How long is that list?

From today's Columbus Dispatch:

More than 98,000 names are on the list of people in the United States waiting for an organ transplant. But according to a recent Washington Post story, a third of those are inactive: They are ineligible to receive an organ.

Critics say the list is deceptive and makes the problem seem worse than it is. They have a point. The numbers are used by policymakers who decide donation rules and ways to increase donations, by potential donors to decide whether to donate and by potential recipients trying to gauge their chances of getting a transplant.

Providing an accurate list hardly would change the fact that the need for organ donations is huge. Subtracting the inactive patients leaves about 65,000 people on the list. And last year, nearly 7,000 Americans died waiting for a transplant. Obviously, the need is urgent.

The United Network for Organ Sharing, which runs the transplant system, says many of the inactive patients have encountered complications that seem likely to be ironed out, and they might be restored to eligibility.

Still, keeping inactive names on a list that gets so much publicity could cause people to question the integrity of the system. If they're fudging this, what else are they fudging?

The people who run the system need to remember that honesty is the best policy, along with accuracy and accountability.



From the WaPo:

A Survivor of the Waiting List

Wednesday, March 26, 2008; Page A18

The most important point in the March 22 front-page story "A Third of Patients on Transplant List Are Not Eligible" was this statement by Robert Higgins, president-elect of the United Network of Organ Sharing: "Whether it's 75,000 or 100,000, there are still far more people who need transplants than can get them. None of this changes the fact that there is a significant number of people who die waiting."

It nearly happened to me. On Nov. 27, 1990, I was placed on the waiting list for a heart transplant at George Washington University Medical Center. After a few months, my surgeon told my wife that "even if a heart became available today, he is too sick now for the operation." Fortunately, my health improved, and I was able to withstand the operation on March 31, 1991.

Readers of the article should understand that organ transplantation works. I know. I have had my transplanted heart for 17 years.

DAVID HOLLAR


So, some of my notes:

--I was "inactive" for a weekend once--when I went away to visit my grandparents in Pittsburgh for Memorial Day. It was my grandfather's 80th birthday, and I knew that it would probably be the last time I saw them before I had surgery. Even then, I knew things weren't going well for me. So, in order to enjoy the weekend, the clinic moved me to "inactive." That changed the day I got back.
--This seems to be a problem with mostly kidneys, although I know it can happen with other organs, too. Sometimes you're listed because, like me, you might be OK now, but you can get very sick, very fast. When I was in college I went from dancing with my fiance at a semi-formal to being in the PICU, barely alive, in about four days. My doctors were always concerned that that could happen again, and if it did, they wanted me to be in the position to receive a transplant.

I don't think this should give people cause to worry, since, like the Dispatch editorial says, the list is still huge. 19 People die every day waiting for organs they don't get. The need is still tremendous.

Interesting article

My comments in bold

When a baby is destined to die (what baby isn't?)
Perinatal hospices support families with a terminal prenatal diagnosis
By Linda Dahlstrom
MSNBC.com Health editor
MSNBC
updated 8:24 a.m. ET, Mon., March. 24, 2008

Jeanne Deibert knew as soon as she saw the ultrasound.

It didn’t matter that the doctor told her that what looked on the screen like pockets in her son’s brain would likely disappear as he got closer to birth. That things were probably fine. That she shouldn’t worry too much about her baby.

She was his mother. And she felt certain that something was wrong.

As her pregnancy progressed throughout the winter of 2005, other tests raised more red flags until finally the phone rang one afternoon as she stood in the yard of her Seattle home. On the other end was a geneticist, confirming the results of her amniocentesis: the baby had Trisomy 18.

The chromosomal abnormality, which causes heart, kidney and severe mental disabilities, is usually fatal. It occurs in about 1 in 6,000 live births, but many babies who have it die before they are born and those who live often only survive a few days. Less than 10 percent live one year or more.

As Jeanne and her husband, Steve, both Catholics, talked with doctors, they were always clear that they were going to continue the pregnancy. It was against their faith to do otherwise. And they were just as deliberate in planning to parent their son, who they named Robbie, the best way they could, for as long as they could.

As the number of pregnant women being routinely screened has risen, so have dire diagnoses before birth. Only 15 years ago, prenatal screenings could detect less than a dozen conditions, while now it's possible to test for hundreds, ranging from mild forms of hearing loss to deadly Duchenne Muscular Dystrophy.

But the paradox of modern medicine is that knowing doesn’t always mean the outcome will be better. Sometimes you can just see death coming from a long way off.

“The ability to diagnose these problems has absolutely raced ahead of the ability to care for these families,” says Amy Kuebelbeck, whose book “Waiting with Gabriel” chronicles the life and death of her son, who was diagnosed prenatally with a deadly heart defect in 1999.

Two choices, both heartbreaking
In response to the growing number of families struggling with wrenching choices, about 55 perinatal hospice programs have sprung up around the United States in the last decade, says Kuebelbeck, who tracks them on her Web site www.perinatalhospice.org. The programs are designed to provide medical and emotional support for families with a terminal prenatal diagnosis who decide to continue the pregnancy.

“Before a baby would pass away and the family may not know what’s going on. Now potentially someone could have an abnormal screening and diagnosis at 12 weeks and have this whole pregnancy stretch ahead,” says Cheri Shoonveld, a genetic counselor for Fairview Health Services in Minnesota and a spokesperson for the National Society of Genetic Counselors. “Families are having to make a lot more decisions and have a lot more time to think about the impact.”

