In 2004, the Department of Health and Human Services convened the Women's Summit on Organ Donation in Washington, D.C. The conference brought together scientists, surgeons, volunteers, academics and researchers ... and also a few organ-donor families and recipients.
Perhaps the two most arresting stories were told by two Washington-area women, both profoundly affected by organ donation. These are their stories, in their words:
Suzanne Eckler, Gloria Brooks
Suzanne: My husband Bobby kissed me good-bye on his way to work. Later that afternoon he suffered a massive brain aneurysm. He was only 59. That night we decided to donate his organs. I wasn't ready to let him go and felt that by donating his organs, somehow he would still be here.
Gloria: I received a liver transplant in 1992. At the time I became ill I worked for the Environmental Protection Agency in a demanding, stressful position. The cause of my illness was unknown. The doctors suspected a rare form of Hepatitis A that simply destroyed my liver. My kids, 6 and 9, were told I would not be returning home. My family was told I would probably not survive even with the transplant.
Suzanne: It was November 18, 1992. Little did I ever think that morning was the last time I would see my husband alive. At 4:10 he called and said, "What are we going to do this evening?" I said, "Let's go out to eat." He said, "No, let's get a video and eat in."
At 6:10, I got a phone call while at exercise class. They said my husband was at George Washington University Hospital. I thought, how could he be? He had never had a sick day in his life. He had just had his physical three weeks earlier and the doctor said that if all his patients were as healthy as Bobby, he'd be out of business.
I thought it might be a stroke and that we'd make it through somehow. When I got to GW, the doctors said he had an aneurysm and had collapsed at work. The prognosis wasn't good.
I walked into the room and he was heavily sedated -- motionless, with big pads on his eyes. I was speechless I didn't know what to say. A little later, a nurse asked me to leave. I knew something had happened.
I went into the waiting area and watched the doctors and nurses scurry up and down. They called my husband's doctor "stat." My heart sank to the floor. Finally, a doctor walked towards me. He looked at me and said my husband had had another aneurysm.
"There was nothing we could do, it destroyed his brain stem," he said. That doctor never stopped walking, never looked me in the eye, never took my hand. He just kept walking.
Finally, a young nurse came up and took my hand. She asked if I had ever considered organ donation. I remembered a commercial from TV and the music that went with it. Bobby and I had never talked about organ donation. We'd never even talked about dying. He had just had his 59th birthday a few days before.
I looked at my children and said, "Why don't we?" My son agreed but my daughter didn't.
"No way," she said. "I don't want anybody cutting up my dad."
"Oh, but just think -- it would mean that he would still be walking the earth in some way," I said, and she finally agreed.
We stayed with him that night because they had to keep everything hooked up and going. The next morning, we met with the organ procurement person. A priest was there with us. There was a big long checklist and when we got to the liver, I said, "I don't think you'll want his liver -- my husband was a big party guy and it's probably not in very good shape."
When we were finished, the priest hugged me. "I don't know if I could have done that," he said. All I could think of was that it was November and we would have to get through the holidays somehow.
Several weeks dragged by and we hadn't heard anything. We got a letter from the eye bank. It said his corneas had been transplanted into two women who had been blind but now had sight again.
A week before Christmas, we got a letter and a pin. It said his kidneys had been successfully transplanted into two gentlemen and his liver had been transplanted into a young woman with two young children who had been very near death.
I cried and cried. It was the best present I could have gotten.
My husband left me with two fabulous children. They were very interested in what was happening. So I wrote to the transplant consortium and got very close to them. I learned a little about the person who had received Bobby's liver. My daughter wanted to write to the recipients and let them know a little about her dad. We checked with the consortium and got their approval.
When we got the response from the young woman who had received Bobby's liver, it was more like a book than a letter. It was one of the warmest, most touching things I have ever read. I put it down and said, "Thank you, God."
We had become active in the Washington Regional Transplant Consortium and after awhile, they put out a brochure with my husband's story. It also had "Gloria's story." I read it and knew that it was "my" Gloria.
A few months later we were at a consortium meeting at a local church and a ray of light was coming through a stained glass window and shining down on a young woman with cornrows. Gloria had told us she wore her hair in cornrows and I just knew that it was her. Later, I introduced myself and we both just fell apart.
It was so powerful. It really became real to me that my husband still walks the earth. He impacted the lives of five people and they impacted the lives of many more. It was definitely the best decision I ever made.
Gloria has been very close to our family ever since. When my daughter was married, it was Gloria who danced with her for the daddy's dance.
Gloria: My story also began in November 1992. I was working at the EPA. My job was demanding and very stressful. When I became ill, I didn't realize it at first because I had never been really sick.
When my liver started to fail, I was just extra tired, not in pain. I didn't consider myself sick. My energy level just kept falling.
I went to my HMO and told them I needed a B12 shot or something. They took blood tests and said they suspected a low-grade Hepatitis A. The doctor said it wasn't a big deal but told me not to go back to work. "Go home and get some rest," he said.
So I went home. The next thing I remember, I woke up 6 to 8 weeks later in the hospital. They told me that when I went home and lay down, as the doctor had told me to do, I went into a coma. Nobody knew what was wrong. Initially, I was taken to the emergency room, then transferred to another hospital.
I wound up at Washington Hospital Center. They said we know she is having liver failure but it's so acute there's nothing we can do. They said I wouldn't live through the night.
