I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on August 28, 2008, 10:42:15 AM
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08/28/2008
Nevada girl and her family pray for a miracle
By:Marlys Barker , Tri-County Times
Every day, 17 people die waiting for an organ transplant.
Ashlie Duit's mom, Cindy, can recite that fact and many others about organ donation and kidney disease the way most of us recite our ABCs and telephone numbers.
Since her oldest daughter, Ashlie, was born in 1987, Cindy and her husband, Devin, have been living with one reality - a daughter who was born with hypoplasia/dysplasia. In simple terms, hypoplasia/dysplasia means both of Ashlie's own kidneys had problems and would not sustain her.
Two weeks after she turned 5, Ashlie received a cadaver kidney. It wasn't a good match, as the kidney came with a virus that attacked her body. She began rejecting it within a week and was only able to keep the kidney for a year-and-a-half.
Two days before she turned 7, Ashlie had her second kidney transplant, this time from a live donor, her mother, who was a very close match to her. Ashlie said her mother would have donated her kidney from the beginning, but was having health issues of her own and wasn't able to donate until later.
When it came, though, the gift from her mother was perfect. "We were a very close match, and she (Ashlie) instantly became healthy," her mother said, hesitating a little on the word "healthy," because for Ashlie, that term has always had some conditions.
Throughout grade school and middle school, Ashlie thrived. Smaller in size than most other kids her age, Ashlie made up for her tiny frame with a bubbly personality and infectious smile, things she still has as a young adult. According to her mother, while going through school, she suffered occasionally from the same things most kids get: colds, coughs, ear infections and such. Overall, life was good in the Duit household, which in addition to Ashlie and her mom and dad, includes Ashlie's younger sister, Brittany, who is starting her senior year at Nevada High School this fall.
It was good until...
In her sophomore year of high school, Ashlie became ill - ill in the way most other kids don't. This time it was her kidney.
According to her mother, Ashlie's creatinine, a level that tells how the kidney is functioning, began to elevate that year, and the Prograff (her anti-rejection medication) level began to fluctuate, first high, then low.
"After a year, we were able to convince a renal doctor to do a biopsy of her kidney. We were sure it was rejection; however, she had toxicity in the kidney from the Prograff, and it had caused damage," Cindy explained.
That damage put Ashlie in renal failure, and she is in the last stage of renal failure at this time.
Her mother said if the damage had been reversible, Ashlie could have retained her kidney for another 10 to 20 years or more, but during her junior year, they found out it was too late to reverse the damage and that to go on living, Ashlie was going to need another transplant.
Her final years of high school were tough, with Ashlie missing lots of school. But, she had a goal - to graduate with her classmates. She accomplished that goal and thanks her high school teachers for allowing her to make that milestone happen.
Ashlie had another major goal after high school - to attend college and become a nurse. "I really want to be a nurse so bad," she said, adding that her own problems throughout her life have made her want to become a nurse and help others the way so many others have helped her.
She began college in the fall of 2006, while going in and out of the hospital and continuing to lose more of her kidney function. But staying in college was important for another reason. "She must stay a full-time student in order to retain our medical insurance to pay for the mounting costs," Cindy said.
Last fall, Ashlie was transferred to Mayo Clinic, and Cindy said the people there have been wonderful in working with the family on Ashlie's care.
Dialysis starts
Cindy explains that typically, it is best to have a transplant without dialysis, because the transplant is usually more successful. In Ashlie's past, both transplants were done without the need for dialysis beforehand.
"We had hoped to find a donor before dialysis needed to begin," Cindy said. But Ashlie's quality of life was deteriorating and dialysis was necessary.
They first attempted "peritoneal dialysis," which Cindy explains is done by placing a tube in the abdominal lining and at night, Dialysate is pumped in and left in all day to cleanse the body of toxins. The following night, she said, dialysate would be pumped out and new would be placed in. This type of dialysis, which would have saved Ashlie trips to a clinic and the time involved there, didn't work.
"Ashlie became very ill with this, and we traveled to Mayo to discover the reason ... there isn't enough space because of all the scar tissue from multiple prior surgeries," Cindy said.
Next, Ashlie tried "hemodialysis," which is done in the arm by diverting the artery in the arm into the vein there, her mother explained. "Typically, the vein can continue to have enough blood flow to continue down the arm and sustain the hand," Cindy said. But Ashlie wasn't lucky with this method either. When the family arrived home from Mayo, where the procedure - a fistula - had been done, Ashlie complained of a cold hand. "The next morning we rushed her back to Mayo as her hand and fingers were purple and ice cold. She didn't have enough blood flow to her hand and fingers. It is called 'steal syndrome,'" her mother said. Ashlie had to be taken into surgery to save her hand, which, thankfully, is now O.K.
