antibody treatment?
traveling to dialysis and in the unit. How us from invading organisms. When
By Alan S. Kliger,
M.D., Clinical Professor of Medicine, Yale
will this pandemic end? Many patients have a new virus attacks the body, cells of
School of Medicine, and Co-Chair, American important questions about the new vaccines the immune system are stimulated
Society of Nephrology (ASN) COVID-19 and about new treatments for the infection. to make specialized proteins called
Response Team. (Updated March 2, 2021) antibodies, that recognize the invading
First, some facts about the vaccines: virus particles, attach to the virus
A
s 2021 unfolds, the COVID-19 1. What is a vaccine? An injected vaccine particles and destroy them. It takes
pandemic continues. Dialysis is designed to stimulate your immune days or weeks for the immune system
patients continue to isolate at system to produce antibodies that to develop these specific antibodies,
4
home, socially distance from family and attack and kill the virus invading your so they are most useful to prevent
friends, use face coverings and precautions body. Our immune systems help defend re-infection of that same virus after
you recover from a first viral illness. a. Patients with chronic kidney disease, vulnerability of the dialysis population,
Vaccines are given to “jump-start” and those on dialysis are at high risk is speaking with dialysis companies and
the immune system to produce these of complications if they catch this the American Society of Nephrology
antibodies before the first virus virus. A recent publication has shown to see if there is a way to get vaccine
infection, so that they go to work that chronic kidney disease (CKD) has to more dialysis patients earlier. Each
immediately if you catch the virus. emerged as the most common risk state is different – patients need to find
factor for severe disease, and explains out when they qualify for vaccination
2. Can you get COVID-19 from the the increased risk of severe COVID-19 from their local authorities.
vaccine injection? No - the vaccine for approximately 25% of high-risk
does not contain virus that causes individuals worldwide. It is therefore What are monoclonal
COVID-19. The Pfizer and Moderna particularly important to prevent antibody treatments for
vaccines contain small particles of the this infection in vulnerable CKD and
COVID-19 infection?
mRNA protein that is manufactured dialysis patients.
to look exactly like the mRNA of the In November 2020, the FDA gave
virus. These particles stimulate the b. The vaccine studies in thousands of emergency use authorization for
immune system to action, but they people leading to FDA authorization, monoclonal antibodies, which reduce
cannot cause infection themselves. did not include dialysis patients, or the viral load (the number of virus in
The Johnson and Johnson vaccine those with known impairment of their the body) and the severity of COVID-19.
introduces the DNA of COVID-19 immune systems. Thus, the safety For dialysis patients who have early
spike protein into a harmless virus and efficacy of these 3 vaccines has COVID-19 infection, infusion of this
that enters host cells but cannot not been specifically examined in this medicine gives antibodies to fight the
replicate inside cells or cause illness. population. Most experts agree that virus before the body’s own immune
In all vaccines with only the genetic the safety and effectiveness shown system or a vaccine are able to develop
instructions of COVID-19, the virus in the rest of the population likely your own antibodies. This treatment
cannot replicate or cause disease. implies that these vaccines are safe and can prevent the life-threatening
effective for dialysis patients. Careful complications of COVID-19.
3. Is the vaccine safe? Each vaccine collection of data on dialysis patients
manufacturer must examine the effect receiving the vaccine should be done
of the vaccine on thousands of people over these next several months.
before the FDA gives permission
for their use. The FDA has given 6. When will dialysis patients be able
emergency use authorization for the to receive these vaccines? Each state
current 3 vaccines, after these tests and many municipalities have the
showed that they are safe. Now after authority to set the priorities for
several millions of doses administered, vaccine delivery and administration.
there are only a very small handful of The CDC, our nation’s authority for
people that have had anything worse infectious diseases, has recommended
than sore arms, or occasionally some a prioritization schedule for
fever, weakness and achiness for 24 – who gets the vaccine first. That
48 hours after injection. recommendation is this sequence:
Here are my personal
4. Does the vaccine work? The data Phase 1a: Health Care Providers and recommendations:
presented to the FDA show that residents in long-term care facilities 1. I encourage all dialysis patients
the vaccines are highly effective Phase 1b: People 75 years and older (21 to speak with your nephrologist
in preventing COVID-19 infection, million) and front-line workers and consider getting COVID-19
preventing hospitalization or death vaccination as soon as it is available.
from COVID-19. While the vaccines Phase 1c: People 65-74 years old (32 Given the known risk of COVID-19
may not work to prevent virus million), essential workers and people infection to dialysis patients, and
infection 100% of the time, they 16-64 years old with high-risk medical the data so far available about the
virtually eliminate the serious effects conditions (more than 110 million) vaccines, I believe this is a safe and
of COVID-19 causing hospitalization Phase 2: People 16-64 years old without prudent treatment to consider.
or death. If these vaccines prevent high-risk conditions (less than 86 2. If you contract COVID-19 before
infection in more than 70% or million) you get vaccinated, I encourage all
80% of people immunized, then a dialysis patients to speak with your
phenomenon called “herd immunity” Therefore, most dialysis patients 75 nephrologist and consider getting an
for the whole population reduces the years and older (phase 1b) already have infusion of monoclonal antibodies.
numbers of infections, and eventually access to the vaccines - - and some 65 3. I encourage patients residing in states
may eliminate it completely. - 75 have also become eligible in most not currently distributing vaccine to
locations. In some states, and localities, dialysis patients to contact your state
5. Are there special issues for dialysis dialysis facilities have received health departments and legislators to
patients? Yes – there are 2 special vaccine to offer patients. As of early advocate for prompt distribution of 5
issues for dialysis patients: March 2021, the CDC, recognizing the vaccine to dialysis patients.
