My Caregiving Journey
Through The Eyes of Advocacy Ambassador Melissa (Sanchez) Tolzien

My name is Melissa Marie (Sanchez) Tolzien. I am an Advocacy Ambassador for the
American Liver Foundation. I am a member of the National Kidney Foundation’s Kidney
Advocacy Committee. I advocate in memory of my Grandparents Linus and Aira
Sanchez.

My Grandmother was diagnosed with End Stage Liver Disease Idiopathic (Unknown
Cause) Cirrhosis in October 2012. I assumed my Grandmother must have had a genetic
predisposition to Liver Disease because her mother also passed away from End Stage
Liver Disease Idiopathic (Unknown Cause) Cirrhosis. My Grandmother bravely battled
End Stage Liver Disease from 2012-2014. I witnessed my Grandmother fearlessly fight
her disease until her last breath.

In many cases, chronic liver failure results from Cirrhosis. Cirrhosis is the scarring of
the liver from repeated or long-lasting injury, such as from drinking alcohol excessively
over a long period of time. Cirrhosis is typically stereotyped to be an alcoholics’
disease, but my Grandmother never drank a day in her life. Liver failure can take years
to develop. The symptoms of liver failure often look like symptoms of other medical
conditions, which make it hard to diagnose in its early stages. Symptoms get worse as
the failing liver continues to get weaker. Chronic liver failure occurs over many years
and may cause fatigue, nausea, loss of appetite, diarrhea, vomiting blood, and blood in
the stool. As liver failure advances, symptoms become more severe. In the later stages,
symptoms of liver failure may include jaundice, extreme tiredness, disorientation, and
ascites (fluid buildup in the abdomen and extremities). Known as the “Silent Killer”,
liver disease often shows no symptoms until your liver is severely damaged, leading to
chronic illness, organ failure, and ultimately death.

My Grandmother’s lifelong career was as a nurse. She worked both at the hospital, and
in long term care. Long before she was ever sick my Grandmother was always very
adamant that she never wanted to be placed in a nursing home due to working in long
term care for the majority of her nursing career. She worked as a nurse well into her
70's. At home my Grandmother was always tired, and sleeping. I overlooked the signs.
I naturally assumed she was exhausted due to her age, and because she worked over
40 plus hours a week. On her days off she would sleep the entire day. I finally realized
something was definitely not right, and I encouraged her to see her primary care
physician. After getting the runaround for quite some time, she was finally referred to
a specialist. She was referred to a Gastroenterologist in Salina, Kansas. Her
Gastroenterologist gave her no answers, and I rapidly grew impatient. I spoke to my
Grandfather, and I proposed a plan to try and get answers. We decided we wanted to
get a second opinion since we were receiving no immediate answers regarding her
health. I set up a second opinion with another Gastroenterologist in her home state of
Texas. My Grandfather took her to Texas for a second opinion. After reviewing her
records, she was diagnosed that very day with End Stage Liver Disease. The
Gastroenterologist in Texas gave her a life expectancy of 0-6 months to live.
My sister and I immediately started rearranging my Grandparents home in order to
ensure my Grandmother could safely and comfortably be kept in her home in
preparation for my Grandmother’s inevitable decline. When she returned to Kansas a
few days later she had an appointment with her Gastroenterologist. She was yet again
diagnosed with End Stage Liver Disease, and given a life expectancy of 0-6 months to
live.

I spoke to her Gastroenterologist and expressed my deep concern that this was
hereditary since my Maternal Great Grandmother also passed away from End Stage
Liver Disease. I wanted to know if there was genetic testing that I could have done to
see if I was also a carrier. She assured me that my Grandmother’s Liver Disease was
Idiopathic (Unknown Cause), and informed me that there was no genetic testing
available.

My Grandmother had always been very adamant that she wanted to be kept at home,
and not placed in a nursing home. My Grandfather assured her that her wishes would
be fulfilled. We immediately began Hospice services. My Grandfather, my little sister,
and I made a care plan. We decided that my sister would be her primary in-home
caregiver, and I would continue working on the road in order to help my Grandfather
pay for my sister’s services, and any other expenses my Grandparents had. I would
drive home on the weekends in order to relieve my sister. The three of us worked
together as a family to care for my Grandmother’s needs. My sister would go back to
her house at night since she had her own family, leaving my Grandfather to care for my
Grandmother. I placed a baby gate on my Grandmother’s bed so she would not fall in
the middle of the night while trying to get out of bed on her own. She did not want it
on her bed so my Grandfather removed it. She fell in the middle of the night, and
suffered a subarachnoid hemorrhage. It was very hard for my Grandfather to do what
was in her best interests instead of doing what she wanted him to do. My sister tried
juggling my Grandmother’s care along with raising her baby, and fulfilling her own
family's needs. As time passed, my sister became exhausted, and started suffering
from caregiver stress. While my sister was at her house trying to spend time with her
own family my Grandmother fell and suffered another subarachnoid hemorrhage. I
knew then it was time… I quit my job, and came home to care for my Grandmother. My
sister could no longer help me care for her due to caregiver burnout.

