Smiling through pain

[okarol]

Smiling through pain

By JOE MENDEN - Independent Record - 09/09/08

Three days a week, Diane Maxwell sits at St. Peter’s Hospital’s dialysis center hooked to a machine that does everything her kidneys once did.

All of Maxwell’s blood is circulated through a dialysis machine, which removes all the toxins and about 10 pounds of excess water before returning clean blood to her body.

Maxwell, 53, a retired Head Start teacher and national Head Start program trainer, figures the routine takes up about 15 hours of her time every week, including driving and setup time.

She does it all with a smile on her face and a quick wit.

“My kidneys and my bladder have a nice vacation,” she jokes.

The time she puts in, she says, is like her job. Her paycheck is her life.

Although Maxwell doesn’t know exactly what caused her kidneys to fail, she has had both diabetes and pulmonary hypertension. Diabetes and hypertension are the two leading causes of chronic kidney disease.

She’s learned some lessons the hard way.

“You take your body for granted. You take your health for granted,” she said. “It’s like Mark Twain said, ‘If I’d known I was going to live so long, I would have taken better care of myself.’ ”

The dialysis community hopes a recent Medicare bill passed by Congress helps prevent many people like Maxwell from ever needing to go on dialysis.

The bill, which passed July 15, contains a provision for education programs targeting people at risk for developing kidney failure.

The bill also contains increases in reimbursement for dialysis providers of 1.5 percent in 2009 and 2010 and an overhaul of the payment structure plan the following year, which providers hope is more fair, especially for rural providers.

Nancy Pierce, director of dialysis for St. Peter’s and the western region vice president for the American Nephrology Nurses Association (ANNA), said representatives of Sen. Max Baucus, D-Mont., were in contact with her for input throughout the bill-writing process. She couldn’t be happier with the results.

“Pretty much everything I asked for is in this bill,” Pierce said. “They listened to what we said.”

In a statement released Monday, Baucus said it was important to him in his role as chairman of the Senate Finance Committee to ensure that people in rural areas have access to affordable, quality health care.

“I made sure to include provisions to help with kidney disease in the Medicare bill I helped write and pass earlier this year,” Baucus said in the statement. “I want to do all I can to help Montanans lead longer, healthier lives, and these provisions will help meet that goal.”

In 2006, 188 Montanans were newly diagnosed with end-stage renal disease. Diabetes was the primary diagnosis for 80 of those patients — more than 40 percent — while hypertension was the primary diagnosis for another 28.

Pierce added that focusing education efforts on areas with high American Indian populations would also be effective. American Indians as a group are at higher risk of kidney disease, making up 6.4 percent of Montana’s population while accounting for 23 percent of the dialysis cases in the state, according to ANNA.

According to Dr. Ed Jones, chairman of the national nonprofit organization Kidney Care Partners, the details on both the education component and the reimbursement overhaul are still unclear.

Jones said Kidney Care Partners hopes to be involved in the process to make sure it is done right.

Though Maxwell knows others on dialysis resent the ordeal they have to go through, she doesn’t see it as a burden.

When she was diagnosed with pulmonary hypertension, she was given three years to live.

The experimental medication she was given to battle the disease may have been the cause of her kidney failure — but it also probably added years to her life.

Needing medical treatment three times a week has limited her ability to be spontaneous — any travel requires some serious planning.

But it also has allowed her to see her two sons, Corey, 25, and Tyler, 28, grow into adults. It has allowed her to know her 19-month-old grandson and look forward to her second grandchild on the way.

To her, every day — and the treatment that allows her to keep seeing another day — is a gift.

“They call me the miracle. I’ve defied death three different times,” she said. “I feel blessed to be able to be alive and enjoy it. I’m not leaving without kicking and screaming.”

Features editor Joe Menden: joe.menden@helenair.com or 447-4087

http://www.helenair.com/articles/2008/09/09/weekly_features/health/top/50hs_080909_dialysis.txt