The COVID-19
Vaccine is
Finally Here.
Learn How to Manage Anxiety
and Impatience While You Wait
6
By Kirsten Weir
I
t’s been a long and stressful pandemic
year. Now that COVID-19 vaccines are
becoming available, many people are
wrestling with a new burst of emotions:
From fear and skepticism to excitement
and impatience.
“There is such a range of emotions
around the vaccine rollout,” says
Elizabeth Christofferson, PhD, a pediatric
psychologist and clinical director of
transplant psychology at Children’s
Hospital of Colorado and an assistant
professor at the University of Colorado
School of Medicine. “Those emotions are
normal and valid — and you can find ways
to cope with them.”
Easing Concerns
About the Vaccine
Guidelines from the U.S. Centers
for Disease Control and Prevention our eligible patient population to proceed reason for hope.”
recommend that patients over the age of with vaccination.”
16 years (the Moderna, Pfizer and Johnson While you wait, you can take steps to
& Johnson vaccines are not approved If you’re still feeling anxious, try to make manage stress and keep your spirits up.
for children below 16 years of age) with sure you’re gathering information from 1. Keep up healthy habits. Eating well.
high-risk medical conditions, including trusted sources. Instead of relying on Getting regular exercise. Limiting
chronic kidney disease and transplant friends, family or social media for advice, stressful media. Getting enough sleep.
recipients, receive the COVID-19 vaccine talk to the medical experts. “If you have If your healthy habits have slipped
in phase 1 of the vaccination process, after any questions or concerns, reach out to a little during the pandemic, now’s
healthcare professionals. your medical team,” Swartz says. “We’re the time to start getting back in the
But conflicting information has made happy to answer questions and make sure groove. It’s easier to face the ongoing
some people wary about whether the your concerns are addressed so that you challenges of COVID if you are rested,
vaccine is safe. For people with chronic can make an informed decision with input nourished and full of energy.
kidney disease who are used to being from a source you trust.”
vigilant about their health, that skepticism 2. Embrace relaxation techniques.
makes sense. Yet there’s good reason to be Managing Stress While You Activities such as mindfulness
optimistic about the vaccine, says Sarah meditation, deep breathing, yoga and
Wait for the Vaccine
Swartz, MD, medical director of chronic tai chi are popular because they relax
dialysis at Texas Children’s Hospital and While some people are worried about the your body and your brain. Not sure
an associate professor at Baylor College vaccine, others are eager for the chance where to start? Look for free apps or
of Medicine. “The data suggest that when to receive it. But the vaccine rollout has videos online that can guide you. Or
people with chronic kidney disease or gotten off to a slow start, and the process start by just taking time to stop and
transplant recipients get infected with in some communities has been haphazard breathe: Sit down, close your eyes and
COVID-19, they’re more likely to have a or confusing. Because of this, you may be take 5 or 10 deep breaths in and out.
severe infection. The vaccine offers a large feeling frustrated and impatient, or even
chance for protection.” angry and annoyed at people who have 3. Name your emotions. Sometimes,
gotten the shot ahead of you. we aren’t sure why we’re feeling
So far, evidence shows that typical side down. Figuring out exactly what
effects of the vaccine are minimal, such After a challenging year, those feelings you’re feeling is a first step toward
as soreness at the injection site, fatigue, aren’t uncommon. But instead of getting dealing with it. “Are you anxious?
muscle aches, and sometimes a fever that stuck in a cycle of worry, frustration Frustrated? Scared? Naming our
typically lasts no more than a day or two, and annoyance, try to remain hopeful, feelings can be really powerful,” says
Swartz says. The vaccines approved so far suggests Cortney Taylor Zimmerman, PhD, Christofferson.
have been shown to be very effective at a licensed psychologist in the renal service
preventing infection. And when vaccinated and psychology section at Texas Children’s 4. Control what you can. So much of
people do catch the virus, they appear Hospital and assistant professor at Baylor pandemic life is out of our control. But
to be less likely to experience severe College of Medicine. “This is just another finding things you can control can help 7
symptoms, she adds. “We strongly urge part of the waiting game, but there’s with anxiety. You can make decisions
online games with friends instead
of gathering in person. “You have to
be thoughtful about how to modify
things, but you still have access to
those supports,” she adds.
Help for Anxiety
and Depression
Unfortunately, getting the vaccine
doesn’t mean life will instantly go back
to “normal.” The approved vaccines
offer a great deal of protection, but they
aren’t 100% effective. We also don’t
know how long effectiveness will last
or if the vaccine’s protection will last as
long in transplanted patients who are
immunocompromised. And, experts still
aren’t sure whether a person who has
been vaccinated can spread the virus to
others.
“Even after the vaccine, you’ll want to
wear a mask and keep your distance, and
set limits on what activities you feel safe
doing,” says Christofferson.