Studies don't specifically track how many families in the United States choose to continue the pregnancy after receiving a terminal prenatal diagnosis, but in Shoonveld's experience only between 10 percent and 20 percent of families go on with the pregnancy after hearing the devastating news.

However, a small British study in 2007 found that about 40 percent of families with a terminal prenatal diagnosis decided to continue the pregnancy when perinatal hospice was offered.

Both options — to terminate or continue the pregnancy — are heartbreaking.

“It’s the worst news that anyone could get — that your child is going to die,” says Schoonveld. “These horrible feelings aren’t going to go away with a termination. But the flip side is that they’re not going to go away after a baby is born either. ... For many families it's their first real parenting decision.”

Many have family and friends who are mystified as to why a couple would continue a pregnancy knowing their child will die. Loved ones often fear that by continuing on, the parents are simply delaying their grief or torturing themselves. What will they say to strangers who casually ask if the nursery is ready? And what if bringing the baby into this world causes the child suffering? (Um, ALL Children suffer. Every person suffers. This is not unique.)

But for some, the pregnancy feels precious because it may be the only time they’ll get to be with that child, says Schoonveld. “I think most people who have continued want to experience as much time with the baby as possible and want to hopefully meet the baby.”

Other families may have religious reasons that guide their choice. Sometimes parents may hold out a hope that somehow the terminal diagnosis was wrong. And others just don’t want to be the one who decides when their baby dies.

“Don’t assume we’re Luddites or religious fanatics,” Kuebelbeck says. “Don’t assume we’re saints. We’re just parents doing the best we can.”

Meeting Robbie
As Jeanne’s pregnancy continued, she and Steve created a specialized birth plan. It had Robbie’s name at the top and the funeral home’s phone number at the bottom. In the middle they detailed three scenarios: what to do if Robbie was born breathing, what to do if he was not breathing and what to do if his heart wasn’t working. No extreme measures, they decided. And in each scenario, they wanted him in their arms as soon as possible.

“Robbie’s life will be lived with love and honor,” the birth plan stated. (I love that.)

The Deiberts worked with Stepping Stones Pediatric Program to help fulfill that goal. The Seattle perinatal hospice supports families during pregnancy and can help make it possible to bring the baby home after birth if that's what the parents want, says Maureen Horgan, a social worker and the program's coordinator.

When the child dies, staff can help parents make their memories tangible by cutting a lock of their baby's hair or making hand impressions that parents can run their own fingers over during all the years to come. Horgan also knows the kind of practical, crucial details you never want to have to learn — such as how bathing in warm water can help stave off rigor mortis, buying precious time for parents who want to hold their child’s body.

Robbie was barely breathing when he was born on May 18, 2005 at Seattle’s Northwest Hospital. Doctors worked on him for minutes that seemed to stretch on into forever before finally deciding to give him to his parents to hold as he died.

Jeanne, then 40, exhausted from a long labor, drank in the feel of her son in her arms, memorizing every detail. She took in his tiny hands, wide-set eyes and his perfectly shaped ears that she knew probably couldn’t hear.

Then Steve, 43, cradled him and started introducing his youngest son to the crowd of friends and family who had gathered in their hospital room.

“It was clear I was taking him around to say hello and goodbye,” he remembers.

Nearly a half hour after his birth, when Robbie’s breathing was still imperceptible, Steve bent to show his son to Jeanne’s 92-year-old great aunt Veva Conley and she impulsively reached out to warm Robbie’s foot, turned purple from lack of oxygen. In that instant, everything changed.

Robbie, presumably startled, took a deep breath. And another. And another. Soon his breathing was normal and his color started to improve. The next day, Stepping Stones helped them arrange to take him home to their light-filled house to live with his 2-year-old big brother, Stevie, for as long as his body would last.

“My big hope was that his life, however long it was going to be, would be full and not painful,” says Steve. “I would have gladly accepted a miracle, but I didn’t have hopes for him to go to college. We thought, ‘What’s the most we can do for him?’”

‘Things could have been done differently’
The precious hours the Deiberts spent with Robbie in their arms immediately after his birth would have been unheard of in most hospitals only a few decades ago. Doctors and nurses often wouldn’t let parents see their child if they knew the baby was going to die or was stillborn, believing it would be less searing for parents to let go if they’d never said hello.


In 1982, Annette Klein’s daughter was born dead. The staff allowed her to hold Courtney for a few minutes, unusual for the time, but then a doctor brusquely told her, “Well, this has got to end sometime. It’s going to be hard. We may as well just get it over with now.”

But even that brief time was everything. “When I saw her I was filled with this immense mother’s love. … And holding her after her death meant for me that that denial was gone.”


As a nurse herself, she thought about all the other families who didn’t get even the few precious moments she’d had — and wondered what it would have been like if she’d had more time with her daughter.

“I look back and think of all the things that could have been done differently. That was really the impetus,” she says.

Today, Klein, a nurse who specializes in parent education and support at the Birth Center at United Hospital in Minnesota, estimates she’s worked with about 200 families with a terminal prenatal diagnosis, providing one-on-one birthing classes so grieving parents don’t have to sit surrounded by giddy mothers- and fathers-to be. She also offers them their own private tours of the birthing wing and encourages them to start parenting their child in utero since that might be the only time they have with their baby.

“I tell them, ‘You are already a mother and have an amazing opportunity to love them, parent them, sing them their little lullabies,’” she says.


‘Born perfect, except for his heart’
Not all medical caregivers are supportive. Schoonveld, the genetic counselor, has a friend who was told by her doctor that the pregnancy would be so stressful for her that she should terminate. When she decided to continue her pregnancy, “the response she got was, well you might as well not even show up for your appointments because this baby isn’t going to live.” Maureen Horgan, of Stepping Stones, has talked with women whose doctors didn’t see the point in weighing them at their prenatal checkups.

