Editor’s Note: This story was originally published on Omaha.com
PHOTO BY ALYSSA SCHUKAR / THE WORLD-HERALD
Photo: Dr. Kristin Flowers gives Leslie Murrell a preoperative physical examination last week at the Nebraska Medical Center’s transplant center. Leslie is scheduled to undergo surgery Tuesday to donate a kidney to a friend. “You have an opportunity to help someone feel better,” Leslie said. “I can’t imagine how she has been feeling for a year and a half. I know she gets really tired.”
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By Bob Glissmann / World-Herald staff writer
The 9-year-old girl slept as a machine pumped her blood out of her body, filtered it and pumped it back in.
I was at the Nebraska Medical Center interviewing her mom, who was saying how brave and tough her daughter was. The girl didn’t have the option of skipping her kidney dialysis treatment. The treatments kept her alive as she waited for a donor kidney.
After I wrote the story in April 2012, I got tested to see if I could donate one of my kidneys to her. I was a longtime blood donor, and I saw a kidney donation as just a more complicated, painful extension of a blood donation — a donation with an abdominal scar and a recovery period.
I filled out the paperwork and went to the med center to have several vials of blood drawn. I was disappointed that I wasn’t a match for the girl but, thankfully, she ended up getting a kidney a few months later.
Then in July of this year, a friend posted on Facebook that she needed a kidney.
The friend, Stacie Hamel, noted in the post that she didn’t want to be too dramatic. “A living donor is preferred for a better chance of success and because the wait otherwise is 3-5 years,” she wrote.
What a shocker. Looking at Stacie, you wouldn’t know that she would be on any sort of transplant list. You wouldn’t think she was 50 yet, either.
But she has polycystic kidney disease, which makes your kidneys look like bundles of grapes and reduces their effectiveness. She’s getting by on about 20 percent of her kidney function.
Stacie and I worked together here at The World-Herald for years before she left for another job. I knew she sometimes got migraine headaches, but I didn’t know anything else about her health.
I called the Nebraska Medical Center’s transplant office after reading Stacie’s post. I figured they could just review my old numbers and see if I matched Stacie.
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It doesn’t work that way. I had to fill out the paperwork again and get my blood drawn again. Then they ran a cross-match — they mixed my blood cells with her plasma cells — to see if Stacie’s system would accept my kidney or reject it.
Stacie found out she has polycystic disease in the mid-1990s but, until the last couple of years, she had normal kidney function. She hoped she would be one of the lucky people who have the disease but whose kidneys don’t fail.
But her kidney function started to decline fairly quickly. She’s not sure why — her age, level of stress or just the natural course of the disease. Last spring, her kidney specialist referred her to the med center’s transplant center.
Kidney disease runs in Stacie’s family. Her father was diagnosed when he was in his 30s and had a kidney transplant at Clarkson Hospital in 1976. He died in 1985.
Her younger sister has kidney disease but still has normal kidney function. Her older brother had a kidney transplant in February 2012. It was a paired donation, in which his wife donated to someone who had a friend who donated to Stacie’s brother. Stacie’s older sister doesn’t have the disease, but Stacie’s oldest daughter does.
Over the years, Stacie said, she always assumed that if her kidneys started to fail, she would go on dialysis before she was placed on a list for a kidney transplant. But since it usually takes so long to get a donor kidney and doctors knew that her kidneys would continue to deteriorate, she made it onto the United Network for Organ Sharing list.
That list is long: 97,731 Americans are awaiting a kidney. Compare that with the 15,831 on the list for a liver and the 3,602 who are awaiting a heart.
The kidney list likely won’t dwindle anytime soon: One in 10 American adults — more than 20 million people — has some form of chronic kidney disease, according to the national Centers for Disease Control and Prevention. Diabetes and high blood pressure are the leading cause of the disease. People whose condition progresses to end-stage renal disease must either start dialysis — usually a three-times-a-week, three-hours-per-treatment process — or get a kidney transplant.
Transplant recipients generally live twice as long as those who stay on dialysis, according to the National Kidney Registry.
People who need a transplant can get a kidney from a dead donor or a live one. A kidney from a live person can last almost twice as long as one from a cadaver — it gets transplanted immediately, and it hasn’t been traumatized by the death of its host.