This may sound disappointing, having to
about where you go, who you interact if you aren’t quite sure when those be careful even after getting the vaccine.
with and what you need to feel safe. plans will happen. Think about trips But you’ve made it this far, and the
“Instead of thinking of isolating as you might take or meals you can share pandemic won’t last forever. By focusing
being stuck in your house, think of with family. “Thinking about those on healthy coping strategies, you can get
it as choosing to social distance in future goals can provide a huge boost over each remaining hurdle as it comes.
order to take control of your health,” in wellbeing,” Zimmerman says.
Zimmerman says. “Similarly, wearing a And you don’t have to get there all
mask and getting a vaccine are choices 8. Revisit the past. Acknowledge by yourself. “If it feels like anxiety,
you make to stay healthy.” how you feel about missing major depression or stress is interfering with
events over the past year, such as your daily life, or you just feel you need
5. Be prepared. Another way to take family reunions, weddings or even more support, it’s important to seek
control is to do what you can to going back to school. But instead help from a mental health professional,”
prepare for the vaccine. Talk to your of dwelling on what you’ve missed, says Christofferson. The social worker
doctor if you have any questions. draw on those experiences to remind or psychology team at your clinic or
Spend some time gathering yourself of how resilient you are. hospital should be able to help you
information about how to make a “Think about how you overcame connect with a therapist or counselor.
vaccine appointment or sign up on a those circumstances and what coping You can also ask your doctor for
vaccine waiting list. You can’t make strategies helped you get through resources.
the vaccine become available any them,” Zimmerman says. “Think
sooner, but you can do what you can about all the strengths you have “This is the time to use all of our stress
to prepare. to draw on, and how you can apply management strategies,” Christofferson
them now.” You might have to make adds. “We can’t let our guard down yet,
6. Distract yourself. Once you’ve done some modifications, like playing but there is light at the end of the tunnel.”
all you can to take control, try to
distract yourself from the worry of
waiting. Take a break from reading
the news. Stop refreshing your social Resources
media feed to find out who is getting
vaccinated. Instead, focus on other Vaccinate with Confidence from the Centers for Disease Control and Prevention
goals, hobbies and healthy habits. Coping with the Diagnosis of a Chronic Illness from the American Psychological
Association
7. Imagine the future. Some people This content was developed jointly by the American Psychological Association (APA) as part
8
find calm in imagining what they’ll of a partnership with Dialysis Patient Citizens to educate dialysis patients and their families
do when the pandemic is over — even on the psychological and emotional aspects of managing kidney disease.
New Organ Transplant
Guideline Promotes Patient
Safety, Organ Availability
By Sridhar Basavaraju,
MD, FACEP, CDR-USPHS and
Heather Ewing Ogle, MA, MPH
I
n the United States, there are
approximately 90,000 patients with
end-stage renal disease waiting for a
transplant. For those patients, a kidney
transplant could substantially improve their
quality of life. Unfortunately, an organ offer
may not be available for every patient in need
because of the length of the waiting list.
With guidance from the Centers for
Disease Control and Prevention (CDC),
the U.S. Public Health Service released
a new guideline in 2020 that may
increase the number of available organs
for those in need of a transplant. The
recommendations in the new guideline
reflect recent improvements to organ New Testing Recommendations in addition to previously described testing
donor screening technology for HIV, Improve Patient Safety to reduce the risk of infection from donors
hepatitis B, and hepatitis C. The guideline to recipients.
will help patients and their healthcare The new testing recommendations for organ
providers feel confident that increased donors and transplant candidates have a Understanding
safety measures are in place so that all number of benefits for patient safety. Using Risks and Benefits
usable organs can be transplanted safely. the most accurate licensed tests means that
New Testing Requirements if an organ donor has HIV, hepatitis B virus, The chance of getting HIV, hepatitis
or hepatitis C virus infection, it is very likely B virus, or hepatitis C virus infection
The new guideline has the following it will be detected before transplant. through a transplant is very low. With
recommendations for rigorous testing the new testing recommendations, any
of organ donors and recipients for HIV, In the very rare case that an infection HIV, hepatitis B virus, or C virus infection
hepatitis B virus, and hepatitis C virus. spreads from an organ donor to an organ as a result of transplant will be quickly
recipient during a transplant, healthcare identified so therapy may begin.
All organ donors (living and deceased) providers following the new testing
should be tested: recommendations will identify this infection It’s important for transplant patients
• Before organ transplant promptly so that treatment can begin to have individual risk and benefit
immediately. Highly effective therapies have conversations with their healthcare team.
All organ recipients should be tested: been developed for HIV and hepatitis B virus, Studies have shown that patients who
• During the transplant medical and a cure for hepatitis C virus is available. accept organ offers, regardless of the
evaluation process history of the donor, have a higher chance
• Shortly before transplant Hepatitis B Vaccination of survival than those who decline organ
• 4-8 weeks after transplant offers. In some cases, patients who decline
The new guideline suggests that during an organ offer may not receive another
The new guideline recommends that the the transplant medical evaluation process, offer, may be too sick to accept another
most accurate licensed or approved tests healthcare providers should assess each offer, or may receive an offer from a donor
be used for all organ donors. These tests patient’s hepatitis B vaccination status. with a similar history.
are nucleic acid tests, sometimes called When possible, transplant healthcare For additional information, visit cdc.gov/ 9
NAT, and they are very accurate. providers can use hepatitis B vaccination transplantsafety.
