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What's mine is yours: A living donor's tale

Times copy editor Amber Allen tells how she saved her cousin's life by donating a kidney

POSTED: August 14, 2008 5:00 a.m.
ALFRED HERNANDEZ/Yuma Sun

Amber Allen, left, and Annie Roberts are prepared by Mayo Clinic Hospital nurses before they head to the operating room Aug. 10, 2005, in Phoenix.

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When I wake up in the morning, the furthest thing from my mind is, "I saved someone's life."

I no longer wear the green plastic wristband (a la Lance Armstrong's yellow "Live Strong" version) that says, "Give the gift of life." I think I've only worn my "living donor" lapel pin once. My only badge of honor consists of four puncture marks on my abdomen and a 4-inch scar above my pubic bone.

Other than that, I'm your somewhat average 27-year-old who donated her right kidney to one of her cousins three years ago today.

In the years since the surgery, I have been through emotional highs and lows: the intoxicating feeling of seeing a person once so sick now making leaps and bounds in her recovery, to the anxiety and concern that comes with the donated organ being close to rejection. Immediately after the surgery, I became an advocate for the cause of organ donation.

When my husband and I moved to North Georgia from Augusta, where we had lived for more than two years, I picked up bad habits and found myself not exercising and not eating healthy foods. I picked up a couple of stressful jobs, and my blood pressure started to suffer.

I started to worry about my remaining kidney. My doctor scheduled tests to look at the organ's function, which turned out to be good, but ended up costing me $300 because my health insurance didn't cover it. Three hundred dollars may not be a lot for some people, but for someone who's struggling to pay back student loans and credit card debt, it was depressing.

Earlier this year, when my newest doctor suggested another round of labs to test my kidney function, I burst into tears. I told her that I could not afford another $300 worth of lab fees. She promised me I wouldn't have to pay a thing, but health insurance, once again, wasn't able to back her up. Still, my kidney is fine.

Over time, with these events on my mind, I started to question my decision to donate to my cousin. Had I done the right thing for my health? It made me angry how living organ donors are treated in this country. The situation also made me mournful for the loss of innocence that surrounded my donation experience.

This process hasn't been easy for my cousin, either. It has taken her and her doctors three years to find a better balance of anti-rejection medicine. She currently is living with diabetes, but other than that, her transplant team says my kidney is still doing the best it can for her.

I would say the hardest part about the past three years is just learning to let go. It's not my kidney any more. Now, all I can do is give her the love, friendship and support that she needs, while also working on myself.

Reaching out
Annie and I grew up in different worlds.

While I grew up comfortably in a stable, two-parent home in Sioux City, Iowa, Annie and her younger sister, Jennifer, were taken from Iowa to Yuma, Ariz., by their mother after she and uncle Bob divorced when the girls were young. They lived in an atmosphere of drug addiction and uncertainty.

At an early age, Annie tried to act as the head of the household to care for Jennifer, and eventually her stepsiblings. She felt sick, but she didn't know why. Annie had been born with chronic kidney failure and neurogenic bladder. Her mother was aware of her medical condition, but never told Annie why she kept getting stuck with needles.

Only when Annie was older did her doctor share with her the reason for her chronic illnesses. She asked for all of her records, and she studied the ailments and treatments. Annie graduated from high school and went to community college before she became too sick.

She and her longtime boyfriend, Kendall Roberts, eventually married. They couldn't find jobs that would give them health care. In order for Annie to get on Medicare to get the treatment she needed, they had to legally dissolve their marriage. Despite that, they still wear their wedding rings, and she still uses his last name.

In December 2004, my dad called me from Arizona. He had flown there to help Annie recover from surgery. In this procedure, she was getting her bladder removed and being fitted with a urostomy bag. He called to tell me how she was doing, and that she probably would be going on the transplant list sometime soon. One of her kidneys did not work and the other was losing function. He said that he would volunteer to be her donor.

I told him that I wanted to be tested, too.

