Army wife gets a new lease on life
September 16, 2010
FORT HUACHUCA, Ariz. -- It's been almost two years since Stacey Turner registered to receive a kidney transplant, a process she was told could take up to five years. Last December she received her kidney, and a new outlook on life.
When Turner was 17 she was diagnosed with polycystic kidney disease. Until four years ago, the 41 year-old never thought the disease would affect her life, until one day she had to make a decision that would ultimately depend on someone else's life.
Turner, a native of Georgia, found out she had the disease while trying to donate blood. Because she had high blood pressure that day, technicians refused to take her blood and suggested she see a doctor. After numerous tests doctors determined she had cysts on her kidneys.
Although polycystic kidney disease is genetic, neither one of her parents have it. Because of this, Turner believes she inherited it from one of her grandparents, but there's no way of knowing because they all died at a young age.
According to www.kidney.org, about 600,000 Americans currently have polycystic kidney disease. Turner says when it came time for her and her husband, Sgt. Maj. Joseph Turner, who works at Fort Huachuca's Human Intelligence Training - Joint Center of Excellence, to talk about having children she was concerned about passing on the disease.
"Knowing now what I know, I definitely would have thought long before I had kids," she notes, explaining all she had to do since she was 17 was annually visit a Nephrologist, or kidney specialist, and up until that time her doctors had told her she wouldn't have kidney failure until she was in her 60s.
Since there was a 50 percent chance of her children inheriting the disease, the couple decided to take their chances and start a family. They are parents to two girls, Morgan, 17, and Darby, 16; Morgan was diagnosed with polycystic kidney disease when she was 2 years-old.
The beginning: Dialysis
"I was absolutely fine until about four years ago [when] I started feeling run down and fatigued," she explains, noting her husband was deployed to Iraq at that time so she didn't share her news until he returned, about a year later.
Six months later the family moved to Fort Huachuca, where Turner's doctor suggested she quit working and told her the longer she stayed out of the work, the longer she could prolong dialysis. Dialysis is a procedure that performs duties similar to a kidney when the kidneys no longer work properly; ideally, it filters the body of harmful wastes.
Although being a stay-at-home mom might have delayed dialysis, it did not protect Turner from everything.
In August 2008, she was admitted to the hospital for a kidney infection, which, unbeknownst to her, she had been enduring for three months.
That, she says, is what sent her over the edge and right into the clutches of dialysis.
Turner's doctor told her if she didn't pursue dialysis her time would soon run out, which she says didn't give her much choice considering she had a family to care for.
"I think people expect Army wives to be strong women because people see our husbands as pseudo-superheros, but I don't think people realize we have these problems," Turner says, noting, "If your kidneys don't work you don't last; you just get toxic."
She received a catheter in her chest and they began the three-days a week, three-hours a day dialysis treatment.
To make needle insertions easier for the treatment, doctors placed an anteroivenous fistula, which involves connecting an artery to a vein in the forearm to make a large, strong vein, into her left arm. The large "vein" will remain in Turner's arm for the rest of her life, in the event of her needing dialysis treatment again.
"It's really hard on your body," Turner says of the dialysis treatments. "It's like you have the flu after every treatment because they take all your blood out, filter it and put it right back in.
"You're not prepared and nobody prepares you for it. You can read all you want to read but until you're sitting in that chair and they're sticking you with 14-gauge needles, you have no idea."
Turner says the first time she was at dialysis she looked around and noticed how sick everyone looked. At that moment she asked herself, "am I one of these people'"; she suddenly realized she was just as sick as anyone else there.
"It's really scary because you don't realize [it] until you're sitting in that chair and nurses are [running] around and the blood is going through everybody's machines," she says, noting, "It's very hard when you first start."
She may have realized she was sick, but that didn't stop her from continuing with her life.
"I was still exercising when I could. I was still going to Zumba class with a catheter in my neck, taped down because it was flopping all over," she jokes, adding, she had two children to take care of and a husband who was constantly on temporary duty. "I'm an Army wife; I didn't have time," she adds.
After they began dialysis the next step was to register Turner for a transplant, which for her was October 2008.
Waiting for a kidney
"A lot of people decide to stay on dialysis and not get a transplant because it's not a cure, it's just another treatment. It takes a lot out of you," Turned explains, adding, "For me to be a mother I had to get a transplant."
Six people, who included friends, family and one of her husband's Soldiers, volunteered to give her one of their kidneys.
"It was really nice because you don't want to ask; people just started coming and saying 'I'll do it,'" Turner says. "It made me feel really good that I had these people who cared enough and [were] selfless enough. I'm sure it's not an easy thing to say 'you can have an organ.'"
Not one of the six volunteers could donate a kidney to Turner because they didn't match her blood type, which was "O" blood type, nor did they match her three types of antibodies.
With each possible donor she'd get her hopes up.
