From Readers Digest, Jen Babakhan
How I’ve Outlived My Incurable Kidney Disease for 30 Years
Susan Flesia was only 28 years old when she was hit with chest pain severe enough to send her to the emergency room. The health-conscious mother of two was in shock—could she be having a heart attack? The answer was no, but the news still wasn’t good.
At the ER, Flesia’s chest pain turned out to be indigestion, but diagnostic blood screens suggested she had a kidney infection. Her primary care doctor admitted her for further testing, and an ultrasound revealed that Flesia’s kidneys and liver were covered in cysts. “The doctor told me I had polycystic kidney disease. I didn’t even know what that was.”
She soon found out: Polycystic kidney disease is an incurable genetic disorder that causes fluid-filled cysts to cover and enlarge the kidneys. Symptoms include high blood pressure, cysts on the liver, and blood vessel complications in the brain and heart. Watch for the signs that your kidneys could be in big trouble.
A bodybuilder, Flesia ran her own personal-training business; her healthy lifestyle helped her avoid complications until her early 40s when her blood pressure began to climb. Medication helped, and for the next ten years, her life seemed relatively normal. Then she realized that her rib cage was expanding. “I noticed because I’m small in the waist. My rib cage was getting thicker and I was tired and nauseated. I began having back pain, and difficulty breathing.”
An ultrasound showed that her kidneys had bulged in size, and now weighed six pounds each. A normal kidney weighs a quarter to half a pound. Thousands of cysts covered the organs, and they were pressing into her lungs, making breathing difficult. As her kidneys became more diseased, their ability to cleanse her blood plummeted.
Eventually, her doctors recommended that she have her kidneys removed. The first one came out in 2016; the second a year later. Flesia started peritoneal dialysis after the first surgery: She underwent a regular procedure that allowed the blood vessels in the lining of her abdomen to filter and cleanse her blood.
Unfortunately, the peritoneal approach didn’t work very long for Flesia: She felt nauseated during the treatment and vomited several times a day. She ended up switching to another method called hemodialysis, in which blood is routed out of the body and through a machine that filters out waste products before sending it back into the body. Make sure you’re not making any of these innocent mistakes that can cause kidney problems.
Typically patients have to go to a hospital or dialysis center three or four times a week to undergo this four-hour-long procedure. But Flesia’s doctors offered her another option: She could be trained to do her own dialysis at home using the NxStage machine from Fresenius Kidney Care. The NxStage machine allows the now-56-year-old Flesia the flexibility of scheduling her treatments when they’re convenient.
“My friends watch me insert these huge needles into my treatment sites, and they can’t believe I’m able to do it—but I don’t have a choice.” Ultimately, Flesia hopes to get a kidney transplant; the Rhode Island resident went on the state’s waiting list in 2015, she tells Reader’s Digest. “The average wait time is six to seven years. I’m lucky that I have the option of dialysis until I can get a kidney.”
Thirty years after her diagnosis, Flesia continues to live life to the fullest. “I love gardening at home and going on motorcycle rides. I’m kind of stubborn. I’m not going to let this get the best of me. It’s all in how you deal with it. Plus, I have an amazing support system.” Her advice to other patients is that the little things matter. “Keep every one of your dialysis appointments and listen to your doctors. Do what they say, and watch your diet. Diet plays such a big role.” Watch for these silent signs you might have a kidney infection.
Need Kidneys
From Military Times, By: Natalie Gross
“I don’t want to die.”
Phyllis Obeng Dadzie said the words quietly, but with a slight chuckle, as though it was obvious. She was sitting with her husband, Navy Chief Petty Officer Charles Agyeilarbi, in a small room at Walter Reed National Military Medical Center, shivering under a pink winter coat that covered her small frame.
Seven months ago, Dadzie, a native of Ghana, was a healthy 25-year-old, pregnant with the couple’s second child. But in August, complications during the third trimester and the birth of their son, Prince Charles, sent Dadzie into stage 5 kidney disease and, ultimately, to Walter Reed, where she now gets dialysis three times a week.
She’s fully aware of what could happen if she doesn’t get a new kidney soon, but she’s not ready to give up — not with a 2-year-old and a baby at home who need their mom.
“I just want to get a new kidney and live (for) my kids again,” she said. “That’s all that I pray for every day.”
Dadzie is one of about 380 patients at Walter Reed who are on the national kidney transplant list — from troops and military dependents in their young twenties to military retirees who’ve dedicated their lives to service.
But with a national list 100,000 people long, getting a kidney that way could take years, said nurse Vilda Desgoutte-Brown, the hospital’s living donor coordinator. In the meantime, dialysis could cause heart, lung and thyroid problems, or other complications, such as diabetes.
“A lot of people end up dying on the machine,” she said.
Touched by stories like Dadzie’s, Desgoutte-Brown is trying to spread the word about her beloved patients, in hopes that others in the military community would consider coming forward as potential donors.
After all, you only need one healthy kidney to live a normal life, she said, pointing out that some people are only born with one and may never know it.
