“The Liver Grows Back” & Other Things Transplant Patients Don’t Want to Hear [Featured in: The Bigger Picture}

[This story was featured in: The Bigger Picture.]

My husband needed a liver transplant. This meant he also needed a spokesperson to field questions about his condition.

People are reflexively helpful, but just not all that into listening.Many preferred to share with me their knowledge of and experience with transplants - despite having neither knowledge of nor experience with transplants.

All meant well. At least that is what I would repeat to myself when a kindly soul would spend 30 minutes telling me how they felt about their really distant cousin’s organ transplant. (Or was that heart bypass surgery? Whatever! They couldn’t remember exactly.) The story would be peppered with enough bad medical information to make Dr. Thomas Starzl — father of modern transplantation surgery — rise from the grave just so he can drive them to the library.

When they would insert a real whopper, I would tactfully respond with facts. This was intended to gently nudge them to the truth. Sometimes I was successful, sometimes I was not. For those those “not” times, I would think of my mother, standing next to a smiling Zombie Starzl, reminding me that it is our family credo to be unfailingly polite. 

Let me take a moment to set the record straight. 

One of the most common things I would hear is:

“The liver can grow back.”  

This is true...ish. A healthy liver can regenerate. In fact, it's the only visceral organ able to do so. You can even start with a small piece of a liver (about 25%) and it can still grow into full size. Livers are the starfish of body parts. Neat, huh?

For example, a liver can be overtaxed by alcohol or medications, including over-the-counter ones. If those substances are eliminated or strictly controlled, the liver can, in very many circumstances, recover by growing healthy new cells. 

Over time, though, an unhealthy liver can become scarred, rendering it unable to regenerate. Severe scarring of the liver is what's known as cirrhosis. For people with cirrhosis, the medical path forward is retain as much liver function as possible, for as long as possible. 

At some point the cirrhotic liver will begin to de-compensate (i.e. totally crap out). This is referred to as End Stage Liver Disease, when transplant is the only option to prolong one's life.

Despite sharing the severity of Jim's condition, there were those who remained steadfastly convinced that Jim's liver would just grow back – much like the majestic lizard, flatworm or sea cucumber. Surely all this time spent engaging with doctors was just plain hooey – just more of Jim and TJ's wild shenanigans!

If you know someone for whom their disease is advanced enough for them to go to a transplant center for treatment, the condition is likely the type that can't fix itself. So, thank you for your hopes and prayers. I will be sure to let you know the moment that crazy liver grows back.  

“Will he get to choose/meet/hang out with the donor?”

In the case of livers, that would almost always be a no.

In the case of pretty much all other transplantable organs (except kidneys), that would be a hard no. 

I had a colleague – a truly well educated person, whom I respect beyond measure – once say this to me: 

Colleague: My cousin once got to meet her heart donor.

Me: You mean the actual donor – the actual, living person - who gave their heart to your cousin?

Colleague: The heart donor, yes. Lots of hugs and a really nice video. It was a really moving experience for her. I can send you the YouTube link.

Now I'm just going to pause here for a moment and let you re-read that. 

What I think my colleague meant is that his cousin may have had a personal meeting with the donor's family. And, I am certain this meeting was as powerful and moving as my colleague described. 

But, I would bet my savings account, my house, and my cats, on the fact that my colleague's cousin did not meet her heart donor. That is because the donor is no longer walking this earth. That donor made a beautiful, lasting, and final gift before departing.

What I do hope is this special donor is watching that video from heaven right now along with Dr. Thomas Starzl and a big bucket of popcorn and enjoying the heck out of it. 

The most frequent questions, though, were about the list.

“So is he on the list?”

What is generally misunderstood is that getting on the list is not a one-and-done thing. Rather, it is a multi-step process that often takes several months. 

The list itself is really a national database maintained by the United Network of Organ Sharing (UNOS). UNOS tracks all of the patients in the United States who are waiting for transplant. Not all of those on the list will receive a transplant because it is a sadly a matter of demand outpacing supply. When patients submit their quarterly, monthly, weekly blood tests via their transplant center, this is where the information goes. 

The anonymized information in the UNOS database is publicly available. In the case of a loved one, if you know a few factors, such as their MELD score (used for liver patients), blood type, transplant hospital and age, you can see how they’re doing in the “stats” relative to other patients. Those who study economics love this database because it is one of a kind and breathtakingly accurate. It is also a daily measure of life and death that can also feel unnervingly like fantasy football. 