Kuebelbeck hopes to help change that kind of reaction. She is often asked to speak at medical conferences around the United States about perinatal hospice, encouraging doctors and geneticists to support those families who do choose to continue and sharing the story of her son, Gabriel.

Three and a half months before he was born, Kuebelbeck found out that Gabriel had an incurable heart condition and would die soon after he was born. She and her husband decided to fill their pregnancy with things they once hoped to introduce Gabriel to in the years following his birth.

“People assumed the time of waiting was torture,” she says. “But it wasn’t. We had a lot of beauty in it. We had to change our thinking: We weren’t going to get to keep him, but this was our time with him. We think of it as our summer with Gabriel. We took him fishing. We had a family portrait taken. We took him to a baseball game. We picked out his casket. All of those were ways of parenting Gabriel.”

He was born on Aug. 8, 1999 and lived for two and a half hours. During his short life, his sisters and extended family met him and held him and Kuebelbeck’s husband baptized Gabriel himself when it was clear the priest wouldn’t arrive before he died. He was beautiful, Kuebelbeck remembers. “Born perfect, except for his heart,” read the announcement she sent out about Gabriel’s birth and death.

Some have wondered why she’d put herself through a pregnancy and birth when she knew she’d go home with empty arms. “It isn’t all for nothing,” she says. “You can still love that baby, protect that baby and give that baby a peaceful goodbye. That’s not nothing.”

Living life fast
Like Kuebelbeck, the Deiberts wanted to make whatever time Robbie had as rich and loving as possible.

In the days that followed after they went home from the hospital, Steve and Jeanne took him to the beach, to church and to visit friends. When he turned 1 week old, they celebrated with a brownie and candle, knowing he wouldn’t be alive to see his first birthday.

“We had the sense we needed to live life fast,” says Jeanne.

When the family wanted to take Robbie on a car trip across the state to visit relatives, Stepping Stones helped put them in touch with a hospice in another city in case Robbie died on the way.

Jeanne wasn’t sure exactly how much Robbie was aware of. A nurse told her he was probably deaf. She doesn't know how much he could see and wonders about his brain function. But her goals for his life were simple.

“I wanted people to experience him,” she says. “And I think he was experiencing being held.”

Jeanne and Steve traded off caring for Robbie in three-hour shifts around the clock. Both of them were terrified each time he dislodged the feeding tube from his nose; if they reinserted it incorrectly it could go into his lungs, which would kill him.

A nurse from Stepping Stones came over nearly every day to see the family and check on Robbie.

“They’d say, ‘Oh, he looks beautiful. You’re doing great. He seems happy.’ It was so reassuring that we were doing the right thing. It helped us to relax because every day we were wondering ‘Is this the day?’ ‘Is this the moment?’ And we knew that they were going to come (when he died). We weren’t going to be alone,” Jeanne says.

At night, Jeanne slept with Robbie cuddled against her chest. She’d heard about other parents of terminally ill children who woke in the morning to find their child dead in the bassinet and she wanted to make sure that didn’t happen. She needed to know the moment her child died, to be with him and see it through.

‘Hold on tight … and let go’
At about 8:15 a.m. on June 16, 2005, Jeanne was in the kitchen with her mother making breakfast. Nestled into a carrier against her chest, Robbie’s breathing began to change. He took a breath … and then a long pause. Then he took another, followed by stillness. Then at last another breath.

Jeanne ran into the bedroom to wake Steve. As she started to describe his breathing pattern, they realized Robbie wasn’t breathing. Jeanne laid him down on the bed beside Steve. “No, no, not yet,” she pleaded over and over as she rubbed Robbie’s cheeks, hoping to prompt him to inhale.

He never took another breath. He had lived for 29 days.

“I think he just turned off,” remembers Steve.

The Deiberts called Stepping Stones and a nurse came over to help prepare Robbie’s body and notify the funeral home.

“It was one of those things you don’t learn in normal parenting manuals — who do you call when your baby has died?” says Jeanne.

Soon friends, family and their priest were filling their home, holding Robbie’s body and loving him, just as they had the day he was born.

“The whole experience was very serene,” she says. “I don’t think we put him down once during that time.”

That morning as Jeanne and Steve sat on the sofa cradling Robbie’s body, their son Stevie walked over and placed his beloved stuffed dog gently on Robbie’s chest, a big brother’s last gift.


The night before Robbie’s funeral, Jeanne hand-lined the small wooden casket a friend had made. While she worked, she envisioned parallel worlds — the real one where Robbie died, but also a glorious imagined one of what it would be like if he’d lived.

As she carved padding from the mattress that had once lined Robbie’s crib and covered it with soft fabric for his coffin, she pretended she was making a Halloween costume for him. While deciding the details of his service, she imagined what it would have been like to plan instead for his wedding years down the road.


Today, the Deiberts first son, Stevie, is now almost 5 and loves trains and puzzles. Sixteen months ago, they had another baby, a little girl named Adele. Jeanne stays home with her kids, and the family still lives in the house where Robbie spent his life. His photos adorn table tops along with pictures of his brother and sister. Jeanne is tenderly keeping mementos from his life, like a hand-made blanket, Robbie's birth announcement and the outfit he wore home from the hospital, so Stevie and Adele can have them when they're older. Robbie’s footprints, forever tiny, hang on the wall.

