From Northern Wyoming Daily News, By Karla Pomeroy, Editor
24 hours after receiving the call, Worland woman awakes with a new kidney
WORLAND - It's a call you hope and pray will come someday, sooner rather than later, but when it does, it sends a flood of emotions through you - fear, joy and shock.
Those were the emotions that Karen Surat of Worland felt Nov. 9, when she got a call from her transplant coordinator at the University of Colorado Hospital in Denver. Surat had been on the kidney transplant list at the University of Colorado Hospital in Denver for about five years
Surat was born with a defective gene which causes polycystic kidney disease (PKD). According to mayoclinic.org, "Polycystic kidney disease (PKD) is an inherited disorder in which clusters of cysts develop primarily within your kidneys. Cysts are noncancerous round sacs containing water-like fluid. The cysts vary in size and, as they accumulate more fluid, they can grow very large." The most common effects of PKD are kidney failure and high blood pressure.
While Surat was born with the gene that caused polycystic kidney disease, she didn't become aware of the disease until 2008 when x-rays were taken of her lungs during a bout with pneumonia. The x-rays captured part of her kidneys, revealing the cysts.
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On Nov. 9, 2016, Surat was working on finishing the final pages of layout at the Northern Wyoming Daily News. She gets a call about 5 p.m. from her kidney transplant coordinator. They had a possible match for a kidney and they would call her back.
"I wasn't expecting it. The average wait time for that type of donor is so much longer. I figured I would end up on dialysis before getting that type of transplant. It was kind of a shock. I was happy, but I was scared [at the thought of facing major surgery]," Surat said.
She went home after the initial call and her coordinator called her back and wanted Surat to start heading to Denver. They had a virtual match in the computer, the donor matched her antibodies.
They wanted to run the blood work to see if it was a match that would allow for the surgery. Testing would take about six hours. Surat, and her sister Lisa Monroney, headed to Denver knowing that they might get a call that the blood work wasn't a match and she'd be turning around heading home.
About the time they reached Cheyenne, they got the call that it was a good match and they'd be waiting for her.
They arrived at the hospital about 3 a.m. and they immediately began prepping Surat for surgery, including doing more blood work. They had to wait for her new kidney to arrive. Surgery began about 1 p.m. She was out of recovery and in her hospital room about 24 hours after getting the initial call.
Following the surgery, Surat found herself again dealing with a wide range of emotions, including sadness and sympathy for the donor's family. She said, I feel bad that they had to lose a family member in order for my life to be saved." [Read more]
Judy Stanwick began to cry when she heard a kidney was available.
Her tears welled up not from joy, but from fear.
On that April evening in 1998, Stanwick was performing peritoneal dialysis at her home when the phone rang. This treatment for kidney failure uses the lining of a patient's belly to filter their blood inside their body. Stanwick, who was diagnosed with kidney failure two years earlier, was comfortable with the process.
"I didn't want to go. I wasn't going to do it," Stanwick said of the kidney transplant. She immediately called her brother, Doug.
Polycystic kidney disease runs in Stanwick's family. Her mother, her brother and her daughter have all been diagnosed with the disease, which causes clusters of cysts to develop in the kidneys. Stanwick's brother received a kidney transplant, while her 37-year-old daughter's kidney function is normal.
"(Doug) basically told me if I didn't get in the car and go he was going to kick my butt," recalled Stanwick, who began the five-hour drive to the University of Iowa Transplant Center in Iowa City knowing there were two patients ahead of her on the transplant list. "As we pulled into the parking lot, they called and said, 'You are a go. Where are you?'"
A few hours later, Stanwick was lying on the operating room table watching medical personnel unpack her new kidney from a small cooler. The organ came from a 39-year-old man who was killed in a motorcycle crash. Stanwick spent five days in the hospital.
"It was weird for me because they brought a cart for the flowers and I walked all the way through and out," she said.
More than 18 years later, the 57-year-old's transplanted kidney is functioning normally in spite of a battle with breast cancer and the rapid onset of Guillain-Barre syndrome two years ago. Guillain-Barre is a potentially life-threatening condition that causes the immune system to attack the nerves resulting in paralysis. [Read more]
Three months ago, Deb Kelleher donated one of her kidneys to someone on the B.C. transplant waitlist. In 2009, Dave McIntosh received a new kidney from a live donor.
— Image Credit: Nora O'Malley
Her friends hosted a going away party for “Sidney the Kidney”; the name Kelleher lovingly dubbed her organ. They brought her gifts of love, joy and canned kidney beans.
It was a whimsical sendoff to be sure, but in all sincerity, Kelleher’s altruistic gesture triggered a domino chain of kidney transplants that saved seven lives, all on the same day.
“My mom was diagnosed with kidney cancer [in 2013] and I just immediately thought I’d give her one of mine. I didn’t know anything about it. I knew that I have O negative blood so I can give blood to anybody so I figured I can give my kidney to anybody,” Kelleher told the Westerly News over coffee.