Last year, nearly 16,500 kidney transplants were performed in the United States. About 5,600 of those kidneys came from living donors.
According to all the literature I’ve been given, people can live normal lives with only one kidney. When the donor’s kidney is removed, the remaining one will increase in size to compensate.
The med center does many more kidney transplants from dead donors than from live ones, and the number of living-donor transplants is dropping: The number per year has fallen from 58 in 2010 to 37 in 2011 to 34 in 2012 to 18 so far this year.
“People just aren’t stepping up,” said Vicki Hunter, the med center’s kidney/pancreas transplant manager. “I just don’t think they’re aware of what they can do.”
The number of kidney transplants that the med center has performed using cadaver kidneys is much higher: 94 so far this year.
After making it through the blood tests, I had to be tested to see if I was healthy enough to donate and whether I could be passing along some disease if I were to donate.
I went in late last month and had a chest X-ray, a CT scan and an EKG. My kidneys were analyzed for the amount of waste products they filter in a prescribed time frame. Part of that involved collecting my urine in a jug for 24 hours. Twice.
Because a scan showed some spots on my liver, I had an MRI of my abdomen early this month. The spots turned out to be a few harmless cysts.
And the tests aren’t cheap. As a potential donor, I didn’t have to pay the bills, but I found out the MRI cost $4,351.37. One test that measured kidney function, a Glofil test, cost $3,036.70. The radioactive tracers they injected for that test to check my kidneys’ filtering ability cost $1,987.41.
I mistakenly have been billed $1,860.01 that included six lab tests and a $257.40 bill for the EKG. I’ve also gotten a bill for $446.87 for two other lab tests and a $43.50 bill for blood and antigen typing. All the charges are supposed to go to Stacie’s insurer, but the transplant office tells me that bills sometimes get sent to the potential donor. They say they can clear up the billing errors and, so far, they have.
The day I had most of the tests, I also had to watch a video about organ donation and talk to a surgeon, a psychologist, a donor coordinator and a social worker about all that could happen if it turned out I could donate.
Social worker: “What’s the No. 1 risk to you?”
Me: “I suppose I could die.”
Social worker: “That is No. 1. You’re absolutely correct. That is the biggie.”
The transplant folks wanted to make sure I wasn’t being pressured into giving or wasn’t being compensated. They also wanted to find out how I handled stress and whether I had a good support system.
Another potential donor going through the same process that day was Leslie Murrell of Omaha (photographed above), who was accompanied by her husband, Chris.
One of Leslie’s friends had blood pressure problems about a year and a half ago that damaged her kidneys. The woman has about 10 percent kidney function and has been on dialysis.
Leslie heard that her friend needed a kidney and got tested. It turns out she’s a match and has been cleared to donate, pending the results from some last-minute tests. She is scheduled to donate a kidney on Tuesday.
“She did not know I went to get matched,” Leslie said of her friend. “I told her at a pizza restaurant one night. I just wanted her to have that peace of mind that there was a match. She was just completely obliterated. She couldn’t believe it.”
The screening process has been a cool experience, Leslie said.
“You have an opportunity to help someone feel better. I can’t imagine how she has been feeling for a year and a half. I know she gets really tired.”
The doctor points to one of Leslie’s kidneys on a CT scan. A potential donor first has blood drawn to determine if he or she is a match for the recipient. If the answer is yes, then a chest X-ray, a CT scan, an EKG and kidney function tests are performed to be sure the person is healthy enough to donate.
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Leslie is healthy, as am I. I’ve never smoked, I don’t take any medicines, I watch what I eat, and I run a lot. Many people must deal with much tougher health conditions.
My wife and our five kids didn’t raise any objections when I found out I was a match, but as test after test brought me closer to being cleared to donate, my wife expressed some concerns. What if one of the kids needs a kidney? she asked me. I told her that I hoped one of the other kids would step up.
She later read about the low mortality rate among donors (.03 percent, or 3 in 10,000) and other information about kidney donations, and that put her mind more at ease.
I also told her about the experience of Terri Campbell, a co-worker who used to occasionally run with our running group at lunch. Terri donated a kidney to her husband’s cousin in 2005. “I would never know, physically, that this has been done to me,” she said. “Ever.”