"Robbie taught us to love what we have, when we have it, because time is measured," Steve said in the eulogy he delivered at his son's funeral. "Robbie has taught us to hold on tight — and to let go."

© 2008 MSNBC Interactive
URL: http://www.msnbc.msn.com/id/23682263/

Cruisin'

A recent Ohio flap has been about the number of handicapped parking placards that are distributed around the state. Complaining about handicapped parking is isn't new--it tends to surface around Thanksgiving and Christmas, when people see (or think they see--an important distinction) the handicapped spots being abused by people who do not "deserve" a placard.

Now the argument has turned from this to deciding that the state distributes too many handicapped placards, i.e., multiple ones for a single person (if multiple people have to drive that person).

Handicapped parking complaints raise my hackles awfully quick. Pre-transplant, I got a placard. I was commuting to school, and Capital's parking situation was (and is) abhorrent. Without that placard I would have been parking in the hinterlands, lugging about 20 pounds of books on my back to my classes. It would not have flown. And I still have the placard. It's good until October of this year (in Ohio they're four year things). To look at me, both pre- and post-transplant, you would not think I "needed" a spot. I'd be one of those young people that the letters to the editor complain about. Well, I wasn't. I had 23% lung function. I needed that spot, damn it. Even after the transplant, there are times when I've been in the hospital and during the recovery period, I've needed to use it.

I hate the looks I got (and still get, if I use it), from people. A note to the general public: STOP IT. The next time I get one of those looks, I swear I'm going to show that person the surgery scars.

A person who is young can very easily have a heart or lung condition that requires the placard. You don't need to be in a wheelchair or have a broken leg, or whatever. I would even say that they should get FEWER looks, because I never had a wheelchair, so it was just me and my beaten-up lungs trudging toward an entrance. It wasn't like I could push myself there.

I don't know where the debate is currently headed, and I know that there are people who misuse the placards. But can we please get over the idea that only people in wheelchairs or on crutches need these placards? It's outdated and untrue.

Responsibility much?

This story from USA Today got me thinking.
I'm diabetic, as we know, a development post-transplant due to lovely transplant drugs. Woohoo!No, it is not the Biggest Thrill in my life to poke myself with needles, but it doesn't hurt, it's not The End of the World, and I can Deal With It.
But then you've got people like the ones in this article, and I start thinking, 'how about a little personal responsibility, here?'
If you're a kid (or an adult) and you've got Type 1 diabetes, there's not a whole lot you can do to prevent it. It just happens. Type II, while it may just "happen", also is dependent on lifestyle factors. And I will admit, that before tx, I was not really into exercise. I knew it was beneficial. I knew it would help my PFTs, etc. But I had such a hard time keeping on weight that the idea of exercising, which would cause me to lose weight (since I never really had an appetite, ever), didn't make sense to me. So I fought it. Yes, bad patient Emily.
But when the mom says:

Zarate encourages Richard to take care of himself, but "trying to get him to eat vegetables takes an act of God and Congress."

Nor is he much for sports. "He's a video-game nut. I say, 'You want to sign up for basketball?' He'll say no." Her sister tries to get him to walk around the apartment building, "and he complains the whole time."

I want to scream, DON'T BUY THEM! You are the parent! You have the control of the money here! If the kid can't play them, then he has no choice but to walk or go outside or whatever. I guess he could just lump around and whine, but that would get old, real fast, wouldn't it? And as for food--don't buy junk! If you only buy healthy stuff, he'll HAVE TO EAT IT, or go hungry, and no kid will go hungry. Come on!

Whatever happened to taking responsibility for our health choices? Huh?

More ME!

OK you're sick of it, I know, but...
In case you want to read my letter for the transplant brochure, it is here
There is also video of moi...although I'm not sure what the video is. I think it's my bit for the telethon in'06.

Yay!

From WebMd:

Lung Transplant Survival Improving
More Than 63% Survive for at Least 3 Years, Experts Report
By Miranda Hitti
WebMD Medical NewsReviewed by Brunilda Nazario, MDMarch 15, 2006 - Good news for lung transplant patients. The odds of survival for this risky surgery are getting better.

A report in the American Journal of Respiratory and Critical Care Medicine details the improvement. The report shows that nearly 56% of people who got lung transplants in 1988-1994 survived for at least three years, compared with 63% who got lung transplants from 2000 to 2003.

Data came from the 2005 Official Report of the Registry of the International Society for Heart and Lung Transplantation. The researchers were Marc Estenne, MD, of Erasme University Hospital in Brussels, Belgium, and Robert Kotloff, MD, of the University of Pennsylvania.

Latest Lung Transplant Numbers
The report details findings for 931 bilateral lung transplants (in which both lungs are replaced), 772 single-lung transplants, and 74 heart-lung transplants in 2003.

Though survival has improved, lung transplantation still carries serious risks including infections and rejection of the transplant by the patient's immune system.

Lung transplants are usually done as a last resort after other medical treatments fail for diseases such as emphysema, pulmonary fibrosis, and cystic fibrosis. Afterward, transplant patients must take medicines for life to reduce the chances that their body will reject the transplant.

Expanding the pool of organ donors is a key priority, note Estenne and Kotloff. They also call for new ways to predict and avoid complications from lung transplants.

Long Waiting List
In the U.S. today, there are 3,099 people waiting for lung transplants and 148 awaiting heart-lung transplants. Those figures come from the Organ Procurement and Transplantation Network (OPTN). The United Network for Organ Sharing runs OPTN under contract with the U.S. Department of Health and Human Services.

