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Donor-recipient weight and sex mismatch may contribute to kidney transplant failure – EurekAlert (press release)

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Highlights

  • Among deceased donor kidney transplant recipients, those who were >30 kg (66 pounds) heavier than the donor had a 28% higher risk of transplant failure compared with equally weighted donors and recipients.
  • If the kidney was from a smaller donor of the opposite sex, the relative risk of transplant failure was further elevated to 35% for a male receiving a kidney from a female donor and 50% for a female receiving a kidney from a male donor.
  • More than 100,000 people are on the kidney transplant waiting list in the United States.

Washington, DC (March 30, 2017) — A new study indicates that the success of a kidney transplant may rely in part on a kidney donor’s weight and sex, factors that are not typically considered when choosing a recipient for a deceased donor kidney. The findings, which appear in an upcoming issue of the Clinical Journal of the American Society of Nephrology (CJASN), suggest that changes may be needed to current immunology-based protocols that match donors and recipients.

Previous research has shown that there may be a higher risk of kidney transplant failure if a kidney donor is smaller than the recipient, perhaps due to increased strain on the relatively smaller transplanted kidney. Very few studies have investigated outcomes associated with donor and recipient weight mismatch, however. There is also a suggestion that sex mismatch between kidney donor and recipient may lead to worse outcomes post-transplant, but studies have generated conflicting results.

To investigate these issues, a team led by Amanda Miller, MD and Karthik Tennankore, MD (Dalhousie University and the Nova Scotia Health Authority, in Canada) examined whether receiving a kidney transplant from a smaller donor of the opposite sex would impact a recipient’s transplant outcomes. The researchers analyzed information on a cohort of US deceased donor recipients between 2000 and 2014 who were listed in the Scientific Registry of Transplants Recipients. Over a median follow-up of 3.8 years, 21,261 of 115,124 kidney transplant recipients developed transplant failure.

After accounting for other transplant variables, the researchers demonstrated that if a kidney transplant recipient was >30 kg (66 pounds) heavier than the donor, there was a 28% higher risk of transplant failure compared with equally weighted donors and recipients. If the kidney was from a smaller donor of the opposite sex, the relative risk of transplant failure was further elevated to 35% for a male receiving a kidney from a female donor and 50% for a female receiving a kidney from a male donor. This risk is similar to that observed when a recipient receives a kidney transplant from a donor who has diabetes, a known risk factor for kidney failure.

“This study is extremely important because we have shown that when all else is considered, something as simple as the combination of a kidney donor’s weight and sex is associated with a marked increase in kidney transplant failure,” said Dr. Miller. “While more research is required before including these variables in a recipient matching strategy, this study highlights the importance of donor and recipient matching above and beyond current immunology-based protocols.”

In an accompanying editorial, Bethany Foster, MD, MSCE and Indra Gupta, MD (McGill University) noted that while matching for sex and body size in organ allocation algorithms deserves consideration, this idea must be approached with a great deal of caution. It would require complex matching, and special care would have to be taken to avoid disadvantaging larger recipients. “Restricting transplant options by prioritizing sex matching may also lead to longer waiting times,” they wrote. “Females with a large body size would be particularly disadvantaged by an approach that favoured allocation of sex- and body-size matched kidneys.”

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Study co-authors include Bryce Kiberd, MD, Ian Alwayn, MD, and Ayo Odutayo, MD.

Disclosures: The authors reported no financial disclosures.

The article, entitled “Donor-Recipient Absolute Weight and Sex Mismatch and the Risk of Graft Loss in Renal Transplantation,” will appear online at http://cjasn. asnjournals. org/ on March 30, 2017, doi: 10.2215/CJN.07660716.

The editorial, entitled “Donor Quality in the Eye of the Beholder: Interactions Between Non-immunologic Recipient and Donor Factors as Determinants of Graft Survival,” will appear online at http://cjasn. asnjournals. org/ on March 30, 2017.

The content of this article does not reflect the views or opinions of The American Society of Nephrology (ASN). Responsibility for the information and views expressed therein lies entirely with the author(s). ASN does not offer medical advice. All content in ASN publications is for informational purposes only, and is not intended to cover all possible uses, directions, precautions, drug interactions, or adverse effects. This content should not be used during a medical emergency or for the diagnosis or treatment of any medical condition. Please consult your doctor or other qualified health care provider if you have any questions about a medical condition, or before taking any drug, changing your diet or commencing or discontinuing any course of treatment. Do not ignore or delay obtaining professional medical advice because of information accessed through ASN. Call 911 or your doctor for all medical emergencies.

Since 1966, ASN has been leading the fight to prevent, treat, and cure kidney diseases throughout the world by educating health professionals and scientists, advancing research and innovation, communicating new knowledge, and advocating for the highest quality care for patients. ASN has nearly 17,000 members representing 112 countries. For more information, please visit http://www. asn-online. org or contact the society at 202-640-4660.

Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.

Plans to establish child heart transplant programme – Irish Times

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Plans are being made to establish the first Irish heart transplant programme for children, amid safety concerns about current arrangements that see patients transferred to England for their operations.

Officials from the Organ Donation and Transplant Ireland office met medical staff at Our Lady’s Children’s Hospital earlier this month to propose setting up the State’s first paediatric heart transplant programme.

