Wednesday, March 23, 2011


We all know what the word ‘transplant’ means, but what exactly does it entail? I’ll try to explain the process without putting you to sleep.

Dr. Christiaan Barnard performed a successful transplant on a black woman in South Africa in 1969. She lived twelve years and six months with her new heart. In 1967, Dr. Barnard had first tried several heart transplants but the patients died. For many years the effectiveness of transplants was debated. Then, in 1981, Dr. Starzl (my hero who transplanted me in 1984) championed the anti-rejection drug Cyclosporine. Prior to then, rejection occurred almost 100% of the time. The way to stop rejection was high levels of steroids, which ended up killing the patient. Once Dr. Starzl found the solution to keeping patients alive (Whew! Am I glad…), other transplant centers came into being, and with it a need for regulation (1984).

All transplant candidates have been evaluated and suffer from confirmed end-stage organ failure. At that point they are placed on ‘the list.’

The list, that mysterious word every transplant patient pronounces with pathos, becomes the first step on the long road to an operating room. The list is kept in Richmond, VA at a place called the United Network of Organ Sharing (UNOS), a complex national bank of organ data, which it collects and manages. UNOS operates twenty-four/seven, continually updating and changing the list as information becomes available.

Being on the list is not a linear thing. One doesn’t get a number and wait in line. The list is actually a pool functioning according to patient data. This patient data is regularly modified to ascertain placing on the list. A score called Model for End-stage Liver Disease or MELD score is one of the many criteria used. It’s based on certain levels in a candidate’s blood test: the worse the levels, the higher the score. This information and other such as organ, blood type, tissue, size and match will determine the candidate’s position.

But wait…there’s more. UNOS, the headquarters of the list located in Richmond has tentacles. They’re called OPOs or Organ Procurement Organizations, to be precise eleven of them scattered throughout the United States. These organizations see to it that donated organs from their specific region get used at their transplant centers first. If an organ cannot be used in their region, then it goes to the next closest OPO region. Should it not be needed, the organ will be free for distribution to any other transplant centers in the country. The reality though, is that the majority of organs are used in their OPO region. Because the list is a pool, patients’ waiting time varies. All things being equal, it’s the patient with the greatest need that will be transplanted first.

Are you still with me?

The average waiting time for a heart is from three to eight months, a liver eight to fifteen months, a lung fifteen months to two years, a kidney three to five years. Currently there are between 80,000 and 100,000 people waiting for an organ. On average, eighteen people die every day waiting. 15,000 people are added to the list yearly.

There are plenty of horror stories out there with respect to organ retrieval. I should know. My husband was offered a script about steeling kidneys in India. I’m glad he didn’t make that movie. To be fair, the script was exciting: the topic lends itself to an action flick. But when I read it, the flaws were too obvious, which, for someone like me, is unacceptable.

Transplant myth A: “If you die, your organs will be taken without your consent.” You cannot take an organ from a dead person. If the heart has stopped beating and oxygenation of the body has ceased, so has oxygenation of the organs. Organs can only be retrieved from the certified brain-dead. That person has zero or very little brain activity, and therefore, is a corpse with blood flow and oxygenation of the organs. There is no recovery from brain death. Period.
More recently ‘non heart-beating organ donation,’ is experiencing resurgence. If you’re in the hospital and have a directive to become an organ donor, after your heart stops and you are proven dead (checks and balances) your organs are retrieved before they deteriorate. This practice has helped narrow the gap between donors and recipient.

Transplant myth B: “There’s a black market out there for organs.” The United States does not have an organ black market. There are no hidden, fully equipped, sterile, state-of-the-art operating rooms floating about where people are kidnapped and anesthetized to harvest their insides. Everything regarding transplants of any kind, be it living donor, tissue or organ is regulated and verifiable.

Transplant myth C: “If I say I’m a donor and I’m in the hospital they might let me die.” The person who came up with this conspiracy theory has obviously never been in a hospital. Need I elaborate more than to say that doctors, nurses, orderlies, more nurses and more doctors pass through your room at all times? The likelihood of something getting past them is as unrealistic as a mother committing suicide to give her remaining kidney to her daughter. The script definitely needs a rewrite.

But, forget the myths and the regulations. None of it would mean a damn thing if not for the most important component to organ transplants, which is…(drum roll…) organ donation. And here the scariest statistic of all: practically every American adult (98%) has heard of organ donation, however, only 30% take the trouble of becoming donors. All you healthy people out there, this is your chance for greatness. The gift of an organ is a purely altruistic and trusting act. It comes from a place of generosity and caring for your fellow human. Whether you are a living donor, or a deceased one, the decision to donate organs is by far the kindest and humblest accomplishment in your life. 