Her mother said trying to start these types of dialysis was a very intense time for the family. "We were running out of options for dialysis. Needless to say, she couldn't have a fistula. Her veins were too small."
A week later, Cindy said the family was told that Ashlie would need a catheter port placed by her neck and that she needed to begin "hemodialysis" immediately after it was implanted.
Since April, Ashlie has been doing the hemodialysis in Ames three mornings a week. Ashlie said when she goes to the Ames dialysis center; they hook up two tubes that are both located at the port near her neck. "Through one tube the blood goes out to be cleaned and then it's put back in through the other tube," she said, noting it takes about two-and-a-half hours each time she goes.
Her reality
At 20 years of age, Ashlie is one of just a few younger people who report to the dialysis center in Ames for treatment. She hates the way her schedule is inconvenienced by the treatments, yet she knows how important it is to have them.
"I've gotten more used to it (the dialysis). At the beginning, I was mad because I didn't want to do it," she said.
Ashlie presently works for a life care company that helps older people to stay living independently in their own apartments. This is a great opportunity for her to utilize some of the nursing schooling she's been getting. But it's tough to keep up a regular schedule, because the dialysis can make her very tired and sometimes sick.
"I have my good days and my bad days," she said, explaining that on her bad days she feels kind of like she's been "hit by a bus."
The reality Ashlie faces now is that she needs a new kidney, and preferably one from a live donor, which would greatly improve her chances of survival.
She's been on the donor list at Mayo for six to seven months, but it can take five to seven years before a kidney is found. Still, the family hopes and prays to receive a call at any time. "We are 'on call' 24/7 and should the call come, we must be ready to leave immediately. We keep our cell phones on day and night, and they never leave our side."
Ashlie's family is also doing other things to try to find a donor as quickly as possible. While Ashlie's father is the wrong blood type for Ashlie, Devin and Ashlie are listed as a "paired match" donation for a kidney swap, where Devin would give a kidney to another recipient that he matched if that recipient had a willing donor who was compatible to Ashlie but not to the recipient.
There is also a Web site called "matchingdonors.com," where strangers who want to donate can contact a family if they are interested. Cindy said the family had one response from that Web site, but the person wasn't able to pass all the required medical testing prior to a transplant.
Ashlie's blood type is B positive, so she needs a donor whose blood type is from the B or O blood types-Rh factor.
Ashlie said if a person is willing to be a donor, they must undergo two rounds of blood testing for antibodies, then travel to Mayo for two days of more "invasive" type testing - a stress test and ultrasound to name a few. If they made it through all the testing, a surgery date would be set.
Waiting for the miracle they are hoping for is hard on Ashlie and all the members of her family.
"For anyone who is going through the process of needing an organ, there is always the possibility of death before one is found. It is never far from thought, something a person learns to deal with and continues going through daily life," Cindy said.
Even Ashlie thinks about the possibility of dying young. "Lately when I go to dialysis, it's really hard. You know that for some of these people, dialysis is the last thing. I just want to live. I want to get married." Ashlie has plans for a career and family. She said she doesn't know that she'll ever be able to have children herself, but she definitely wants to adopt. She's excited about all that life could still hold for her.
Ashlie said she hates that the reality of what could happen to her is so hard on her family. "It's really hard on my sister. When she was younger, she would always stay at my grandparents, and she wasn't there to know a lot (about what was happening). Now that she's older, she does go through it with us and it's a lot harder on her."
And with her parents, Ashlie is equally aware of all they go through. She appreciates that her family tries to find humor in everything as a way to pick up their spirits and keep going, but she knows that financially, it's been very hard for her parents. "They're still paying for my medical bills from way back."
Cindy said humor has been the one thing that has helped the family get through many tough times. She also values her family's strong faith in God, and the wonderful family, friends, co-workers, their pastor and church members who help them every day.
Cindy said she and her husband have always considered Ashley's life a miracle, knowing that her chances of survival were only 0.1 percent. Now they are wondering if they will get to witness another miracle - finding a live donor.
"Our hope is to find a donor so Ashlie can become healthy again and continue her college education successfully and go on with her adult life," Cindy said.
If this story reaches the right person - maybe even a person within these local communities - who could be a potential donor for Ashlie, it would mean the world to the Duit family. Because for Ashlie, the one thing she knows better than anything else is this: "I just want to live."
http://www.midiowanews.com/site/tab8.cfm?newsid=20095678&BRD=2700&PAG=461&dept_id=554431&rfi=6