In 2005, nearly 3,500 people in the U.S. were on lung transplant waiting lists and 1,000 got lung transplants, according to the American Lung Association.

Considering becoming an organ donor? The U.S. Department of Health and Human Services offers this advice:

Indicate your intent to be an organ and tissue donor on your driver's license.
Carry an organ donor card.
Most important, discuss your decision with family members and loved ones. Your family may be asked to sign a consent form in order for your donation to occur.

From Washington State--presumed consent law

SEATTLE -- If you are one of the 3 million drivers who has an organ donation heart on your license, this [a]ffects you. (me: Grammatical errors in newspapers!!! ARGH!)

Following an exclusive KIRO Team 7 Investigation into how you could get tricked into donating your body to science -- rather than for life-saving transplant -- the state is making changes.

Lawmakers have already drafted a new Anatomical Gift Act. They hope to clarify exactly when researchers can legally get a hold of your corpse for purposes you didn't envision when you signed up as an organ donor.

While lawmakers debate the details, the Department of Licensing has already acted.

Driver's license offices sign up 98 percent of this state's organ transplant donors. It's always been as easy as clicking a computer key.

Too easy, says Nancy Adams.

KIRO Team 7 Investigators uncovered: The King County Medical Examiner's Office harvested body parts from her son, Jesse, without her permission, then traded them for money to a private research lab.

"His entire brain was taken, along with portions of his liver, his pituitary gland, his spleen, blood, spinal cord -- all taken without his permission," Adams said.

Adams sued over the organ-grab, but lost -- at least for now. A judge said coroners can take whatever parts they desire for "research purposes" as long as the deceased has an organ donor heart on their drivers license.

After we told DOL about the outcome of the case, that agency made immediate changes so donors were not confused about what "donation" means.

"We want to make sure people understand that there are other possible outcomes to signing up with us other than a life-saving transplant," said Brad Benfield of the Department of Licensing.

DOL offices will soon be handing out a new, clear concise two-page flier to drivers. It clearly states donors are agreeing to "research projects" -- as well as life-saving organ transplants.

Organ donor Grace Sutherland thinks that's a great idea.

"Most people take it for granted that if they are going to donate their organs, it's to someone living. I think that it's an absolute must that it be explained -- explained to them," Sutherland said.

DOL has also started waiving the $10 fee for removing the heart from your license in case you don't want to be used for research.

Folks can still restrict their organ donation to just live-transplants, but must contact LifeCenter Northwest, the holder of the donor list.

"It's in both of our agencies best interests for people to completely understand what they are signing up for."

I have read the new organ donor legislation that will be put forth in the coming session. It more clearly lays out who gets to make decisions about where your donated body or organs go. The changes also make our state law look a lot more like the federal law.

Yup, sounds like common sense to me. I certainly wouldn't want organs I had donated to be used for scientific purposes unless I said so. Glad they're working this out over there.

GRRR--From the Corner

We've discussed this here before, but this is just RIDICULOUS...

A manny is the cute new term for a male nanny. Mannies are newly popular among the well-staffed set in New York, Greenwich, Ct and similar locales. The idea is that your kids— sons especially — get a little more sports and rough-housing with the babysitting and less of the mollycoddling and all female environments too common in homes where dad works till all hours.

I was wondering if we should call the government of Michael Bloomberg, here in NYC, a "manny state" instead of the clichéd "nanny state." But, considering his latest initiative, the answer must be no. In fact, we are regressing to the "baby nurse" state. Having banned smoking and transfats from restaurants, the mayor is now focused on the eating habits of those too young to patronize the city's eateries. Specifically, as of yesterday, the mayor has begun a major push to get new mothers to breast feed their infants. Apparently only a quarter of NYC moms choose to do so at the moment, and he wants to triple that number in a few years. He is starting by having city-owned hospitals deny new mothers formula.

Let's stipulate that breastfeeding is healthier, more nutritious and cheaper than formula feeding; it may even have a marginal positive effect on IQ. (Nursing does require time and knowledge not universally available to execute properly— which is why it is largely the preference of better-educated women.) Just as forgoing transfats and smoking are objectively healthier choices — and yet is not the state's responsibility to make.

Still, this is a new, shocking level of intrusiveness into what should be an entirely personal decision. In fact, this is far more egregious than either of the previous policies — which apply to what are already regulated commercial establishments. How to feed one's own infant is about as intimate and personal a decision as families make.

So why is he doing it? Is it meant to compensate for his failure to pass his traffic congestion-pricing plan? Or his failure to make significant improvements in educating the city's public school children? Is this meant to give him a competitive advantage in his hinted-at presidential campaign? Is the never before heard of "breastfeeding issue" an instance where both the GOP and the Democratic party have failed to address a critical social problem, and the unique Bloomberg approach is required? Is it a midsummer joke? A parody of a conservative take on ultra-liberal, statist politics? Is he trying to out-feminine Hillary and John Edwards? Is it to take attention away from the New York Times revelation that his vaunted subway rides to work begin with a chauffeured SUV trip to an express stop?

What about those of us that CANNOT breastfeed? Huh? What are we supposed to do, Mayor Bloomberg? I guess the answer is move out of NYC--pronto.

The market and organ donation

I've posted a few things here before re: organ donation and ways people have come up with to reduce the shortage. Most of them involve paying people for their organs, or having organizations like Lifesavers, where only people who are organ donors them selves can receive organs.

