5 years after her kidneys shut down, woman knows her fate may rest with a living

5 years after her kidneys shut down, woman knows her fate may rest with a living donor

By Byron Rohrig Special to The Courier & Press
Posted April 15, 2012 at 11:17 p.m., updated April 15, 2012 at 10:41 p.m.

It's late afternoon, a gorgeous spring Thursday, and Doreen Lamar is exhausted and hoarse. Thursday is one of her three days a week to spend in dialysis. Seven hours at a stretch. Week after week, month after month.

The voice will come back, but she'll be squeaky again after another session Saturday because of fluid depletion. It's one side effect the 56-year-old Perry County, Ind., native suffers after a machine filters waste from her blood, doing the job her kidneys can't.

"My blood pressure drops way down, to the 70s over the 50s — I'm really weak when I get home," she said. "Right now, dialysis is my only way to live, but it's not a nice way to live."

Doreen Lamar needs a new kidney. She's doubtful, but hopeful, that she'll get one in time.

Doubtful if it means she must wait for a kidney from a deceased donor. Hopeful for a living donor.

That, she said, is why — for her own survival as well as that of others in similar circumstances — she is trying to get the word out to potential living donors to consider giving a kidney.

Living, giving

Living organ donorship doesn't get as much press as donorship by the deceased. Part of that may be its limited application — most organs you can't do without, so living donorship of them is out. You can live with just one kidney, so it's possible to donate one; you can donate a portion of your liver, which has the ability to regenerate in both donor and recipient; you can donate bone marrow. With some rare exceptions, that's the limit.

Kidney transplants are the most common living-donor transplants because demand is huge. On April 1, 91,656 people in the U.S. were awaiting kidney donations, according to the Organ Procurement and Transplantation Network —

more by far than awaited any other organ.

IU Health Transplants, which performed Indiana's first kidney transplant in 1965, now has completed more than 5,900. Of those, 1,800 transplants — 31 percent of the total — have been from living donors.

Several surgeries

Acute shutdown of her kidneys was just one life-threatening complication Lamar suffered almost five years ago when a surgery went awry. The Tell City resident has since been in what is termed end-stage renal failure.

Thankful to have a dialysis clinic in her town, she drives herself each Tuesday, Thursday and Saturday to the sessions that keep her alive. Then she drives back home after waiting for her blood pressure to rebound. "It's not a pretty sight to see me get in and out of a car because I'm stiff and I stagger around," she said.

Lamar's mobility problems go back more than 22 years and led eventually to a 14-hour operation in 2007 at Barnes Hospital in St. Louis in which "everything that could have gone wrong, did" — including permanent loss of kidney function.

Overweight since childhood, in her early 30s Lamar decided to change that. She revamped her eating habits and dropped 103 pounds. But after the weight loss, she found herself getting shorter in height and was having difficulty breathing.

It was 1990 when she learned she suffered from a severe case of scoliosis (curvature of the spine). Lamar knew, growing up, she had a back problem. "But my family doctor said it was because I was 'too damn fat,'" she said. "I had a more than 90-degree curve. The first three surgeries got it to 45 (degrees), which is still pretty bad."

Lamar said the best thing to come out of it all was her enduring friendship and patient relationship with Dr. John Grimm of Tri-State Orthopedic Surgeons in Evansville, who would prove a key supporter of Lamar beyond his specialist's role and remains so today. "He was floored that no (doctor) had seen (the scoliosis) before," she said.

Lamar is a self-taught computer programmer. She worked with computers 25 years before her back problems finally ended her career seven years ago. After graduation from Tell City High School in 1974, Lamar studied accounting at the University of Evansville, decided she didn't like it and left school after two years. After six months at City Chair Co. and three years as a city police dispatcher, she landed a job in 1980 at St. Meinrad Archabbey, "mounting tapes and just running jobs" as a computer operator at Abbey Press.

There, during slack periods on her 4-to-midnight shift, she studied COBOL books and learned computer programming. She became a programmer at Abbey and, in 1995, left to join a new company near Santa Claus that would eventually be called Communication Logistics. She was recruited by one of its founders, Richard Wilson, her former boss at St. Meinrad.

Fallout from a series of back surgeries after the diagnosis of scoliosis resulted in Lamar's being on and off disability for her last 16 years of work. She went under the knife nine times in three years, 1991 through 1993. She was declared permanently disabled in 2006.

In 2007, Lamar underwent three more surgeries, these at Barnes Hospital in St. Louis. The final one was disaster.

Her phrenic nerve — the main nerve controlling the diaphragm, primary muscle involved in breathing — was nipped during a 14-hour procedure, rendering her dependent on a ventilator. She also developed a blood clot in her leg and suffered a slight stroke. Doctors believed trauma from these events resulted in permanent kidney shutdown.

Transferred to Select Specialty Hospital in Evansville, she was weaned from the ventilator. A complication put her on a breathing machine again. Still on a ventilator some 10 months after the surgery, Lamar said she was being sized up for long-term nursing care with the assumption she'd be on a ventilator for life.