The clinical expertise to set up a programme and carry out the operations now exists in Ireland, according to Prof Jim Egan, director of Organ Donation and Transplant Ireland. Discussions are ongoing with UK authorities about formal arrangements for sharing donated organs between the two jurisdictions, he said.

Although individual paediatric cardiac transplants have been carried out in the Republic in the past, there is no programme and children are generally sent to London or Newcastle for their operations. This is due to the low numbers involved – about a handful a year – and the low number of donor hearts that come available.

Died waiting for transplant

Last month, 10-year-old Gavin Coyne died in England while waiting for a heart transplant, after which his family called for a paediatric transplant unit here.

It has also emerged that children awaiting a transplant in the UK cannot be guaranteed transport within the required time frame due to staffing difficulties in the Air Corps.

Prof Egan said that while no problems had arisen on specific transports, there was a risk and the situation was “challenging”. “If you’re trying to get a child requiring a new heart from Galway to London within four hours and there’s a storm, that’s not easy.”

Fourteen children were referred to the UK last year for heart transplants. The HSE paid the UK’s National Health Service over €500,000 for the service in 2015.

Crumlin hospital would have to be approved as a transplant centre by the Health Products Regulatory Authority before any operations could be performed there. Dr Egan estimated it could take several years before the programme became a reality.

Meanwhile, Minister for Health Simon Harris said proposals for the creation of an opt-out system of consent for organ donations will be brought to Cabinet shortly.

Mr Harris said the proposals, replacing the current system whereby potential donors have to opt in, would be developed as part of an over-arching policy on human tissue. A public consultation on the proposals would be required first and this will be launched before the end of the summer.

Donor opportunities

Very few people die in circumstances where their organs can be used for transplants so it is incumbent on policymakers and doctors to ensure all donor opportunities are followed up and that they lead to transplants, where possible, according to Mr Harris.

Speaking at the launch of Organ Donation Awareness Week, the Minister suggested the donor population could be expanded by extending criteria for donations, extending the age of potential donors and using medical technology to harvest organs not previously considered.

A record 50 kidney transplants were carried out last year using organs provided by living donors. Overall, 280 organ transplants were carried out, the second highest yearly total since the programme began. A further 16 Irish patients, including nine children, received transplants in the UK.

Last year saw 172 kidney transplants, up from 153 in 2015. The highest number was recorded in 2013, when 185 kidney transplants were performed.

Finding deceased donors has become more difficult with the fall in road traffic deaths over recent years, but the living donor programme continues to grow. Last year, there were 77 deceased donors and 50 living donors, up from 33 in 2015.

In addition, 58 liver transplants were carried out at St Vincent’s last year, along with 35 lung transplants and 15 heart transplants at the Mater Hospital.

Organ Donor Awareness Week runs from April 1st to 8th.

Eudora girl organizes fundraiser for friend’s liver transplant – Lawrence Journal World

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Sam Beckner, of Eudora, fights back tears when talking about the fundraising campaign 11-year-old Rylee Griffin organized for her granddaughter Genevieve Kiene.

Her 3-year-old granddaughter has Alagille syndrome, a rare genetic disorder that has her on a liver transplant list, Beckner said. The disease, diagnosed when Genevieve was just months old, has led to a series of associated medical complications from the toddler’s inability to properly digest food and nutrients, including the calcium needed to strengthen bones.

Rylee Griffin, 11, of Eudora, points to the bracelets she is selling to raise money to help the family of 3-year-old Genevieve Kiene pay for an impending liver transplant. Rylee came up with the fundraising idea when she was inspired by how her young friend remained upbeat despite the problems she experiences from her rare genetic liver condition.

Rylee Griffin, 11, of Eudora, points to the bracelets she is selling to raise money to help the family of 3-year-old Genevieve Kiene pay for an impending liver transplant. Rylee came up with the fundraising idea when she was inspired by how her young friend remained upbeat despite the problems she experiences from her rare genetic liver condition.

Recently, Genevieve, the daughter of Amanda and Doug Kiene, of Lawrence, broke an arm when she tripped and fell.

“A year ago, she broke her leg and was in a body cast from the waist down for some time,” Beckner said. “Recently, she broke her arm when she tripped and fell. Through it all, that little girl has such great spirit. She draws people to her because of her sweet nature and spirit. She is such a strong little girl.”

Rylee was one of those captured by that spirit when she saw the toddler in her cast at a fitness class Genevieve’s mother Amanda Kiene teaches for Eudora Parks and Recreation.

“My mom goes to those classes, so I met her there,” she said. “She’s always upbeat and smiling even on a bad day. She was smiling when she had a broken arm. I felt bad for her, so I started raising money for her.”

Rylee’s idea was to sell bracelets with the inscription “Faith over Fear.”

“I had another bracelet fundraiser like that with softball, so I knew I could raise money for her,” she said.

Rylee’s mother, Rachelle Griffin, said they ordered 500 of the bracelets, which they are selling for $5. The money will be given to the Kienes to help with that part of Genevieve’s pending $577,000 transplant surgery the Kienes’ insurance won’t cover, she said.

Eudora Parks and Recreation with have a 5K run/walk fundraiser for Genevieve Kiene on April 29. Registration will start at 8:30 a.m. and the race will start at 9 in Eudora. For more information on the event, call 785-542-3434.

