From The Salem News, MA, BY ETHAN FORMAN
Danvers sisters a perfect match in kidney transplant
Susan Kelly Vitale, 56, of Danvers, has been battling polycystic kidney disease since she was 19, her older sister says.
The disease is hereditary, and it leads to cysts in the kidneys, causing symptoms such as high blood pressure, chronic pain and kidney stones.
Her sister, Danvers resident Judy Procopio, 59, said Vitale, a hairdresser at Noggins Hair Salon in Middleton, has lived for many years with PKD, using blood pressure and other medications to control symptoms. But when her kidney function began to fail, and the cysts attacked her liver and pancreas, she needed a transplant.
Turns out, Procopio, who has been tested and does not have the gene for PKD, was a perfect match for her older sister when it came to donating a kidney.
"It's almost like I'm giving her [her own] kidney because it's such a perfect match for her," said Procopio, who works in airport operations for JetBlue in Boston.
On Feb. 16, both sisters underwent five hours of surgery at Tufts Medical Center in Boston; both are now home recuperating.
"After my kidney was successfully removed, [Susan] was in the adjoining room waiting to receive it," Procopio said in an email. "The transplant team is second to none in the country, and we thank them for their expertise in their field."
Procopio said the result of the transplant surgery is her sister will be able to avoid dialysis treatments, and she will be able to lead a normal, productive life.
Procopio said she and her sister are close. In all, there are five siblings, including two older sisters and a brother.
The sisters grew up in Danvers with three other siblings — two older sisters and a brother — but then their father, who worked for General Electric, relocated the family to Rutland, Vermont, where Susan and Judy attended high school. They eventually moved back to Danvers and they live about two miles apart now.
Procopio said the sisters are also grateful for financial help they received through a Gofundme.com page Vitale set up to help with medical and other bills not covered by insurance. Any remaining funds after expenses are paid will be donated to the National Kidney Association, Procopio said.
Dialysis News
The day the truck arrived to deliver my husband John’s home dialysis supplies, our quality of life changed for the better. As family, we had been completely overwhelmed by his kidney failure; he had to make three, 100-mile trips to a dialysis center each week, to be hooked up to a machine for up to six hours. After visiting the center, he was drained, lethargic, and worn out. With home dialysis, our family could be a family again.
My husband was diagnosed with hereditary polycystic kidney disease (PKD) and knew he eventually would go into kidney failure. Most people are unaware that their kidneys have failed until they wind up in the hospital – which means they lose out on a comprehensive discussion of their treatment options. Patients, my husband being one, are often encouraged to do their dialysis at a center. I strongly believe that patients should receive accurate information about their option to dialyze in the comfort of their home. Research shows 40 to 50 percent of patients will choose home dialysis when educated about this option.
According to a report released this week by Matrix Global Advisors, patient education is just one of the obstacles to home dialysis – many of which are tied to federal policies – that can be easily overcome. Patients who understand their options and prefer to dialyze at home are often deterred by the requirement of a care partner for home hemodialysis. For low-income single patients in particular, the cost of hiring a care partner often prevents the use of home dialysis.
Medicare provides some assistance to dialysis patients, but gaps in coverage prevent greater use of home dialysis. Today, Medicare limits home hemodialysis sessions to three sessions per week, despite evidence that more frequent sessions would be beneficial. In addition, Medicare does not cover the full cost of training a patient to dialyze at home and requires patients to visit their physicians in-person once a month, even when the patient is in good health.
This Congress, policymakers have the chance to improve access to home dialysis.
In 2015, the House introduced a comprehensive telemedicine bill – H.R. 2948, the Medicare Telehealth Parity Act – would make it easier for home dialysis patients to use telemedicine connections and remote patient monitoring to connect with their physicians.
The Senate has made similar progress through the Senate Finance Chronic Care Working Group, which released some options to improve the care and treatment of Medicare beneficiaries, such as those with kidney failure. The options included expanding access to home dialysis treatment through the use of telemedicine. Hundreds of patient groups responded to these options; the responses even listed other ways to improve access to safe dialysis treatment, including education on dialysis options, care partner issues, and training. The Committee’s proposal is a start. It may be one of the few bipartisan measures on which Congress could act that would make significant improvements to the care received by dialysis patients when it is finalized later this year.
As a former member of Congress and caregiver to a dialysis patient, I urge both the House and the Senate to support policies to increase access to home treatments. I am glad John was fortunate enough to have this option. It significantly improved his and our family’s quality of life.
PKD Fundraising
A MAN who is due to receive a kidney from his mother this summer has created a comic strip of his story ahead of a charity cycle ride to Paris.
Dan Norcott, 41, who lives with wife Ali and son Arthur in Wymeswold, has Polycystic Kidney Disease, the same condition that unfortunately led to the death of his father Malcolm in 2004.
Since his diagnosis at the age of 21, Dan's kidney function has coasted slowly downwards so later this year his mother Jenny will donate one of her kidneys.
But before the operation, cycling enthusiast Dan has decided to pedal 388 miles from his home in Wymeswold to Paris in 10 days to raise money for The Leicester Kidney Care Appeal.
Dan's longtime friends Rich Moss and Andy Stafford will be joining him on the trip in May, and their online JustGiving page has already raised more than £4,200.
And to raise awareness of their fund-raising efforts, Dan has created a comic strip with the help of Terry Wiley which tells his story.
"Dad had two transplants, and many years of dialysis, which he found incredibly difficult," said Dan.
"Mum had to learn how to operate the machine housed in a portable building in our back garden, and for many years acted as his nurse as well as his wife.
"Still, he was determined to enjoy life, and we escaped to the countryside whenever we could.
"I was moved to tears recently when a picture of him halfway up a mountain, post-transplant, was shown as inspiration during a presentation at a recent chronic kidney disease information day. He set a fine example that I intend to follow.
"Various complications with the second transplant led to an early death at the age of 59.
"His was an unpleasant death but he died with incredible grace and fortitude.
"In short, I'm very lucky. I'm ill but a treatment is available, and I have someone willing to give me a gift that could extend my healthy life by a decade or more.
"Many people at this stage experience great pain, but I have very little, and my symptoms are mostly just a drowsiness and general lack of pep.
"When I was young, my dad told me about a long bike ride he???d been on with his friend Frank, where they tried to get all the way round the coast of England.
"I've always wanted to go on such an extended trip, but never thought I would have the time.
"When I recently learned that my transplant was so close, I decided that I should grasp the opportunity while I still had it, and use it to try and do some good."
To donate, please visit pedallingtoparis.com
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