One of the most recent articles I've read was in the Dispatch earlier this week. I'm going to have some of the author's comments here, and then my responses (he's in italic):

How did we arrive at this unfortunate situation? As is so often the case, our supposed servants in Washington are at fault. Would-be donors are not supplying as many kidneys as patients need because Congress has decreed that no one may sell their organs. Instead you can only give your organs away. Most people, including me, and almost certainly you, aren't willing to do that for anyone other than a family member or close friend. So people without arelative or friend who can give them a life-saving kidney are in trobuel. They have to take their chances on a very long waiting list, hoping the right person dies at the right time before the clock runs out.

First off, the main fallacy of this argument is that is it based SOLELY on kidney transplants. Now these are, along with bone marrow and some liver and RARELY some lung, able to be accomplished while the donor is alive (the liver regenerates). For heart and lung, obviously, you have to be dead. This is also true for corneas and a pancreas (I think). So selling your organs won't help because you'd basically be saying that you'd kill yourself. Now if you're not willing to go through an operation for someone else, I highly doubt you'd kill yourself.
Congress banned the selling of organs because there are some very, very desperate people who would probably consent to death in order to get money. Which brings up the question, who would pay for these organs? The author suggsts that it would be the patient. Who would determine the price? Oh, the "market."

Which is another issue. As my readers know, organ transplants aren't decided based on ability to pay. They are decided babsed on medical suitablilty, as well as a host of other factors. If you are not a good medical match, you don't get an organ. If you are not going to be compliant, you don't get the organ. If you have a history of noncompliance and an inability to BECOME compliant, then you don't get the organ. You don't even get listed. I saw lots of people in the CF clinic who were totally ineligible for transplant because they had screwed themselves up so completely, there was no way they'd be able to handle it.
Also, many centers have a high survival rate due to the fact that some centers are pickier than others about what organs they accept. Dr. A was always talking about getting me "optimal" organs, whcih drove me crazy at the time, but now I"m glad. How are we going to know how good thse organs are? The donor will have to submit to medical testing. This isn't cheap. So will he make the recipient pay? Or the insurance company? (Which they will be THRILLED about, let me tell you) And would the recipient have to pay before all these tests, or after? What if they just aren't
a good match?

The writer asserts that by legalizing the selling of organs
"they'd be no crisis like there is today." Um, wrong. Maybe not for kidneys, although the things I"ve written above raise serious doubt sin that quarter, but we would still have a vast number of people who are waiting for organs that cannot be obtained by living persons. But, again, the author is unable to see beyond kidney transplants.

If we were really serious about organ donation and decreasing the waiting list, we would make it easier to be a donor. If you are a donor on your license, that's your consent. We shouldn't need to have to get another approval from the family. We could ban smoking just about everywhere so there would be more lung and heart donors. We could ban alcohol use so that they're be more eligible liver donors. Now obviously I'm being a little facetious here. But using the market is not the way to go. There are too many questions, and it would totally upend the system. What aobut those who are NOT waiting for kidneys?

As for Lifesavers programs, those won't help either. It amazes me how so many of these groups don't even focus on the medical side of transplants. What if you die in a car accident and thuis are unable to donate organs due to extreme internal damage? Or you're no eligible to be an organ recipient due to some other factor? The whole "I'll do for you, you do for me" idea sounds good, but, like so many other things (social security, anyone?) it's a good in theory, bad in practice idea.

Sure, waiting for organs is no picnic. I know. But the way UNOS has it set up it is a fair system. Everyone, rich and poor, gets an equal shot. Insurance companies do a good job covering transplants, and it's getting better as they become more "mainstream" in medical treatment. To have people buying and selling organs like they buy Wendy's stock is not only impractical, but would have serious rammifciation for everyone involved in transplant--patients, hospitals, medical staff, OPAs, and others. And they would not be good.

Transplant TV!

Just read on the WaPo site that Treat Williams is starring in a new TNT drama series, "Heartland," about a transplant center in Pittsburgh. How cool is that? He plays (even more cool) a lung transplant surgeon. It's going to be on Mondays at 10. Not sure when it starts...check your papers. But I found this to be waaaaay cool.
If I don't currently get TNT I would upgrade my cable so I could watch this. :)

Candlelight Vigil

If you're in the Columbus area, tomorrow night is LOOP's annual Candlelight Vigil, which celebrates donors, recipients, and those still waiting for transplant. There will be speakers representing all the different aspects of donation (donor families, recipients--I spoke last year!--people waiting, families of people who died waiting), a slideshow tribute, and the lighting of a candle representing each person who is waiting for a transplant. If you've never been and are somehow connected to donation, you should go. It really is a powerful evening. For more information, head to Lifeline'ssite and click on "events" at the top of the page. It starts at 7:30, rain or shine...

Support groups

Last week a few of the transplant families from Children's got together to have our first "support group" meeting, and I have to say, it was fun, probably because it didn't involve sitting around talking about "our feelings, " which would have been hard to do, given the group make-up.

There were two recipients: me, and then a 15 mo. old heart tx, who was just sooo adorable. He was 3 mo. old when he received his transplant, and he's just so cute. Love him. His mom and two older sisters were there with him. My parents had come with me, and the day had been organized by the mom of a heart-lung recipient, who was also around 3 months (I think) when he was transplanted. She brought her new baby, who was also very adorable. So, as you can guess, I was happy because there were a lot of cute kids.

We met in the library of the Ronald McDonald House (which is awesome...it has a reading room, a play room, a living room, all sorts of things. The kitchen was super-cool and very high-tech. There was, of course, a room totally devoted to the Buckeyes (well, it did say "In Honor of Jim Tressel" on the plaque outside, so you know...). But the library really needs some better adult books. I think I need to take care of that!