Rylee has already sold 265 bracelets, and her mother is confident she’ll have to order more to satisfy demand and her daughter’s sales abilities. Most of the bracelets thus far have been sold to friends, Griffin said. She and Rylee are now planning on mailing bracelets to those who order them by emailing faithoverfear4gk@gmail.com. More information on the fundraiser, Genevieve and Rylee can be found at the Facebook page Faith over Fear – Bracelet Fundraiser for Genevieve Kiene.

The fundraiser is much appreciated and its “Faith over Fear” message is most appropriate, Beckner said.

“The Bible says when we are in fear, we get in God’s way,” she said. “We really have to stay in faith for Genevieve.”

Contact Douglas County reporter Elvyn Jones

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Hope’s gift of life: Gainesville teen waits on transplant list – Gainesville Times

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An emotional phone call came a day too late for Hope Kienle.

Hope, a 14-year-old at North Hall Middle School, has been on a pre-transplant waiting list for months. She’s set for a multivisceral operation that will give her a new liver, stomach, colon, pancreas and small bowel.

On a Tuesday in January, a call came in to Hope’s mother Amy Kienle about a potential donor match.

But the day before, Hope had been diagnosed with pneumonia, meaning they would have to decline the match.

“That one call changes your life,” she said. “This is the year that my life is going to be on hold.”

At 64 days old, Hope was diagnosed with biliary atresia and portal hypertension in 2003. The liver creates bile, a liquid that breaks down fats and carries waste through the rest of the body for excretion.

Amy Kienle, who is CEO of the Georgia Mountains YMCA, said Hope seemed fine at birth before she was examined at a baby wellness checkup. Hope underwent a liver transplant the next year.

A year and a half ago, however, Hope said she started feeling abdominal pain that made it difficult to breathe or eat.

“It was like being stabbed in the gut,” she said.

A dozen doctors from around the area couldn’t see anything wrong with her, Amy Kienle said, most summing it up as some sort of “stomach bug.”

“We went to probably 10 different doctor’s appointments between here and even her transplant clinic down in Atlanta at Children’s Hospital,” Amy Kienle said.

After an ultrasound, the doctors determined she did not have blood flow to her lower region. Hope underwent another seven surgeries in an effort to reopen all of the clotting in her vein.

“It’s basically a bypass through her liver to try and continue to get that blood to flow,” Amy Kienle said.

About a year ago, internal bleeding caused Hope to start passing out.

“I almost passed out in chorus at school,” Hope said, turning around and grabbing her friend’s shoulder.

Doctors at MedStar Georgetown University Hospital in Washington, D.C. have recommended the “life-saving transplant,” according to the Children’s Organ Transplant Association, which Amy Kienle said is expected to cost $100,000 above insurance coverage.

“They will also remove her spleen, which she has named Bob,” Amy Kienle said.

“Bag of blood,” Hope said.

The spleen has company with her liver named “Figaro,” which was named by her pediatrician.

“I don’t name all of them,” Hope said. “Just the special ones.”

Only four centers in the country do this type of transplant, Amy Kienle said. She and the family expect to be in Washington, D.C., for four to six months.

“Because the small bowel is involved, the follow-up and immediate post-transplant care is critical,” Amy Kienle said.

For an additional six months, she can’t be around people because of a weakened immune system.

“It’s a very emotional situation for us,” Amy Kienle said. “On top of the very emotional part, there’s the logistical part, which includes the financial burden of this. It’s overwhelming.”

Hope’s father Rob Kienle is North Forsyth High School girls lacrosse team coach. The team held a “Night of Hope” during the game, a fundraiser gathering more than $2,500. The money went to the Children’s Organ Transplant Association, which creates an account accessible by the Kienle family for transplant-related expenses.

Giggling with her friends and fiddling with her smartphone, Hope said she’s someone who “always likes to make people happy.” But the situation for her is “scary” and said she has anxiety.

“The waiting is kind of anxious and emotional,” Amy Kienle said.

More than anything, Hope said she wants to play contact sports, which doctors advise against.

The transplant also means being away from school and friends for a year as she recuperates.

“I’m pretty sure they don’t quite understand what’s happening, but they’re probably sad that I’ll be gone,” Hope said.

Amy Kienle praised the North Hall Middle School staff for being supportive with the family preparing for medical stays.

“They said they’d work with her remotely,” she said. “They’d make sure all the work’s online so she has access to that when she’s feeling up to it.”

In school, Hope said she has enjoyed anatomy and biology, and is considering a career in medicine.   

“I know way more than I ever wanted to know about the liver,” Amy Kienle said.

Those wishing to help can send checks or money orders made to the Children’s Organ Transplant Association, with the subject line “In Honor of Team Hope K.” The mailing address is 2501 West COTA Drive, Bloomington, IN 47403.

Credit card donations are also accepted at COTAforTeamHopeK.com.

Amy Kienle also encourages members of the community to consider becoming an organ donor.

Ways of sharing: Worcester cousins wait for life-saving organ transplants – Worcester Telegram

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WORCESTER — The cousins played happily, sharing Oreo cookies and toys in the adjacent room of the apartment on the third floor of a Sigourney Street triple decker.