“(Kidney donation) really doesn’t affect you unless you gain a lot of weight and stop taking care of yourself as before,” Desgoutte-Brown said. “It’s really no difference at all.”
Another Walter Reed patient, retired Air Force Lt. Col. Ruth Grayson Scott, was ready to be an organ donor herself 30 years ago when her brother needed a new kidney. But when subsequent tests revealed she, too, was born with the same genetic polycystic kidney disease that killed their father and uncle, she knew there was a possibility she’d eventually need a new kidney herself.
But she expected to have more time — not for the disease to affect her liver, as well as her kidneys, by the time she was 44. She got a double transplant in April 2017, but 11 months later, her new kidney stopped working, started free floating in her abdomen and almost killed her.
After that, her hopes were “completely destroyed,” she said — only to be dashed again recently when a potential donor was disqualified near the end of the matching process.
Like Dadzie, Scott also comes to the hospital three times a week for dialysis, traveling 30 miles each way to and from her home in Virginia. It’s not exactly the type of traveling she’d wanted to do with her husband in their retirement.
“I really want a kidney,” said Scott, now 57. “This is not quite the life we planned.”
Patients at Walter Reed have been trying to help each other find donors, posting pleas to their followers on social media, said Dadzie. She’s been especially grateful for that, since her family lives in Ghana and the couple has no friends in Maryland, where they were transferred from Japan in November for Dadzie’s treatment.
Desgoutte-Brown said ideally, enough donors would come forward that the hospital could start an internal chain or swap. For example, if two patients have friends who are willing to donate kidneys but aren’t matches, the patients could potentially trade donors, depending on blood type and other factors.
The main thing is that donors be healthy, with no history of cancer, diabetes and other diseases and genetic disorders that could be passed to a recipient, she said.
“I think for me, just seeing these young people — mothers and soldiers and stuff like that — was really kind of touching to me,” said Desgoutte-Brown. “I was just like, ‘My God, we have to try to do something.’”
Anyone interested in learning more about becoming a donor can email her at vilda.o.desgoutte-brown.civ@mail.mil.
Meanwhile, Dadzie is doing her best to cope with the difficulties and take care of her kids despite the constant pain.
“I’m a strong woman,” she said. “We are just looking for a God-saving soul to just help me to live again.”
Artificial Kidneys
From Healio, by Jennifer Byrne
Portable artificial kidney offers convenience
“When it comes to innovation, compared to the rest of the health care industry, [the] dialysis industry is literally stagnant over the last few decades,” Suresha Venkataraya, CEO of AWAK Technologies, told Nephrology News & Issues. “The current treatment modalities are not only disruptive to the patient’s daily routine but also impose a heavy cost burden on patients, payers and the caregivers.”
Venkataraya cited disruptions to the patient’s daily routine, prohibitive cost, limits on patient mobility and issues with fluid logistics and the bulkiness of traditional PD devices as some of the problems he hopes the AWAK PD will eliminate. He said the device’s sorbent technology, which enables reuse of the PD fluid, will “provide a therapy which will be more convenient and enhance patients’ quality of life to a greater extent compared to currently available technologies.”
Venkataraya said the goal for the device is to allow patients to comply with therapy in a way that does not disrupt their lifestyle.
“More compliance to [their] therapy regime results in healthy individuals, which in turn helps reduce health care cost[s] and contribute[s] to the economy,” he added.
The AWAK device is also more sustainable than traditional PD because it consumes less water.
Early trial shows promise
The portable artificial kidney, through sorbent technology, removes uremic toxins from the used dialysis fluid and regenerates fresh fluid. This makes the device less cumbersome than current modalities for patients which typically require 10 L to 12 L (22 pounds to 26 pounds) of fluid per session.
The AWAK PD was granted breakthrough device designation based on the results of a first-in-human safety trial completed in October 2018 at the Singapore General Hospital.
According to Marjorie Foo, MBChB, MRCP, FRCP, FAMS, head and senior consultant in the department of renal medicine at Singapore General Hospital and director of the hospital’s PD program, the safety trial found a consistent reduction of solutes, including urea, creatinine, phosphate and beta 2-microglobulin, as well as electrolytes over the 3 days on AWAK therapy with no adverse events.
The study results indicate that “the regenerated solution using sorbent technology is safe and [the] outcome of dialysis with the AWAK solution using tidal-based dialysis was comparable in terms of solute removal with conventional dialysis,” Foo said.
The results showing the AWAK PD could efficiently remove the accumulation of toxins indicate that the 650,000 U.S. patients with ESRD could soon have a PD option that allows them to travel.
“I think the future is bright for this wearable [device] as it is safe to carry around, compact and delivers the treatment as needed,” Foo said.
While Venkatarya believes an artificial implantable kidney is still 10 to 20 years away, he hopes to see this portable PD device become a standard of care.
The next phase of the trial entails a detailed efficacy study comparing the AWAK PD with conventional dialysis.
No comments:
Post a Comment