My Grandmother’s condition worsened. As time passed her mind began to get more
and more clouded. She was very confused. Reduced brain function is a complication of
End Stage Liver Disease. This is because toxins (such as Ammonia) build up in the
blood, causing confusion. She became more and more confused, and was unable to tell
day from night. My Grandmother was very restless, and she wanted to use the
restroom several times an hour. I quickly became exhausted providing her 24-hour
care on my own. In order to ensure she did not fall in the middle of the night I slept on
the floor beside her bed. Since I was so exhausted I wanted to make sure that if she did
try to get out of bed in the middle of the night that she would have to step on me first
consequently, waking me up. She would call out for her Daddy. It was very heart
wrenching. As her brain function continued to decline she became more sleepy and
increasingly more confused. She was very itchy. She had ascites, the accumulation of
fluid in the peritoneal cavity, causing abdominal swelling. My Grandmother
experienced liver pain in her upper right abdomen. She began having difficulty safely
ambulating with assistance. I took her to the restroom and turned around for a split
second, and she fell back and hit her head on the wall behind the toilet. She was as
stiff as a board, and just fell backwards. She also started choking on her food, and
could no longer swallow her medicine. I was greatly concerned that she would aspirate.
I then was forced to make one of the most difficult decisions of my life. Her disease
was progressing, and I had to put her safety first. I decided our safest option was to
keep her in bed, and no longer give her her medicines. Her health continued to decline.
She progressed to unresponsive, and then a coma.

We celebrated her 80th birthday, and a week later the Good Lord called her home. Liver
Disease has greatly affected my family, and continues to affect my family to this day.
My mother Wanda Jones was recently diagnosed with Liver Disease, making this the 3rd
generation that has been affected by Liver Disease.

My mother also suffers from Rheumatoid Arthritis, and Interstitial Lung Disease. In
2021 she was given Methotrexate for treatment of Rheumatoid Arthritis. She suffered
an allergic reaction, and went into respiratory distress. Due to the severity of her
condition she was placed on the ventilator, and put in a medically induced coma. She
was in the Intensive Care Unit on full life support for 22 days. My family started having
end of life discussions, and she was given her last rights. We were preparing for the
worst. By the Grace of God, one of her Pulmonologists attempted to wean her off the
ventilator. She struggled, but she was eventually able to come off the ventilator. She
only has 40% lung function. Typically, once you only have 60% lung function you begin
discussing a Lung Transplant with your Pulmonologist. Being on the ventilator for that
long of a time is very hard on your body. She was severely deconditioned, and her body
was atrophied. She could not move her limbs, could not open and close her hands,
could not move her feet, could not talk, and could not hold her head on her shoulders.
Once she was completely off the ventilator they sent her to a step down unit at another
hospital, and from there they wanted her to go to a skilled nursing facility. I disagreed,
and I advocated for her to go to the same extensive rehabilitation program that my
Grandfather had gone to when he required rehab. I was very adamant that she get
accepted into the In-Patient Rehabilitation Program at Salina Regional Health Center.
She did not qualify since she was so severely deconditioned. I appealed the rehab's
decision, and I requested that they rereview her case. Upon further review, she was
accepted to the In-Patient Rehabilitation Program, with the understanding that their
goal for her was for her to be able to go home in a wheelchair. She required an
extensive physical therapy program. She left the hospital walking with a walker.

I took over her medical care, and I got her the best care team of specialists at KU
Medical Center. She wanted to keep her local primary care physician, so we
compromised. I knew the majority of her care would be provided by her specialists at
KU Medical Center, and she would only see her primary care physician for minor health
concerns. Her primary care physician ordered lab work. When I called to get her results
the nurse said her labs were within normal limits. I was concerned that she had slightly
elevated liver numbers. The nurse minimized my concern. I demanded my mother be
referred to a Gastroenterologist since we have a family history of liver disease. I had
my mother referred to my Grandmother’s Gastroenterologist. I felt it was in her best
interest to have the same Gastroenterologist that her mother had. After an extensive
amount of testing she was also diagnosed with Liver Disease by her Gastroenterologist.
I got her the best Pulmonologist at KU Medical Center. At her first visit with her
Pulmonologist he asked her many odd questions “At what age did your hair turn
white?” “What age did your mother’s hair turn white?” “Did your Grandmother’s hair
turn white at a young age?” He then began to explain the research discovery linking
certain types of autoimmune liver diseases to short telomere syndromes.
Short Telomere Syndromes (STS) are accelerated aging syndromes often caused by
inheritable gene mutations resulting in decreased telomere lengths. As a consequence,
organs systems with increased cell turnover such as the skin, bone marrow, lungs, and
the gastrointestinal tract are commonly affected. Due to diverse clinical presentations,
STS pose a diagnostic challenge, with bone marrow failure and idiopathic pulmonary
fibrosis being frequent manifestations; occurring in association with gene mutations
involving DKC1 (dyskerin), TERT (telomerase reverse transcriptase) and TERC
(telomerase RNA component) amongst others. Inherited STS demonstrate genetic
anticipation, occurring at an earlier age with more severe manifestations in the affected
progeny. Telomere lengths can be assessed in peripheral blood granulocytes and
lymphocytes using a sensitive technique called flow-FISH (fluorescence in-situ
hybridization), while mutational analysis can be performed using next generation
sequencing assays.