How to Prepare
Your Child for a
Hospitalization
By Shani Thornton, and fear. Here are a few tips to help create small toys, activities, snacks, phone charger,
MS, CCLS, RWWP a plan for your family. medical records, emergency contacts, pen
and paper. Many families leave their go-bag
W
hen your child has a chronic Emergency Visit in their car or have a specific location within
illness, hospitalizations and their home. It can also be helpful to leave a
urgent care visits may become Pack a bag that can easily be accessed during reminder note to grab items that may not
10
more frequent. Feeling prepared for these a medical crisis. The emergency go-bag already be packed, such as a phone, tablet,
medical admissions can help ease anxiety should include extra clothes, comfort items, and wallet.Additional Resources
Children’s Books:
First Time Hospital
By, Jess Stockham
Going to the Hospital
By, Fred Rodgers
Going to the Hospital...What Will I
See? By, Jaynie R. Wood
Surgery on Sunday By, Kat Harrison
Taking Your Child to the Doctor or
Hospital By, Patricia Weiner
The Hospital Bedtime Story
By, Jessica Ehret
Hospital Admission is beneficial. Remember to use simple think you should ask the nurse or doctor
When your child has an upcoming medical words that they can understand. Explain at your pre-op appointment.” School age
procedure that will involve an overnight what they will experience using their children can also pack comfort items,
stay, help them feel prepared by including five senses. For example, you will have a books, tablets, headphones and music.
them. Talk to them about what they blood pressure cuff on your arm. It may
will experience in words that they can feel like a tight hug for a few seconds. You Teens (12-18years)
understand. It is helpful to be honest and can choose to hold my hand or pretend to
answer their questions to the best of your blow out birthday candles. Telling teens at least a week in advance is
knowledge. ideal. They should have an active role in
Help your child decide what comfort items their medical care, communicating and
Infants (0-12mos) they would like to pack. If you are bringing advocating for their needs with the medical
a tablet, it may be helpful to load it with team. They may choose to pack toiletries,
Caregivers can help their infants feel some new games or movies. If the hospital comfort items, tablets and a phone. It is
prepared by making sure they have admission is for more than a few days, important to provide them with privacy
comfort items packed, such as a soft your child may want to pack their own during their hospital admission. Having an
blanket, plush toy and pacifier. Infants pillow case, stuffed animal or blanket. It’s open dialogue about when they would like
are able to pick up on their caregiver’s also helpful to have a small photo album you at bedside and when they need a break,
emotional responses, so it’s important to with pictures of family members and pets should be discussed.
express confidence and security. When a that your child can look at.
caregiver is distressed, infants will also
respond in a similar way. Distraction items School Age (6-11 years) Shani Thornton, MS, CCLS, RWWP is
such as bubbles, board books and singing a a Certified Child Life Specialist and a
lullaby can help ease their fears. Children who are school age should be parent of two boys. She provides child life
told about the admission 5-7 days in services through her private practice, in
Toddlers (1-3 years) advance. They may have more questions Northern California. She supports families
about the procedure, length of hospital coping with life’s challenges of illness,
For toddlers, it’s best to tell them a day stay, and if it will be painful. Provide them loss, trauma, and transitions. Through
before their admission. Use very simple with honest information and validate therapeutic play, creative arts, education,
words that they can understand. It is also their feelings. You can begin to help them and emotional support, she helps children
recommended to incorporate medical play communicate with their medical team process these challenges and create a
and items that they may see or experience. and advocate for themselves. For example, coping plan to best support their needs.
Reading books and watching short “These are great questions you have. I She offers in-home visits, phone/virtual
animated videos about going to the hospital consultations, caregiver workshops, and
can also help. Pack a bag with comfort support to community programs and
items, small toys, and bubbles. Providing schools. She is also a Registered Wonders
opportunities for them to make choices, will & Worries Provider, serving children who
also give them a sense of control. have a loved one with a medical diagnosis.
She published a children’s preparation
Preschool (3-5 years) book, “It’s Time For Your Checkup: What
to expect when going to a doctor visit”
For preschool aged children it is helpful and is a current Board Member of the
to tell them a few days in advance. Sacramento Chapter of California Play
Incorporating medical play, books, Therapy Association. She can be reached
videos and even creating a short social at ChildLifeMommy.com. 11
story about what they will experienceDPC’s State Advocacy
Program Works to
Advance State Policies
that Improve Dialysis
12
Patient OutcomesBy Kelly Goss, to Medicare supplemental insurance, or education efforts on behalf of patients
J.D., LL.M., Western Region Advocacy Director Medigap, for ESRD patients under age 65; with kidney disease and their families.
increasing caretaker support to assist with Moreover, it has also enabled us to begin
H
istorically, health policy issues that home dialysis so that more patients may to identify key legislators across the
impact End Stage Renal Disease opt for home dialysis; ensuring protections states who can be champions for dialysis
(ESRD) patients have largely been and benefits for living organ donors patients and in helping us build a stronger
focused at the federal level since the vast so as to increase the supply of kidneys base of support across the country to
majority of ESRD patients are on Medicare, available for transplant; establishing advance the issues important to our
a federally-run health insurance program, kidney disease prevention and education patient members while involving our
as their primary insurer. Hence, much of task forces to increase awareness, slow members in the process.
