All posts by Editor - Transplant Families

SRTR hosting information webinar for all transplant patients and families

Here’s a chance for transplant families to give their feedback.  Join SRTR webinar about the tiered outcome assessments and their new website. Register today:
The Scientific Registry of Transplant Recipients (SRTR) plans to host an informational webinar  for all patients and families.  This includes our living donors too.  The webinar is about the new SRTR website and tiered outcome assessment systems. SRTR’s goals are to describe the motivation behind the changes, compare and contrast the 3-tier and 5-tier outcome assessment methodologies, and address common questions about the two systems. Information will be provided as to how interested parties may submit feedback regarding the website and outcome assessment systems. Space is limited, pre-register for the event today.

Transplant Families Resource Fair in Phoenix

Transplant Families Resource Fair in Phoenix
Phoenix, AZ––Transplant families will be hosting a community resource fair, April 4th.

This free event will be held 5:30 to 7:30 pm that Tuesday. The resource fair is intended to inform transplant families and the public of the many services available to them throughout the community. It will be located at Phoenix Children’s hospital with assistance from the Amanda Hope Rainbow Angels.

The event will feature booths and displays representing various community resources and programs that can provide assistance, advice and support.  Families will be awarded several different raffles by our generous booth partners.

Participating organizations will include Phoenix Children’s HospitalAmanda Hope Rainbow Angels, HopeKids, Children’s Organ Transplant Association, Make A Wish Arizona, Donate Life Arizona, Be the Match, New Life Society, Transplant Team AZ, National Kidney Foundation of Arizona, Mended Little Hearts of Phoenix and many more.  Our main speaker will be from dermatology and will cover sun and skin safety for transplant patients.  Resources will be available to cover topics such as camp, scholarships and many other programs.

Transplant families wants to give families every resource available and a chance to connect with other families living this very unique life.  We want the chance to celebrate each other and the tremendous gift of life that our kids have been afforded.

To attend the event, you must be an Arizona transplant family.  For more information on attendance please RSVP via contact@transplantfamilies.org or if you are a HopeKids member via their website.  If you are interested in providing information to transplant families at this event or would like to hold an event like this in your area, please contact Melissa McQueen at melissa@transplantfamilies.org.

Transplant Resource fair flyer 2017 Final

 

Fundraiser planned for Pineville girl recovering from transplant

Miranda Klein , mklein@thetowntalk.com

9:34 a.m. CT Jan. 20, 2017

A “Star Wars”-themed fundraiser benefiting the Pineville girl recovering from a lifesaving transplant is planned for Feb. 4.

The T.R.E.E. House Children’s Museum is hosting “A Force for Kylie” to raise money for one of their regular visitors and volunteers. In addition to regular museum exhibits, there will be themed activities and a cosplay group at the museum from 10 a.m. to noon. Admission funds will be donated to help cover medical and travel expenses for Kylie Bush and her family.

Kylie, who turns 11 next month, was matched with organs shortly after Christmas. She waited about six years for a small intestine, a liver and pancreas as her situation became more critical. She continues to recover at Nebraska Medicine in Omaha, Nebraska.

Kylie is battling difficult pain and anxiety, but she finds some comfort in letters and care packages from friends back home and pet therapy, her sister Kaylee Walleser said. She has a tutor to work with while she’s away from J.I. Barron Elementary School.

“She’s very adamant about keeping up with her class,” Kaylee said. “She doesn’t want to be held back.”

Kylie’s mom, Joan Broussard shares daily glimpses into her daughter’s journey and determination with hundreds of supporters on Facebook.

“The pain in her eyes kills me, but I know it’s the step to get to where she needs to be,” Broussard wrote Monday. “Perseverance is a word we hear at Barron a lot. She is the perfect example of faith, determination, perseverance and strength.”

Broussard said it was a “rough” week as doctors continued to monitor blood clots in Kylie’s heart and lungs, fluid in her abdominal cavity and a fever that can be associated with rejection.

“We are praying for no rejection and strength for her to cope with this pain,” Broussard said Thursday.

Source: Fundraiser planned for Pineville girl recovering from transplant

How Aries Merritt recovered from a kidney transplant to reach the Olympic trials

PHOTOGRAPHY BY BILL FRAKES

REPORTING BY JIM CAPLE

07/10/16

Aries Merritt won the gold medal in the 110 hurdles at the 2012 Olympics. He set the world record in the event a month later. As impressive as that is, what he has been able to overcome over the past three years is even more amazing.

Merritt’s kidneys began failing in 2013 to the point that they were functioning at only 10 percent. Last September, he underwent a kidney transplant. Despite that, he is still competing, still hurdling and is still among the best in the world.

You may have your attention fixed on Michael Phelps, Simone Biles and Usain Bolt at the upcoming Olympics, but Merritt is someone you had better keep in your mind, because his story is incredible and inspiring.

When Merritt received the news that his kidneys were functioning at just 10 percent due to a genetic disorder, he feared that he never would run again. Well, briefly. Because this is a man who was not about to give in — to anything.

