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

[okarol]

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

By Amber Allen
aallen@gainesvilletimes.com
POSTED  Aug. 10, 2008 12:30 a.m.

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.

http://www.gainesvilletimes.com/news/article/7762/ Watch a multimedia slideshow of Amber's journey as she talks about her decision.

[stauffenberg]

What a pile of ... misinformation!  There has been a huge number of studies of how kidney donation has affected the donor's life, despite what this article says.  Also, this donor constantly fretting about the health of her remaining kidney is absurd, since all the best medical evidence indicates that renal donors life longer than the average person, and that there is no damage to the remaining kidney from the donation.  She is complaining about the $300 cost of medical exams she is paying for to soothe her irrational worries.

That said, of course donors' expenses should be generously covered, and many countries have programs to do this.  However, other countries regard even covering a donor's transplant related expenses as an illegal inducement to donate and forbid it by law.  There is a problem of slippery slope, however, since if we pay the donor for all expenses associated with the transplant, are we paying an inducement to donate if we pay for the labor, pain, or perceived long-term medical risk in donating the organ?  What if the person is unemployed and gets $100 a day for his loss of potential working time during the transplant process?  What moral principle are we really seeking to preserve by forbidding payment for organ donation?  Is it that we feel it is wrong to pay for the donation process, which includes the donor's time, pain, and medical risk, or is it only wrong to pay for the organ per se?  Can we rigorously distinguish what is paying for what, once we start handing money over to the donor?

[paris]

I would be interested in other donor's opinions.   It is a gift and once given, it is no longer yours.   Maybe I am reading this wrong, but an article like this will not help living organ donation.  Maybe she didn't have enough evaluations before donating.    I don't know, am I taking this wrong?    We all know the rules right now regarding being paid for donation. It is made very clear before donating.   How long should medical expenses be covered?      I look forward to other opinions.

[okarol]

There currently is no process in place which tracks outcomes for living donors. No statistics are available. I personally think this is because most living donors do just fine, and no problems develop in most cases. However, if a donor develops problems related to donation later on they better have their own health insurance. Even donors who have a surgery related hernia have to fight to get help from the transplant hospital. And that isn't uncommon.
I know this author from livingdonorsonline. She is expressing the concerns many other donors have. People donate thinking the hospital has their best interest in mind, but in reality their goal is to take care of the recipient. I believe our experience at Scripps was as good as it gets for a donor, and I feel very fortunate. But this isn't the case everywhere.

[paris]

Thanks Okarol.  When my potential donors were tested, their own insurance was necessary and the evaluations to rule out potential problems.  My son, who is lean and muscular, training for a marathon was refused because his blood sugar was between 90-100 on two different tests. They deemed him pre-diabetic.  That was with Johns Hopkins.   I wonder what the answer is.  How do we increase donation and assure the donor that their life will not be affected?    I think you are right that most donors do well.  It seems like it might be time for someone to start tracking post donation experiences.   I am having a little problem with both of my transplant centers, so am a little frustrated with the system right now. It all seems like such a crap shot some days.  It worries me when I read a story like this because I don't ever want to put someone in that position. I would feel horrible if someone had health problems because they donated to me.  Do others struggle with this?  Tomorrow I will probably feel different--with my memory I won't even remember this!         You are such a wonderful supporter of living donors and we who need kidneys love you for it!