Meanwhile, their parents talked about something they were sharing: the anxious wait for word that their respective children would be saved by an organ transplant.

“She’s a big support to me just like I am to her,” said Rebecca Williams, 28, of her sister Sheena Sierra, 31. “Even though [the children’s] conditions are very different, we know we have to stick together for these two.”

Carlos Gerald Cecilio Rolon, “Baby Carlos,” was born Sept. 20, 2013, with a congenital heart defect consisting of a small left ventricle and underdeveloped valves and other parts of his heart. He’s had multiple heart procedures and four heart surgeries, which have allowed him to leave the hospital and run and play just like any other preschooler. But he is now in heart failure and on the waiting list for a heart transplant.

His cousin, Rebecca Lucia Pagan-Williams, was born June 13, 2015, and within a few weeks was diagnosed with a rare liver disease called biliary atresia. “Baby Rebecca” is also home and just learning how to walk. But she has cirrhosis of the liver and is on the waiting list for a liver transplant. 

Neither condition is believed to be caused by genetics. 

Meanwhile, Ms. Williams and Ms. Sierra have strengthened their sisterly bond, as their children’s conditions have given them more in common than just blood.

Biliary atresia

Biliary atresia is a disease where either in utero or soon after birth, a child’s bile ducts are either not present or destroyed in the first few weeks of life. This leads to the baby being jaundiced, as bile cannot drain out of the liver into the intestine.

Biliary atresia occurs in about 1 out of 10,000 live births, and is the leading cause of liver transplantation in kids, according to Dr. Scott Elisofon, Medical Director of the Liver Transplant Program at Boston Children’s Hospital.

There are two ways to treat the disease. The first is through surgery – called the Kasai procedure – which has about a 50 percent success rate, according to Dr. Elisofon.

This surgery was done when Baby Rebecca was 6-weeks old and was unsuccessful. This leaves her with the second option: a liver transplant.

Most biliary atresia patients needing a liver transplant will need the transplant by two years of age. The transplant will cure the biliary atresia and transplant recipients can live many years on a transplanted liver, Dr. Elisofon said.

Baby Rebecca turns two in June. It is unclear how long her current liver will hold out.

“She’s jaundiced, having some issues with weight gain and growth, but her liver is still functioning enough to keep her moving along,” Dr. Elisofon said.

Nevertheless, he noted that – although livers can be donated from live donors – there are not enough donated livers to give to everybody in need.

Supporting roles

But the recent bonds between the two sisters strengthened before the biliary atresia diagnosis.

The bonds first strengthened when Ms. Sierra learned that Baby Carlos would be born with a serious heart defect.

“I was real, real lost,” said Ms. Sierra. “But the first thing I thought of was my sister because she had already gone through it.”

Ms. Williams’ first child, Robert, died of a heart condition just eight days after being born in 2004. He didn’t have the same heart condition as Baby Carlos; but many of the emotions and experiences – dealing with doctor’s appointments, weighing surgeries, and more – were similar, Ms. Sierra said.

“Basically, I would say it’s fair to say she gave me a lot of emotional support,” Ms. Sierra said. “And she also helped with the whole part of acceptance.”

But the tables soon turned: an ultrasound revealed that Baby Rebecca also had a heart defect.

“I was just like, ‘not again, I can’t do this again,’” Ms. Williams said. So she called Ms. Sierra. “The same things I told her she was repeating back to me – ‘Don’t give up,’ and all that stuff,” Ms. Williams continued.

Thankfully, Baby Rebecca’s heart condition required monitoring rather than surgical intervention. But a few weeks after birth, Baby Rebecca was diagnosed with biliary atresia.

Ironically, the sisters found themselves in the hospital at the same time as their respective children underwent surgeries – Baby Rebecca with the Kasai procedure and Baby Carlos with his fourth heart surgery.

“It was the luck of the draw,” Ms. Sierra said.

Familiar waiting game

But now both families are waiting for a little luck that organ donors will be found.

Again, they have shared a lot of experiences.

Like Baby Carlos, Baby Rebecca has used a feeding tube, requires frequent hospital visits when her condition worsens – lately a 48-hour stay every four weeks for Baby Rebecca, Ms. Williams said – and receives palliative care.

Both children’s skin is also tinged: Baby Carlos’ skin can be tinged blue due to a lack of circulating oxygen, and Baby Rebecca’s skin is tinged yellow due to jaundice.

“She should be as light as me,” Ms. Williams said.

Both Ms. Williams and Ms. Sierra said they have experienced depression at times during their respective children’s illnesses. And both are trying to manage care of a sick and frequently hospitalized child while also caring for two other healthy children.

But most importantly, Baby Carlos and Baby Rebecca share one thing: they are both fighters, their parents agreed.

“Their sickest days, they still manage to smile,” Ms. Sierra said.

Community support

Ms. Sierra also understands the financial difficulty of having a child who is frequently hospitalized. And she understands that many people want to help.

So the two held a community fundraiser on March 18 to help both children, with a goal of raising a total of $25,000 so that Ms. Williams and Ms. Sierra can stay at their children’s bedside when a hospitalization occurs. Ms. Williams is a full-time mom, Ms. Sierra is a single mother and works nights.

