From PKDCure.org
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We are humbled and grateful for your decision to invest in research, education, advocacy and patient support funded by the PKD Foundation!
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From PKDCure.org
If you or a loved one is affected by PKD, join us at the PKD National Convention 2016 – a special opportunity to:
Learn the latest research about the disease
Connect with others in the PKD community
Become an advocate for your own health
Meet the doctors and researchers dedicated to fighting PKD
Join us to discover ways to manage your or a loved one's health from an all-star assembly of PKD experts.
Registration opens this January!
Living With PKD
From Mission record, Mission City, British Columbia, Canada, by Kevin Mills
Mission’s Jacquelyn Sumpton prepares to start her peritoneal dialysis treatment, which she needs every night. The 29-year-old mother of three has been diagnosed with polycystic kidney disease and needs to find a suitable kidney donor
— Image Credit: Kevin Mills Photos
Walking inside Jacquelyn Sumpton’s house, one’s attention is drawn to the dozens of stacked cardboard boxes marked Baxter. They contain medical supplies that keep Sumpton alive.
The 29-year-old Mission mother of three has been diagnosed with polycystic kidney disease and has to have peritoneal dialysis every night. Her prognosis is for eventual kidney failure, which is fatal. And time is slowly running out. Her only hope is to find a suitable person willing to donate a kidney so she can have a transplant.
As of today, the search is ongoing.
Her ordeal began about 18 months ago while pregnant with her third daughter. A routine blood test came back showing that she was anemic. Further tests revealed that Sumpton had kidney disease. Initially, she was told it was nothing serious to worry about. Doctors advised her to keep having blood tests to monitor the condition.
After Evangeline was born, three weeks early, life went back to normal.
Two months later, the doctor’s office called and told Sumpton she needed to go back for more bloodwork That test revealed that Sumpton’s GFR – which measures how much her kidneys actually filter – was down to nine per cent.
“They said, ‘You need to come in here today. We are putting a catheter in next week; we have set you up an appointment and you are going on dialysis the week after that.’
“Like it is happening now.”
She was horrified by the suddenness of it all.
“I think, a few times, I listened to a song and I just drove around and cried.”
But she is determined to stay upbeat and keep fighting. She doesn’t really have a choice.
“I come at it positive. Because if I don’t, I’ll fall into the deepest depths of depression and my family couldn’t take it and I couldn’t take it. And crawling out would be much harder than staying above it.
“Every day I have to consciously prepare myself and strengthen myself and ready myself and then address the day.”
Sumpton and her husband Sean Magnusson, also 29, have been together since they were in high school. They have three daughters – 10-year-old Genevieve, Aliya, 8, and Evengeline, who is one. Sumpton and Magnusson remain hopeful that a suitable kidney donor can be found.
“We knew from the start that polycystic kidney disease is not curable, so the only way to fix it is to put a new kidney in,” said Magnusson.
The search began immediately as they asked family and friends to get tested for compatibility. But slowly, those potential candidates were ruled out for a variety of reasons.
“The screening process is very thorough. The donor has to be a good match in order to have success.”
Magnusson is currently going through the testing process, hoping he might be a match.
“Our blood type matches and I’m healthy enough,” he said.
But now he has to go through more tests to determine if the tissue is able to co-mingle and not reject.
The waiting game continues.
From The Ellsworth American, Ellsworth, Maine, by Steve Fuller
While many spent Black Friday standing in line at a big-box store looking for an incredible deal on a flat-screen TV, Gerry Mehl spent his day standing on a street corner in downtown Ellsworth looking for a kidney donor for his stepson.
Mark Harrell, 51, lives in Milbridge and has polycystic kidney disease (PKD). It is an inherited genetic disorder that causes fluid-filled cysts to form in kidneys and sometimes other organs, and in many cases leads to kidney failure.
t also causes kidneys to grow in size, and Harrell said his are the size of footballs. The pain leaves him unable to sleep at times.
Harrell does in-home dialysis at his parents’ house in Sorrento four days a week, with each session lasting five to five and a half hours. While dialysis helps, it is neither easy nor the ideal solution.
“The life expectancy of someone on dialysis is half that of someone with a transplanted kidney,” Harrell wrote in a letter to the editor earlier this year.
For months, he and his parents have driven around with decals on their vehicles that read, “KIDNEY DONOR NEEDED 207-422-1119.” The number is Mehl’s, as Harrell does not have reliable phone service where he lives.
As Black Friday drew closer, Mehl decided it would be a good opportunity to share that same message with the large number of people out shopping that day.
He began at around 8:30 a.m. by standing at the corner of Main and High streets, then moved to Walmart for a bit before heading down to the busy corner of State, Main and Water streets.
The sign made of bright yellow posterboard that Mehl held up as cars passed by carried the same message as the decals on his family’s vehicles. After being out on the streets for a few hours, he said he had received a few friendly honks and “quite a few waves.”
Mehl said he does not want to watch his stepson suffer anymore — seeing Harrell get hooked up to the dialysis machine and watching the two needles go in, day after day.
“Until you see it — until you see him on the machine…” Mehl said, emotion evident in his voice. “It’s not pleasant.”
Harrell is on a transplant list, but he is one of more than 1,000 people in Maine waiting for a kidney transplant and one of more than 60,000 around the country. The average wait time for a kidney from someone who has died is three to five years, according to the KidneyLink program.
That is why Harrell and his family are looking for a living donor, and that is why they are being proactive in their search.
“Sitting back and just waiting is not an option for me,” said Harrell, who called his parents his heroes for their assistance. While Mehl was out with the sign on Friday morning, his wife, Sonny, was at home helping her son with his dialysis.
Information about the living donation process can be found by visiting www.mmc.org/living-donation.
Anyone who is interested in becoming a living donor, or knows someone who might be, can contact Mehl by calling 422-1119 or calling the transplant center at Maine Medical Center in Portland directly at (800) 870-5230 and selecting option number four.
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