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50  The Spectrum of Patient and Caregiver Experiences

cess happen in an outpatient setting really
hit me hard.
Robert’s Mother: My son, Robert, was
12  years old when we were told that he
needed to start dialysis. While Robert was
in the ICU receiving his first rounds of
hemodialysis, I was in shock. Kidney failure is seldom something you plan to go
through. Even as a registered nurse, the
words “renal failure” and “dialysis” were
overwhelming. Organ failure of any kind is
something I had heard about in the movies
or read about in an article or a magazine. I
had not known anyone who had personally
gone through any kind of organ failure.
How could it happen to my own son?
Thomas’s Mother: We had no time to
prepare, to make decisions, or to become
properly educated. All of the sudden we
were being asked to make decisions regarding our lifestyle and the type of dialysis we
preferred. As the nurse was telling us about
dialysis it was all I could do to hold myself
together and not break down in tears as I
thought, “What a terrible way for a kid to
live.” We managed to make it through the
training, consent to have my son listed,
consent to have the nurse set up appointments at two transplants centers, and get
outside before I broke down into tears.
• Uncertainty About the Future:
Lily’s Mother: Lily was on dialysis for

10 months. When I see her scars now from
her HD and PD catheters and her g-tube
all of the memories come flooding back.
Thankfully her scars don’t bother her. I
hope that one day she will feel as proud of
all that she has endured as I am. I also
hope that she will never have to do dialysis
again.
Robert’s Mother: I had so many questions and feelings that I didn’t even know
how to put into words. “How will this affect
his future? Our family’s future?” Our home

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was several states away from the hospital.
“Would we have to relocate? Would he
have to have a transplant? How would we
get through this? Would we get through
this?”

Box 50.2 Loss of Control

• Loss of Childhood Memories
Lily’s Mother: After enduring the previous 6  months of Lily’s hemodialysis
treatments, adding peritoneal dialysis as
well put me over the edge emotionally. I
resented that she needed to be dialyzed
14+ hours each day, and that she was
being robbed of a normal childhood.
Having two dialysis catheters meant that

Lily could not get wet for risk of infection.
This made bathing her very challenging.
At home we gave her sponge baths and
washed her hair in the sink. Still, Lily
loved to watch her older sister take baths
and I remember longing for the day when
they would both be able to get into the tub
together. Sundays were a very special day
because Lily’s dialysis nurse at the hospital would let her play in a bucket of water
in her crib and get as wet as she wanted.
During that year of dialysis I needed a
sense of normalcy during an otherwise
abnormal situation. I took many photos
and usually not of Lily in the hospital. I
needed proof that in addition to all of the
time she spent in the hospital she was also
growing up like every other baby. When I
look back at those photos now, I know that
hidden underneath her clothes are catheters and feeding tubes. It gives me comfort
that she is smiling in the photos, and that
she doesn’t remember any of it.
Thomas’s Mother: While on dialysis,
my son was academically falling behind
and not reaching his benchmarks. I wanted


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the school and his teachers to do everything possible to make sure he was learning, but, as a mom I could see how
challenging it was for him to stay on task

and focus on his learning. In the end, his
health was the priority and that became
our focus. Years later, after he had another
transplant, we had academic testing done
because he was beginning to struggle with
reading fluency and comprehension. What
we discovered was that the gaps and deficiencies in his academic skills correlated
with this time period prior to his first
transplant and the time he was on
dialysis.
• Trust in the Clinician and Care Team
Lily’s Mother: We were blissfully
unaware of all of the things that could
potentially go wrong during hemodialysis.
We put our faith in the care provided by our
dialysis nurses. We did have two frightening incidents when dialysis did not go as
planned. Both times, the nurses responded
to the situation right away and called in the
doctor. We felt reassured that the matter
was handled correctly and efficiently. The
incidents, however, also reminded us of
how challenging and dangerous it was
each time we dialyzed our infant daughter.
Sensing my feelings toward all of this dialysis, our doctor said something very wise
to me back then: “This is short-term pain
for long-term gain.” He was completely
right and we have entrusted him with her
care for 13 years now.
Robert’s Mother: We met so many
wonderful doctors and medical professionals but when I saw “our” nephrologist I felt

like everything was going to be okay. He
knew everything about my son, more about
our family than anyone else there, and he
knew about all the questions I was afraid to
ask. I felt so alone, and I valued his visit
and his wisdom.

