'Our sister on dialysis' is getting better

'Our sister on dialysis' is getting better
Desire to live, enjoy life replaces initial doom-and-gloom reaction for woman, 54

By Carmen Duarte
ARIZONA DAILY STAR
Tucson, Arizona | Published: 10.03.2008

Elizabeth "Ann" Fortune-Gamble is on stage singing messages of hope, joy and miracles. Her soprano voice belts out the words as she performs with the Gospel Music Workshop of America's Tucson chapter.
Young and old in the congregation rise, sway their arms in the air and shout "Praise the Lord" and "Amen" in an atmosphere akin to a revival.
Then, Deacon Al Berry leads the worshippers in prayer for their sister Ann at this May concert at Tucson Mountain Baptist Church: "Bless our sister on dialysis. I know she is better now. God bless her and guide her in her efforts. We thank you in Jesus' name."
Ann wipes away tears.
At age 54, she says it is her faith that calms her, keeps her life in perspective and gives her resiliency as she lives with kidney failure and daily dialysis.
Faith gives her strength to keep working as an office coordinator for Carondelet Health Network, a struggle because her illness steals her energy and complicates her schedule.
Faith also helps as she and her husband, David Gamble, 47, care for Ann's 83-year-old mother, who battles Alzheimer's.
Ann knows her mother, Elizabeth Fortune, will not be able to live with them much longer. She is searching for a suitable nursing home. "I hate to do it, but I know I have to," she says. "I pray that she doesn't forget who I am."
Highs and lows
Ann's love of music is innate. Her mother sang and played the organ a lifetime ago for congregations Ann's father — the late Rev. Walter Henry Frank Samuel Fortune — led as a minister for the African Methodist Episcopal Church, including Prince Chapel AME on South Stone Avenue.
In August, Ann was a backup singer for Lyle Lovett at a concert at Casino del Sol's AVA. She shared with Lovett that she is on dialysis, and he asked her to let him know if she gets a kidney transplant.
The next day she took a flight to Nashville, Tenn., for the Gospel Music Workshop of America's 41st National Convention at the Gaylord Opryland Resort. The trip threw her off schedule for dialysis and she began retaining fluid after missing a treatment.
Her legs and feet swelled to the point that she had difficulty walking. She relied on a scooter to get around the vast resort, and eventually became too weak to perform in a final choir performance.
Once she returned home, she missed a day at work because she developed peritonitis, an infection causing inflammation of the membrane that lines the abdominal cavity.
Such setbacks come with kidney failure, something Ann still has trouble accepting.
"I try to reassure her that things will be all right and to just keep on going," says David, who works for Carondelet Medical Group's nurse triage answering service. He prays every day and reads the Bible for inspiration.
Symptoms and discovery
Until May 2007, Ann thought she had out-of-control allergies.
She went to an opthalmologist because she believed her symptoms were causing blurry vision. Instead, she learned there was bleeding in her retinas, and the cause was diabetes. Diabetes is the leading cause of kidney failure, and hypertension is the second. Ann has both.
She was stunned, and felt like she was kicked in the gut. She'd had no idea she was a diabetic — just as nearly 6 million Americans don't, according to national estimates.
Diabetes pushes a person's blood sugar too high. Uncontrolled, it can lead to complications including blindness, lower-limb amputations, heart disease and kidney failure.
Untreated high blood pressure can also cause kidneys to fail, as well as strokes, heart attacks and congestive heart failure. About one in three adults in the United States has high blood pressure, and one-third don't know it.
After Ann's diabetes diagnosis, her health rapidly declined. By fall she was going into renal failure. She was anemic and received blood transfusions. She also developed asthma, all the result of her failing kidneys.
When doctors mentioned dialysis, Ann went into a mental lockdown. She silently began planning for her mother's future in a nursing home. She figured she would let renal failure take its course and would live as best as she could without dialysis until she died.
Complications
After weeks of it all sinking in and her fear subsiding a couple of notches, Ann began thinking more clearly. She realized the gloom and doom taking over her mind was because she felt weak and sick.