But perhaps the most valuable way that Ms. Sierra has been able to support her sister and niece is by connecting them with a potential donor.

Ms. Williams shared a newspaper article about a Holden woman named Marybeth Sbrogna who was planning on donating a portion of her liver to a child with biliary atresia. Ms. Sierra reached out to Ms. Sbrogna and explained Ms. Williams’ situation, hoping that Ms. Sbrogna could give Ms. Williams hope that a donor would be found for Baby Rebecca.

Then four days before Ms. Sbrogna was scheduled to go into surgery for the transplant, the intended recipient received another donation.

“As soon as I found that out, I knew I was going to donate to Baby Rebecca,” Ms. Sbrogna said. “If I can prevent [Ms. Williams] from having to lose another child, I’ll do anything in my power to do that.”

Ms. Sbrogna said she has been approved as a donor. Baby Rebecca still has to go for further testing, according to Ms. Williams. Dr. Elisofon said the hospital is “in the process of determining whether Ms. Sbrogna’s liver will be a good fit for [Baby] Rebecca.”

Ms. Williams said she is trying not to get too excited, as one never knows what can happen. Another of her sisters was ready to be a donor, but it didn’t work out. Another time baby Rebecca had to refuse a transplant because she was sick with a cold, Ms. Williams said.

But Ms. Williams said she also had some good inspiration to stay positive: her daughter.

“She just keeps on pushing, she’s not giving up on me one bit,” Ms. Williams said.

Allexis Siebrecht, liver transplant recipient, hoping to raise money to go to international transplant games – CBC.ca

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Almost two years after receiving a life-saving liver transplant, 13-year-old Allexis Siebrecht is hoping to represent Manitoba at an international athletic competition for kids who have received organ transplants.

Allexis was born with biliary atresia, a rare liver disease that meant she needed a new liver at age 11.

Allexis Siebrecht at The Hospital for Sick Children in Toronto

Allexis Siebrecht, 11, spent a month recovering from a liver transplant at The hospital for Sick Children, or SickKids, in Toronto.

Before the transplant, the condition meant even things as simple as breathing were difficult for her, but not anymore, Allexis says.

“Before I had my transplant I felt, like, really tired, and I felt like I couldn’t walk up any stairs. I was getting sick a lot,” she said. “And now I’m just active and hyper and running and doing all these sports.”

Last year, she competed in the Canadian Transplant Games and brought home some serious hardware — nine medals in swimming, badminton, tennis and track and field. The wins also meant she qualified for this year’s World Transplant Games in Malaga, Spain, where she would be the only Manitoba competitor.

Now, the family is trying to raise the nearly $6,000 they need to get her there.

Connection to other families

The family has started a GoFundMe campaign to raise $5,675 — around half of the total cost of the trip for Allexis, her sister Jersey and mom Liz Siebrecht.

Liz said going to the Canadian version of the games meant a lot to their family. Allexis still keeps in touch with friends she made there.

“When I saw her compete in the Canadian Transplant Games in Toronto it was … nothing short of phenomenal. I was just, like, so in awe and just, ‘Wow, this is amazing,'” she said.

“It would just be such a great experience to experience it again,” Liz added. “When we went to the Canadian Transplant Games in Toronto, we felt a connection there with the other families who have been through the same things that we have went through as a family.”

Allexis Siebrecht, 11, says liver transplant lets her breathe, run and dance2:14

Allexis is already preparing for the tough competition. To stay in shape, she runs with her dog and swims three times a week, she said.

She says she’s excited for the joy of competition, but also the family time she’d spend at the games.

“It’s nice that you can take your family there, and the families can, like, cheer on the transplant recipients,” she said.

“I’m feeling, like, really, really energetic, and really good, and, like, really, really happy. And I’m looking really, really forward to competing.”

