I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: Zog on February 23, 2010, 01:34:49 PM
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Below is our family's story in an article in Conceive magazine coming out in March. I think our odds were greater than 1 percent, but that all depends on one percent of what-maybe 60% of 7% over a 4 year period. Anyway, enjoy reading.
Kevin
The 1 Percent Miracle
Jennifer Hartzog’s kidneys shut down when she was 12; at 16 doctors told her she’d probably never be able to have a child. But her husband’s refusal to accept that, plus a new kind of kidney dialysis, helped Jennifer become a mom.
By Beth Weinhouse
When I was 12, I lost my kidneys,” says Jennifer Hartzog simply. At the time, Hartzog’s parents didn’t realize that all four of their children had inherited their dad’s kidney disease. The three oldest children had seemed healthy at birth. “The odds of inheriting it were 1 in 4, so when my youngest brother was diagnosed with hydronephrosis—a swelling of the kidneys due to a backup of urine—before he was even born, they didn’t bother checking the rest of us,” Jennifer explains.
Her brother’s condition was corrected immediately, but Jennifer’s kidney reflux wasn’t recognized until much later.
“I’d been really sick, and a neighbor of ours in Asheville [North Carolina] who was a doctor saw me and said, ‘She needs to go to the hospital right away.’ He drove me to the local hospital in the middle of an ice storm, and from there I was flown to a pediatric hospital in Winston-Salem.”
At that point, Jennifer’s parents realized that with two of their children affected by kidney problems, the other two should be checked, too. Sure enough, both boys had also inherited the condition, called congenital VUR (vesicoureteral reflux), although not as advanced as Jennifer’s. “They needed corrective surgery,” Jennifer recalls. “The three of us were in the hospital at the same time.”
The surgery fixed the boys’ conditions, but Jennifer’s ordeal was just beginning. She started kidney dialysis immediately, and had her first transplant—with a kidney donated by her mother--about six months later, when she was 13.
The transplanted organ lasted two years, but then on a church outing Jennifer was climbing a rope when she fell and got bumped in the wrong place, leading to a blood clot that caused the kidney to fail.
People without functioning kidneys have several options. Transplants are the gold standard, but for those who are on waiting lists or don’t qualify, dialysis is lifesaving. There are several types of dialysis. Most centers offer hemodialysis, in which blood is circulated through a machine. In peritoneal dialysis, which can be done at home, the body’s own membranes are used to filter the blood.
Jennifer went on peritoneal dialysis for about two years, then had another transplant. This one also lasted about two years, and then was rejected.
When she was 16, Jennifer started wondering about how her condition would affect her ability to have children. Too embarrassed to ask the doctor herself, she requested that her mother inquire for her. The doctor’s response was straightforward: “She’ll probably never have children.”
“I was devastated,” recalls Jennifer, now 28. She decided to study child development in college. “I’m a teacher now,” she says. “I felt that if I never had kids of my own, at least I would get to hang out with children all day.”
It was while she was a college student and waiting for transplant number three that Jennifer met her future husband, Kevin, now 32, in the school cafeteria. Just one month after they met and started dating, Jennifer got the call that there was a kidney available. It was Kevin who drove her to the hospital, “and he’s been doing stuff like that for me ever since,” she says fondly.
For several years the kidney functioned normally. Jennifer and Kevin married in September 2006. They settled in Mebane, North Carolina, near Durham. And Kevin, who does estimates for a construction company, started doing research into Jennifer’s condition. “He never really believed I wouldn’t be able to have children,” says Jennifer. “He doesn’t take a lot of things at face value until he researches them.” He said, ‘You know there is a possibility that you can have kids. But you need to do it with a transplant, not while you’re on dialysis.’”
Dialysis only replaces a small percentage of kidney function, so the blood still contains high levels of waste products. These wastes can interfere with the menstrual cycle, and with egg production. Only an estimated 1 to 7 percent of women on dialysis are able to get pregnant, and even then about half of the pregnancies end in miscarriage. Almost all of those that continue end with a premature birth, usually because of high blood pressure. But after a transplant, a woman’s fertility can return to normal.
So the couple was distraught when just months after they were married, Jennifer’s third transplant failed. Once again she put herself on a waiting list—this time for a fourth transplant. And the couple decided that as soon as Jennifer received another transplant, they’d try to get pregnant. “That was the plan. To get another transplant and then try to have kids,” says Jennifer.
In the meantime, once again, Jennifer started dialysis. This time, though, she decided to switch to a new and different type of dialysis: home hemodialysis with the NxStage System One. Instead of going to a center three days a week, the hemodialysis—the type usually performed at centers two or three days a week—is done more frequently at home, a gentler process that more closely mimics healthy kidney function. Jennifer had always felt sick and headache-y after in-center dialysis, and was hoping that the new process wouldn’t have the same side effects.
A few months into the new process, Jennifer was disappointed that she
wasn’t feeling any better. In fact, she felt worse. “I was nauseous all the time, throwing up,” she recalls. “Something was wrong.”
