Kidney Mama

There’s been a lot of talk about New York’s push to make organ donation the default unless people specifically opt out when they get their driver’s licenses. Is it creepy if the state decides for you that your organs will be donated? Oh, yeah. Would it be great if we got more people off the transplant lists? Oh, yeah. Ethics aside, will presumed consent help anyone? Let’s go with “slightly.”

Most people who die, not surprisingly, are quite ill. They may have lingered with severe illness for some time. Say 2 million people die in the U.S. in a year. Ten thousand to 13,000 have any usable organs. About 38% of Americans are on the list to be organ donors. So assuming that everything is proportionate, with presumed consent, maybe you get another 6,000 to 8,000 donors nationwide.

Most people on transplant lists need kidneys, because it’s easier to keep someone in renal failure alive. So if the kidney list is 80,000-ish, and investigations have shown that there are many more people on dialysis who should be on the list, figure it’s at least double that. With every available, usable cadaver kidney in the country, you’re barely making a dent in the need.

How about instead, we clear the barriers to living kidney donation, educate the public about the low risks, provide a tax break or other closely regulated compensation, and fix this thing? For other organs, provide better education and more options to the blanket “do whatever you want with whatever part of me you want” organ donation process at the DMV. Reach out to motorcycle enthusiasts. (j/k)

Is it good to help a few thousand more people? Yes. Is it OK for the government to decide that I will do that upon my death? No. Government, if you are listening, please reread Roe v. Wade. I get to decide what happens with my body. That’s the deal. I’m not willing to say we should forgo that right when other approaches could solve the supposed “organ shortage.”

The one part of the New York bill I like is the part that would no longer allow families to override someone’s wish to be an organ donor. It should be the person’s decision, no one else’s.

That’s my speech. See what some of the experts say in The New York Times (read all the way to the end cuz there’s good stuff in there), and don’t miss Karen De Coster‘s posts on the topic (1 2 3).

OK, so Dolly Carew found the lovely and generous Bob Randall on MatchingDonors.com. Bob agreed to donate one of his kidneys to Dolly, and all was well.

Then the hospital tried to persuade Bob to do a kidney swap instead (more patients get kidneys, but he already knew Dolly). He didn’t want to do it, and the hospital canceled the transplant 8 days before it was to have taken place, citing ethical reasons.

It’s never unethical to save someone’s life, but somehow Albert Einstein Medical Center felt that it was. The supposed ethical dilemmas of whether to allow a living donor to help a stranger baffle me. Here’s what the Philadelphia Inquirer has to say.

[A]fter months of preparation and testing at Albert Einstein Medical Center, the hospital canceled the surgery last week, citing, among other reasons, the friendship that has developed among Carew, her 9-year-old daughter and the donor, Bob Randall.

“Yes, we bonded,” Carew said. “Isn’t that normal? He’s giving me his kidney!”

Randall said that the hospital made it clear that it still wants him to donate his kidney – just not to the woman he wants to give it to. …

Carew was not given a reason for the cancellation.

Randall, who had been planning to drive the 11 hours to Philadelphia with his wife, was stunned. The only explanation he received on the phone was “ethical reasons.”

He later received a letter from the hospital that said the transplant might have put him in a “compromising position” the hospital did not explain. The letter also said that having met Dolly over the Internet left Bob “particularly vulnerable,” but didn’t explain what he was particularly vulnerable to.

Bob and Dolly are going to find somewhere that will do a transplant for them, but how the more ethical choice is to let Dolly continue to be on dialysis and continue to decline medically is beyond me. If there was some weird vibe between Bob and Dolly, so what?

Someone’s queasiness about people wanting to know the person they donate a kidney to or choose their recipient is not a good enough reason to cancel a surgery.

There is still an official list. People can still donate a kidney to the next person on the list anonymously. But call me selfish. When I decided to have a surgeon open my body and take out an organ and give it to someone, I wanted to know who that person was first. It was a huge decision, and it was my right to decide where a part of my body went.

The Inquirer article is interesting. Also interesting is this look at the medical establishment’s control issues in Your Organs Belong to the State from Before It’s News.

Update: The Philadelphia Business Journal reports that the hospital is saying that Bob lied about something during his transplant evaluation. Bob says, um, what? Interesting angle, but why would he be OK to donate to someone else and not to Dolly? Did he lie about his blood type?