A. Tong et al.

Box 50.3 Change in Family Dynamics

• Strain on Marriage and Relationships
Thomas’s Mother: We rarely left my
son to the care of anyone else. The one
event we did allow him to do was his annual
trip to camp with my parents. My mom was
one of two people we would leave him with.
She was such an important part of our
plan. Since she had flexible hours/days at
work, she would take him to dialysis if we
were not available. In preparation for the
trip to camp we had her go through a mini-­
training with the director of the dialysis
center. The nurse was more than happy to
train my mom in what to do while my son
was in her care. Everyone thought that the
night away would be great for my partner
and me, but it was just the opposite. We
were anxious the entire time and worried
about everything that could go wrong. We

decided that we preferred to have my parents come to our house to relieve us for an
hour or two.
Jacob’s Mother: I can see where some
marriages would also be strained by this
experience, but for us, this didn’t happen.
We approach it very much as a team. In
fact, we often marvel at the fact that our
mental and emotional breakdowns never
happen at the same time – so, when I finally
breakdown, my husband is the one to be
strong, and vice versa.
Anna’s Mother: I recall that Anna’s illness really pulled us together as a family.
We were working together to focus on saving her life. My husband and I took over
different aspects of her care. I specifically
focused on more day-to-day things and he
looked at the long-term strategic planning.
Honestly, she became our entire lives and
focus. There was very little time for anything else. There was lots of stress, anxiety
and worry. I knew other families that broke
up or had one partner tune out, but that


50  The Spectrum of Patient and Caregiver Experiences

didn’t happen to us. I don’t think either of
us were thinking of ourselves then. It was
more of how do we get this done and make
sure she survives AND thrives.
• Sibling Inattention and Neglect
Lily’s Mother: Our older daughter,

Ashley, was 3  years old when Lily was
diagnosed and her life really changed.
Instead of attending morning preschool,
Ashley needed to go to all-day preschool,
5 days a week. One of us would take her to
school early in the morning, then head to
the hospital for dialysis, then someone
(usually a grandparent) would pick Ashley
up from school and whoever would be with
Lily at the hospital would finally see Ashley
in the late afternoon. For a long time Ashley
thought all siblings had medical problems.
We were very concerned that Ashley would
feel left out by all of the attention Lily was
getting, so we made an extra effort to spend
time one-on-one with her and to make sure
she had plenty of grandparent attention. We
also included Ashley in small but important
PD steps at home, like turning the machine
on and carrying the bag of fluid to the
machine so it could warm up.
Robert’s Mother: I am a single mom
with three high-needs kids. I tried to plan
activities for the times that Robert would be
going on and off dialysis so that the other
kids would be safe and so that I wouldn’t be
interrupted but I was not always successful. My other two kids were very understanding and tried to help when they could.
I will never forget the day that the man who
delivers the dialysis supplies called to see if
he could come earlier than scheduled. It

was a snowy day and it was our responsibility to have the path clear for the handcart. My daughter offered to go shovel a
path through the snow.
Jacob’s Mother: Going through something like this as a family has ultimately

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made us closer, but it certainly has challenges. We have an older son who was 13 at
the time his brother got sick, and he had a
period of time  – especially those first few
months – where he basically raised himself.
We have always thought of him as an old
soul, mature beyond his years, so he handled it like he handles everything in life –
he just handled his business. Still, it is hard
to realize how much of our attention he had
to do without.
• Need for Support
Lily’s Mother: We had a great support
system. My parents each volunteered to
take Lily to dialysis one day each week, and
my husband took her on Saturdays. My
parents also graciously offered to take Lily
to dialysis together on Sundays, to allow
my husband, our older daughter and me
some family time. I kept a blog going about
Lily’s medical situation so that I wouldn’t
have to constantly answer phone calls and
emails from everyone. Reading comments
was a great way for us to feel supported by
our family and friends.
Robert’s Mother: I remember feeling

overwhelmed and alone so much of the
time even though we were surrounded by
people who were caring and supportive. I
wished that the dialysis nurse would call to
check on us more often, not because we
were having any problems, but just because
I needed reassurance and to talk with
someone who understood.
Thomas’s Mother: Our family was
able to cope with the time my son was on
dialysis because we had a strong support
group. On nights he was dialyzed, friends
would make us meals from the dialysis
cookbook. Family members would show up
at our house to clean it for us. My sister-inlaw did our grocery shopping. Neighbors
mowed our lawn, raked the leaves and
plowed the driveway when it was needed.


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We did not need these things to be done for
us, but graciously accepted the help
because we understood this was their way
of helping us and showing they cared about
our family. My son being on dialysis was
an extremely humbling time. We had to
accept help when we didn’t request it and
show graciousness when we just wanted to
be left alone. We learned to go outside our

comfort zone and let people into our lives
because they cared about us. We needed the
support or our family, friends, neighbors,
coworkers, dialysis staff, and community.
Without all of their support we could not
have managed the emotional and lifestyle
challenges we faced.

