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PRE-TRANSPLANT

There are two stages to pre-transplant once it's been concluded that your liver disease is at an End Stage- unlisted and listed. Once you are evaluated and accepted for the UNOS national transplant waiting list, you are eligible to receive a liver transplant.

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Before we discuss criteria, time and other practicalities, I want to say this to you- regardless of listing status or cause for your disease- it is essential:

HOLD FAST.

I came face-to-face with my mortality as will you. It will be the greatest challenge you will ever face- in every sense of the word.

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To the patient who is deemed innocent under such affliction there may be confusion, frustration- Why me? To the alcoholic and addict, there may be shame and guilt. But to all of us there will be fear and many forms of suffering. Fear of future outcomes must wait. Grasp the Victories and cherish them. The setbacks are mere road bumps on the way to the destination. Hold Fast. Hold fast to this moment. We have only Now.

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In this time, we can crumple and be broken, the unfairness of our situation engulfing us. Or, we can rise up. The human's ability to endure can be infinite. Our capacity to love can grow, not diminish. Our spirit transcends. Accept this challenge as freely as you may- this is It.

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We must see ourselves making it, always. This passage strips us of many freedoms, but it also frees us from all that is unnecessary. All that remains is love, beyond even hope. The Love we Give, the Love we Receive. We may hold this now at our deepest and most tenuous time, and let it guide us when we rise to enjoy our new life once again. Hence our Phoenix. We become married to our donors and together we must venture forth in this spirit of love. 

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Our mortality, our fragility makes life fleeting so scintillating and lovely. Here at RELIVE, in our support groups, in this life, you are Family and you are Loved. Always.

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With My Love to You,

Trent Ford

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COURSE OF ACTION ONE MAY ANTICIPATE

Disclaimer: Please always seek the advice of your primary care physician or qualified health care provider.

OVERVIEW: 

​DR. CONSULTATION & TESTING:

If you, or your loved one, have been experiencing symptoms of liver disease (please refer to our Causes & Symptoms section), consult with your doctor. Treatment will depend on the type of liver disease and how far it has progressed. Some types of liver disease rarely cause symptoms until the advanced stages. 

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To accurately diagnose the cause of liver disease, your doctor will recommend tests that may include: 

Blood tests

Liver function tests & other blood tests

Imaging tests

Ultrasound, MRI & CT scan

Liver biopsy

Small piece of liver tissue is removed & examined

REFERRAL & CRITERIA TO QUALIFY FOR A LIVER TRANSPLANT:

Doctors can refer patients to their local transplant center for a formal evaluation. 

A life-saving liver transplant is usually a last-resort treatment. Before a patient can be added to the transplant waiting list, they will need to undergo a comprehensive evaluation to determine whether or not they are a candidate for a transplant. A team of healthcare professionals will fully evaluate your physical and mental health and any history of chemical dependencies. Your primary caregiver should also be present. Any compromising conditions will need to be addressed and treated first.

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THE EVALUATION PROCESS INCLUDES:

  • ​Calculating your MELD (model for end-stage liver disease) score, which determines your placement on the transplant waiting list. Also indicates how sick the patient is- designed to give the highest priority to people at the highest risk of dying without a transplant. (Please see Glossary of Terms)

  • Blood and diagnostic tests (heart, lungs, etc.), as well as imaging and x-rays to assess overall health, see if the patient is strong enough to endure the procedure and improve the chances of a good match.

  • Assessing social and psychological issues involved in organ transplantation, such as financial issues, stress, family or other support. A frank and deep delve into any underlying issues of alcoholism and or addiction.

  • Consideration of medical history and other information that could help determine your eligibility for a liver transplant.

  • Immunizations and other preparations to reduce the chance of infection.

In our experience (being transplanted at UCLA in Southern California), a MELD score in the mid to high 30s is typical for transplant. This may vary according to blood type, transplant center median MELD score and region of the U.S.  

EVALUATION OUTCOME & TRANSPLANT TEAM:

Once your transplant evaluation is completed, the transplant team will discuss your case at their transplant selection committee meeting. Based on your overall health and risks versus benefits of transplant, you will either be accepted, denied, or put on hold. Your transplant coordinator or doctor will contact you after the meeting to discuss their decision and recommendations.

 

There are many reasons to be placed on hold, including the need for additional testing, financial clearance, treatments, or substance abuse program participation, in order to re-present your case to committee to make a final decision. Always provide any documentation showing progress or completion of these additional steps to your transplant coordinator. Compliance is crucial. 