When I was getting tested to donate a kidney to a stranger, some of the medical people I met were really amazed that I would do it, and I remember wondering why they did not. How could they see the suffering of people in renal failure and not donate one of their kidneys?

I can’t speak for anyone but myself, but now I kind of wonder if it isn’t actually seeing all that suffering that stops them from donating. They see what can happen, and though the rational mind knows that donating a kidney does not put one at risk for renal failure, the realities are too visceral. They give and help and care in other ways instead.

But then along comes EMT Tracy Franklin, who decided to donate a kidney to his on-again, off-again co-worker Mary Lynne Massey, a nurse.

“Tracy came to me and said he wanted to be tested,” said Massey. “I couldn’t believe it. He made me give him the number, and he went from there. He called me on December 23rd to tell me he was a match.”

Maybe it seems like an obvious thing for a medical person to do, but I’m telling you, it’s more impressive than when the rest of us donate. Their surgeries are on April 14. Best wishes!

If you need a kidney, use every possibility available to you. These include:

• Everyone you have ever known or are related to.
• Social networking sites
• The official kidney list through UNOS
• Kidney matching websites
• Craiglist

Ah, Craigslist. Karaoke machines, Karmann Ghias and kidneys. Lois Wilson thought she’d start on Craigslist when her husband, Dave, needed a kidney transplant. Thirty people saw the ad and offered a kidney. Lois said a complete stranger ended up being a great kidney transplant match for Dave.

“I just think he’s the most wonderful man,” she said. “He’s my hero, and it’s too bad in a way that he wants to remain anonymous.”

Yeah, it’s not like people are going to bug him for his other kidney. But anyway. The rest of this article is a lot of grousing about how asking people to help you find a kidney disrupts the official waiting list. It’s unfair to the people who wait patiently in line on that list, blah blah blah.

OK, here’s the thing about that: First of all, if you need a kidney, find one by any means necessary. Most people on the official list die waiting. If you get your happy bottom off the waiting list, the patient people in line get their kidney sooner, because the person you rustled up was probably not going to walk over and donate a kidney to the next person on the official list, anyway.

Every life saved is a blessing. Be proactive. Just ask Lois Wilson.

Oh, outstanding news! California is establishing the California Living Donor Registry.

Registration will include opportunities for paired donations (I donate to your friend; you donate to mine.), non-directed donation to a stranger and directed donation to a particular person.

“Organ donation is one of the kindest, most generous and powerful actions that each and every one of us can take. With thousands of people in California and throughout the nation currently waiting for a transplant, this legislation represents a new and important resource to increase donor rates,” [Governor Arnold] Schwarzenegger said via a news release. “I am excited to partner with the legislature to implement this life-saving legislation and make California a leader in organ donations.”

This almost makes up for Prop. 8. OK, not really.

Sharp Memorial Hospital cleared Kay Wolff to be a living kidney donor to Zeny Pruna.

“It’s a little extreme to give an organ,” Wolff admits, “but I felt extremely motivated to do it. I just felt this is a way to leave a legacy, and to really help someone in an important way. …

“Some people give money, and some people give their time,” Wolff points out, “but I thought this is something that I thought was significant and important, and I think it’s a time to think about donating an organ.”

Zeny’s very grateful.

“When I wake up, they say that the kidney is working already,” Pruna recalls. “That’s a miracle for me, also. I’m very thankful.”

I’m thankful, too. The hospital has been turning away “numerous” potential kidney donors for five years; Kay is the first to be approved to donate to a stranger. (Is there a wrong reason to save someone’s life?)

We know that living kidney donors live longer than the average person, but they’re also far healthier than the average person. A new study published in the AMA Journal examines health and longevity for more than 80,000 living kidney donors, comparing them to equally healthy people.

Surgery is always a risk, of course, and the study found that once donors get past the initial 90 days after the procedure, they’re golden. Living with one kidney, as we’ve thought, is no big deal. As with any surgery (who knew?), living kidney donation is more of a risk for men, people of African descent and people with high blood pressure. But overall …

“Donating a kidney is safe,” said leading author Dr. Dorry Segev, a transplant surgeon at Johns Hopkins University School of Medicine in Baltimore.

“Live donors start healthy and it’s the highest priority of the surgeon and the entire transplant community to make sure they stay healthy. This study says we have succeeded. While there are never any guarantees with surgery, donating a kidney is safer than undergoing almost any other operation.”