One of her nurses suggested she might be pregnant, but Jennifer dismissed the idea. And she couldn’t do a home pregnancy test, because her body doesn’t produce urine.
Frightened by the continuing illness, she went to see her doctor. “My gynecologist was worried that I had something serious, like ovarian cancer, because my blood lab results were so off,” Jennifer recalls. “But when I asked about a pregnancy test, they kept insisting I had to do a urine test first, even though I explained that was
impossible. Finally I got them to give me a blood test to check.”
When the results came back positive, the doctors were as stunned as Jennifer. They did an ultrasound immediately, because they were still worried that something else was wrong. “It turns out I was 10 weeks pregnant,” says Jennifer. “We were in shock for days. Kevin didn’t even believe me until I showed him the pictures.”
The pregnancy had occurred against tremendous odds. And as excited as Jennifer and Kevin were, they were also quite worried. They knew that dialysis pregnancies were considered extremely high risk.
Jennifer began going in for prenatal doctor visits every two weeks. Getting pregnant meant she had to be removed from the transplant waiting list, so she continued receiving dialysis on the NxStage throughout her pregnancy.
In spite of the unusual circumstances, the pregnancy progressed normally. And Kevin focused his research skills on helping his wife control her blood pressure and amniotic fluid level by monitoring her dry weight (the weight after a dialysis session when all the extra fluid in the body has been removed) and how much the baby was
growing week to week.
While she was pregnant, Jennifer had to up her home dialysis hours. “And the further along the pregnancy went, the more I had to do. Towards the end it was nearly four hours a day,” she recalls. She dialysized each evening after Kevin got home from work so the couple could watch television or use their laptops together.
After a fairly uneventful pregnancy, Jennifer and Kevin’s daughter wound up being born three and a half weeks early by emergency c-section. “I was using a catheter in my shoulder for dialysis,” explains Jennifer. “It had to be replaced because it wasn’t flowing well. It turns out there was an infection under the skin, and the procedure to replace the catheter sent the infection into my bloodstream.” Three days later Jennifer nearly went into septic shock, and her blood pressure dropped precipitously. She started having contractions. The monitor showed that the baby was in distress, and the doctors said she needed to have a cesarean immediately. Kevin was terrified he was going to lose them both.
Amazingly, both mother and daughter survived the crisis. Kaylynn was born on April 18, 2008. She weighed just over 6 pounds, and was 19 inches long. . “When she first started crying, the nurses were trying to calm her down. Kevin went over and said, ‘Hey, Kaylynn!’ and she stopped right away.”
Kaylynn is almost two now, and is a happy healthy little girl. “We’ve had her kidneys x-rayed, and they’re fine. The doctors say they should be fine forever,” says Jennifer gratefully.
The new mom now works part-time at a church preschool down the road from her house. “And Kaylynn goes there and plays with her friends while I’m working. When we come home she goes down for a nap, and I have some quiet time,” says Jennifer, describing their daily routine.
Jennifer continues to use the NxStage System One home hemodialysis system, waiting until after Kaylynn goes to bed each evening. And now that she’s not pregnant, she’s feeling pretty good. “No more headaches,” she says triumphantly. “Since I had the baby I’ve felt a whole lot better with home hemodialysis than I ever did with in-center dialysis.”
Jennifer is planning to get back on the transplant list now. And while she and Kevin aren’t planning to actively try for more children, “if it happens again, that’s fine!” For now, she says contentedly, “I’m just so lucky to have such a happy, funny, healthy little girl, and I’m so thankful to all the doctors and nurses at Duke and DaVita who helped us get her here.” Who knows? Someone who beat such long odds to get pregnant once, might be able to do it again.
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Thanks for sharing the story - I loved reading it! I remember when they told us Jenna would never have children when she was diagnosed at 15, but attitudes have changed in the last 9 years. When Jennifer first started posting on IHD I was amazed to hear she was pregnant. It's wonderful that everything worked out so well!
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We were amazed as well. Jenn stopped taking birth control when her transplant started to fail earlier that year. The birth control pill, Yaz, may have actually helped kill her transplant, but we will never know. The timing of losing transplants is a mystery.
You know they tell transplant patients to take birth control because if they want to conceive they need to change their transplant meds to older more trusted (for pregnancy at least) medications. It was a good thing Jenn stopped taking them, because Kaylynn was a nice surprise.
Did Jenna have reflux also?
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Jenna has what they call a non-neurogenic neurogenic bladder, meaning it has no nerve sensitivity so she never felt fullness, and even at low volume she had high pressure - so those 2 things combined caused pressure to damage her kidneys. She had her bladder made larger using bowel material so the pressure is lower, and she has to self cath 4 times a day. I know many kids that have had reflux. Too bad Jennifer's was not caught earlier.
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Zog, that's an inspiring story!
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Loved it!
Troy
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Beautiful, inspiring story! Thank you for sharing and I can't wait to meet you guys and see that special girl!
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Very nice story...... I wish you all well