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It's important to know your liver transplant team. They are there for you throughout this entire process- you are not in it alone. Many wonderful medical care team members will monitor your health and care, from evaluation, to transplant, to recovery and post-transplant life. You may have some or all of the following health professionals on your transplant care team. Some will be there from the onset, some will join as your case progresses. It's quite remarkable and humbling really- from chief surgeon to catering and cleaning staff- they are all pulling for You.​

LIVER TRANSPLANT TEAM MAY CONSIST OF:

  • Transplant Coordinator

  • Social Worker

  • Financial Coordinator

  • Transplant Surgeon

  • Hepatologist

  • Registered Dietitian Nutritionist

  • Consulting Physicians (Nephrologists, Cardiologists, Hematologists, Endocrinologists, Oncologists, Infectious disease specialists, Psychiatrists, Addiction specialists, Anesthesiologists)

  • Case Manager

  • Medical Residents

  • Fellows

  • Nurse Practitioner (NP)

  • Registered Nurse (RN)

  • Physician Assistant

  • Operating Room Nurses

  • Intensive Care Nurses

  • Transplant Assistant

  • Procurement Coordinator

  • Dialysis Technician

  • Imaging & Radiology

  • Physical Therapist

  • Occupational Therapist

  • Pharmacist

If the transplant team decides a liver transplant is not the best treatment option for you, do not be discouraged! This may well be good news. Regardless of outcome, at this point, ALL patients should continue care with their liver doctor and obey the edicts of living advised by them. You may also seek a second opinion at another transplant center. You always have the option to continue your current medical management and to not pursue an organ transplant. Most patients with an irreversibly injured or damaged liver have a very limited life expectancy without liver transplantation. There is no other long-term treatment alternative for a failing liver.

 

It must be understood, that although institutions may vary with required criteria, none will respond to will and coercion alone. We ALWAYS get the best results working alongside these incredible institutions as a unified team- they want the best outcome for the patient and their loved ones.

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WAITING FOR YOUR LIVER TRANSPLANT:

Once you meet the criteria, if the transplant team decides you are a candidate for a liver transplant, you will be accepted and placed on the United Network for Organ Sharing (UNOS) national waiting list. During this waiting period, your transplant team will advise you on how to prepare for the transplant and guide you in maximizing your health, so that you are in the best condition possible for surgery. It's extremely important to remain available 24/7 at the contact information you provide to the transplant team, so they can reach you immediately when a liver becomes available. For some patients, living donor liver transplants may be an option- discuss this with your hepatologist and transplant coordinator. It's not uncommon to be called as a back-up when a donor liver becomes available, in case the primary recipient isn't able to undergo surgery.  There is also a chance the donor liver will not be suitable for transplant and the surgery will be canceled. This does not affect your place on the list. Take heart- when it's meant to be, your time will come. 

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MELD: Model for End-Stage Liver Disease

  • A numerical scale used for liver transplant candidates age 12 and older, calculated by a formula using routine lab test results to determine how urgently a patient needs a liver transplant within the next three months.  

  • If your MELD score is very high, you will have high priority for a transplant.

  • MELD scores range from 6 (least sick) to 40 (gravely sick).

  • Your score may go up or down as your liver disease either worsens or improves.

  • Your MELD score may be recalculated a number of times while you are on the waiting list- this helps ensure that the matching system accurately compares your need to that of others on the waiting list.

  • If your medical urgency is not reflected by the calculated MELD score and your transplant team believes you qualify for an exception, they may submit information to the UNOS National Liver Review Board and request a higher score (a MELD exception).

Sometimes, people fall ill suddenly and end up in the hospital in critical condition with acute liver failure- if they land in a transplant hospital, or are emergency transferred to a transplant center, they will be evaluated in hospital. When time is of the essence, these patients may be listed and transplanted in a matter of days. Therefore, length of time for evaluation and time spent on the waiting list is often directly influenced by how critical a patient's condition is. 

 

Remember- Each case is unique and wait time is a reflection of that; it may be days, weeks, months or years. Be careful of a common stressor to patient and caregiver associated with this question of "When?" and comparisons. The number of patients with end-stage liver disease on the transplant waiting list greatly outnumber the number of livers available. All donor livers are matched to recipients according to blood type and size, as well as medical urgency, genetic makeup, time on the waiting list and proximity between the donor and recipient. Always bear in mind a liver transplant is a major procedure- and a lifelong commitment- and is medically viewed as a last resort.

