Tag Archives: Featured

Early Intervention Resources

We’ve added two more links in our resources section.  Each one of them are related to early intervention resources.

Many families with younger children being transplanted often need these resources to help their children catch up from delays caused by their diagnosis previous to transplant.   Every state requires that early intervention be required thanks to the  Individuals with Disabilities Education Act (IDEA) –Part C.  Evaluation is free of charge.  And services are often free of charge also.  If you have a child under the age of 6 and you suspect they might have delays, you should check out the following links for more information on the services available.

Early Intervention – Concerned about your child’s early childhood development as a result of transplant?  Check this link to contact your states early intervention contact.
Center for Parent Information and Resources – This link does a great job of explaining what early intervention is and describes who is eligible.

Early diagnosis campaign might help pulmonary hypertension patients avoid transplant

**Thank you to the Pulmonary Hypertension Association for educating us and working with us to make this article possible.

April 17th 2015 2:20 pm

With so many people on the transplant list and a shortage of viable organs, transplant is as much about preventing transplant as it is about being listed and ultimately receiving that precious gift of life.  Patients and caregivers want to make sure they have exhausted every option before being listed.  Transplant is an amazing gift, but it is NOT a cure.  Transplant comes with its own list of side effects, medications and long-term issues.

We are starting a series of articles in partnership with other organizations that will educate and inform our families.  The series will provide information that will help you ask your medical staff the right questions as you consider transplant as a treatment option.  If transplant is the option for you, we hope to provide useful information that helps you throughout your transplant journey.

Education empowers patients and families, making you a vital part of your medical team as a patient/parent advocate.  Your medical team will appreciate the fact that you want to learn everything you can about your child’s condition.  It is a part of the family-centered care model that many hospitals are adopting and by which many are rated nationally.

Our first article is written in partnership with the Pulmonary Hypertension Association (PHA).  Pulmonary Hypertension can eventually lead to lung or heart/lung transplant.  The Pulmonary Hypertension Association defines pulmonary hypertension (PH) as “a rare, debilitating disease in which high blood pressure in the arteries of the lungs can lead to right heart failure.”

PHA was established in 1991 by four women, and has evolved into a membership association of more than 16,000.  The organization’s website offers a multitude of educational materials for patients, caregivers and healthcare providers.  PHA offers many ways to engage with your clinicians, whether by finding a doctor or giving feedback to your specialty pharmacy.  PHA’s devotion to research and finding cutting-edge technology in the field of PH is consistent with its mission of “find[ing] ways to prevent and cure pulmonary hypertension (PH), and to provide hope for the pulmonary hypertension community through support, education, research, advocacy and awareness.”

Early Diagnosis

Early diagnosis is critical to getting the right treatment for you child.  With early diagnosis your family will be able to connect with the right experts and explore many different therapies that can be used before transplantation is considered.  PHA has started an Early Diagnosis Campaign which is an organization-wide effort to eliminate diagnostic delays & reduce the average time to accurate PH diagnosis and appropriate treatment.

Once a patient has been diagnosed, PHA has an “Empowered Patient Online Toolkit”  that offers educational materials, questions to ask, documents to keep, travel resources and a place to document medical information.  In addition PHA’s website – PHAssociation.org – lists all available treatments, how to contact doctors who specialize in PH, providing feedback to your specialty pharmacy and insurance resources to help you cover the costs involved.

Once diagnosed, PHA has an “Empowered Patient Online Toolkit”  that offers educational materials, questions to ask, documents to keep, travel resources and a place to document medical information.  In addition, PHA’s website – PHAssociation.org – lists all available treatment options, resources on how to contact doctors who specialize in PH, or to provide feedback to your specialty pharmacy, as well as insurance resources to help you cover the costs involved.

Transplant

If all other options have been exhausted and transplant is your current option, PHA has many wonderful resources to help your family through the transplant journey.  One of the best parts about PHA’s support is that it is truly family-centered, including support for the caregiver, the patient and the siblings.