In April 2005, when Annie was 30 and I had just turned 24, we began the journey that would bring us together. She had just been put on the transplant list, enabling the process of finding a donor to begin.
After it was determined my dad wasn't a match, I decided to give it a shot since my cousin and I both had B-positive blood types. After the phone interview and a lot of blood tests, I flew from Augusta to Phoenix in May 2005 for two days of rigorous testing at the Mayo Clinic.

After meeting with a flurry of doctors and advocates and quizzing my surgeon, I took a red-eye flight back to the East Coast, feeling excited and accomplished.

About two weeks later, I received a call from my transplant coordinator. She said that I was approved, and she would schedule the surgery for August.

On Aug. 10, I was back at the Mayo Clinic, checking in and getting prepped for my first surgery.

Lack of long-term care
In the United States, most people who have donated an organ are left to fend for themselves. There is nothing mandated by the federal government for transplant centers to track living donors. I probably could count on one hand how many studies have been done on living donors about how the surgery affects the rest of their lives.

Recipients, on the other hand, almost always are tracked by their transplant hospitals. They go in for yearly checkups to check the function of their new organ(s) and can call in between those visits if a medical issue arises. This is the case for my cousin, who is watched closely by the Mayo Clinic.

A huge issue for living donors, my case included, surrounds health insurance. The recipient's insurance provider always covers the transplant, along with a post-op visit about two or three months afterward. Once that period of time is up, donors have to use their own insurance. That can create problems, especially if there are complications that arise after the surgery.

Also, if a living donor gets a new private insurance provider years later, the provider can sometimes be reluctant to take us on because they can view us as a risk or see a pre-existing condition.

Donors also sometimes have emotional issues. In some cases, the recipient turns a cold shoulder to the donor. Or the recipient doesn't take care of their body, causing the donor anguish and regret over their act of goodwill. And there are cases where the recipient has died. These are all difficult situations to handle, and some have suggested that we seek treatment for post-traumatic stress disorder.

About a year after the surgery, Annie was hospitalized and it looked as if her body was starting to expunge my kidney. When I heard the news over the phone, I took it well. I told myself, "Well, I always knew this could possibly happen."

And then, in the next few hours, I was beside myself in terror. How does one prepare for the death of a part of your body? Even though Annie and the kidney recovered, I still harbored anxiety.

While I have received loving support and turned my lifestyle around, I know that my living organ donation journey is far from over.

I plan on writing those in authority, because I want an opportunity to speak for people like me who have given a piece of themselves, but have seen their government and transplant centers do little for them in return.

Clarity in my decision
After our successful surgeries were over, Annie and I were wheeled to the transplant floor of the Mayo Clinic Hospital in side-by-side rooms. A few hours later, Annie amazingly got up from her bed and walked over to my room. She was smiling, and the yellow pallor on her skin already had started to subside. I was thrilled for her, but I told her she wasn't going to get me out of my bed any time soon.

The next day was the day for me to get up and walk. I was scared. Patiently, Annie taught me how to reach over and grab the opposite rail on the bed and slowly pull myself onto my side and then up into a sitting position.

Gingerly I came to my feet and stood, stooping over like an old woman. I grabbed a hold of my nurse's hand and put a tight grip with my other hand on the pole that was monitoring my body and carrying my catheter bag.

Annie already was ahead of me. We were going to walk a lap around the nurse's station to see how I felt.

Annie still was ahead of me, cheering me on as I went. I smiled, taking pleasure in the moment. Then it struck me like lightning. I thought to myself: This moment wouldn't be happening if I hadn't donated my kidney. She is better because of me. The thought overwhelmed me, and I began to cry.

My nurse and dad asked if I was OK, if I was in pain. Through my quiet sobs, I told them that I was OK, and we needed to keep walking. Annie, too, thought I was in pain, and as soon as we were done with that first lap, she made sure I returned to my room to rest.

I sat down in a chair next to my hospital bed and grabbed some tissues to wipe my eyes. I breathed in a deep breath, and then let it back out. Wow, I thought. This really happened, and I smiled.

These days, three years later, I am able to smile about my donation experience again. What I felt at that moment is why I did what I did. But I am afraid that without better long-term treatment for living donors, others will be reluctant to make the same decision; the decision that could save someone's life.



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