When my dad was 20-years-old and serving as a missionary in southern Brazil, he started to experience symptoms of ulcerative colitis, an incurable inflammatory bowel disease. The symptoms of UC would be worse at times and not so bad at other times. The symptoms can be very uncomfortable and embarrassing. UC is a disease of the inside lining of the large intestine as opposed to Chron’s disease which is a disease of the entire digestive tract. The longer you have UC the higher the risk of developing colon cancer. In 1993, at age 34, the doctors discovered that my dad had pre-cancerous cells in his large intestine. The best and only option was to have his entire large intestine removed. In March of 1994, he underwent surgery and had a colectomy and an ileoanal pull through where the doctors make a “j” pouch out of the end of the ileum to serve as a quasi colon. I was nine-years-old at the time but remember going to the hospital and seeing my dad with tubes and machines all around him. As a child, I was kind of scared to see my dad like that.
At that time (1994), his liver enzymes were elevated and doctors diagnosed him with a liver disease called Primary Sclerosing Cholangitis (PSC). About 10% of the people with UC also develop PSC. PSC is the same process that occurs in the colon only it occurs in the liver. PSC attacks the bile ducts of the liver and over time they become scarred and hardened and don’t drain properly. The bile can back up in the liver causing low-grade fevers, night sweats, and infection. The doctors told my parents that PSC sometimes progresses rapidly and sometimes it progress slowly. They said our family should be prepared for a liver transplant in a year. At the time, my dad had been working for a corporation that went through a merger and had just “invited” the management team to leave (including my dad). He started his own business. But, that meant no insurance for people with a pre-existing condition. My dad could not be put on the transplant list unless he had insurance or money in the bank to cover the cost of the transplant (several hundred thousand dollars). Because of all the medical bills, not only was there no money in the bank but there were still medical bills that had to be paid. We held a family council and discussed the situation. There were six children in our family at the time and the oldest, my sister, was twelve. We decided we could all help around the house and that one way to solve our problem was to have our mom go to work. She had a degree in education. Schools offered good insurance and so my mom went to work as a part-time teacher. She began working for a half a day during the school year, not for the money, but for the insurance.
One year passed and then fourteen more. My dad continued to have routine checks with no significant changes. Apparently, his disease was progressing slowly. That was good for his overall health but the longer he had the disease the more there was a chance of developing cholangiocarcinoma (liver cancer). In early 2007, my dad began to have more symptoms of end-stage liver disease – itching, low grade fevers, night sweats, fatigue, and significant weight loss (over 40 pounds in a couple of months). The doctors became worried because weight loss might mean cholangiocarcinoma (liver cancer). The doctors tried four or five times to run tubes through my dad’s main biliary ducts to check for tumors. They left side of his liver was completely blocked off. They feared that tumors were blocking the left, main bile duct. They did manage to put a biliary drain in the right side of the liver in November 2007. After a few complications from the surgery, he began to feel better.
One of his doctors told us that, with PSC, we should consider a live-donor transplant. That is where someone, usually a family member or friend, donates half of their liver to another person. The surgery is very complicated. In a live-donor transplant they remove the right lobe of the liver from the donor and place it in the recipient. It is a more complicated surgery than a deceased-donor transplant because the common bile duct, the portal vein, the hepatic artery and the hepatic vein are left in the donor. Of course, my dad had always been against using a live donor. He said he would rather die than ask someone, especially someone he loved, to go through such a surgery. Death became something that he faced. Because the shortage of organs has increased over the years, you now have to be close to death before you receive a deceased-donor’s liver. He studied the symptoms of end-stage liver disease. He also studied the percentage of people with PSC that developed cholangiocarcinoma. He knew what he was up against and emotionally and mentally began to prepare for the battle.
After a lot of serious discussions, my mom decided to be the live donor for my dad. As a family we were concerned to have both parents go through such a complicated surgery. I still have two brothers at home, one is twelve and the other is fifteen. We had looked into every possibility for my dad and again we held a family council. It was decided that mom would be tested to be the donor for my dad because she wanted to save my dad’s life, but she also said it would make a liver available for someone else because then my dad wouldn’t need one from the pool of deceased donors.
My mom was tested to see if she could be a live donor candidate. Unfortunately, she was turned down as her liver had unusual ducts that could not be severed in allowing her to share her liver with him. It was a sad day when we received the phone call that she could not be a candidate for live donor. Mom thought it would be such a perfect option, as then we could solve our problems without having to turn to others who would suffer their own loss. But, for some reason, her will was not granted as far as that option was concerned. Now we are trying to decide what else to do.
We have spent a lot of time in the transplant clinics waiting to see doctors and during those visits have met and heard about many wonderful people while sitting in the waiting rooms. Because there are not enough organ donations for the amount of people waiting, many people die while on the waiting list. Many suffer for a long time waiting for the hope of a transplant. The list is so long that recipients must wait until they are three to seven days from death before they receive a transplant. That means several months to years of serious suffering.