Wonderful resources, including the document “Transplant and your child: Front Listing to New Lungs,” will take you through the entire transplant process, while you’ll find answers to many of questions you might have during the transplantation process in “Answers about Lung Transplantation for Pulmonary Hypertension.”  Finally some great tips and hints for parents from PHA’s Scientific Leadership Council are available in “Transplant and Pulmonary Hypertension: Information for Parents.”

PHA’s website is a tremendous resource for any family dealing with Pulmonary Hypertension and especially for those considering transplant.  We encourage you to explore PHAssociation.org, to request their printed materials, and to connect with PHA’s community.

 

The Technology That Will Eliminate the Need for Organ Donors – NOVA Next

Eight years ago, Stephen and Amelie Trice learned that their three-year-old son Troupe needed a new heart. After many months of perplexing symptoms—small size, low energy, enlarged liver—Troupe was diagnosed with restrictive cardiomyopathy, an extremely rare and deadly condition in which the heart is unable to relax between heartbeats.

There is no cure and very few treatments. Despite his doctors’ attempts to manage his condition with medicine, Troupe’s health deteriorated. Afraid of losing their son, the Trices sought the expertise of a cardiologist at Children’s Hospital in Atlanta. The doctor sat the worried parents down and over two hours explained that Troupe needed a heart transplant. Amelie recalls, “With a diagnosis of certain death, our only option was to cross our fingers that we were going to get more time with a new heart.” The Trices went back home to Alabama, explained what they had learned as best they could to Troupe, and waited. Two months later, the couple were out with friends when they got the call.

Read more via The Technology That Will Eliminate the Need for Organ Donors.

The Science Behind a Crazy 6-Way Kidney Exchange | WIRED

KATIE M. PALMER SCIENCE
03.09.15
2:43 PM

IN A SURGERY worthy of the most convoluted Grey’s Anatomy plot, surgeons at California Pacific Medical Center in San Francisco completed a two-day, six-way kidney transplant late last week. Five surgeons and dozens of anesthesiologists and nurses daisy-chained 12 patients together in the West Coast’s largest paired transplant ever.

Patients who need a new kidney are often subjugated to years-long waiting lists, biding their time until an organ becomes available, typically from a recently deceased donor. But living transplants, from donors who give a kidney to a relative or friend, are far more likely to succeed—and can last twice as long before another transplant is needed. The problem is, that selfless donor’s kidney might not be a solid match for its intended recipient. That’s why transplant centers are increasingly working to build chains of donors and recipients: Pairing those who would have donated to a friend with a stranger, so everybody gets the kidney that’s right for them. And with more than 100,000 people on the kidney waiting list, a chain of paired donations can have a far greater impact on that backlog than a single, closed-loop swap would.

On Friday, surgeons successfully completed a six-way paired kidney exchange at California Pacific Medical Center. Sutter Health/California Pacific Medical Center

Today, about a third of the 16,000 annual kidney transplants come from living donors, a number that keeps rising through paired procedures. Getting six people to donate their kidney to a complete stranger is a remarkable feat of altruism. But it’s also a testament to biomedical technology: The testing and treatments that make kidney transplants so successful, and the algorithms doctors and patients use to find the right match—or, in this case, six matches.

Read more via The Science Behind a Crazy 6-Way Kidney Exchange | WIRED.

Transplant Leads to Nuptials

Added by  on February 13, 2015.

This love story begins with a generous woman giving one of her kidneys to a stranger and that grateful man reciprocating by offering her his heart. First he accepted, later she accepted and now they plan to marry. What started out as a transplant lead to nuptials!

This all began with Ashley McIntyre’s mother listening to a radio program in January 2014. She heard about a 25 year-old man who had 12 hours of dialysis each week while working full-time as an electrician. He suffered from an inflammatory disease affecting the kidneys. Danny Robinson needed a transplant and there was no match for him in his family.

As bad as it can be with needing a kidney, Danny’s story was bigger than that. In 2011 his house burned down and the year after that Danny’s father died as a result of brain cancer.