“But it turned out my mom didn’t need my kidney. They just took her bad one out. I didn’t take my name off the offering list. Then I was on the internet one day and I just stumbled on this article about the live organ donor program that I went on to. The last little blurb at the end of the article said this dedicated team of surgeons most treasured find is an O type person who will give a kidney and doesn’t need a kidney,” she said.
“I thought well that kind of sounds like me. I have O blood. I have a kidney. I don’t need two. So I phoned them and they sent me a package. That was in March of 2015.”
By Sept. 1, the doctors heading up the Kidney Paired Donation (KPD) program had found a match.
Kelleher said the scariest part of the whole process was navigating Vancouver.
“That was the biggest stress. Getting around in the city. Giving the organ was minor compared to that,” said Kelleher. “I have no regrets. If I had three [kidneys] I would do it again.”
She didn’t care to know who got her kidney. She said she didn’t want to feel obliged to someone and she didn’t want someone to feel obliged to her.
“If you’ve decided to give, that’s as far as you can go as far as thinking,” she said.
Kelleher realizes that organ donation is a very personal decision. While she would never coax someone into donating an organ, she did encourage people to check-in with B.C. Transplant to see if they have registered their decision on the official donor registry.
According to the Kidney Foundation of Canada, the median wait time for British Columbians in line for a kidney transplant is 4.8 years. Ucluetian Dave McIntosh, who suffered from polycystic kidney disease, had to wait six years before receiving his new organ in 2009.
“It was like a having a fog in front of you. You don’t think very well,” said McIntosh of his ailment.
Now in his early seventies, the fog has lifted. McIntosh’s health is revived and he is free from the shackles of routine kidney dialysis.
“It’s a miracle,” he said. “The transplant changed my life.”
Kelleher feels different as well.
“My being, my essence has shifted. But a good shift,” she said.
Kelleher bought a special post organ donation bracelet for herself, which she clasp on her left wrist.
The piece of jewellery weighs roughly five-ounces... The same weight as a healthy kidney.
From Belfast Telegraph, Northern Ireland, By Allan Preston
A Ballymena mother donating two vital organs to save her four-year-old boy's life has promised him: "This is going to be your year."
Sarah Lamont (36) said she hasn't doubted for a second her decision to donate both a kidney and part of her liver to her son Joe.
Born with a rare condition - autosomal recessive polycystic kidney disease - Joe was forced to have his kidneys removed and has depended on constant dialysis ever since.
He has also developed advanced liver disease, which could prove life threatening without a transplant.
His mother told the Belfast Telegraph she could wait no longer to get him the help he needs.
"In June, Joe had been on the transplant list for over a year and there was no sign of him getting a call," she said.
"Meanwhile, we saw other wee kids getting kidneys from their mum or dad. It's life changing for them."
Needing dialysis three times a week, Sarah said Joe "just wasn't getting a chance to do what wee boys do."
Sarah said she wants nothing more than to take Joe on holiday to Disneyland and to attend mainstream school, but is worried that delays caused by his illness will make it too hard for him to catch up with other children his own age.
After having a "brainwave" to contact Birmingham's Children's Hospital last year, Sarah is feeling optimistic.
The liver transplant is planned for January 25, with the kidney operation in the following months when both mother and son have recovered.
"I'll be all right, I'm a very optimistic person. If I could do it today I would, the sooner the better," said Sarah.
"I would never have doubts. Joe's been through so much, there's been a few times where I've been told he's not going to make it and he always does."
Despite the health problems Joe has had to suffer, his mum said she was inspired by his happy personality. [Read more]
From WTVR, Channel 6 CBS Affiliate, Richmond, VA
A husband is preparing to give his wife the gift of life the day before their 20th wedding anniversary. Scott Chafian is donating his kidney to his wife Cindy.
Simple actions such as cooking dinner or going out to Busch Gardens are hard or impossible for Cindy because she was diagnosed with polycystic kidney disease in her 20s. It’s a disease where excessive cyst growth will shut down her kidneys.
“It is very difficult,” Cindy told WTKR. “When I started out I wanted to do home dialysis. Peritoneal, where I had a little bit more control. I’ve been through two years of one surgery after another.”
Scott said watching his wife get increasingly sicker as she grew older was tough. “It’s devastating because of course you always see your spouse before you and to not have anything, it was just a feeling of helplessness.”
So Scott took action to help his wife the only way he knew he could by donating his kidney. He remembers when their doctor told him it would work.
“Did you just say I’m a match to my wife and this is going to work? And it was and for me such a wonderful experience to have this opportunity to something for the person I love more than anybody,” said Scott.
That was six years ago. But Cindy wasn’t ready. She told Scott she was not going to take his kidney. Then, in 2016, Cindy’s health took a turn for the worse.
“I hit kind of rock bottom and I looked at him and I said okay, I’m ready,” said Cindy.
