Causes

From a Living Organ Donor: How I Convinced My Loved One to Accept My Organ

In November of 2017, I became a living liver donor to my husband. At the time, he was battling liver failure and liver cancer stemming from non-alcoholic steatohepatitis (NASH). Concerns about his liver began when he was only five years old. As the years passed, NASH turned fat in his liver to scar. As his liver scarred, it hardened. As scar replaced his healthy liver, it pushed him into liver failure.

To make matters worse, he then developed liver cancer. NASH’s abnormal scarring can easily turn to cancer. With a liver on the edge of death, it is often difficult, if not impossible, to safely treat the cancer without pushing the liver into acute failure. For patients like my husband, this creates an urgency to replace the diseased liver before the cancer grows or spreads.

Liver cancer pushes patients into a race against death.
For liver-failure patients, the spread of cancer outside of the liver often means certain death. Metastasis or advanced cancer in liver-failure patients disqualifies them from the liver-transplant list. This is because post-transplant patients must take immune-suppressing anti-rejection drugs for the rest of their lives. Remaining cancer within a suppressed immune systems is aggressive, spreads quickly, and is often not hindered by treatments that may eliminate it in patients with healthy immune systems.

To keep from being disqualified for the only life-saving treatment available to them, liver cancer and liver failure patients are in a race against time to receive a liver before the cancer spreads. Sadly, with an overburdened organ list, the wait to receive a liver can be too long.

When my husband was diagnosed, I panicked and grieved heavily. I knew the potential of losing him was great and I was unable to cope with this reality. My number one goal in life became saving my husband. Sitting next to him in his hospital bed, I began what would be four long months of full-time research into our options and next steps. This research, coupled with prayer, became my way of coping. It became my search for hope.

Living liver donation means hope in a race against death.
I had heard of living organ donors before. I knew we all have two kidneys and can function with one. I had heard stories of people who donated a kidney to a loved one experiencing kidney failure.

Though I knew we only have one liver, while attempting to shorten my husband’s long wait time on the overburdened organ-wait list, I found hope in the concept of living donation. I desperately searched for any cases in which part of a liver was donated to save someone in liver failure.

What I found was that living liver donation was not only possible but had been performed and studied enough that it was considered a superior option for liver transplant patients. This discovery was the beginning of hope.

Living donation offers life-saving, -enhancing and -prolonging benefits for many.
When I shared my desire to become his living donor, my husband was hesitant. He didn’t want me to undergo a major surgery for him. So, my mission became to convince him before it was too late with sound and indisputable research. My research revealed six reasons living liver donation is more successful and safer than deceased donor liver transplants, not just for the patient, but for their families and the transplant community at large.

1. A living donor transplant offers a higher chance of winning the race against death. 

1 in 5 people on the organ wait list will not survive the wait. When my husband was listed for his transplant, it took one day for me to begin testing. The day after he was listed, we ventured to UVA to finalize details. While there, UVA’s living donor coordinator ordered a blood-type test.

Once she confirmed I shared my husband’s blood type, it took just two consecutive days of appointments to determine I was his match in other ways. Though testing is often scheduled over several weeks or months, when necessary, it can be completed within just a couple of days.

My husband’s transplant team had estimated he was likely to receive a viable offer for a deceased donor liver by February or March 2019. Given his health decline, this would have been too late. For this reason, it was clear that living donation was my husband’s only chance at life. And, though it is policy to wait two weeks before donation to give the donor a “cooling down” and decision period, within a week and a half of this confirmation, we were in surgery.

For us and for many others on the list, months or even years of waiting is a death sentence. Living donation is an option that eliminates or considerably shortens that deadly wait.

2. A living donor transplant saves two lives.

My husband is a protector. In his heart, that is one of his most important roles in our family. The thought of his wife going through surgery to save him seemingly went against everything he believed.

But, the truth is, after we thought it through, he realized it goes right along with his protector heart. While some liver patients can accept a “marginal liver” (one that has Hepatitis C or the like), we were told at diagnosis that my husband would need a “perfect liver” to survive. This narrowed our options and elongated his wait time. But, when living donation became an option, it meant we had the power to ensure someone else got that “perfect liver.”

There is likely a person still alive today because they received the liver my husband could have (if he survived the wait). As a protector, saving two lives instead of one was enough to convince him that accepting my liver donation was the right thing to do.

3. A living liver donor organ is healthier and experiences fewer life-threatening surgery complications.

My testing to be a donor was meticulous. My entire core was scanned in depth — including a liver MRI and a chest x-ray — to ensure no cancer, hepatitis, or other threats to me or my husband were present. A slew of blood tests searched me for any risks to either of us, including infectious diseases, undesirable blood counts, mismatched blood chemistries, and inadequate immune system function.