Ashley overheard her mother discussing Danny’s story with her grandmother. Her mother commented that because she had Type-O blood, which is the universal donor, she would give him a kidney if it were not for her health issues. Ashley considered the series of events in Danny’s life and the fact that she, too, had Type-O blood with no health problems, decided to see if she was a match.

Read more via Transplant Leads to Nuptials.

3D printing of organs for transplant ‘step closer’ – The Scotsman

by JOHN-PAUL HOLDEN
Published on the 11 February 2015 11:09

3D PRINTING of transplant organs “on demand” has moved a step closer thanks to research by a team of scientists in Scotland.

Experts at Edinburgh’s Heriot-Watt University are using a unique 3D bio-printer they have developed in combination with a new gel made from synthetic DNA to enable production of ­artificial organs.

They said the technique could be used to help ensure copies of body parts including the heart, liver and kidneys are available immediately, potentially bringing an end to waiting times of years for lifesaving transplant operations.

The technology works by mixing cells with the DNA gel before they are “3D printed” into the form of a human organ using Heriot-Watt’s device.

Members of the Edinburgh team, led by Professor Rory Duncan and Dr Will Shu, said the key challenge was finding a suitable “scaffold” to support live cells in 3D which would not be rejected by transplant recipients.

They said earlier efforts to develop the technology had always been hampered by the need to use harmful heating, salt-based and UV processes when solidifying support substances such as collagen or seaweed extract for 3D printing.

The new DNA gel, which has been perfected by scientists at Tsinghua University in Beijing, marks a major breakthrough, they added.

Efforts will now focus on refining the technology, although it is th

Read more via 3D printing of organs for transplant ‘step closer’ – The Scotsman.

Organ transplants show ‘remarkable record of achievement:’ JAMA study – Health – CBC News

CBC News Posted: Jan 28, 2015 11:00 AM ET Last Updated: Jan 28, 2015 12:05 PM ET

Survival Benefit of Solid-Organ Transplant in the United States, JAMA Surgery

Double-lung transplant recipient Hélène Campbell of Ottawa used her own personal journey to overcome medical challenges to promote the importance of organ donations. A newly released 25-year study indicates organ transplants saved recipients more than two million years of life.

Organ transplants saved recipients more than two million years of life, according to a 25-year study by U.S. researchers.

In Wednesday’s issue of JAMA Surgery, Dr. Abbas Rana of Baylor College of Medicine in Houston and his team looked at the survival benefit of organ transplants from 1987 to 2012.

Researchers compared records of recipients to those placed on a waiting list who never underwent transplants, and measured the death rates.

The analysis indicated an average of 4.3 years of life saved for each solid organ transplant recipient.

  • Medical debate over defining death has implications for organ donors
  • Liver transplant ethics: Should alcoholics be sober first?
  • Organ transplants in Canada see ‘moderate’ increase

Multiplying by the patients, they calculated about 2.2 millions years of life saved for the 533,329 patients over 25 years — a “stellar accomplishment,” they said.

“These life-years saved are in patients with end-organ failure, who are among the sickest patients,” the study’s authors concluded.

But only 48 per cent of patients on waiting lists during the 25-year study period had a transplant.

“The need is increasing; therefore, organ donation must increase. We call for deepened support of solid-organ transplant and donation — worthy endeavours with a remarkable record of achievement and a tremendous potential to do even more good for humankind in the future.”

Read more via Organ transplants show ‘remarkable record of achievement:’ JAMA study – Health – CBC News.

A heart for Raegan: Athens infant awaits transplant – Enewscourier.com: Lifestyles

Posted on Jan 18, 2015 by Rebecca Croomes

Last year, Jessica Morrell carried her second daughter through a normal pregnancy and early in the morning hours of Oct. 22, gave birth to the girl she and husband Brian named Raegan.

Now, as January drags on, the Morrell family is still waiting to take Raegan home.

“We are all very hopeful,” aunt Christie Partridge told The News Courier on Friday. “We know she will come home, it’s just a matter of time.”

Back in October, when baby Raegan was being prepped to leave the hospital, doctors noticed what at first appeared to be a heart murmur. She stayed another night and the next day went to see a pediatric cardiologist in Huntsville. After arriving in Huntsville, the Morrells were quickly sent to Children’s Hospital of Birmingham with the diagnoses of an interrupted aortic arch.