I requested that my mother be genetically tested for Short Telomere Syndrome, and
she was positive. Therefore, confirming her Pulmonologist's prediction. Due to
advancements in medical research we now have answers to why three generations have
been gravely affected by Liver Disease.

The role of caregiving is the most challenging job I have ever had. The role of being a
caregiver is one you will not regret. It is a selfless act of love. I never regretted being
my Grandmother’s caregiver. The role of providing care to a loved one is one that
requires an immense amount of strength. The demands of caregiving can be
exhausting and overwhelming especially if you do not have a team. What I will say is
caregiver stress is very real. Caregiver stress is the emotional and physical stress of
caregiving. Common signs and symptoms of caregiver stress are anxiety, negative
emotions such as feeling overwhelmed, or constantly worried, feelings of
hopelessness, feelings of alienation, depression, irritability, exhaustion, overreacting
to minor nuisances, trouble concentrating, feeling increasingly resentful, loss of
control, problems sleeping, use of alcohol, changes in appetite, and neglecting one's
own health and responsibilities. Over time, this can cause caregiver burnout. People
who experience caregiver stress can be especially vulnerable to changes in their own
physical and mental health.

I can personally attest to this. I experienced all of these things except the use of
alcohol. I am a very clean person. Often taking more than one shower a day. I knew
when I started experiencing caregiver burnout because I was exhausted, and I could
not even muster up the energy to even shower. I would go a few days at a time without
a shower. Anyone who knows me would never even believe that, but it is true. I was
providing 24-hour care 7 days a week alone. I did not ask my Grandfather for a lot of
help because I wanted him to remain active, and continue to work in order to keep his
mind busy. My sister could no longer help. My Grandparent’s children offered no help
or no support which increasingly made me very bitter and resentful. I wasted a large
portion of my energy feeling resentful towards my Grandparent’s children. I even wrote
a poem about my feelings of resentment.

Grandma I wrote this poem when you were still here with me…

“Grandma, as I lay here next to you, I cherish every day I have left with you.
Grandma, as I walk this long path alongside you, I marvel in the beauty of your soul.
Grandma, as your mind slowly becomes more clouded, I will be here to guide you.
Grandma, as your body grows weary from fighting your disease, I will fight for you.
Grandma, as you grow weaker with every passing day, I will become your strength.
Grandma, as the pain becomes unbearable and yet you still do not complain, I am truly
humbled.
Grandma, as you still offer your unconditional love to those who turned their backs on
you at your greatest time of need, I am in utter disbelief.
Grandma, even after all you were forced to endure in your life you still remain a
devoted faithful servant of the Lord, I am astonished.
Grandma, as your time grows near, I will be at your side holding your hand.
Grandma, as you take the hand of Jesus I will let you go.”
Grandma, You Will Remain In My Heart and Soul Forever!
Eternal Love,
Melissa

My only regret is allowing myself to waste a considerable amount of energy on feelings
of bitterness and resentment. I wish I would have invested the little energy I had into
enjoying the remainder of time I had left with my Grandmother. Instead, I squandered
my time, and I allowed my negative feelings to rob me of the little time we had left
together.

As a caregiver, you must take care of your own physical and mental health first. I know
that is a lot easier said than done, but it is necessary. I did not do this, and I mentally
and physically suffered due to it. It is also extremely important to ask and accept help,
enlist others, break away occasionally, create a support system for yourself, remain
socially connected, join a local caregiver support group, and utilize respite care.
As a caregiver, you must advocate for your loved one. I would advise educating
yourself and your family member about their disease, and their diagnosis and
prognosis. Educate your family member regarding what stage of cirrhosis they are in,
what signs and symptoms to be aware of, and what treatment options are available. I
would highly recommend getting second and third opinions regarding diagnosis and
treatment options.