Heart Walk will honor infant transplant recipient – Herald & Review

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MATTOON — Lake Land College will host on April the 2017 East Central Illinois Heart Walk, which will honor Mattoon infant Zale Walk, who is a heart transplant recipient.
Teams of walkers are being sought for the Heart Walk, a fundraising and community outreach event that is part of the American Heart Association’s fight against heart disease and stroke.
“It is a celebration of those who are survivors and a tribute to those we have lost,” said Carol Floyd, field operations director for the association.
Floyd, a former Mattoon resident, said Zale has been chosen as the honorary chairman for this year’s Heart Walk because his parents, Vince and Katie Walk, have a wonderful story to tell. She said this story shows the local impact of the type of research and development that the Heart Association funds.
Before he was born on April 18, Zale’s parents learned that he needed a heart transplant due to a valve defect. A little more than four months after his birth, Zale received his new heart and became the 250th transplant recipient at Ann & Robert H. Lurie Children’s Hospital of Chicago.
“That is his other birthday. That is his heart birthday,” Vince Walk said of the Aug. 22 transplant.
Vince Walk said his son has been doing well, despite a weakened immune system, and has been home since late January. Walk said he has appreciated all the support he and his family have received from the community, including his students at Mattoon High School.
Walk said he also appreciates the Heart Association’s efforts to fund research for treating heart-related ailments and he hopes that Zale’s involvement with the Heart Walk will help bring more attention to these efforts.
“You never know when you are going to be faced with something like that,” Walk said.
The association holds Heart Walks as fundraisers for research, education and awareness programs in the fight against heart disease and stroke, which the association reports are “America’s No. 1 and No. 4 killers.”
Heart Walk teams are comprised of heart disease and stroke survivors, employees from local businesses, and other community members. To receive this year’s Heart Walk T-shirt, walkers are encouraged to raise $100 or more by collecting donations from the community.
Floyd said the Heart Walk has been held indoors at various local venues in past years, but Lake Land’s offer of the use of its campus will provide a great opportunity for an outdoor walk.
“The original intent was to get people outside and moving as a family,” Floyd said. “Exercise and diet are key to heart healthy lifestyles.”
Jean Anne Grunloh, senior executive to Lake Land’s president, said the college is honored to host this year’s Heart Walk.
Grunloh said the campus will provide a beautiful venue for the walk and the West Building’s large Farm Credit Room can provide indoor space for the opening ceremonies and other activities. She added that the walk could be moved into this building’s wide corridors if it rains.
In addition, Grunloh said the Heart Walk will provide a great community service opportunity for Lake Land and its Allied Health Division students.
“We want to promote heart-healthy lifestyles. We serve students and we serve the community, so we though it was appropriate for us to do that,” Grunloh said of hosting the Heart Walk.
Registration is set for noon April 29 at the West Building, followed by the opening ceremonies at 1 p.m. and the walk at 1:30 p.m.
This year’s event will feature half-mile and three-mile walks. Booths at the walk will offer health screenings and more. Other activities will include a tribute wall, a Survivor Lunch provided by Subway, nutritious snacks, “Hands Only CPR” lessons, and team photos.
Subway and Walgreens are national Heart Walk sponsors. Local sponsors include Sarah Bush Lincoln Health Center, First Mid Illinois Bank & Trust, First Mid Illinois Insurance, and Consolidated Communications. Bub McCullough and Renee Fonner of Cromwell Radio Group’s 101.3 WMCI will be the emcees.

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Penn researchers discover test for earlier detection of transplant rejection – EurekAlert (press release)

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PHILADELPHIA– Approximately 30,000 organ transplants occur in the United States each year. However, between 20 and 50 percent–depending on the organ type–of the transplanted organs fail within five years, most often because the recipient’s immune system attacks, or “rejects,” the donated organ. Researchers at the Perelman School of Medicine at the University of Pennsylvania have discovered a method that appears to provide earlier warning of organ transplant rejection compared to standard methods, and requires only a blood test rather than a more invasive and painful needle biopsy. This new method is detailed in a study published today online in the Journal of Clinical Investigation.

If the validity of the new approach for detecting transplant rejection is confirmed in further studies, it could enable doctors to keep transplant recipients healthier and their transplants working longer. A better biomarker would allow doctors to reverse rejection episodes in many of these cases using immunosuppressive drugs.

“There is a critical need for a biomarker that will work across the entire field of transplantation and will allow us to detect rejection and intervene much sooner than we are currently able to,” said lead author Prashanth Vallabhajosyula, MD, an assistant professor of Cardiovascular Surgery. “We think our proposed biomarker platform could fulfill that need.”

In principle, when doctors are able to detect rejection episodes earlier and intervene more effectively, transplant recipients also will be able to use lower maintenance doses of immunosuppressive drugs when rejection is not occurring. That will help them avoid the long-term side effects of these drugs which include cancers, high blood pressure, opportunistic infections, and kidney damage.

The new method involves tiny, capsule-like structures known as exosomes, which normally are secreted from most types of cell. Precisely what exosomes evolved to do isn’t clear, but scientists know that these capsules contain proteins and other molecules from their mother cell that can influence the activities of neighboring cells. Like their mother cells, exosomes have protein markers on their surfaces — often called MHC antigens — that identify them to the immune system as part of the body. Just as donor and host cells usually differ in their MHC markers, so do donor and host exosomes. In this study, the researchers reasoned that donor exosomes’ distinct surface markings would allow these tiny structures to be detected in blood tests and potentially used to predict transplant rejection episodes.

Using a standard laboratory model in which human pancreatic islet cells–key producers of insulin–are transplanted into mice, researchers showed that they could indeed detect and quantify the exosomes from the donated human cells in the blood of the mice. Moreover, when the researchers induced an immune rejection of the transplants in the mice, the detected levels of transplanted-islet exosomes dropped sharply and almost immediately. “The levels of those exosomes in the bloodstream changed dramatically, well before we saw changes in other current clinical markers such as fasting glucose levels,” Vallabhajosyula said.

He added that the reason for the sudden drop isn’t clear–since it happened before there was evident damage to the transplanted islet cells–but probably in part involved a reduced production of the exosomes by the cells.

In an initial exploration of the transplant-exosome strategy in people, the researchers examined stored blood plasma samples from five recipients of transplanted islet cells in an NIH clinical trial, and were able to detect donor exosomes in these samples following the transplants. They also found some preliminary evidence that their falling-exosome measure could be useful in predicting transplant rejection in people. For one patient who experienced a rejection of the transplanted islet cells, a steep drop in the level of donor exosomes was detectable in a blood sample taken six and a half months before the transplanted cells stopped working and the patient developed clinical signs of diabetes.