Her desire to live knocked her back into reality, and by January she had surgery to place a catheter into her abdominal cavity for continuous peritoneal dialysis.
Carol Walton, a home-dialysis nurse with Fresenius Medical Care, taught her how to treat herself, and she began four treatments a day in February.
She starts at 6 a.m. at home and does another treatment at 11:30 a.m. during a break at work. She does a third treatment at 6:30 p.m. after arriving home from work, and the last at 10:30 p.m. after she puts her mother to bed.
Dialysis supplies are delivered to her home every month, and when she travels she has them sent to her destination.
Since her ordeal began, Ann has dropped 50 pounds — most of it liquid her body was retaining. "She looked like the Pillsbury Doughgirl, all swollen up. Now she is a superstar," says her nephrologist, Dr. Alan Cohn of Arizona Kidney Disease & Hypertension Center.
People on dialysis are tough, her doctor says. "People survive," he says, "because they want to survive."
Treatment
Ann's treatment and lifestyle changes are leading her back on a healthy track.
Some days she battles fatigue that drops her to her knees. She has respiratory infections, often stemming from allergies.
She stopped working in December but by April returned full-time to Carondelet. She worries about keeping her job because of all her medical appointments each month.
The majority of people on dialysis do not work because their energy levels are low and most spend hours, three days every week, at a treatment center.
Ann says the reality for many is that they need medical insurance coverage to help them with their treatment until Medicare kicks in after 30 months.
Coping with bills creates more stress on patients, says social worker Tambra Day of Fresenius Medical Care. She advocates for patients by seeking financial aid and help with medications from sources such as the Arizona Kidney Foundation and American Kidney Fund.
Day also works to find utility assistance, food and transportation for patients, and helps those who qualify for the state medical plan for the indigent, the Arizona Health Care Cost Containment System.
On June 20, Ann had her monthly examination. Her blood pressure was 203/108, and her doctor told her the numbers must come down.
Ann's phosphorus is up and she needs to watch her diet, which includes avoiding dairy products. She also must eat more fruits and vegetables.
Walton, her home dialysis nurse, drew blood from Ann's arm, making her tense up because she has a phobia about needles. She knows she needs to kick this fear because she will be dealing with a lot of needles after she receives a transplant, beginning with lab work three times a week.
Wanting a transplant
On May 30, Ann began an evaluation at University Medical Center to see whether she is a candidate for a transplant.
She and David also needed a plan in case he could not bring her to the hospital three times a week for tests and lab work if she gets a transplant. She applied for Van Tran, the city's transportation service for those with disabilities.
The couple met with a social worker to discuss options to help pay for anti-rejection medications not covered by Ann's insurance. This can run up to $2,000 a month, which worries them. Medical costs the first year after a transplant can run $120,000 to $140,000, and transplant patients are responsible for what is not covered by medical insurance.
Ann feels fortunate that there are people flocking around her, offering to get tested to see whether they can donate a kidney. They include her husband, six friends and a young woman whom Ann sees as a daughter, Kandice Horsey of Washington, D.C.
Ann sees their willingness as miracles from God, gifts to treasure.
"A kidney transplant will give you a normal and longer life. You will feel much better, stronger with much more energy and life will be great," Dr. Cohn tells her.
In the future, he tells her, she should also think about a pancreas transplant because of her diabetes. Ann sits motionless, her eyes bulging.
Soaking up each moment
Ann wants to share many more years with David, the love of her life and her husband of 12 years.
She wants to soak up every moment while her mother still recognizes her.
She wants to sing with the Praise Team chorus at Prince Chapel African Methodist Episcopal Church and in concerts throughout Tucson with the Gospel Music Workshop.
Mostly, she wants time — time to cook more meals and set more tables and share her favorite soul food — fried chicken, greens, cornbread and sweet potato pie — with those who inspire her.
● Contact reporter Carmen Duarte at 573-4104 or cduarte@azstarnet.com.

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