 

Read more at Source: How Aries Merritt recovered from a kidney transplant to reach the Olympic trials

Morbidity from CMV Infection in Transplant Patients

Panelists: Harry Erba, MD, PhD, University of Alabama at Birmingham; Roy Chemaly, MD, MPH, MD Anderson Cancer Center; Mark Levis, MD, PhD, Sidney Kimmel Comprehensive Cancer Center talk about CMV and how it used to effect transplant patients and the therapies they can use now to help.

Published Online: Wednesday, Jan 25, 2017

Source: Morbidity from CMV Infection in Transplant Patients

Kidney chains now an option for children waiting for transplant in Seattle | KOMO

SEATTLE — Belinda Hudson and her son Nigel Dalton were first in the hospital together 19 years ago. That was for his birth. This time, it’s his rebirth.

Nigel was born with irreversible kidney damage and recently started dialysis.

“He was becoming increasingly fatigued, having a poor appetite and there was just changes in him physically,” Belinda described.

She wanted to donate a kidney to her son, but she wasn’t compatible.

“I was pretty devastated,” she said. “I thought, ‘I’m the mom. What do you mean? I don’t understand.'”

Instead of going onto the waiting list – which can take years – the family joined a kidney chain where a living donor gives a kidney to a stranger and then gets a kidney for a loved one. Belinda’s donated kidney went to a patient at UCLA.

Their chain lasted three weeks and involved 28 surgeries across the country, with 14 donors and 14 recipients. It was a first for Seattle Children’s.

“It’s been an amazing breakthrough that’s been more rapidly adopted in adult transplantation. We were excited to be able to offer it and enroll our patients in that program,” said Dr. Patrick Healey, the transplant division chief at Children’s.

Nigel’s kidney came from a young man in California.

“I won’t have to do dialysis anymore,” Nigel said. “And hopefully i’m going to live a life I’ve already been living.”

And it starts on his 19th birthday, thanks to the gift of life and love.

“You’re never getting another gift from me again,” Belinda laughed. “This is it. This is your lifetime gift.”

“I’ll take it,” Nigel said.

Source: Kidney chains now an option for children waiting for transplant in Seattle | KOMO

More Lives Saved: New Milestone Reached in 2016

This was originally published on this site

There was a new milestone reached in 2016: more than 33,600 organ transplants were performed in the U.S. This number sets a new record number of U.S. transplants for the fourth year in a row. The 2016 milestone represents an 8.5 percent increase in total number of organ transplants, and an almost 20 percent increase … Continue reading More Lives Saved: New Milestone Reached in 2016 »

The post More Lives Saved: New Milestone Reached in 2016 appeared first on Donate Life America.

Girl, 10, in need of lung transplant moves doctor to tears after thanking him for being her ‘star’ – ITV News

A young girl in desperate need of a lung transplant has moved her doctor to tears after writing him a letter thanking him for his help and being her “star”.

Last Christmas Elle Grace Morris – who suffers from cystic fibrosis – was told that she might not live for another year, but thanks to her dedicated medical team she is able to thank them for their help this Christmas.

“Without your help I don’t know if I’d be here today, thank you” the 10-year-old wrote in her card to Dr Ravi Jayaram, a consultant paediatrician at the Countess of Chester Hospital.

After wiping away his tears, Dr Jayaram – who has been treating Elle since she was diagnosed at 15 months old – promises to “write to Santa for those new lungs for you”.

Read more from Source: Girl, 10, in need of lung transplant moves doctor to tears after thanking him for being her ‘star’ – ITV News

Is There a Better Way to Allocate Organs to Transplant Patients?

Imagine you are waiting for a kidney transplant. A kidney becomes available. Now you and your doctor must make a stark choice: accept it, even if the quality level is not ideal, or hold out for a better one that might last longer.

Read more from Source: Is There a Better Way to Allocate Organs to Transplant Patients?

Compound protects transplanted hearts from rejection | Cornell Chronicle

ByJoseph BonnerDr. Jamil Azzi/Brigham and Women’s Hospital

The left image shows a section of a transplanted heart in a mouse that was given only CTLA4-Ig, a standard anti-rejection therapy. A large number of infiltrating immune cells are visible by their blue-staining nuclei, showing that the heart is undergoing rejection. Heart muscle cell nuclei are also stained blue. The right image shows a section of a transplanted heart in a mouse given CTLA4-Ig together with the immunoproteasome inhibitor DPLG3. The heart looks normal. There are almost no immune cells, only nuclei of heart muscle.

An experimental drug that blocks the activation of an immune cell component effectively prevented rejection of heart transplants in mice, according to new research from scientists at Weill Cornell Medicine and Brigham and Women’s Hospital.

The findings, published Dec. 12 in Proceedings of the National Academy of Sciences, describe a compound developed by Weill Cornell Medicine investigators that inhibits cellular structures called immunoproteasomes while sparing closely related structures called constitutive proteasomes. Proteasomes help cells regulate their behavior by breaking down regulatory proteins. Constitutive proteasomes are found in all cells, while immunoproteasomes are expressed chiefly in cells of the immune system.

Read more at Source: Compound protects transplanted hearts from rejection | Cornell Chronicle