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
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
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!
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.