That, she said, is when Grimm, who'd already assisted in one of her surgeries in Louisville, Ky., and attended another in St. Louis as a consultant, stepped out of his specialty and helped get her into Kindred Long Term Care Hospital in Louisville, a facility with good reputation for ventilator-weaning. It took five months, but 13 months after the disastrous surgery — in autumn 2008 — she was home again, ventilator-free.

No remedy was in sight, however, to wean her from her thrice-weekly dialysis treatments.

That would take a kidney transplant.

Long wait

Doreen Lamar has type O blood. It's a good blood type if you're a kidney donor because almost all recipients, regardless of blood type, can receive a kidney from an O donor.

But a type O recipient can receive only a type O kidney. They, of course, are the scarcer because of their versatility.

So Lamar waits.

She waited a year after her 13 months of hospitalization to begin the complicated and time-consuming testing to qualify for a transplant list. She now has been listed for two years, both at Indiana University Hospital in Indianapolis and the University of Cincinnati Hospital.

And she waits.

"I am told, because of a shortage of organs from deceased donors, my wait is three to four years. I'm type O, so that makes it even longer they told me the only hope of getting a kidney sooner is if I can find a living donor," she said.

Statistics were not readily available on how many people die each year awaiting a transplant kidney. But the following was available from the U.S. Department of Health and Human Services: Each day, about 79 people receive transplant organs and 18 people die because the organ they needed was never donated.

Losing a friend

It happens a lot with kidney patients. One of them, late last year, was Carl Elder, in his 70s, a computer whiz like Lamar, a dialysis mate whom she called her "very best friend."

"We played computer games on the iPad when we couldn't get to sleep," Lamar said. "We played word games all night long, and during dialysis, too. It was so refreshing to talk computers with someone that age."

Elder's death hit her hard. She lost a friend — not the only fellow dialysis patient she's watched die — and was reminded Elder's fate could be hers.

"I don't like to think about it, but it's reality," she said. "It's tough when you have a best friend who dies in dialysis. And I can see myself going downhill. Dialysis treatments are hard on you. I can feel myself getting weaker and weaker."

Members of Lamar's immediate family have either diabetic or blood-pressure problems that disqualify them as living donors. So she must hope another donor will come forward on her behalf. Michelle Brockman of Hawesville, Ky., formerly a co-worker at Abbey Press and a booster of living organ donorship, had agreed to donate a kidney for Lamar. But after going through 98 percent of pre-donor testing, she was disqualified. The kidneys of Brockman's husband were failing when he died two years ago of heart disease related to diabetes.

Ironically, a Tell City woman with whom Lamar is not acquainted may have helped Lamar's cause recently when she put living donorship in the public eye. Bobbie Davis, also 56, a security officer, offered just last month to donate a kidney to a Darmstadt couple, each with end-stage kidney disease as a result of Type 1 diabetes and each in need of a transplant. A Mount Vernon, Ind., couple, Lavon and Steve Keitel, also contacted Kerry and Lisa Keck of Darmstadt and offered to donate kidneys after a story about them appeared in the Courier & Press.

Though Lamar is type O and needs a compatible kidney, an incompatible donor could come forward and donate in her name. "The transplant centers have what they call paired donations," Lamar explained. An incompatible donor is placed in an unmatched pool where donorships are swapped with compatible recipients until all unmatched donors and recipients find a match.

"(It) takes longer than finding a type O for me but it is still quicker and better than waiting on a deceased (donor) list," Lamar said. Because there are respiratory caution flags dating back to her 13 months on a ventilator, a living donor's kidney would work better because organs from a living donor usually start working right away. She said fluids would be added to her body to get a deceased donor's kidney functioning, which doctors have told her could cause breathing problems and result in a return to a ventilator.

An 'amazing gal'

Some who know Lamar or have heard the story of what she's been through are amazed her determination. She said: "The main thing that has kept me going is the fact that over the years my spine surgeon has become my best friend and cheerleader, and he has done so much for me and I do not want to let him down."

Those are her words about Dr. John Grimm, who, besides finding a way for Lamar to escape ventilator hell, also arranged pastoral care for her when she was hospitalized and first encouraged her to pursue a transplant.

"When I first got out of the hospital, I didn't want to talk to anyone about transplantation," Lamar recalled. "He kept working on me and working on me until finally I realized, 'Yes, this is really what I want to do.' " Since, she added, "I have been on a mission to get this kidney."

Grimm, who examined Lamar late last month, said he can see her health is waning and hopes her donor comes along soon. "What better gift to give," he said.

Though Grimm agreed he has "tried to facilitate," he insists the victories she's won "she mostly did on her own. She's a pretty amazing gal. She's just very tough and won't give in."

http://www.courierpress.com/news/2012/apr/15/awaiting-the-ultimate-gift/