A nurse approached my husband and told him they were doing liver transplants at Howard University Hospital and maybe I could go there. Howard was very responsive. They came over and got me and started extensive lab work. They said my liver had completely failed. All my organs had started to shut down and without a transplant by the next morning, I would be dead.
After a brain scan, the doctors said I would probably be a vegetable, even with a transplant. They said it would be a waste of a liver.
"If she's a vegetable I will take the vegetable home," my husband said. The next morning, my family came to the hospital expecting to have the life support turned off because the doctors said I was brain-dead. Then they got a notice of a potential donor. They did another brain scan, then a third one and that time they found minimal activity, enough to proceed. Meanwhile, my children were called in by the hospital chaplain who told them their mother would pass away and would never come home again. There was simply nothing to prepare them for that.
Well, on the 19th they did the transplant. It was touch-and-go. Everything shut down during surgery. I was in total organ failure. My kidneys had to be stimulated and I had a stroke on my right side during the surgery.
So when I woke up 6 to 8 weeks later, I was partly paralyzed and there were tubes everywhere. Now, when all of this started it was November, so I'm thinking about getting out of the hospital and getting my family's Thanksgiving turkey. Then there are all these people telling me I have another liver.
When I fully realized I couldn't move my right side, I became very confused. One of the doctors brought in a blackboard and was telling me all the medicines I would have to take for the rest o my life. I'd never even taken a vitamin up to that time, so it took a while for it all to sink in.
At that point, I realized that if I had someone else's liver, then that meant that someone else had died. So many attitude changed from defiance to guilt, sorrow, confusion. I became very hard to deal with. Ask my husband. He is gray now. He wasn't gray when I went to sleep. He had aged 10 years in a few weeks. My children were afraid to approach me.
Then I said, oh my God someone else's family is going through the same thing, only worse. Their loved one never woke up at all.
So why, I asked, am I still living and someone else is gone? Who would do this for a complete stranger? This plagued me for a long time. I got adjusted to the meds, I had to have physical therapy for the paralysis, and I was in danger of rejection for at least a year. Any infection, I could die. It was just one thing after another.
My life changed 360 degrees, just like that.
I became involved with the Washington Regional Transplant Consortium and was active with them in making people aware of organ and tissue donation. It was the same program Suzie referred to.
I went to a donor appreciation ceremony, but I didn't know "my" family would be there. I had been corresponding with Melissa (the daughter). I remember when WRTC asked my permission to send me Melissa's letter. I thought, why do they need my permission after what they've done for me?
Melissa was very candid. She said she was not in favor of cutting up her daddy and having people take his organs, and I understood that. But if there was some other little girl that maybe her daddy could somehow save from the pain she was feeling, it would be worth it for her.
I cried continuously. I read it over and over. It took me a while to write back because I was just learning to write again. So it took me a while to write that book.
I told her if one little girl could not feel that pain that she was feeling, that one little girl was saved. I have two children. My daughter was a Thanksgiving baby and she was 6 at that time. For the rest of her life, her birthday and Thanksgiving would have been the day that her mother died. It would never be a day of celebration. So I told her that you did do that for some little girl, you saved that little girl.
I felt that Melissa was with me all the time. I knew at the ceremony that the room was full of donor families and I just wanted to be there with them. When I recognized them, the cloud of guilt that I had been feeling was released from me.
Suzie embraced me so and it made me feel that it was OK for me to continue to live. I had felt so bad that she had lost her husband and I was walking around with his liver. But when she gave me her permission to be OK, ever since then I have been.
My pledge to her is that I will always take care of this liver so I can pass it along to somebody else someday. When she asked me to represent Bobby at Melissa's wedding, I was so proud and honored.
When I got there -- to Melissa's wedding -- I can't even tell you what happened. When I'm in the room with the Ecklers I don't ever see anybody else.
Melissa didn't know I was there until it was time for the father-daughter dance and I stepped over to her. I can't tell you what song it was, how long the dance lasted, all I can tell you is I felt like I was on Cloud 9 holding that child to me. When we embraced each other, it made everything OK.
It's not great to be a liver transplant recipient. There's so much to focus on but when I see the Ecklers, all those problems go away. I feel extremely blessed because it has allowed me to know people that, to me, are angels from God.
These people think with their hearts. Their love and acceptance of me is unconditional and I felt that from the moment I met them.
My children now are 18 and 21 and I am so blessed to be here and to have people like Suzie in my life.
Tina Sauerhammer, M.D.
Ms. Sauerhammer, 22, was Miss Wisconsin and was the 2nd runner-up in the Miss America contest.
When I was 7 my father was diagnosed with Wagner's Disease, an autoimmune disorder. Five years ago, he developed renal failure. He was on dialysis three times a week and had no quality of life. It took a financial toll as well. He had to retire at 40.
My father waited for four years for a kidney transplant. After all that waiting, he passed away because no organ became available.
When I first competed for the Miss Wisconsin title, one of the nights my parents were at the competition supporting me, they missed a possible organ donation because he was at the pageant and didn't get the phone call in time.
So I saw this as a way to get the message out. My goal was to become Miss America to give organ donation a national platform. Even though I didn't get the title, I got to share my father's story on national television and many people have told me they have signed up as organ donors as a result.
My father died on his 45th birthday. When I heard Suzanne and Gloria, it really touched my heart. He won't be there for my father-daughter dance but this has been wonderful because I've been able to share his story. Even though he's not here with me I know there are lives out there being saved because of our efforts.
The conference brought together scientists, surgeons, volunteers, academics and researchers ... and also a few organ-donor families and recipients....