I was also screened for risky behavior to rule out infectious diseases or conditions that were not yet visible via tests, including risky sexual, travel, and substance use behaviors. Even after thorough testing, my surgeon then checked my physical appearance (including the condition of my skin) for physical signs of emerging problems that could affect my husband’s health post-donation.

Though this testing ensured I was safe, it also ensured my husband received his “perfect liver.” To ensure the same benefits across the nation, this thorough testing is policy across the board with very little variation.

In comparison, a deceased donor organ must be transplanted quickly before losing its viability. Organ damage occurs within hours of removal from the donor. To reduce damage, testing that takes living donors days or months to complete is performed in just hours.

And, with the shortened testing comes a less-thorough understanding of the donor liver and its history. This creates a greater potential for immediate transplant risks for the recipient, including rejection. In addition, with less time out of a body, a living donor liver often begins working in the recipient faster, providing a shorter recovery time and fewer immediate complications.

4. A living donor liver transplant means a longer post-transplant life.

When evaluating our options, I had heard some reports that living donation was a lesser-than option for long-term survivability. This concerned me. I did thorough research to ensure donation would create the best chance at a long, happy life for my husband.

And, I was so happy to learn that, statistically, as thorough living donor testing creates a higher immediate transplant success rate, it also means a longer post-transplant graft survival. On average, a deceased donor liver graft is viable one-year post-transplant 83 percent of the time. But a living donor graft is in good health one-year post-transplant 92 percent of the time.

In addition, certain donor age groups can mean even longer success. Increasingly, transplant centers accept deceased donor livers that are older than ideal to save more lives. Some even surpass 70 years of age. Older organ grafts come with more risks as their regenerative and defense capabilities decline.

Living donor livers, however, must fall within certain age criteria to not only ensure best recipient health but complete regeneration in the living donor’s remaining graft. For this reason, living liver donors at our transplant center must be between 18 and 60 years of age and in great physical health.

These limitations, as well as strict donor health criteria, means donors have health levels more commonly associated with younger people. In this, too, similar criteria are used across the nation. While this protects the donor, it also means longer graft survival in the recipient.

The previous research showing less immediate complications with living liver donation grafts also showed fewer long-term recipient complications. While a deceased donor liver may remain outside a human body for hours before transplant, a living donor liver is often outside of a human body for mere minutes as the donor and recipient undergo side-by-side simultaneous surgeries. In the end, this means less long-term damage stemming from reduced blood flow to the out-of-body organ.

5. A living donor liver regenerates quickly for the living donor and her recipient.

In a living donor liver transplant, a part of the donor’s liver is removed to give to the recipient. But, this doesn’t mean the donor must live on only a portion of a liver. The liver has an amazing ability to regenerate to a full-size organ within eight weeks of surgery. As a result, both a living donor and her recipient can enjoy a fully formed, fully functioning liver within 8 weeks of transplant. In the meantime, the donor and recipient enjoy healthy liver function even as each part grows back.

While my husband and I felt some fatigue for the two months our liver grafts were regenerating, our livers functioned healthily immediately following transplant. In fact, my husband’s liver began working the moment it was sewn into place.

Knowing what was left of my liver post-donation would offer me full long-term health put my husband’s mind at ease. In turn, knowing I could offer my husband a fully-functional full-size liver by donating just 54 percent of my liver fulfilled my goals in donating. It meant I could offer my husband as full of an organ as a deceased donor would.

6. Living donor liver transplants strengthen families experiencing trauma.

As in any terminal diagnosis, organ failure leaves families and patients feeling helpless as they watch the life drain out of their loved one. For me, the helplessness was crushing. At times, it was hard to even breath. But, when I found out I was my husband’s match, that helplessness vanished.

A large contributor to long-term trauma effects is the presence of prolonged helplessness. As it did for us, living donation offers a shortening of and, ultimately, an escape from these feelings. In turn, the long-term anxiety trauma produces is often reduced, helping families to heal faster.

While trauma has a tendency to make people disconnect from those around them and often causes significant strain on marriages, living donation has only strengthened our bond. My husband now knows I meant it when I said I would do anything for him and our trust in each other has grown as a result.

And, studies show our strengthened bond isn’t uncommon. Married couples who survived organ failure via living donor transplant report stronger bonds than those who received a deceased donor transplant. In fact, the average donor reports a heightened quality of post-transplant life.