Box 50.4 Lifestyle Restrictions

Lily’s Mother: We didn’t go anywhere out
of town with Lily during the first 16 months
of her life. Our lives consisted of driving
between the hospital and our home every
day. Once she was listed for transplant, we
couldn’t go more than 30 minutes from our
home in case we got “the call.” We parents
were going stir crazy. Each night, we
needed to be home before 8 pm when Lily
would be hooked up to the PD machine for
the next 10 hours. Usually we read books
together and she would drift off to sleep
and be laid in her crib while the machine
started to do its work. The majority of evenings, however, there were alarms or vomiting or some other reason that the
nighttime would not be restful. Ten kilograms (or 22 pounds) of weight was the
magic number the surgeons wanted Lily to
reach to list her for transplant. Each day
was a battle because she was so nauseous.
We needed to feed her enough fortified milk
to help her grow, but not so much that she

would vomit it back up. Lily vomited about
10 times each day – in her crib, all over our
house, in her car seat on the way to the

A. Tong et al.

hospital, etc. I was constantly cleaning up
after her and worrying that she would not
grow large enough for her transplant.
Thomas’s Mother: The dietician met
with us to give us meal plans and guidelines to follow regarding diet and hydration. All of the healthy lifestyle choices we
had been living by the past 6 years we disregarded and replaced with a dialysis-­
friendly lifestyle. I researched and found
great suggestions and recipes. All information I found was geared toward adult
patients, so I cleared all the information
with our pediatric dialysis staff. It wasn’t
long after returning home from my son’s
nephrectomy that we cleaned out our cupboards. We decided that it was better for us
to get rid of food than it was to have it in
the house and create temptation. We were
committed to the family eating only the
foods that Thomas could eat.
Anna’s Mother: We were brave enough
to manage a trip to Disneyland during this
time. It took weeks of coordination with the
dialysis supply company, the hotel, and the
dialysis nurses at our children’s hospital.
We had to ensure there was a hospital
nearby that could handle pediatric dialysis
in case of emergency. We had to contact the

hotel to make sure they would accept medical supplies mailed prior to our visit and
would ship to a place that was not our
home address. We had to time our visits so
that we would be back at the hotel every
evening in time to hook her up. We had to
stay awake most nights, scared that she
was going to roll out of the bed and pull her
tube out. But it was worth it – 100%. She
had an amazing time and got to be an
everyday kid enjoying Disneyland with her
cousins.
Jacob’s Mother: We were able to travel,
first by taking a road trip and then later,
when we were braver, by plane. It was
through our travel experience that we
developed our spine, so to speak. Travel on


50  The Spectrum of Patient and Caregiver Experiences

PD forces you to assess how you want to
approach life, in general – do you want to
play it safe all the time, taking very little
risk? Or, are you willing to take some calculated risks? The road trip went smoothly,
but we were on edge, scared that we would
forget some critical supply or that he would
end up getting sick now that he stepped
outside our little house bubble. He didn’t
and we had a great trip. Yay, us! The plane
ride took two attempts. On our first attempt,

Jacob threw up on the way to the airport.
We worried, of course, but with no other
symptoms, we chalked it up to being carsick and decided to keep going. Jacob
fainted 20  minutes later when we were in
the security line. We were taken by ambulance to our local children’s hospital ER,
where he very promptly recovered, once he
had IV fluids. The doctors concluded he
was dehydrated, adjusted his dialysis prescription for that night, and gave us their
blessing to go on our trip. Our little bravery we had earned from the road trip had
vanished and we were shook up. We were
so tempted to play it safe and just cancel
the trip. That was when we made a critical
decision, and we still use it to guide all of
our decisions – we decided that we needed
to teach our son how to live safe, but not
live scared. If we cancelled our trip, we
were teaching him to live scared. So, we
went. The trip went fairly smoothly and we
have great family memories from it, but it
was so much more than a trip – I felt like
my son learned a little about the art of taking calculated risks, that I hope he carries
that with him.
Thomas’s Mother: I recall this time in
our lives being so emotional that I avoided
going out in our community to do day-today tasks such as: going to the drug store,
grocery shopping, going to community
events. It was such an emotional challenge
to “keep it together” in front of my son that
avoiding situations was easier than facing

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them. People in our community are so kind
and wanted us to know that they were supporting us. They always inquired how my
son was doing and how we were doing.
Another reason we avoided public events is
that we didn’t want his health situation to
define our family. We wanted him to have as
much normalcy as possible.