We have also met several people who have received transplants. The gratitude is incredible. We met a wonderful black man in Denver Colorado who told us about coming to know God through his suffering. “I have received a gift. I will be forever paying it forward.”
Sadly, because of our situation, we learn of the other side of the deceased donor process. We or someone we know that is close to the family hears of their loss. Over the past few years my family’s hearts has broken with theirs, several times. We are coming to understand what it means to “mourn with those who mourn”. One day, a healthy, vibrant, loved young man or woman, mother or father is living a wonderful healthy, happy, life and the next a family is hurt – hearts are broken. I imagine each mother, father, sister, brother, or friend suffering with the literal heart breaking of the loss of one who lived healthy, happy and loved. Again and again, our hearts tear with their pain, as we hear of the sadness their families are facing. There is no way to express the deep sorrow felt for each family, truly we mourn with them.
We hear of their sadness, because it is at this time of great grief that families face the very difficult decision that only they can or should make. If their loved one has had a traumatic head injury and is on life support, they will be ask if they are interested in saving or improving the quality of someone else’s life through the gift of liver donation. Anyone reading this can understand the difficulty of asking someone in the midst of such intense grieving to consider this choice. No one should have to face this decision then, or ask it of another person at such a time.
I share our personal situation imagining what it would be like to be in another family’s place of pain. As a family we have questioned in our own minds if the asking for these gifts of others would only bring them more pain. Our thoughts are, that if others become aware of their choices now, and make their decisions known to their families now, when everyone in the family is well, then should the choice of donation come at the time of death, these requests could bring a sense of peace and comfort in fulfilling their loved ones desires.
As a family, we have come to accept the Lord’s will concerning my dad’s health and the prospects of a transplant. We don’t know if that option will become available to us. PSC patients suffer a very long time and many do not make it through the process of waiting for a donor. But we, like many others we have met over the years at the hospitals, hope one day the life saving, and life improving gift will come. Over the years, we have come to know personally many people who suffer, and are in need of help. Each face reflects the same hope we feel, that someone close to them (possibly even a family member or someone from their community), possibly someone who doesn’t even know them, will consider sharing gifts of life to ones who have struggled for years waiting for that hope. Many have died waiting, but many others have received the gift of donation – life changing, life improving, life saving.
In our searching for understanding, our family consulted The Church Handbook of Instructions for Stake Presidents and Bishops for direction under the heading Organ and Tissue Donations and Transplants, it states: “The donation of organs and tissues is a selfless act that often results in great benefit to individuals with medical conditions. The decision to will or donate one’s own body organs or tissue for medical purposes, or the decision to authorize the transplant of organs or tissue from a deceased family member, is made by the individual or the deceased member’s family. The decision to receive a donated organ should be made after receiving competent medical counsel and confirmation through prayer. “
My dad has had to come to terms with accepting help by way of a donation should that option become available. The following quote from the General Handbook of Instruction Book 2, pg 256 served to confirm the decision: “When people receive help, they should accept it with gratitude and humility thanking the Lord for His goodness and the goodness of others (D&C 56:18, 78:19). People who receive assistance should use it to release themselves from the bondage and limitations of their need, becoming more self-reliant and more able to give to others. Providing in the Lord’s way humbles the giver, exalts the receiver, and sanctifies both (D&C 104:15-18). Both become more able to give as Christ gives.”
Because of my dad’s situation, and seeing so many others, and understanding the misconceptions about organ donations, our family has decided to become actively involved in educating and promoting awareness of the benefits and the lives, like my own dad’s, that can be saved through organ donation. Doctors explain that if those who could donate, would donate, there would be no shortage of organs for those in need.
Walter Payton’s (the NFL football player) family published a book about his life to heighten awareness of organ donation. He had PSC but developed cholangiocarcinoma before he could get a transplant. He died. Chris Klug, who won the bronze medal in the 2002 SLC snowboarding competition also had PSC and received a transplant in time. In fact, he won his medal after his liver transplant.
The liver: an amazing organ: 1) The body’s largest internal organ 2) about the size of a football 3) able to function even with significant damage 4) able to regenerate.
Liver functions: 1) Detoxifies – the body’s poison control) 2) Stores vitamins, minerals and sugar 3) Secretes bile – to digest fats).
Common Signs of Liver Failure: 1) Fatigue and lack of energy 2) Loss of appetite 3) Abdominal pain 4) Enlarged spleen 5) Loss of muscle mass 6) Jaundice – yellowness of eyes and skin 7) Itching 8) Loss of bone mass.
Common Signs of End-Stage Liver Disease: 1)Esophageal varices 2) Hepatic encephalopathy 3) Acites and edema 4) Low grade fevers and night sweats 5) Liver cancer – cholangiocarcinoma
The UNOS (United Network for Organ Sharing) uses a MELD (Model for End-Stage Liver Disease) score system to determine who gets the next available liver. PSC does not manifest itself in a way that scores a high MELD. The system is biased against PSC patients. A normal person has a MELD score of 6 and most deceased-donor organs are given to patients with a MELD score of 24 to 30. My MELD score is around 10 to 12.
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