For my husband, the thought of strengthening our bond and creating a greater quality of life via the decision to accept my liver aligned with his desire to be our family’s protector. At this point, we already believed it was the best decision for our family and studies confirmed it was likely to be true.

Choice stands in the way of living donation.

In my involvement with the transplant community during our recovery, I have found that many organ-failure patients have the option of receiving a living donor organ but, like my husband, feel guilty or concerned for the living donor. If you are hoping to become a living donor for a loved one with the same concerns, I hope my journey of convincing my husband can help you save your loved one’s life, too. If you need more information, I am happy to help. Just comment below so we can work together.

In our case, living donation was the right thing to do.

When it became apparent my husband was unlikely to survive the deceased donor organ wait, he was at risk for growing cancer and had experienced several life-threatening bouts of internal bleeding, a liver failure complication. Excessive blood loss and growing cancer were weakening him, making him less and less likely to survive a transplant surgery. We knew that, if he became too weak, he would be delisted from the organ waitlist. We were in a race against time, time we couldn’t afford to spend waiting for a deceased donor liver.

Sadly, cancer and blood loss didn’t contribute to an immediate significant increase of his MELD (model-for-end-stage-liver-disease) score. This means he remained low on the list and so had a quite a wait before him. But, thankfully, his low MELD score did help him qualify as a living donor liver recipient.

Though each organ failure story is different, many such factors reduce the survivability of organ wait list patients and are not reflected in their place on the list as determined by their MELD scores. For many, this means they will not survive the wait. The miracle of living donation meant we had a way out of the inevitable. We could act before it was too late. And, it has the same potential to save thousands of patients who cannot survive on an overburdened deceased donor wait list.

You have the power to save one or many lives.
At the time of this writing, 122,000 US citizens are waiting for an organ. And many cannot wait any longer. 8,000 of them will die this year (22 a day, on average) because they didn’t receive a deceased donor or living donor organ in time. You may think that because you don’t know someone in organ failure, your ability to help end this nightmare is limited. But, the truth is, you can save a life. In fact, you can save several. Here’s how:

Register as an organ donor. Every time someone chooses to donate their organs after death, they have the potential to save 8 lives and improve up to 75. And each donor means fewer people waiting and shorter wait times. Click here to register to be a deceased organ donor or visit the Donate Life America website.

And, if you aren’t sure if registering to donate life is the right option for you, consider reviewing the common myths associated with becoming a deceased organ donor here or visit organdonor.gov’s Organ Donation Myths and Facts page.

Become a living donor. You can become a living organ donor just like I did, even if you don’t know anyone in organ failure. This is called an altruistic or non-directed organ donor. Transplant centers around the nation are willing to test people who would like to donate to a stranger.

By being tested and approved, you are added to the list of available organs and matched to someone who can accept an organ from you. Most commonly, living donors, whether altruistic or, like me, directed to a particular person, donate a kidney or part of a liver. But, living donation is also an option for those needing part of a lung, part of an intestine, or part of a pancreas, while still offering the donor a normal life and saving a family trauma and grief.

Though like any surgery, living donation isn’t without risks, in our case, my husband and I concluded that it has the potential to do far more good than harm for the recipient, the donor, and the transplant community at large via saved lives, fewer potential risks, and strengthened families. If you are interested in saving a life by becoming a living directed or altruistic organ donor, find a transplant center near you to be tested by clicking here or visiting the American Transplant Foundation’s Become a Living Donor page.

Alana Rudder

Alana Rudder — Founding Member of Experience Perspective, LLC —offers content strategy, marketing project management, and content writing services to Fortune 500 brands, including Adobe, as well as countless mid-size and startup brands. She writes about business technology, martech, marketing, leadership, organizational development, and the causes that are so dear to her: organ donation, living donation, and organizations that lend to the welfare of children in crisis around the globe. When she isn't working, she loves to spend time with her rescue pets and participating in living history events with her dear husband.

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4 Comments

  1. Gary Smith says:

    Great article Alana! Well done and very informative.

  2. Hi would you mind stating which blog platform you’re working with? I’m going to start my own blog soon but I’m having a tough time deciding between BlogEngine/Wordpress/B2evolution and Drupal. The reason I ask is because your design and style seems different then most blogs and I’m looking for something completely unique. P.S Sorry for getting off-topic but I had to ask!

    1. Alana Rudder says:

      This is a WordPress theme. No problem with getting off topic. I’m always happy to help!

  3. I guess that this human adventure gave another meaning to your lives and your relationship.
    You give us an impressive life lesson.

    Sincere respect to both of you.

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