Anyway, we talked about how we got to the point of transplant, and some random things, like how the moms get their boys to take the drugs (I have a hard time with some of them--the predinose, for example, just tastes gross, and there are some days where I am sorely tempted just to spit it out.), activity, stuff like that. It was pretty general but a lot of fun. I wish Amber could've been there but 1) she was in Miami (lucky dog) and 2) it would've been a long drive for her since she lives upstate. The rest of us live in the general Central OH area.

But it was fun and I got the contact info. for everyone so hopefully we will be meeting again. Sorry to cut this short, but I'm having my 25th birthday shindig with my friends tonight in...oh....a half hour, and I need to get ready!! Eek! At least the cake is baked....yummy. :)

Oh, and I got my Donate Life plates! They are on my car and look awesome! If you live in Ohio be sure to go tot he BMV and ask for them ! They are $15 extra with $5 going to the Ohio Second Chance Trust Fund to raise awareness of organ and tissue donation throughout the state. Lifeline's website (link in the blogroll) has a link to the BMV, so go!

tax breaks for organ donors?

Paying Big to Be A Donor
Gifting an Organ Can Be Costly. Would a Tax Break Cross a Moral Line?

By Jason Feifer
Special to The Washington Post
Tuesday, March 20, 2007; Page HE01

Before Michael Friedberg donated a kidney to his wife last year, he underwent multiple tests and battled the usual jitters. Then he took one other step: He refinanced the family's home.

Friedberg, 60, works as an auto mechanic in Bladensburg, and he's paid on commission. Lifting heavy car parts soon after the surgery would be impossible, so he wanted to prepare for a drought of income by reducing his mortgage payments. The drought came: After the operation, he was out of work for two months and lost about $14,000 in wages.

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Michael Friedberg of Bladensburg lost about $14,000 in wages last year while recuperating after he donated a kidney to his wife. Some states help compensate organ donors for expenses they incur, but such moves stir debate.
Michael Friedberg of Bladensburg lost about $14,000 in wages last year while recuperating after he donated a kidney to his wife. Some states help compensate organ donors for expenses they incur, but such moves stir debate. (By Lois Raimondo -- The Washington Post)
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"I didn't have a choice," he said. "It was that or my wife was going to die. The waiting list was, at that time, like eight years to get a kidney."

There were 6,196 living-organ donors last year, and Friedberg wasn't alone in his financial losses. The recipient's health insurance typically pays for the donor's medical costs such as the surgery and various pre- and post-op tests, but donors are on their own for the rest: travel expenses for the numerous trips to the hospital, nearby hotel rooms before and after procedures and wages lost while they recuperate.

Transplant advocates fear those costs are a deterrent to donating, and so have been searching for ways to compensate living donors, who can give kidneys, bone marrow and a few other body parts. But by doing so, they're inching up on a loaded question: Is it morally wrong to pay people for their organs -- or at least for some of the costs incurred in gifting them?

Virginia Gov. Timothy M. Kaine may weigh in on the question when he decides whether to sign a bill that would authorize an income tax deduction of as much as $5,000 for living donors to help cover uncompensated expenses.

The proposal is modeled after a $10,000 deduction that Wisconsin enacted in 2004. At least 10 other states have adopted similar incentives, and more are considering it.

Other reimbursement models have targeted donors' lost wages: The federal government and some states -- including Maryland and Virginia -- give their employees 30 paid days off if they donate an organ. Advocates have asked large companies to follow suit. But such measures, while appreciated by many donors, haven't solved their financial problems.

Ed Nicholson, of Eau Claire, Wis., was the first person to take advantage of his state's law. He lost about $3,200, mostly in missed wages, in donating a kidney to his brother; the tax law let him recoup a few hundred dollars. That's typical of the law's savings.

"It helps," Nicholson said, "but it doesn't go far enough."

Those who hoped a tax break might attract more donors have also been disappointed. Since the Wisconsin law passed, living-organ donations there have dropped from 199 in 2004 to 167 last year.

That's just the normal ebb and flow of organ donations, said the bill's sponsor, state Rep. Steve Wieckert. As the tax-break idea gains traction around the country, he predicts, organ donations will increase.

Who Pays -- and How

Some advocates see donor tax breaks as a matter of government responsibility.

"If a citizen is willing to step forward and . . . donate their own body, the least the state can do is pick up the expenses," said Idaho state Sen. Mike Burkett, the leading force behind a law in that state that allows living donors an income-tax credit. (A credit is more generous than a deduction: In Idaho's case, a donor can reduce his state tax bill by as much as $5,000 to compensate him for expenses associated with giving up an organ.)

The federal government is also preparing to provide compensation, through a four-year program that is expected to begin reimbursing donors later this year.

Donor reimbursements sidestep the law against trafficking in human organs, supporters say, because nobody stands to profit. Nor do they raise the kinds of ethical questions attached to buying and selling organs: They don't run the risk, for example, of turning retread organs into luxury items available only to the wealthy or of inducing murder because of a good organ resale price.

Still, while the medical community generally endorses reimbursement, health-care practitioners know they're on a slippery ethical slope, regardless of whether the practice increases organ donations and saves lives.

"I think that we have to be very careful about the debate, because I think the American public has shown that they're willing to donate but they have a lot of internal reservations about how to do it," said Cindy Speas, director of community affairs at the Washington Regional Transplant Consortium.

But economist David E. Harrington said the states' tax deductions are already tantamount to outright payment. If states were more direct about it, he said, more donations might follow.