Box 50.5 Caregiver Burden

• Hemodialysis
Lily’s Mother: Lily’s first hemodialysis
treatment was very scary for us. Once she
tolerated it well, she began receiving treatments a few times a week for 1 or 2 hours at
first. The number of days at the hospital
continued to increase until we were finally
at the hospital every day, 7 days a week for
4-hour HD treatments each time. It took
about 30  minutes to drive to the hospital,
then another 30 minutes to prepare her to
be put on the dialysis machine, then the
4-hour treatment, another 30 minutes post-­
treatment to take her off the machine, and
then another 30  minutes to drive home.
This meant we spent at least 6 hours each
day doing hemodialysis for our daughter.
This one simple treatment was very time
consuming, but so very important until she

could receive her transplant. When Lily
first started receiving dialysis, she would
take frequent naps. We could read a few
books and then she would soon be dosing
off to sleep. As she grew, however, her
awake time got longer and longer. And the
dialysis tubing seemed to be getting shorter
and shorter. We only had about 2–3 feet of
extra tubing to work with. Soon, she was
pulling up on the edge of her hospital crib,
then she was trying to walk across the crib
and away from the machine. We were
always nervous that she would accidentally


A. Tong et al.

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pull out her catheter, which would mean
another procedure to place it all over
again. Lily took her very first steps to her
dialysis nurse while being hooked up to the
machine. Eventually, she was not taking
any naps while on the machine. This proved
to be a very big challenge to entertain her
for 4 full hours of treatment each day. We
enlisted the help of every person who was
willing to assist us. Lily was too young to
watch videos so we sang songs, blew bubbles, and found new and interesting things

for her play with. Thankfully, the hospital
allowed us to leave many boxes of books,
music, and toys near her crib to rotate
through each day. All in all, we did daily
hemodialysis for 10 months each and every
day except on Thanksgiving, Christmas,
and New Year’s Day. On those 3  days, I
remember feeling a wave of relief that she
didn’t have to go to the hospital, but also
dread that she was not being dialyzed.
Jacob’s Mother: Life on hemodialysis
was no picnic. It dominated our day, once
you factored in the time to drive there, the
time to get set up, do the treatment, get
taken off, and then drive home. It was scary,
with all the beeping, alarms, and blood. It
was mind-numbingly boring. I also hated
the time in between HD, when I was painfully aware that his body was building up
all of the waste products that he needed to
get rid of – the weekends being the hardest
for that one, since this is when he went for
a longer chunk of time without dialysis.
Anna’s Mother: When Anna was
18  months old she went on hemodialysis.
We were at the dialysis center 5  days a
week for 4–5 hours at a time, plus an hour’s
drive time to get to and from. Keeping a
toddler entertained in the dialysis center
was quite a task. It’s hard to entertain an
18 month old when you can only sit still on

the bed. We had a storage box that was
filled with games that she could play with
while sitting up. Simple things, like

Tupperware containers full of rice with
measuring cups and spoons and funnels.
We had games with magnets. We had endless books of stickers so that she could put
stickers all over the storage bin.
• Peritoneal Dialysis
Lily’s Mother: All of the equipment
and many boxes of supplies were delivered
to our home. Her bedroom no longer looked
like a little baby’s nursery, but instead it
resembled a hospital room. I would check
on her repeatedly during PD to make sure
she hadn’t rolled over and kinked her tubing or pulled out her catheter or g-tube. I
was on mental alert 24 hours a day. After a
few weeks of not sleeping due to worrying
all night long, we brought in home health
nurses to monitor her PD at night so that
we both could get some sleep.
Jacob’s Mother: Choosing to do PD
was a clear advantage – being able to do
the dialysis at home, while he slept, was
so much better than going into the clinic
three times a week. He did have to do HD
for about a month after he was discharged,
while we were trained to do the PD and
his catheter healed. When we passed our
PD training, stocked up on supplies (So.

Many. Supplies.), and were given the
green light to start, life got much easier.
PD is a tremendous blessing in so many
ways. For one, he just seemed healthier,
receiving dialysis every day. It did not
take much time out of his schedule, since it
happened at night. His diet was liberalized, and we even got to push potassiumrich foods sometimes.
Anna’s Mother: When Anna was
2 years old she went on peritoneal dialysis. While this allowed us to do her dialysis
at home, it was a life-altering event again.
My daughter could finally return to day
care and eventually preschool. She was
ecstatic to be around kids again. But the