What's often confounding to organ transplant newbies is how long the kidney list is compared to the other organs. If most people have two of them and only need one, why is the list of people waiting for kidney transplants so long? 

It's because kidneys are difficult to match due to a number of compatibility factors. That is why kidney patients and families have to quickly dust off their marketing and recruitment skills, asking friends, co-workers, church mates, dog sitters, to get tested for probable compatibility to be a living donor. I've had the privilege to meet many of these living donors. Some gave to family members. Some gave to neighbors. Some gave to absolute strangers. All are exceptional human beings. 

In the United States it is illegal to buy an organ, so the expectation is that all organ donations are altruistic. That's why that urban myth about “I woke up in a tub of ice” should no longer strike fear in the heart of an American. No surgeon in her right mind is going to go, “And this kidney came from where now? Some dude in a bathtub? Well, hand me that scalpel then!”

Livers are another story. While it is medically possible today to take a portion of a liver from a living donor and transplant it to a waiting transplant patient, these situations are still the exception rather than the rule. The majority of livers today come from a deceased donor. The donor is a person who, at some point in their life, registered their interest in donating their organs or whose family has made the decision on the donor's behalf. 

Now imagine the emotions this family is going through. They are losing someone unbelievably precious to them – a father, mother, daughter, son – and they are being asked to prolong the lives of others. Not all families choose to do that, which is sad. But, many do and find great comfort in it. Because it was just another way for their loved one's soul to take flight.

It is precisely because this gift is so precious that those involved in the organ donation process want it to go to someone who will take care of it and cherish it for the gift it is. 

This is why getting listed takes an investment of time and energy on the part of the prospective transplant patient and his or her primary caregiver(s) and support network of family and friends. Here's an idea of what getting listed entails:

Medical Testing

Intended to figure out: Will transplant resolve this patient's medical issues?

This is, by far, the biggest component. Prospective liver transplant recipients undergo many tests to assess their health on an ongoing basis. There are also a series of tests to ensure they can successfully make it through surgery. 

Patient Typing and Measurements

Intended to figure out: How can we help to ensure the match is the best one possible at the time of transplant? 

A liver biopsy is done to provide patient information that will help make a better match. People come in all sizes, as do livers. Doctors take a series of measurements to get a sense of what size organ would be a suitable fit. 

Patient Counseling

Intended to figure out: Does the patient understand that a transplant is a lifelong commitment and what specifically that entails? Is the patient ready/willing/able to make those commitments?

There is an evaluation of the patient's ability to responsibly care for his/her new liver. The patient needs to commit to avoiding substances that can harm it, as well as commit to ongoing care. Ongoing care, in this case, means periodic blood tests and daily anti-rejection medication every day, for life. 

Financial Counseling

Intended to figure out: Does the patient understand there is an associated cost to transplant surgery, ongoing care, and necessary medications and that managing these costs is his/her responsibility?

Medical insurance covers many costs for transplant patients, but it often does not cover all of them. While there are resources available to help provide for patients with financial hardship, these resources may not last forever or cover all of their out-of-pocket costs. The aim is to impress upon the patient the ongoing financial responsibility they may be taking on. 

Family Counseling

Intended to figure out: Does the patient have a really good support system he/she can rely on before, during, and after transplant surgery?

A patient can't do this alone. There is an expectation that he/she have a strong support team. They like to see the patient regularly accompanies by family and friends during doctor visits. A primary caregiver interview is also part of the process.

In Jim's case, a number of these steps – particularly those involving family and finances - were addressed in an all-day bootcamp that I discuss in more detail in the book. 

Once these details are gathered, the patient's information is put before the a review board – typically comprised of hospital doctors and medical staff. This team the reviews the case file to assess the patient's suitability for transplant. 

If the patient is green-lit, he or she is then added to the national transplant waiting list. 

This is intended to serve as a general overview based on our personal experience with liver transplant. Please keep in mind: Each organ is different. Each hospital's process has its own nuances. Each patient's situation is unique. 

Also, I need to give the necessary disclaimer: This content is not intended as a substitute for professional medical advice, diagnosis, or treatment. (In other words: Rely on advice doctors and qualified medical professionals for advice/diagnosis/treatment, not some really awesome lady on the internet.)

For more information on organ transplants and the listing process, I encourage you to visit U.S. Department of Health and Human Services web site.