Harrington, who teaches at Kenyon College in Ohio, compares the issue to the donation of cadavers to medical schools. The schools frequently pay for funerals or cremations after the cadavers have been used; in states where funeral costs are higher, more bodies are donated, Harrington said.

"Why don't you do the same thing with organ donation?" he said: Think of it as paying for the donor's eventual funeral expenses, rather than for his organ.

But other medical experts fear such gestures could upset the public. A report published last year by the Washington-based Institute of Medicine and co-authored by James DuBois, director of the Center for Health Care Ethics at St. Louis University, soundly rejected the idea of paying organ donors -- even for their funeral costs.

The report, however, didn't object to tax breaks for living donors. The difference, DuBois said, is that covering funeral costs can seem like a financial incentive, while tax breaks are generally considered an effort to remove a barrier to donation. It might be semantics, he said, but it makes a difference: "Will the public interpret [payment for funerals] as a sign of gratitude, or as a deceitful way of trying to buy organs?"

Making Do

In the meantime, living donors have had to find ways to cover their costs.

Some, like Hagerstown, Md., resident Lillian Ecton, said it's a matter of planning ahead. She knew for a year that she'd be donating a kidney to her brother, so she saved up as much vacation time as she could. In the end, she still had to forgo a week's pay last year, but she wasn't bothered by it.

D.C. resident Sahra Torres-Rivera donated a kidney to a friend in 2001 and took three weeks off to do it. She thought her company's medical leave policy would cover her surgery and recovery but learned that as a temporary employee she was not eligible.

Co-workers petitioned the company to reimburse her lost pay from an emergency fund into which they had contributed. "It was overwhelming, the support that I got from my co-workers," Torres-Rivera said.

Ultimately, the company decided to pay the wages itself.

And, of course, some have taken to the Internet. Luke Sams, a Seattle resident, last year launched a Web site through which he solicited -- and received -- $3,000 to cover his expenses in donating a kidney to a friend.

Although some donors interviewed for this article said the process had caused them financial hardship, none regretted their decision. A few weeks or months of lost wages doesn't compare to the potential loss of a loved one or friend, they said.

That's how Friedberg, the auto mechanic, sees it. His wife, Mary, is alive thanks to his kidney, and now he's hard at work, making up for the money he lost.

"The kidney's working good for her, and I've got good body parts," he said.

"I kid with her. I said, 'Listen, it's lasted me 60 years, so you should be able to use it for another 60.' " ?

UM scientists finding exciting things...

From the Ann Arbor News:

A University of Michigan study involving a type of lung stem cells suggests they may be able to help with lung disease and donated organ rejection.

That's significant because a large number of lung transplant patients experience chronic rejection of donated lungs, with rejection rates of about 60 percent during the first five years after transplantation.

The researchers studied mesenchymal stem cells, a type of progenitor cell that most commonly originates in the bone marrow.

They found that the MSCs in lung transplant patients are not derived from bone marrow, but rather that they reside - sometimes for many years - in the lungs, and that the cells have the capacity to differentiate into multiple connective tissue cell types.

One of the most telling findings was that, in cases where the transplant donor and recipient were not of the same sex, nearly all the MSCs, about 97 percent, originated in the donor, indicating that they were present in the tissue since the time of transplantation.

Tracy Davis, News staff reporter

A good idea for donation?

From the Rocky Mountain Times (Denver):

The death last month of Rep. Charlie Norwood, R-Ga., may serve as a blessing for some of the estimated 70,000 kidney patients whose lives depend on receiving transplanted organs.

Norwood, who succumbed to lung cancer, was the lead sponsor of H.R. 710, a bill that will let living organ donors engage in "paired exchanges of human kidneys" without fear of prosecution.

The congressman, who waited six years for a lung transplant after his initial diagnosis in 1998, championed the bill in his final months. In his honor, H.R. 710 passed the House 422-0 Wednesday and it is expected to quickly move through the Senate.

As The Associated Press explains, "Paired donations allow a patient with a willing but biologically incompatible donor - such as a friend or family member - to match up with a similarly incompatible pair so both patients can get transplants." The United Network for Organ Sharing is but one organization that maintains databases of donors and transplant candidates.

By formally facilitating paired donations, the waiting list for kidneys could immediately shrink by 1,000 per year. This change alone could increase transplants by 14 percent, according to one study.

Paired donation is legal, but a number of hospitals have refused to participate. They've operated under the misguided notion (promoted by some ethicists) that donation should be an anonymous process, and that donors that find recipients and jump to the head of the line have received "valuable consideration," which is illegal. So the bill simply states that shared donation does not involve "valuable consideration" for an organ transplant.

The current interpretation literally is a killer: 60 percent of those on the waiting list at any time will die before they can find a recipient. It's also quite costly, as over time dialysis is much more expensive than a transplant. The Congressional Budget Office estimated that the bill would save taxpayers $470 million in spending on public health programs over the next 10 years.

Meantime, legislation is moving forward at the state Capitol that would simplify organ donation for Colorado residents at death.

House Bill 1266 would align state law with guidelines established by national transplant organizations so that, for example, people who want to make their organs available for transplant can link up with specific charities. It would also let those who do not wish to be donors more clearly make their intentions known.

These bills, federal and state, meld compassion with common sense. Both should quickly become law. Such personal acts of generosity should not be delayed by red tape or shrouded in legal ambiguity.

Yeah I've been there.

This
USA Today article is definitely something I can relate to. I have a list of drugs in a notebook I always carry, a port ID card in my wallet, and my friends know all sorts of info in case we're ever in an accident and I can't talk. Sometimes I think I'd go for the whole implanted device with my medical history...