In further experiments using the human-to-mouse transplant model, the team were able to analyze the contents of donor exosomes in the blood of recipient mice. They found that these islet cell exosomes carried dozens of distinct molecules including insulin and other endocrine hormones — and that the composition of this “cargo” changed during transplant rejection, causing sharp increases, for example, in the levels of several dozen molecules normally found in the exosomes.

Researchers suspect that taking these changes into account could enhance the reliability of a transplant rejection early-warning test, but may be even more helpful in identifying the specific type of injury sustained by the transplant–discriminating, for example, an injury due to transplant rejection from a less worrisome injury due to infection.

“I believe that analyses of exosomes from transplanted organs will ultimately provide a very powerful and unprecedented ability to understand the conditional state of the organ as a whole,” said study senior author Ali Naji, MD, PhD, the J. William White Professor of Surgery.

In a quick test of the breadth of their approach, the researchers showed that they could isolate and detect donor-tissue exosomes in a different type of transplant: kidney transplant, currently the most common type of organ transplant. In this case, the team found that they could isolate and quantify donor-kidney exosomes not just in blood but also in urine, thus potentially enabling urine tests which are even less invasive than blood tests.

The team are now following up with further studies, including studies of their method with different types of transplantation, and studies of specific cargoes of transplant exosomes.

Vallabhajosyula added that, in addition to the potential of the transplant-exosome approach as a diagnostic tool, it may be useful generally in furthering the scientific understanding of transplant biology.

“The ability to isolate and analyze tissue-specific exosomes opens a window to understanding their roles in transplant rejection and transplant tolerance,” he said.

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Additional Penn authors on the study include Laxminarayana Korutla, Andreas Habertheuer, Ming Yu, Susan Rostami, Chao-Xing Yuan, Sanjana Reddy, Chengyang Liu, Varun Korutla, Brigitte Koeberlein, Jennifer Trofe-Clark, and Michael R. Rickels. Funding was provided by the National Institutes of Health (NIH) National Institute of Allergy and Infectious Disease (R21 AI11010-01 ) (U01 DK070430) and the NIH National Institute of Diabetes and Digestive and Kidney Diseases/City of Hope Integrated Islet Distribu¬tion Program (UL1 TR000003)(P30 DK19525).

Penn Medicine is one of the world’s leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania (founded in 1765 as the nation’s first medical school) and the University of Pennsylvania Health System, which together form a $5.3 billion enterprise.

The Perelman School of Medicine has been ranked among the top five medical schools in the United States for the past 18 years, according to U.S. News & World Report‘s survey of research-oriented medical schools. The School is consistently among the nation’s top recipients of funding from the National Institutes of Health, with $373 million awarded in the 2015 fiscal year.

The University of Pennsylvania Health System’s patient care facilities include: The Hospital of the University of Pennsylvania and Penn Presbyterian Medical Center — which are recognized as one of the nation’s top “Honor Roll” hospitals by U.S. News & World Report — Chester County Hospital; Lancaster General Health; Penn Wissahickon Hospice; and Pennsylvania Hospital — the nation’s first hospital, founded in 1751. Additional affiliated inpatient care facilities and services throughout the Philadelphia region include Chestnut Hill Hospital and Good Shepherd Penn Partners, a partnership between Good Shepherd Rehabilitation Network and Penn Medicine.

Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2015, Penn Medicine provided $253.3 million to benefit our community.

Geneseo sophomore prepares for bone marrow transplant – Quad-Cities Online

This was originally published on this site

GENESEO — Trevor Schefsky’s battle of a rare genetic condition began at birth. Now a sophomore at Geneseo High School, that battle likely will make him miss the start of his high school junior year.

Mr. Schefsky, along with his parents, Tony and Lori Schefsky, and hsi brother, Zach, are at the Children’s Hospital in Cincinnati, Ohio, where he is scheduled to receive a bone marrow transplant later this month.

Before that happens, he will undergo chemotherapy to destroy the damaged cells in his bone marrow. Mrs. Schefsky said the process takes four to six months, keeping her son hospitalized until at least July.

His condition, DADA2, is a recessive genetic condition that causes mutations in the CECR1 gene preventing it from correctly encoding the enzyme Adenosine Deaminase 2 (ADA2) that stabilizes the lining of blood vessels.

“Without it, the body attacks its own healthy cells, which, in turn, leads to inflammation, immune deficiency, organ damage and the destruction of bone marrow,” Mrs. Schefsky said.

There is no enzyme replacement therapy available for ADA2 deficiency. Because little is known about the disease, there are relatively few treatments, Mrs. Schefsky said.

Trevor’s journey began shortly after his birth. Until he was 5 years old, his mother said, he suffered from rashes, hives, swollen eyes, high fevers, asthma, pneumonia, joint pain, mouth sores, allergic reactions to antibiotics and his legs “giving out.” She said it is believed he was in remission between the ages of 5 and 12.

“When Trevor was in seventh grade, he had a swollen lymph node in his neck, so we went to our family doctor,” she said. “They did blood work and Trevor’s white blood cells and absolute neutrophils were alarmingly low. We were put in the hands of St. Jude in Peoria.”

Because of his blood levels, he couldn’t attend school and be in public places. He went though many tests in search of a diagnosis; although doctors determined his illness was related to his immune system, no single cause of his illness was found.