the decision-making with regard to ESRD disease progression and help patients
policies has come either from Congress or better navigate their treatment options; So while DPC’s state advocacy program
from within the U.S. Department of Health and supporting telehealth expansion that is still relatively new, it is rapidly gaining
and Human Services (HHS) since both have includes ESRD services so that dialysis traction through its engagement efforts
oversight of the Medicare program. with state legislators and other policy
stakeholders to educate them on our
However, in recent years, states policy priorities that will lead to
have become more actively
engaged in health policy
legislation, in large part
due to their expanded role
in the development and
implementation of the
state health care exchanges
following the passage of the
Affordable Care Act as well
as other political dynamics
at play. Rather than continue
to have a narrow scope focused
primarily on state Medicaid
programs and budget issues,
several states have begun to introduce
broader legislation and
regulatory policies that
would impact ESRD
patients at a much
larger level. As a result,
DPC has shifted more better health
attention to state outcomes for dialysis
policy efforts over the patients. We look forward
past few years, and to our continued work with our
in 2019 established a Patient Ambassadors and Board Members
state advocacy program to elevate the voice of ESRD patients and
that now includes two patients have greater flexibility to ensure advance our state and federal advocacy
dedicated, full-time staff who are focused continued access to vital care. priorities, and we encourage those of you
on state policy issues and government not already engaged to reach out to us and
relations across the country. The COVID-19 pandemic has crippled to get more involved.
many state budgets, temporarily halted
Although DPC’s state advocacy program state legislatures’ ability to focus on a For more information regarding DPC’s
is still in its infancy, its’ staff have already plethora of issues unrelated to COVID-19 policy priorities, please visit the policy
helped lobby legislators to defeat state and presented challenges to engaging section of our website: https://www.
legislation that threatened patient access face-to-face with state law makers. dialysispatients.org/policy-issues/.
to care and vital financial resources to help However, it has also presented an
patients afford their insurance premiums. unexpected opportunity for DPC state For general ESRD information and a list
DPC staff have also made inroads advocacy staff to focus on relationship- of resources in your state, please visit:
educating policy makers about dialysis building activities with state legislators https://www.dpcedcenter.org/resources/
patients’ needs and have been working and their staff by serving as a helpful state-by-state-resources/.
with coalition partners to help introduce resource of COVID-19 information specific
and advance legislation that provide to dialysis and transplant patients. This, To join DPC or apply for our Patient
more support for ESRD patients and lead in turn, has increased awareness about Ambassador program to help elevate the
to better patient outcomes. Examples of DPC as a valuable patient-led advocacy voice of dialysis patients, please visit: https:// 13
such legislation include: expanding access organization engaged in policy and www.dialysispatients.org/get-involved/.ENCOURAGE YOUR FRIENDS AND
FAMILY TO JOIN OUR COMMUNITY!
Invite your friends and family to become
members of our affiliate organization –
with you. However, we know there are more
who can benefit from being a part of our
We also provide tools and resources to
help them manage their health. Working
Dialysis Patient Citizens (DPC). community, including others in your support together we help to create a unified voice to
Membership is free and open to all dialysis system. We also know there is strength in make a difference with our elected officials
and kidney disease patients as well as their numbers, when we tell our lawmakers about to help improve your quality of life. So,
families. Our goal is to help empower you the issues that matter to patients. what are you waiting for? Encourage your
to live your life to the fullest, which is why DPC helps our members tell their stories loved ones to join today and help us build a
we are sharing this excellent publication and share their concerns with policy makers. stronger kidney community together!
https://www.dialysispatients.org/get-involved/join-dpc/general-membership/
SPANISH
The DPC Education
Center has an additional
section on its website for
Spanish Resources. We
have translated our past
RESOURCES
Kidney Citizen articles and
categorized them by topic for
easy reference. For example,
you will find articles under
the topics of Dialysis,
Treatment, Transplant, Quality
AVAILABLE!
of Life, Diet/Nutrition/
Exercise, Peer Support, Travel,
Relationships, Advocacy,
Other Illnesses and Advance
Care Planning. You will also
find the English translations
there as well. Check out our
updated Spanish Resource https://www.dpcedcenter.org/resources/spanish/
page at
14Join Us by Telephone
for Our New Program!
By Kathi Niccum, The advantages are many and it is hard
EdD, Education Director to come up with any reasons not to join.
At the top of the list is that you will learn
I
n March we launched our first Patient more about kidney disease, know you
Support Group meeting by telephone. are not alone, and that hope exists. The
Having a support group has been one telephone support group means you do not
of our goals for years and we are happy have to travel, you do not have to dress up,
to announce it is now a reality. We chose and you can even use your phone’s speaker
to have the group meet by phone instead if you do not want to hold the phone! You
of online in a Zoom meeting because we can listen to the experiences of others,
think most people use the telephone. share tips that work for you which might
And we want the support group to be then help someone else, and ask questions
available to all patients at any stage of or listen to the professional guest on the
kidney disease and to their families. call. You can both learn from others and
On the second Tuesday of each month, others can learn from you. You can talk or
at 3:00 pm Eastern, you can join in the listen – no one will put you on the spot to
conversation or just listen during the one- share your ideas or your feelings.