Thursday, March 10, 2011


Just about a year ago, around this time, I decided to participate in something I had always wanted to do, but had never been healthy enough to undertake. It was the AIDSLifeCycle ride departing from San Francisco and arriving in Los Angeles six nights and seven days later. Normally, this journey on a bike isn't something you jump into a couple of months before it takes place.

But, leave it to me to decide spontaneously. Fortunately, I’m not the only spontaneous person in my family. When I asked both my sons if they would join me, my oldest didn’t hesitate. “Sure, I’ll do it,” he casually responded. Neither he nor I knew what we were getting ourselves into. And, it was probably better that way.

So here we were, mid-March, joining another 1800 HIV/AIDS advocates. The AIDSLifeCycle ride raises money to provide critical services for the afflicted. The fact that it’s a fundraiser and a ride makes it appealing. On one hand, you’re supporting a worthy cause: in order to participate in the ride, you must raise at least $3,000. On the other hand, you’re in for the experience of a lifetime, which, for my son and me began with a practice ride of 75 miles from Santa Monica to Palos Verdes and back.

Prior to tackling the Palos Verdes ride, we were advised to try out our new equipment. New bikes, shoes with cleats, helmets, biking shorts, gloves, and jackets. My son and I had never ridden a road bike with cleats, but we certainly looked the part. (Move over Lance Armstrong, my outfit is cooler than yours.) In fact, I had not ridden a road bike since I was twelve! First, I started out mastering cleats on flat surfaces. Then it was time to try something more challenging.

A very patient and generous friend took my son and me to Malibu for our first hill along Pacific Coast Highway. Ten feet up the hill I fell on my side. Ten feet further, I fell again. Ten more feet…fall. Always on the same right side, always because I couldn’t get out of my cleats fast enough. After about eight falls (I love my helmet!), I “quickly” realized that if your road bike isn't moving, you'll fall. I knew this, but my muscles didn’t. They weren’t cooperating. In fact, every ten feet, my muscles went on strike.


Black and blue lesson #1: build muscle before you plan on climbing a hill.

The day of the Palos Verdes ride, AIDSLifeCycle management, highly organized and made up of the nicest, most helpful people I’ve ever met, gathered the riders around for a pep talk. They said, ”Whatever you do, respect the rules of the road. The police will stop you if they catch you running a stop sign.”

From the moment riders hit the road, they jockeyed for position. They zoomed by my son and me, an endless stream of, “On your left!” shouts as they passed. We ended up somewhere in the middle, among the ‘laid back’ group of riders. When I reached Manhattan Beach, I saw a stop sign before me and stopped. Suddenly, flashing lights in the sun, a black and white car. I released my cleat in time, just before falling over from exhaustion.

“Do you know you ran a stop sign?” the officer asks. I stared at him. Answering ‘yes’ wouldn’t have been honest. I had been much too focused on making it to the next lamppost to notice a stop sign. Answering ‘no’ wouldn’t have been honest either, because I had seen the stop sign right before considering a mirage of the road buckling before my eyes.
The very helpful “Roadies” rushed to my defense. Instead of answering the officer, I stared at him and…burst into tears. He stepped back, “That’s never happened before, that someone cry when I give them a warning,” the officer said, which only made me sob more. What had I gotten myself into? How the hell was I going to ride 575 miles if I flaked after 45? How was I going to get to Palos Verdes?

I stood next to my bike in tears holding the warning from the officer who had quickly left. The roadies kept asking, “should we drive you to the next pit stop? Do you need someone to ride with you? Is there anything else you need besides tissues?” I blew my nose, shook my head and thanked them.

I knew what I had to do. Two words, three max. Keep going or…you’ve got this or…just do it or…you and me or…try harder (take your pick). I got back on the bike, clipped into the pedals and moved forward. Just to that next garbage can…just to that next tree…just passed that little hill up ahead…Five miles later, I saw my son sitting on the pavement next to his bike sipping water, waiting. We continued on our way together, my son slowing down every time I fell too far behind (damn you twenty-year-olds!) The roadies drove by in intervals and shouted from the car, “Are you all right?!” I gave them thumbs up and continued riding.

Harsh lesson #2: if you think you’re in shape, think again.

The Palos Verdes ride was an eye opener for things to come. Thankfully, we did get in several more rides before the big event. Still, it’s only on the last day of our major journey from San Fran to LA that I got it. After a week of putting my fake hips and knees through long hills and deep valleys, smooth surfaces and bumpy ones, I finally felt confident on my bike. I had built up my muscles, including the one in my head. Tenacity.

Joyous lesson #3: never underestimate your abilities. You’ll be surprised how much you really can do.

The time has come for another AIDSLifeCycle ride. If you know anyone who is participating, open your wallets so that some unsuspecting person like I was has a chance to develop his/her Tenacity.