She stayed in the hospital for five days after the surgery, which was longer than I thought. She didn’t start running again for about six weeks after the surgery. That was a concern to me, but not a huge one.
But she wisely reminded me that the focus should be on the recipients: “You just want them to be better and feel better and live a normal life.”
I finally was cleared to donate earlier this month. My wife said she’s fine with the decision.
“I’ve always thought it was your decision because it’s your body,” she said. “If this is something you feel called to do, you should do it.”
When I called Stacie, she said she was happy and “beyond thankful.”
Last spring, when she found out her kidneys would fail and she would need a transplant, she was in tears, “even though I kept telling myself it was silly to cry.”
She knew she wouldn’t have any close relatives who could give because of their age, other health conditions or because so many also have the same disease. She felt uncomfortable about asking anyone for help. A kidney, she said, “is really too much to ask of anyone.”
Based on how her kidneys are functioning, her doctors have put her case on hold. They have asked her nephrologist to let them know when he thinks she’s closer to needing the transplant. They want to do the transplant before she needs dialysis, but they don’t want to do it too early, either, because her immune system will be compromised by the anti-rejection drugs she’ll be on afterward. She figures the surgery will be in a year or so.
Stacie’s getting lab work done every three months.
She gets tired sometimes and, by the end of the week, she feels fatigued.
“I am occasionally having some kidney pain, but it isn’t very bad,” she said, explaining that chronic kidney failure is so gradual that the body adjusts. “They say you don’t really know how bad you feel until you have the transplant and then realize what feeling good actually feels like.”
I’m glad I don’t have to start preparing for a donation within the next 24 hours, as Leslie Murrell is. But my time is coming. And after all the research and tests, that’s fine.
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7 years and still on a waiting list
Lindsey Andersen has already had two kidney transplants in her 29 years. Now, she needs another.
She had the first surgery at age 13, after being diagnosed with a disease known by its abbreviation, MPGN. That kidney lasted about four years. The second transplant, performed when she was 17, lasted about that long.
Both kidneys were from dead donors. She is hoping the next one will be from a live donor. Live donors’ kidneys generally last much longer than kidneys from cadavers, and knowing that she was getting one from a live donor would give doctors time to put her on a medicine that would help the kidney work.
Andersen, who lives in Fremont, has been on a waiting list for a donor kidney for seven years. Because of the earlier transplants, her body has built up antibodies that make finding another match difficult.
A donated kidney would free her from kidney dialysis on Mondays, Wednesdays and Fridays from 7 a.m. to about 10:30 a.m. “You sit there and let the machine clean your blood for you,” she said.
Andersen works part time as a certified nursing assistant. If she worked full time, she said, she would lose her Medicaid coverage.
Medicare pays 80 percent of patients’ dialysis-related costs, and Medicaid or private insurance picks up the other 20 percent. Hemodialysis, which Andersen receives, costs Medicare nearly $88,000 per year per patient. The annual per-patient charge for peritoneal dialysis, which requires the use of an abdominal catheter through which a sterile cleansing fluid is injected and later drained, is nearly $72,000.
A kidney transplant patient costs much less to treat: about $33,000 per year.
Andersen said she usually feels OK, but by Sunday nights it can get harder to breathe, and her chest can feel heavy if she doesn’t watch her fluid intake over the weekend stretch without dialysis.
She knows she must stay on dialysis until a kidney is found. She said she has known a few other people who got tired of the routine and decided to quit.
“You can (live) a week, a month,” she said. “It isn’t a nice way to go. You get septic.”
— Bob Glissmann
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FOR KIDNEY DONORS
Risks: Possible long-term risks of kidney donation may include high blood pressure; reduced kidney function; hernia; organ impairment or failure that may lead to the need for dialysis or transplantation; or even death. Negative psychological symptoms are possible during the healing process and years after the donation.
The recipient’s insurance may or may not cover follow-up services for the donor if medical problems occur as a result of the donation. A donor’s insurance also may not cover those expenses.
– Source: United Network of Organ Sharing
To become a donor: For more information about becoming a donor, go to
www.organdonor.gov or call the Nebraska Medical Center’s transplant office at 800-
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