hour meeting. The facilitator for the group
is a kidney patient, who is our past board The group works because people are
president for the DPC Education Center, respectful of each other. Only one person
and she will be joined by a DPC staff talks at a time. It is not a gripe session
member on the calls. In addition, there will or a time to complain about facilities or
usually be a different “professional guest” staff. It is a time to know that you are not
(doctor, nurse, social worker, dietitian, alone in your journey and that there is
psychologist, etc.) each month. To learn hope even when there are challenges to
more about each month’s call, visit our overcome. Learning new information helps
web page at https://www.dpcedcenter.org/ us feel more confident and in control of
news-events/dpc-support-group/. the choices we make. The ideas and tips
from others who have walked the path of
Some people will be wondering why they kidney disease are invaluable. We hope 15
should consider joining a support group. you will join us!Cystinosis: A Rare
and Under-Recognized
Cause of Kidney Failure
By Ladan Golestaneh, CTNS which affects “Cystinosin”, the protein chromosomes 17), then their children have a
MD, MS that normally takes Cystine out of the 1 in 4 chance of getting the disease.1,4
lysosome. As a result of this defect, Cystine
What is Cystinosis? accumulates in the cells of various organs There are three forms of Cystinosis
and tissues of the body and causes extensive depending on the age at which disease/
Cystinosis, or Nephropathic Cystinosis, is damage. The disease is progressive, meaning symptoms occur: 1) infantile (95% of
a rare genetic disease that affects boys and it gets worse with time.3 Cystinosis is passed cases), 2) adolescent (late) onset and 3)
girls equally and causes a defect in the way down to affected individuals through an adult onset.5 The rest of this article refers
that lysosomes (small organelles in cells that autosomal recessive gene. This means that to the infantile form.
remove waste products) are able to remove if both parents are carriers of the CTNS
16
an amino acid (protein subunit) called gene (meaning they themselves are not The organs most commonly affected are
Cystine.1-4 The name of the defected gene is affected but carry the mutation on their the kidneys, the eyes (causing blindnessand damage to the cornea), the pancreas Dialysis is designed to replace the Eyes and other organs
(leading to diabetes), the thyroid gland function of the kidneys such as waste Cystine crystals accumulate in the eyes
(leading to hypothyroidism), the skeletal removal and fluid removal, but those which makes it hard for affected patients
muscles leading to muscle wasting and individuals with residual urine output to tolerate light (photosensitivity). The
swallowing difficulty and the lungs, leading require less ultrafiltration with dialysis.1 crystal deposits can damage the surface of
to difficulty breathing.1-4,6 (Figure 1) In this way the indications for dialysis the eyes and eventually lead to ulceration
with Cystinosis are similar to other causes of the cornea and damage to the retina
How is it diagnosed? of ESKD. 2,3,5 Patients with Cystinosis can and blindness.2,5,6
also receive kidney transplants (usually
Cystinosis is not a common disorder, from family members) as treatment Cystinosis can also result in hormone
affecting only 600 individuals in the for their ESKD. While the medication deficiencies such as thyroid, insulin
Unites States. As a result, it is hard burden imposed by the receipt of a (diabetes) and testosterone because of
to diagnose. It takes a very astute kidney transplant can be overwhelming, the effect of Cystine accumulation in the
pediatrician to be able to diagnose fortunately the effects of Cystinosis never thyroid, pancreas gland and the gonads.2,5,6
affected individuals at a very young age. recur in the transplanted kidney.4 In
An elevated Cystine content in white effect, patients with ESKD who receive Cystinosis also causes muscle weakness
blood cells (granulocytes, a type of a kidney transplant do not exhibit the and wasting causing mobility problems
white blood cell) makes the diagnosis of complications of Fanconi syndrome and difficulty swallowing. 2,5,6
Cystinosis. This test can be drawn by any but they still have manifestations of
lab or doctor’s office but needs to be sent Cystinosis in their other organs and must Finally, while individuals with Cystinosis
to a special reference lab immediately remain vigilant with remaining adherent have normal intelligence they may have
after collection, for measurement of to their Cystine lowering and anti- problems with visual/spatial thinking and
Cystine content.1,4 Genetic testing for rejection transplant medications. certain neuropathies.2
CTNS mutations is also available.
What are manifestations Figure 1 (from Brain
of Cystinosis? Cystinosis United Visual or learning issues
Cystinosis Symptoms
Kidneys | Spot the Signs and Eyes
The first organ system to be affected is Understand the Damage Sensitivity to light (photophobia)
the kidney system which is why pediatric (cystinosisunited.com)
nephrologists are usually the doctors to Blindness
diagnose it.3,4 One of the first signs of
the disease is the production of copious Throath
amounts of urine with the leakage of Trouble swallowing
electrolytes, bicarbonate, phosphorus
wasting, water and salt from the body. Thyroid
This is known as Fanconi syndrome, a Poorly working thyroid (hypothyroidism)
condition that can happen with other leading to slowed growth
kidney problems, but is most common
and severe with Cystinosis. This condition Lungs
occurs anywhere from 3-18 months of age Problems breathing
in ‘Infantile Cystinosis’. These children
become dehydrated and malnourished. 1,4 Pancreas
Diabetes
If left untreated, Cystinosis kidney
damage leads to severe dehydration and
electrolytes imbalances, weight loss and
Kidneys
malnutrition and eventual end stage Fancony Syndrome (a type of kidney Disease)
kidney disease (ESKD). Affected children Kidney failure
have low appetite, ongoing nausea
and have difficulty feeding. With the Male reproductive organs
development of Fanconi syndrome, the Not being able to father children
blood becomes acidic as well which leads naturally (fertillity)
to worsening malnutrition. Because of
the phosphorus wasting in the urine and Muscles
Vitamin D deficiency, children can also
Muscle weakness and decreased
develop Rickets (weak bones) which can
muscle mass (myopathy)
result in bone pain and growth problems.2,3
ESKD usually develops by 10 years of Bones
17
age and is treated with routine dialysis. Softening or weakening of bones (rickets)be more hands on and who have more
resources available) to adult providers.