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TRAVEL TIPS:

  • Always talk to your transplant team before making travel plans.

  • If you are traveling to a different time zone, ask your transplant coordinator how to safely manage your medication schedule.  

  • Keep an updated medication list with you at all times.

  • Always bring more medication than you think you will need.

  • Always keep your medications with you/in your carry-on when traveling, never pack medications in your luggage or check-in bag. 

  • Keep your transplant coordinator's contact information with you at all times.

  • Keep your pharmacy's phone number with you/in your phone contacts.

  • A medical alert ID bracelet or necklace is recommended, especially post-transplant; the vital engraved medical/contact information can be helpful in emergencies when a person may be unconscious or unable to speak.

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LIVER TRANSPLANT SURGERY:

  • When a donor liver becomes available, the transplant coordinator has ONE HOUR to reach you before the offer must move on to the next patient on the list- they must be able to reach you 24/7. You will be asked to go to the hospital within a certain window of time. Plan ahead for receiving "the call".

  • The surgical procedure is a complex operation performed under general anesthesia and requires blood transfusions.

  • You will be in the operating room anywhere from 6-12 hours.

  • Sometimes the surgical procedure is done in two parts (days apart), dependent upon the complexity and delicacy of the procedure- less common, but this is not irregular.

  • The transplant surgeon will make an incision across your abdomen (chevron incision) that looks like a Mercedes Benz symbol.

  • During the operation, your diseased liver is removed and replaced by a new donor liver.

  •  The transplant surgeon will close the incision using surgical staples.

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POST-TRANSPLANT

What matters most is how well you walk through the fire.

Charles Bukowski, How Is Your Heart?

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You will burn, and you will burn out; you will be healed and come back again.

Fyodor Dostoevsky, Brothers Karamazov

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Only the Phoenix rises and does not descend. And everything changes. And nothing is truly lost.

Neil Gaiman, The Sandman, Vol 10 

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Here we are. You have endured and now, This Is It. There is a rebirth and in this is a sacred marriage- to your beautiful donor. 

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We have a choice with only one true answer: Do I languish and ask, 'Why me?' 'Why did this happen to me?' Mourning for our old life. Or, do we seek not to let questions of the past consume us and choose, instead, to embrace with open arms, this true newness of life? 

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My promise, my answer, to myself, is not to strive for the success of a trivial life in money, career, and applause. They will come if they may, though equally, they may not. (That is not for me to know or control, as is so much of my life.) My promise is to live: To Love and express it. To be Truthful and to Trust- that the world is Good and better for me in it as I am now.

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Every road, mine and yours, must and will meander with bumps and adversity as necessity- how dull a straight line road is! But I have this moment to savor and if I might do that, it is a life well lived day by day. 

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Be kind to yourself. Protect and nurture yourself. Seek help freely when needed- as freely as you would help another now. You and your marriage deserves no less; our best is Now: In each breath, each heart beat, our new organ rests, thrives and grows hand-in-hand with us, content to dwell in such a lovely home. 

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We may now Relive with all the loveliness of what we were in union with what we know we wish to be.

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My Love to You,

Trent Ford 

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OVERVIEW:

Disclaimer: Please always follow and seek the advice of your transplant team, primary care physician or qualified health care provider.

LIVER TRANSPLANT SURGERY RECOVERY:

Once your operation is complete, you will be brought back to the surgical intensive care unit (ICU). The nurses and doctors will closely monitor your liver function, vitals and medication levels, and watch for signs and symptoms of infection, rejection, or other issues. Patients are kept on a ventilator until fully conscious and able to breathe on their own. Immunosuppressive medications are started early after transplantation (such as Mycophenolate mofetil, Tacrolimus and Prednisone- please see Glossary of Terms). If there are no complications and liver function is stable, most patients remain in the ICU for 2 to 5 days before being transferred to a step down unit.

A patient's condition and overall health pre-transplant often determines the length of time spent in the hospital post-transplant. Patients usually stay in the hospital for a couple weeks after the procedure. Some patients require more time to recover and may need to be transferred to a rehabilitation facility, to regain physical strength before returning home. After surgery, your bowels will take a few days to wake up and begin working again. You will begin drinking liquids once you pass the swallow test and slowly reintroduce solid foods. Dialysis may be required for a period of time after the procedure. In the first week or so post-transplant, the steroids administered can cause confusion, mood disturbances and manic states, which improves over time as the dosage is reduced. Taste buds might be affected too, but this is temporary.