The Chafians learned the date of their transplant surgery five days before Christmas. [Read more]
Needs Gift of Life
Dorilyn Harrison of Modesto has an unorthodox way of searching for an organ donation needed to save her life.
When her friends and family members are out on the roads and freeways, magnetic signs on their automobiles make an appeal to potential donors.
The signs read: “Wanted – Kidney donor. Young mother needs a kidney.” Any potential donors are invited to contact Harrison by phone or email.
Harrison said a couple of people have responded and passed an initial organ donor screening, although they apparently were not a match. She received another text Wednesday.
Harrison, 47, is on the list for a kidney transplant using a cadaver organ but faces a waiting time of four to seven years. Many patients with kidney failure don’t survive that long, so the Modesto mom has taken unusual measures to find an altruistic live donor.
The former assistant principal at Grace Davis High School began searching three years ago when her kidney function dropped to 20 percent. Her kidney function has since declined to 9 percent, beyond the level at which most patients are on dialysis.
Harrison has polycystic kidney disease. She has extremely enlarged kidneys, the size of footballs, that are painful and make it hard for her to breathe. Along with receiving a new kidney, a transplant surgery would remove her enlarged kidneys.
“I can’t get sick with the flu, because it could put me in complete kidney failure,” she said.
Harrison learned she had the hereditary disease when she was 18 years old, after her father came down with kidney problems. An uncle and aunt have the same disease.
Her father lived for 14 years with a kidney donated by his son’s girlfriend but died from complications in September 2015. Harrison’s kidneys began failing when she was 40, forcing her to stop working at Davis High in 2010.
More than a year ago, her mother came up with the idea for the magnetic signs, which were ordered from a business online. About 25 signs are on vehicles in the Modesto area, the Bay Area and Southern California.
Her husband, Thor Harrison, said other motorists slow down to take pictures of the sign stuck to the tailgate of his pickup, and a few have asked him to pull over to talk. A producer for a San Francisco news station saw one of the signs in traffic in the Bay Area, and Harrison’s story ran on television this month.
“The hard part is she does not want to ask people for a kidney,” Thor Harrison said. “If there is an altruistic person who wants to donate, here is a great candidate.”
Dorilyn Harrison also has summoned her courage to contact people who put donor profiles on www.matchingdonors.com, a nonprofit organization that helps find altruistic living donors for patients who need transplants.
“I have a real hard time asking for help, especially for something that would affect another person’s life so dramatically,” she said. “I know I have to do it, but at the same time it is very difficult.”
Candidates are screened
People who respond to the signs are referred to an online screening done by University of California, San Francisco, Medical Center, where Harrison would undergo transplant surgery. The screening determines if they are healthy enough to serve as a donor, then tests are run on good candidates to see if they are a match. [Read more]
A grassroots effort to find a kidney has made a Colerain Township woman’s name known across the city.
She’s Ann.
You see signs emblazoned with her message: “A Kidney for Ann” at many major intersections in Kenwood, College Hill, Western Hills, Colerain Township... wherever she thinks they will catch the eye of a motorist idling at a red light or driving by. She’s hoping one of them has a kidney they are willing to donate to keep her alive.
Veronica Ann Mills has polycystic kidney disease, which is genetic. Fluid-filled sacs form in the kidneys and interfere with filtration. Her grandmother lived into her 90s before she saw any evidence of the problem, and Mills, 53, says she expected the same kind of timeline. So the diagnosis in October that her PKD had kicked in with a vengeance and she was facing kidney failure came as a real shock. For now, the most frustrating symptom of her disease is exhaustion.
“I see changes, and I can’t keep going as long as I used to,” she said. And there is nausea, as well. “My body is trying to adjust,” she said.
She has limited options: dialysis or a transplant. Both have drawbacks. Both can keep her alive. She says only about 2.5 percent of people, once they know they need a transplant, are able to find a kidney donor before dialysis, and Mills is determined to be part of that 2.5 percent.
Because her disease is genetic, her blood relatives are not eligible donors. Her husband has been medically excluded.
Not content to sit on a list and wait, she did what she usually does: came up with a plan.
“It’s up to me to find a donor,” she said.
“I am not a person who asks for help easily,” she said. “And I am not a person to share personal details about my health. But I want to be here for my children. I am going to do whatever I can to do that. To be here. I am not ready to die. I had my pity party, and now I am going to figure out what to do.”
First, she and her family handed out fliers at their parish, St. John Church Dry Ridge. They felt they needed to reach more people and the fliers were expensive.
She’s had unwitting help from a lot of politicians. From both sides of the political aisle, at grassroots and national political levels, candidates have unknowingly aided her campaign for a donor. She has, in fact, turned a part of that political world inside out. Literally.
She uses their discarded political signs.
When her family decided to mount a sign campaign, they began recycling all the election signs they could find. The family turns the signs inside out and Ann hand letters her simple message on the blank flip sides of the sign and then reuses the wires that support those signs as she posts her placards for kidney donors. [Read more]
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