The future
Because of advances in research and
therapies, Cystinosis can be well managed
if Cysteamine therapy is started early
and the patient is managed by a team of
providers well versed in all aspects of the
disease. However, ESKD and other organ
manifestations of the disease though
delayed with therapy, are inevitable. Also,
the burden of adherence to available
therapies make quality of life more
difficult to attain. Major strides have been
made by researcher who are studying ways
to treat Cystinosis. They are focusing on
transplanting stem cells (cells that have
the capacity to turn into any type of organ
cell) with normal Cystinosin (the protein
that is missing in patients with Cystinosis)
function into affected patients. But it is
still too early to declare this approach a
success.2
Treatments for Cystinosis Ultimately, a multidisciplinary team My Personal Story
Thankfully, advances in research have of professionals are needed to care for
resulted in development of effective patients with Cystinosis. These include As an adult nephrologist, I have had the
therapies for Cystinosis called “Cystine nephrologists, transplant specialists privilege of caring for those individuals
depleting therapy”.6 Cysteamine is the (for those who are transplanted), with Cystinosis who have reached
main agent and it was approved for use endocrinologists (for the thyroid and adulthood. They were transitioned to
in the 1990s. The most widely used form diabetes issues as well as growth and me from the pediatric nephrologists in
is “Cystagon™”. If the drug is started sex hormone deficiencies), nutritionists my institution. Initially I had difficulty
at a young age it can delay ESKD up to (for the malnutrition), neurologists because I did not have expertise in
10 years. But even if started after ESKD and physical therapists for the muscle handling the many needs of these
onset, it can prevent complications weakness and pulmonologists for the patients, despite the best efforts of
of Cystinosis that affect other organs. breathing issues that may arise, among the pediatric doctors to educate me. It
Cystine depleting therapy needs to others. Because the well-being of patients was the amazing communication, self-
continue after kidney transplantation.2,4 is so indelibly linked to adherence to management skills of my patients, and
Cysteamine is difficult to take. A typical medication regimens and because these their patience with me while I learned
patient can take up to 6-7 pills every 6 patients face many challenges with this how best to care for them, that made our
hours throughout the day. The dosing diagnosis and all of its manifestation, collaboration successful. Today I can boast
of the medication depends on how special attention should be paid to that my adult Cystinosis patients are
much it reduces the level of Cystine sustaining mental health and a positive extremely high functioning and continue
in the WBC cells, and these levels are outlook for patients with Cystinosis. This their excellent progress towards living
monitored. It also produces side effects is particularly crucial during the transition close to normal lifestyles despite the
like a sulfur smell to the breath and from pediatric providers (who tend to burden of their multifaceted disease.
emanating from the body, and nausea and
vomiting.4 Thankfully a delayed release References
formulation of Cysteamine (Procysbi™)
was introduced in 2013 that allows for 1. Langman CB, Barshop BA, Deschênes G, et al. Controversies and research agenda in nephropathic
every 12 hours.6 The pill burden for this cystinosis: conclusions from a “Kidney Disease: Improving Global Outcomes” (KDIGO) Controversies
Conference. Kidney Int. 2016;89(6):1192-1203.
formulation, however, remains high.
2. Foundation CR. What is Cystinosis. What is Cystinosis? Web site. https://www.cystinosisresearch.org/
Cysteamine does not help with the eye what-is-cystinosis/; Accessed 2/7/2021. Published 2021. Accessed2021.
manifestations of Cystinosis. For that, 3. Medicine USNLo. Cytinosis. MedlinePlus-Genetics Home Reference Web site. https://medlineplus.gov/
patients use cysteamine hydrochloride genetics/condition/cystinosis/#resources; Accessed 2/7/2021. Published 2021. Accessed2021.
eye drop that dissolve cystine crystals. 4. Emma F, Nesterova G, Langman C, et al. Nephropathic cystinosis: an international consensus document.
Nephrol Dial Transplant. 2014;29 Suppl 4(Suppl 4):iv87-94.
They have to self-administer drops up to
5. Foundation NK. Nephropathy Cystinosis. https://www.kidney.org/atoz/content/nephropathic-cystinosis;
10 times a day, which is very difficult to Accessed 2/7/2021 Published 2017. Accessed2021.
18
follow and for that reason most patients 6. Horizon. Understanding Cystinosis. Cystinosis United Web site. https://www.cystinosisunited.com/what-
use the medication less frequently. is-cystinosis; Accessed 2/7/2021. Published 2019. Accessed2021.Education and support for
patients and their families
RARE GENETIC
About 500 to 600 people in the Cystinosis is passed down
United States have cystinosis. in a person’s genes.
Learn more, get tips, and find resources at
CystinosisUnited.com, and follow us on Facebook
to join the conversation. Scan the QR code!
CYSTINOSIS UNITED and the HORIZON logo are trademarks owned by or licensed to Horizon.
All other trademarks are the property of their respective owners.