This time spent in the hospital may be trying and seem a bit excessive, but again, it is imperative to understand that the transplant team wants to achieve the best long-term outcome for you possible. These precious early days are crucial to a successful recovery.

(An important note for Caregivers: Don't take it personally if your loved one behaves differently towards you, or if it's hard to communicate during this time- their body endured a major operation, received a beautiful new liver and is adjusting to all of the new medications in their system. It's a very emotional, overwhelming and joyous time for all. Encouragement, love and positivity helps patients immensely at this stage. Be kind to one another. Remember to hydrate, eat healthy and get rest when you can. You will need your energy when they come home! Also, it's a good idea to hold onto your loved one's wallet- it's not uncommon for patients to make interesting online purchases at this stage..!)

THE RUN UP TO DISCHARGE:

Your transplant team will support you- they will teach you and your caregivers how to take care of your new liver. They will help coordinate your discharge and home care needs. Before being discharged from the hospital, you will go through extensive teaching regarding medications, diet and physical activities.​ Local housing will be required for up to 3 months for those living a far distance from their transplant center, to stay close following transplant.  

THE TRANSITION FROM INPATIENT TO OUTPATIENT:

  • Physical therapy (PT) to assess and develop/regain strength.

  • Occupational therapy (OT) to address how you will get dressed, bathe, get around your home- will you need a walker? A shower stool? Are there stairs?

  •  Dietitian will outline (in great detail) an ideal post-transplant diet and foods you must limit and/or absolutely avoid.

  • Pharmacist will walk you through all of your new medications, as well as how often and when to take them.

  • You will be given specific instructions about the schedule for blood work and follow-up clinic visits.

  • You will receive important information regarding when and how to notify your transplant team if any emergencies or signs of infection or rejection occur.

 (An important note for Patients: You are called a patient for a reason- be patient with yourself and others. Learn hospital staff names and be polite to them. Don't be embarrassed, because these wonderful people have seen it all before and they are there to help you and take care of you. Be brave, be compliant. Try your best- embrace the challenges and celebrate the progress you make each day. At this stage, it's so important to do the work that is required of you. Row in the same direction as your transplant team! The next phase of recovery will seem daunting, as they prepare to send you home, but you've got an incredible team of experts guiding you every step of the way.)

LIFE AFTER TRANSPLANT:

After your liver transplant, you will be followed closely in post-transplant clinic. Your team will monitor liver function, blood pressure, medication levels, infection, rejection or other issues. At first, patients need to be seen as frequently as 2 times a week. Blood work is done often and your team will make adjustments to medications as needed. You will check your temperature, heart rate and blood pressure twice a day for the first month after you go home, and whenever you do not feel well. If advised, you will check your blood sugar. Avoid exercises and activities that may strain your abdomen. Staples will be removed in clinic several weeks after surgery. According to guidelines from the American Heart Association and the American Medical Association, it is recommended that no elective dental work, including cleanings, be done during the first 6 months following a transplant. Your transplant team will advise you as to when it is safe to drive, swim, travel, or lift anything heavier than 10-15 pounds following surgery. Follow their advice. As you heal from surgery and become healthier and stronger, you will not need to be seen as often.

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It is vital for all liver transplant patients to maintain a Primary Care Physician/Provider (PCP) and follow up with them on a regular basis.

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Life-long follow up from your medical care providers is required to ensure that your transplanted liver will function normally. It is your responsibility to keep your new liver healthy by taking all medications as prescribed and by notifying your transplant team of any changes in your condition. Notify your transplant coordinator right away if there are any changes in your contact information- address, phone numbers, and/or your caregivers. Do not make changes to your insurance without discussing the options with your transplant finance team, first. Compliance is essential.

 Should you suspect signs of rejection or infection, you must notify your transplant coordinator immediately. If after hours, or on weekends and holidays, call the Page Operator to reach the liver transplant coordinator on call. If they do not get back to you soon, FOLLOW UP CALL! Never delay in instances such as this.