He was referred to an immunologist at the Children’s Hospital in Cincinnati, Ohio, where they also did many tests — but reached no diagnosis.

“However, they were treating the low levels he had with infusions,” Mrs. Schefsky said. “As the infusions and medications have never helped with his numbers coming up, they have prevented him from illnesses.” 

Trevor could return to school as an eighth-grader, but was not allowed to play soccer, his favorite sport. He also couldn’t snow ski, play basketball or participate in any contact sports because of an enlarged spleen.

“That was a very hard year for Trevor,” Mrs. Schefsky said. “He lived his life with monthly infusions and daily medications and weekly blood work that showed to always be low. He was hospitalized in Peoria anytime he would run a fever of 99.6 or above.

“Our lives went on hold in the blink of an eye,” she said. “We lived our lives as normal as possible. Trevor was rarely sick and he didn’t like his life being on hold.

“We were able to get soccer approved with a spleen guard,” she said. “He was feeling like life was semi-normal.”

Trevor was selected for a research study at the Children’s Hospital in Cincinnati. About a year later, the family received a phone call with a diagnosis: DADA2.

“No one seems to know very much, but more is being learned every day,” Mrs. Schefsky said.

In November 2016, the family went to Washington, D.C., for the first-ever conference on the disease. They were able to meet families going through the same thing as they were, and the doctors working on a cure.

Mrs. Schefsky said Trevor has reached a point where medications and infusions are not raising his levels.

“His bone marrow is at 40 percent, so we cannot wait any longer,” she said. “It is time for a bone marrow transplant, which will hopefully be a cure for Trevor.

“In all of this — with other hardships and losses — our faith has kept us going and I have always felt God is with us,” she said. “I do not believe God gives us these hard times in our life, but I do completely believe that God is with us in these hard times. He is there in our doctors and, with as rare as a condition that Trevor has, it is a complete miracle that we have a diagnosis at all.

“God is good all the time,” she said. “All the time, God is good.”

Mrs. Schefsky hopes their story encourages others to learn more about DADA2 by visiting dada.org. “TrevStrong” T-shirts also are being sold to support Trevor’s journey.

The T-shirts include scripture from Joshua 1:19 on the back: “Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”     

Shirts may be ordered at trevstrongshirts@gmail.com. Contributions to TrevStrong may be mailed to Central Bank, 101 N. State St., Geneseo, IL 61254, made out to TrevStrong with “Schefsky” in the check memo line.

What’s It Like to go through Bone Marrow Transplant – Rabwah Times (press release) (blog)

This was originally published on this site

In 2014, the last year of my bachelors, I was diagnosed with Myelodysplastic Syndrome, a blood transfusion dependent rare disease causing the red blood cells production to cease. I didn’t know at that time what I would have to go through. I got blood transfusions, tried different medicines but there was no improvement. The only option I was left with was a bone marrow transplant (an expensive procedure with a lot of complications involving high doses of chemotherapy and transplantation of matched bone marrow)

I remained dependent on blood transfusions (2 bags/month) for one and a half years and was then admitted to Armed Forces Bone Marrow Transplant Centre (Combined Military Hospital) Rawalpindi, Pakistan for bone marrow transplant as my elder brother’s bone marrow matched mine. I received a high dose of chemo for 10 days and then bone marrow was transfused through the vein.

I lost my hair and my skin went dark. I came smiling but my smile had gone. I couldn’t eat and vomited whenever I tried to eat. I lost a lot of weight. Those 28 days in a small four walled room were the worst days of my life. I was finally discharged with a lot of medications and finally got to meet my parents. I had to wear a face mask and had to take care as my immunity was zero. I was prone to infections. I had to go for check-ups twice a week. I saw patients who couldn’t get a transplant as they couldn’t find a matched marrow. I saw patients lose their lives in the procedure. I saw patients whose transplant didn’t work and their condition got worse.

I received another chemotherapy as I was still transfusion dependent and they said my bone marrow was going into post-transplant pure red cell aplasia. After some days I got hemorrhagic cystitis as a side effect. There was blood in my urine and I had to go to the restroom every five minutes. Along with that, I got Cytomegalovirus Infection. I was readmitted for 20 more days. More than 30 cannulas pierced my veins. I saw salts and medications dripping through my veins all day long. I was discharged as I got better. I had lost 10 kg of my weight by that time. I used to think why I had accepted this treatment and why I was chosen for this. After some days my blood counts became better and I was no longer dependent on transfusions. With time my counts kept improving. I got my immunizations after 15 months. I also got another complication called Herpes Zoster infection. I got medications for that and I recovered from that too. Now it has been 21 months since the transplant and I have got a job in my field of Medical Laboratory Technology.

During my illness, I lost my father. His prayers kept me alive and strong and made me fight this monstrous disease.
I was lucky to have Major General Tariq Mehmood Satti as my doctor, who was very kind-hearted and caring. With time I saw many of my close friends distance themselves from me. I guess smoking was the only thing that kept us together and I gave it up before my transplant.

What I learned is that if God wants He can save you from so many complications and if He doesn’t, you can’t live for a single second.

The purpose for writing all this is solely to help those who are going through tough times in their lives and not to brag about my sufferings. Just believe in God and remember that He is the only one who can get you out of your tough times.