"It's a huge emotional rollers coaster," she says. When she found out the sixth person couldn't donate she says she was almost expecting it. Turner was told she would spend five years on the United Network for Organ Sharing's deceased donors list, which is the national list.
"I prayed and prayed and prayed 'please God give me a kidney,'" she says, but after the sixth person was denied she began to ask to be able to handle whatever came her way.
She talked herself through the waiting period, by reminding herself dialysis wasn't that bad and she was a strong person, so a five-year wait wasn't that bad. "It was," she says, "but you tell yourself anything just to get through it; finally it just happened."
"They told me not to get my hopes up," she explains, remarking it took 15 months for her to receive notification of a possible donor.
Receiving vital life
At 4 p.m., Dec. 3, 2009, Turner received a donated kidney from a woman in Texas.
She received a call around 6 p.m. the day before her surgery, telling her they had a possible match but the person was still on life-support. She had to be at the hospital, Banner Good Samaritan, in Phoenix, by midnight.
As she hurried to pack her suitcase for the hospital, she felt remorse for the person's kidney she was about to receive.
"It was amazing [that] I was about to get a kidney but somewhere in this country there's some family falling apart right now," she says, "but you can't dwell on it because you just know it was supposed to happen."
Turner's donor was a six-out-of-six match, making her a perfect match. Turner never met her savior because she was a deceased donor.
Surgeons put the kidney in her abdomen, not in her back, where the other kidneys are located. This is the only place available, unless the native kidneys are removed. If native kidneys are removed the person's body needs to reclaim the empty space, so it's actually safer to just leave the kidneys in, she says.
Following her $400,000 surgery, Turner's doctor put his hands on her arms and told her, 'I want you to eat, drink water and be merry. Go out and enjoy your new kidney; this is your second chance."
She didn't realize how sick she was until awaking from surgery, and she immediately felt better.
Turner wrote a letter to the donor family, to which the donor's husband replied and told her they had twin 16 year-old daughters.
"It was really sweet," she says, but notes also ironic because she had daughters about the same age and both women were the same age.
Turner says she wouldn't have been so strong if she didn't have the support from her family, especially her husband. Even though he might not have always been present, she says he would tell her, "Remember you're doing this for the kids." He would tell her to "own it." "That was his big thing," she notes, "I had to be in control; I couldn't let it control me."
The main part of the recovery was about six weeks, but Turner says she's not fully recovered.
"You can always reject [the kidney] at anytime and the only problem I have is I really don't have an immune system yet."
Caring for a new life
Although Turner may have had a successful transplant, she now has a life full of even more responsibility. There's a duty that goes along with the transplant, such as being able to pay for medication, dietary restrictions and limited sun exposure.
"If you can't pay [for the medication] then the kidney is going to fail," she explains. She also has to drink three liters of water each day, and can't go out in the sun because the immunosuppressant medication she is prescribed makes her very prone to developingskin cancer.
She also takes her blood pressure and temperature twice a day, and weighs herself each morning.
If her weight goes up by three pounds it can be a sign of rejection because then she's retaining water, if her temperature rises above 99 degrees she has to call the center immediately, and high blood pressure can cause kidney damage.
Following surgery she was taking 40 pills a day, but is now down to 26 pills daily.
"If you don't take [the pills] you'll lose the kidney," she says, noting her immunosuppressant medications are over $3,000 per month, and she pays $600 for a shot she administers to herself twice a week, but TriCare has paid for the medications.
She says it's worth every effort though and with everything she does and the decisions she makes she asks herself, "is this honoring the person who gave me the kidney'".
Passing on more than genes
Currently there is no cure for polycystic kidney disease, and Turner says she is concerned for Morgan, but hopes her experience might give her daughter the upper-hand at dealing with the situation if it ever arises.
"I think she's seen it's hard and awful in the beginning but the longer I was on [dialysis], the better I got. You just have to be positive," she says, noting her biggest challenge was keeping a positive attitude.
"We had a moment while I was in dialysis. I was hysterically crying thinking, 'there's no way I can do this; I'm not going to make it,' and Morgan walked in the room and I [told her] 'I am so sorry. What did I do to you'' and she [said] but I'm alive and I wouldn't be here if you made that decision,'" Turner says, adding, "she was actually comforting me."
"More people need to know they can be living donors," says Turner, who encourages everyone to become an organ donor. "I'm a donor, so I can still donate my heart, liver and lungs."
"Just the fact that they can take an organ out of somebody else and put it in you and it works, and it's like nothing ever happened to you is just a miracle in itself," she says.
To become a living donor, contact a transplant center, such as University Medical Center in Tucson.
"It's made such an impact, in not only mine, but my [children's] and husband's [lives]," she adds.
Turner also suggests everyone have a living will which states their intentions, and notes a person is never too young to have a living will.
"Now I don't take anything for granted," Turner says. "It's not about what you have; it's about the people you're with. It's just enjoying them and knowing I'm going to be there for graduations and weddings and grandchildren."