Interrupted aortic arch only occurs in about two out of every 100,000 births, according to the Cleveland Clinic. It happens as a result of the aorta, the large blood vessel on top of the heart, not developing completely. Without a fully operational aorta, blood cannot properly circulate through the body, which could lead to shock, doctors say.

Physicians acted swiftly for Raegan. After an infection cleared, the child underwent open-heart surgery on Nov. 5, where doctors inserted a pacemaker.

On Dec. 30, Raegan was placed on the United Network for Organ Sharing transplant list at 1A status, which, according to Partridge, is a high priority status. An upgraded pacemaker was inserted Jan. 13 to help Raegan’s heart work both chambers, but she is still waiting for a transplant.

“It is very traumatic, it is very stressful for all of us,” Partridge said. “It’s a different scenario.”

The mascot for the effort to bring Raegan home is her older sister, four-year-old Riley, who keeps the mood positive.

Read more via A heart for Raegan: Athens infant awaits transplant – Enewscourier.com: Lifestyles.

Children eligible for expanded Medicaid contribute more in taxes as adults – MNT

A new study finds that children who received expanded Medicaid benefits in the 1980s and 1990s contributed more to the U.S. tax system as adults. They also were more likely to attend college and less likely to die prematurely in adulthood.

Children of Medicaid
A new study examined the long-term impact of expanded Medicaid benefits for children.
Credit: Yale University

The study is based on an analysis of tax returns for nearly all children born in the United States from 1981 to 1984. It compared children from similar backgrounds who were eligible for Medicaid for different lengths of time, depending on where and when they were born.

Medicaid, which began in 1965, is a public health insurance program for low-income people. It expanded dramatically in the 1980s and again in the 1990s, with the establishment of the State Children’s Health Insurance Program. Historically, states have set different eligibility thresholds for Medicaid.

Yale University economist Amanda Kowalski, one of the study’s co-authors, said the research has implications for today’s Medicaid landscape, as well. “Although it will take years to know the long-term impact of current expansions of Medicaid undertaken as part of the Affordable Care Act, this study shows that the investments that the government made in Medicaid in the 1980s and 1990s are paying off in the form of higher tax payments now,” Kowalski said.

According to the study, the federal government recouped 14 cents for each dollar spent on childhood Medicaid by the time the children reached age 28. Assuming these higher tax payments persist, the federal government would recoup 56 cents on each dollar by the time these children reach age 60.

Read more (http://www.medicalnewstoday.com/releases/287922.php)

Music and stories kids choose themselves lessen their pain after major surgery – MNT

Pediatric patients who listened to 30 minutes of songs by Rihanna, Taylor Swift and other singers of their choosing — or audio books — had a significant reduction in pain after major surgery, according to a new Northwestern Medicine study.

The children, ages nine to 14, chose from a playlist of top music in different genres including pop, country, rock and classical. Short audio books were another option in the study.

A strategy to control post-surgical pain without medication is important because opioid analgesics — most commonly used to control post-surgical pain — can cause breathing problems in children. Thus, caregivers usually limit the amount of opiods prescribed, and children’s pain is not well controlled.

“Audio therapy is an exciting opportunity and should be considered by hospitals as an important strategy to minimize pain in children undergoing major surgery,” said study senior author Dr. Santhanam Suresh. “This is inexpensive and doesn’t have any side effects.”

Suresh is a professor of anesthesiology and pediatrics at Northwestern University Feinberg School of Medicine and chair of pediatric anesthesiology at Ann & Robert H. Lurie Children’s Hospital of Chicago.

Suresh conducted the study with his daughter, Sunitha Suresh, who designed it when she was a biomedical engineering student at Northwestern’s McCormick School of Engineering and Applied Science with a minor in music cognition. She now is a fourth-year medical student at Johns Hopkins Medical School.

The paper was published in Pediatric Surgery.

Read more at Medical News Today (http://www.medicalnewstoday.com/releases/287834.php)