© 2021 Horizon Therapeutics plc DA-UNBR-02347 01/21My Experience Working
During the COVID-19
Pandemic While Living
With A Kidney Transplant
By Merida Bourjolly, not the only financial undertaking I faced;
DPC Education Center President before reopening, I had invested in masks,
gloves and social distancing measures
Anxiety of coming back for myself and my clients. My need to
provide for my family made me nervous
I am sure everyone has felt the impact of the about balancing my own health and their
COVID-19 pandemic. This is the first time safety. Earning a living meant sending
I have experienced a complete shut down myself back into an environment that left
in my industry due to a virus. Additionally, me exposed while hearing the COVID-19
the lockdown provided an opportunity for a numbers were increasing.
pause and a chance to rethink my priorities
and what is meaningful. Grooming is a treasured jewel to many,
there is no question that clients miss
From a financial perspective, this shut their stylists. Clients reached out during
down taught me how to adapt to uncertain the lockdown, and a few clients asked me
economic times. I am really grateful to make house calls which would have
for technology that helped us connect put my health at risk. Few professional
virtually, provided an opportunity to work, encounters require prolonged bouts
20
and to make it through a stressful time. of close contact like appointments at
Sustaining a business without revenue is hair or beauty salons. Customers areclamoring to fix gray roots, shaggy beards
and chipped nails in reopened salons
after months in lockdown, despite stark
changes to how these services can now be
offered.
Hoping that everyone
would be truthful
about their condition
My first day back to work was filled with
so many emotions such as being excited
to return to some sort of normalcy. Yet my
mind was filled with anxiety of being at
risk of contracting COVID-19. I was happy I require all who enter the salon to wear a handles), tables, light switches, phones,
to get back to what I love doing which is mask and get their temperature checked. faucets, bathroom sinks, keyboards, etc.
servicing my clients. I felt comfortable I presently wear a face shield and a mask
and reassured to return to the salon with while servicing clients. I do not service I wash my hands regularly with soap and
the extreme measures I have taken to walk-in clientele; clients must call in their water for at least 20 seconds. I use an
make sure the clients and myself are safe. appointments. alcohol-based hand sanitizer containing at
In return I hoped that my clients would least 60% alcohol if soap and water are not
honor and take the same precautions I was We also have a questionnaire, that available.
taking to not expose them to COVID-19 customers must fill out upon their arrival.
and be truthful to protect me. This questionnaire includes detailed We have signs up that say “Please vover
questions of a clients travel, in and out of your coughs and sneezes and wash your
As a transplant recipient and a Licensed state, their contact or exposure, and all hands regularly.” Our signs also ask
Cosmetologist, I have a new level of temperatures recorded and kept on file. clients if they are experiencing symptoms
anxiety now of catching the virus from If the mask becomes wet, visibly soiled, to stay home.
people who do not seem sick or have or contaminated at work, we provide new
symptoms. I might be exposed to the ones to the clients. I also realised that the people
virus when I provide services to my that come to me may have
clients. As stylist we are in close contact I do my best to remember and practice
the same anxiety and fears
with clients, coworkers, vendors, service not touching my face, mouth, nose, or
providers, and delivery people. Transplant eyes after touching different surfaces or
of getting their hair done.
patients may be at higher risk for severe frequently touched items such as tables, Hair salons reopen, and clients rush back.
complications or fatality from COVID-19 sinks, combs, cash, or merchandise within Many beauty salons and barbershops are
because people who receive a donor the salon. I practice staying at least 6 feet booked solid with appointments, showing
kidney are often on immune-suppressing away from clients and coworkers, when how much grooming is a treasured
medications making our immune possible. We limit gatherings inside the experience. Perhaps our collective
system low. This feeling caused me to salon, we leave every other styling chair desire for a haircut or nice nails is not so
research taking further precautions. empty and clients are not allowed to bring surprising. For many segments of society,
Such as wearing longer sleeve clothing, additional people to their appointments. beauty services are central to a sense of
supplying the clients with face shields identity. And heading back to salons after
and disposable capes. Some of these precautions were not a collective social trauma could be one
difficult for me to get use to because as way to recover some normalcy. In most
After a couple of weeks a transplant recipient wearing a mask in states, hair salons and beauty parlors
my brain is accustomed public and at work was a precaution I was reopened earlier than other businesses
familiar with. that were deemed nonessential.
to what to do, to not leave
myself exposed due to taking We clean and disinfect frequently touched The COVID-19 pandemic has created
antirejection drugs to avoid surfaces between each client such as new challenges in the ways many people
compromising my health. styling chairs, hair washing sinks, massage work and connect with others, which
It is especially important, to create a tables, credit card devices, keypads, all may raise feelings of stress, anxiety, and
safe space by implementing responsible non-porous multi-use tools, such as depression. Communication was important
safeguards and to follow all of CDC shears, clippers, nippers, brushes, combs, – explaining to clients that their safety is
guidelines when servicing the clients, etc. and other items that clients routinely important to me and why it is important
especially since I am in the “personal care touch. to have protocols implemented to keep all
services” category. To lower the chance of us protected. That way we can help the
of getting the coronavirus that causes It took some time to get used to cleaning customers feel comfortable returning to the
COVID-19, transplant patients should and disinfecting the following areas or salon. Now that COVID-19 vaccinations are
follow the CDC’s guidance on how to avoid items on a routine daily basis such as more available to more groups of people, 21
catching or spreading germs. countertops, doorknobs, toilets (including they may bring a peace of mind to everyone.You can also read