You need to discuss your loved one’s wishes. Discuss how they want to proceed. If they
choose to get a second opinion, help facilitate that. Have your questions written down
for the provider in advance. Be prepared! You only get about 20 minutes with the
provider, so make great use of your time. Help keep your loved one on task when
talking to the provider. Take notes. Obtain the physician's permission, and record the
conversations to relisten to later. I bought a voice recorder, so we could relisten to the
conversations we had with the physicians at a later time. The voice recorder was very
fundamental for my Grandmother because many times at her office visits with her
Gastroenterologist she was in shock. The voice recorder allowed her to relisten to our
conversation at a later time and really hear it. Ask questions…ask questions… ask
questions!!! Go with your gut. If you are referred to a provider that does not want to
listen to you, and truly does not take the time to hear your questions and concerns, get
referred to another provider. You have to really look at your patient provider
relationship as just that: a relationship. A positive patient/provider relationship should
foster security for the patient. Learning that you have Liver Disease can be catastrophic
mentally. If you do not feel comfortable with your provider, you will never be able to
have assurance in your care.

If your loved one chooses to proceed with treatment, provide them with their treatment
options. As in my Grandmother's case she got the run around for far too long by her
primary care physician and Gastroenterologist. Do your research. Research medical
research studies. If you have the means, go to a bigger town, or even a different state
to obtain the most cutting edge treatment options available.
Medication to treat liver disease is very expensive. Some liver disease medications such
as Xifaxan can be tremendously expensive. My grandmother had Medicare and Blue
Cross Blue Shield as her supplemental insurance. After her insurance her Xifaxan out of
pocket cost was almost $600.00 a month. I spoke to her Gastroenterologist, and
inquired about receiving medication samples. Financially, that was a blessing. I would
also suggest contacting the manufacturer directly to see what discounts they may have
available. Research…Research… Research…

If they decide not to pursue treatment, respect their wishes. Finding out you have liver
disease is shocking, so it is natural for them not to know what to do. That’s why I
would advise offering your loved one all of their options, and let them come to their
decision on their own. Try to refrain from pressuring them. As a caregiver this can be a
tremendously hard task to do. My best advice would be in the words of my
Grandmother “learn to shut your mouth.” Truly listen to what your family member
wants. Your role as a caregiver and advocate is to help facilitate your family member’s
wishes. Tensions and emotions are high, you have to learn to place your own feelings
aside and help fulfill your family member’s wishes.

When my Grandmother was diagnosed with End Stage Liver Disease I called a family
meeting. My Grandmother did not want to participate since she already fully
understood her diagnosis, but she did want me to have a family meeting and discuss
how we would come together as a family during this difficult time. I discussed her
diagnosis and prognosis with her children. Emotions ran high. My mother was in shock
and refused to participate in the conversation. My Grandmother had to ask her to
please return to our conversation. She eventually did. My uncle immediately stated that
he had two children he had to provide for, and he had no money to help. I was
instantly angered by their reactions. They were both selfish and made it about them.
My husband provided for his 3 children from a previous marriage, and we both worked
on the road. Yet we were willing to do whatever we needed to do in order to provide
for my Grandmother’s needs. I immediately stated I did not ask for money. I said I
wanted to come up with a plan as a family to help provide a healthy, supportive, calm
environment for my Grandmother. Then they asked what kind of plan I had in mind. I
asked them what they were willing and able to offer of themselves. I said, “if you do
not have money to provide, can you provide your time? Could you give my sister and I
a break by providing intermittent relief?” I wanted us to join together as a family to
support my Grandmother through the most difficult time of her life.

If you chose to take on the role as a primary caregiver, know that there is a great
possibility that you will be on your own. Actions speak louder than words. Ultimately
my uncle never offered a single day of relief, and my mother was too emotional to
provide any assistance. My Grandfather, my sister, and I were on our own.
REMEMBER NEVER GIVE UP!!!

My Grandmother Aira Sanchez is my sole source of motivation. She was a very inspiring
woman. She was the most selfless, kind hearted, loving woman I have ever known. She
raised me and I feel blessed to call her my mother. Even though she is now in Heaven
she is my source of inspiration to advocate for all people who have been affected by
Liver Disease. Due to advancements in medical research we now have answers to why
three generations have been gravely affected by Liver Disease. I am sharing my family's
Liver Disease stories to help educate and advocate for all liver patients and their
families.

I advocate In Memory Of Our Angel Aira. My Grandmother was an outstanding example
of resilience and perseverance. I carry her strength within me. My Caregiving Journey
has made me the person that I am today. It has been influential in my legislative
initiatives. It has been monumental in helping raise Liver Awareness. It is my
motivation to advocate for all patients suffering from Liver Disease. Due to my
caregiving experience with both of my grandparents my passion has only grown for
advocacy, and due to the experience I acquired through years of caregiving I now have
a career as a patient advocate at a health system. I pray others are inspired to join our
fight against Liver Disease.