Bottom line, once the surgery is past, living kidney donors live as long as equally healthy people who have two kidneys.

“Whatever happens when people donate kidneys, on average, it doesn’t affect the rest of their lives — and that has never been shown before in a study of this size and scope,” said Segev.

Norman Castellanos thought it didn’t look good.

“Four thousand people a year die waiting for transplants. I’m sure glad I was wrong. I feel great already. It’s like a miracle.”

Norman’s wife, Amabilia Castellenos had been willing to donate her kidney, but wasn’t a match for Norman. Luckily, their hospital decided to start doing chain-based kidney swaps. Amabilia donated her kidney to a stranger, and another kidney patient’s loved one or friend donated to her.

“When I heard if I donate kidney to a stranger, my husband would get one, I want to do,” the immigrant from Guatemala said in halting English as she held her husband’s hand. “This way, I get to help more people.”

Believe it or not, some hospitals will not do swaps because they think it might violate the federal prohibition against “meaningful compensation” for organ donation. If you’re waiting for a transplant, and your hospital won’t consider a swap, find another hospital.

The living donor chain that saved Norman’s life involved 12 transplants in seven hospitals over a period of months. His Las Vegas hospital got involved because of Cecile Aguayo, who recently became the UMC kidney transplant coordinator.

Cecile is my hero, as is Amabilia, of course, because she is in the process of calling up to non-matching, willing donors on UMC’s patient list to tell them about donor chains and save their loved ones’ lives.

“It has the potential of saving so many more lives of people who need transplants,” she said recently as she sat in her office. “We have hundreds of Nevadans waiting for transplants.”

The tear-jerker comes from the Castellanos’ daughter, Daisy.

“I was worried when my parents were both being operated on the same day, but everything turned out so great,” she said. “I knew my mother loved my father, but now I know she loves him more than I ever knew. And she did it by giving a stranger hope, too. Like the doctor said, she’s a hero.”

Amy Maliborski happened to check her church bulletin online while she was away and read about Annie Laib’s need for a kidney. Her reaction?

“I could do that. … I was just really at peace with it,” she said. “I thought, when else in your life do you have the opportunity to make such a big difference?”

So true. And so Amy decided to become a living kidney donor for a stranger. After surgery, they met and discovered that their moms were former co-workers. Which is interesting and all, but the main thing is that the surgery went really well.

“Your kidney is so energetic,” Annie told Amy. “I haven’t felt this good in years.”

But as is usually the case, family members were apprehensive about Amy’s decision to donate. Her husband didn’t want her to do it but said he couldn’t say no in the face of her brave spirit. Her mom, Mary Lou Blount, was also not so happy.

“I was very concerned for her,” Blount said. “I knew she had to go through all this fear and courage at the same time, which I think is a very difficult thing to do.”

(It’s such a different experience when you are the person taking the risk than when you are the family member or friend. My friends had a really hard time, and frankly, I told my family afterward because I didn’t want them to worry. The risks of being a living kidney donor are relatively low, but of course any surgery is a risk.)

Annie’s life with PKD, which also affected her twin before her twin’s kidney transplant from a cousin, has turned around.

“It’s gone,” Annie said with a smile. “It’s too wonderful for words. She saved my life.”

Christopher Hern decided to donate one of his kidneys to a stranger who was very much in need of a kidney transplant. Cassey Sanger was in such need of a transplant that the usual months of tests and screening were compressed into a couple of weeks.

“People ask me all the time, ‘Why?’ and I say, ‘Why not?’ ” Hern said. “It doesn’t cross my mind why. I know that sounds really casual, ‘Why not?’ But I don’t think twice about it.”

Exactly. There are a lot of us out there who, upon understanding the risks and benefits of being a living kidney donor, say, “Why not?” I’m so glad that there are websites (like MatchingDonors.com, where Christian found Cassey) that are spreading the word about being a living kidney donor, since it seems that transplant centers do not feel comfortable encouraging living donation.

Back to Cassey and Christian, Cassey wrote a note to Christian’s mom, Beth Hern, that has me all teary.

“As a mother you know how special the gift of life is,” Sanger wrote.

“To date I have spent about 4,680 hours attached to a machine that can only prolong my life. I have had 19 different operations and countless days of not feeling well enough to sit up in bed.

“Christian is giving me that chance. … Thank you for raising such an amazing man. Your son is saving my life.”

Indeed.