SIGNS OF REJECTION INCLUDE:

  • Fever of 100.5 degrees F or higher

  • Jaundice (yellow skin or eyes)

  • Dark urine

  • Pale stools

  • Flu-like symptoms and/or tenderness over the liver

SIGNS OF INFECTION INCLUDE:

  • Fever of 100.5 degrees F or greater

  • Sore throat

  • Cold or flu-like symptoms

  • Rashes or lesions on your skin

  • Pain or burning when you urinate

  • Watery stools lasting more than 24 hours

  • Redness, swelling or milky fluid coming from your incisions, IV or drain sites

LIFELONG REQUIREMENTS:

Immunosuppressant medications are taken for life, to prevent your body from rejecting your new liver. You will be instructed on your immunosuppressant dosing. If you miss a dose, notify your transplant team. You should never double up on immunosuppressant medication if you miss a dose. Always check with your transplant team or physician before you start or stop any medications, due to possible drug interactions. This includes over-the-counter medications and herbal remedies. You are responsible for making sure that you do not run out of medications! Notify your team right away if you are unable to take medications due to vomiting. Also, notify your team if you have watery stools 2-3 times or more in a 24-hour period and there is no improvement (this can affect the levels of your medications).

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Carry your medication list with you at all times and update it as changes are made by your transplant team. It's important for your caregivers to keep updated copies too.

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Your transplant team will inform you of potential side effects caused by medications, as well as complications and medical risks that may occur after the surgery- no procedure is completely risk-free. You are an important part of the team, because you know your body best. Communication is key. 

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After transplant, feelings of anxiety, guilt and depression can be common. It is essential to take care of yourself- maintain a healthy diet, hydrate well, get plenty of sleep and regular exercise. Find time to meditate and pursue gentle, enjoyable hobbies and interests that divert the mind. Creative outlets play an important part in healing, too- art, music, journaling and so on. Avoid excessive social media and news cycles. Joining support groups and seeking therapy are vital tools for improving your mental health. Connecting with others in the transplant community can form deep, lasting friendships with those who really know what it's like. Our members would especially attest to this. The first year after transplant is very much like being a (full-grown) newborn! This is an important time for you to heal, not just physically, but mentally, emotionally and spiritually too.

   

RULES TO LIVE BY POST-TRANSPLANT: 

  • ​For the rest of your life, you will abstain from alcohol. This includes food cooked with alcohol, non-alcoholic beer, mouth wash with alcohol and medications with alcohol, such as NyQuil.

  • You will not smoke cigarettes, marijuana, or use any illegal substances for the rest of your life.

  • Avoid grapefruit, pomegranate, starfruit, pomelo, Seville or bitter orange, orange marmalade and beverages containing these fruits (may interact with anti-rejection medications).

  • Do not take Advil, Aspirin, (or other NSAIDS) or any other over-the-counter medications unless instructed by your transplant team that it is safe to do so.

  • Avoid raw, undercooked meat, fish, and shellfish- bacteria or viruses from these foods may cause severe food poisoning/higher risk of death.

  • Contact your transplant team immediately if you have gone to an emergency room or have been admitted to a hospital other than your transplant center.

  • You are responsible for making all clinic appointments after you are discharged from the hospital.

  • If you are having labs drawn at a facility other than your transplant center, make sure your transplant team has the contact information for the outside lab.

  • Do not go swimming, use a jacuzzi, or a hot tub while you have a central line, drain or open wound. You may take a shower.

  • It's important to wear a mask everywhere outside of your home for the first 3 months after transplant, and whenever traveling or in crowds. Avoid sick people.

  • If you wish to travel during the first year after your transplant, you must have the trip approved by your doctor.

  • Be extra cautious about food preparation and storage to reduce the risk of infection. Wash hands well with soap and water before preparing food, and sanitize all work surfaces. 

  • Frequent hand washing and use of hand sanitizer is an effective way to prevent spread of germs and infection.  

  • You must wear sunscreen when you are outdoors, even on cloudy days- there's an increased risk of skin cancer, due to immunosuppressant medications. Regular skin checks with your dermatologist will be required.

  • Always check with your transplant team before taking any antibiotics or medications prescribed by physicians outside of your transplant team- some antibiotics interfere with your immunosuppressant medications.

  • If you have a cat, someone else must clean the litter box daily. Avoid direct contact with animal feces.

  • Avoid pet birds, fish, reptiles, or rodents of any kind. 

  • It is prudent to avoid areas contaminated with bird droppings.

  • Avoid live plants and yard work/do not touch soil for the first 3 months following transplant. After 3 months, you must wear gloves and a mask when distributing soil. House plants should not be in your immediate living or sleeping areas. Someone else should change the water in flower vases.

  • You cannot receive any live-virus vaccinations, such as MMR, oral polio, some flu vaccines and the Shingles vaccine. Avoid contact with the body fluids of anyone who has had a live-virus vaccine for 4 weeks after the vaccination- the virus can be shed in body fluids and make you sick. If you have not had Chickenpox and are exposed to it, notify your transplant team immediately.

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