Thursday, June 30, 2011

A Hitter Digs in: Drew Denson Fights Rare Blood Disease

Drew Denson moves in a way most other 45-year-old men don't, which is to say slowly and stiffly.

Twenty-seven years ago he was among the toasts of the Major League Baseball draft, a first-round selection by the Atlanta Braves and the 19th pick overall. The robust 6-foot-5 Purcell Marian star was on the verge of a 12-year pro career that largely played out in the minor leagues.

Now he's battling a rare blood disease that has ravaged his athletic frame and robbed him of physical comforts. Denson has amyloidosis, a condition in which abnormal protein deposits cause his organs and tissues to deteriorate.

While there is no cure, there are treatments. Denson has had two bouts with chemotherapy: One lasted 13 months and lowered his protein levels, and another ended after two weeks when his kidneys failed.

The Springfield Township resident hears that a stem cell transplant could be his best defense. He's willing to undergo the procedure - which requires a five-week hospital stay - if it means he'll be able to see his son, 14-year-old Moeller sophomore-to-be Andre Denson, graduate.

He's willing to ride a scooter at ballparks too taxing to navigate by foot if it means he'll be able to see Andre play baseball.

Denson's days now are filled with dialysis, rest and research. The cruel twist of fate is not lost on a man once known for his peak physical condition.

"It's been very tough. A few of my friends have said, 'Oh man, I can't believe this is happening to Superman,' " Denson said. "I'm like, 'Don't take anything for granted. Appreciate everything. Things like going up the stairs, depending on how good of a day I'm having, might be a struggle.' "

To read the full article visit, Cincinnati.com.

Wednesday, June 22, 2011

Good Samaritans and the Meaning of Altruism

Katrina A. Bramstedt, Ph.D. and Rena Brown have collaborated to write The Organ Donor Experience, which will release later this year.

A note from Katrina from the Good Samaritans and the Meaning of Altruism blog:

Nearly two years of work has resulted in a new and unique book about Good Samaritan organ donation. Good Samaritans are living donors who give a kidney, lung lobe, liver tissue, pancreas tissue or intestinal segment to a stranger. The recipient is not a friend, co-worker, spouse or relative, but a stranger. Often the donor never even meets the organ recipient. Yes, there is great kindness and compassion in the world. Read the book and learn more about these everyday people who self-sacrifice for the benefit of others. My co-author and I are grateful to the 22 donors interviewed in the book, as well as our publisher, Rowman & Littlefield. Mark your calendar for the October 2011 book release.

Visit Amazon.com to pre-order your copy today!

Tuesday, June 21, 2011

Washington University Surgeons Successfully Use Artificial Lung in Toddler

From Media-Newswire.com:

Two-year-old Owen Stark came to St. Louis Children’s Hospital in the summer of 2010 near death from heart failure and dangerously high blood pressure in his lungs.

Washington University physicians and surgeons at St. Louis Children’s Hospital knew they had to act fast to save his life. They collaborated to make several strategic and innovative decisions that led to the first successful use of an artificial lung in a toddler.

Their efforts are reported in the June 2011 issue of The Journal of Thoracic and Cardiovascular Surgery.

The artificial lung, made by Novalung of Germany, “breathes” outside the patient’s body to add oxygen and remove carbon dioxide from the blood. It is approved only for adults and has been used to treat severe pulmonary infections or as a bridge to lung transplantation. The lung works without a pump, using the body’s natural heartbeat to circulate blood.

Owen was transported to St. Louis Children’s Hospital in full heart failure from abnormally high blood pressure in the lung’s arteries. In this rare condition, called pulmonary hypertension, blood is prevented from entering the lungs because the arteries are too narrow. This causes the right side of the heart, which pumps blood through the lungs, to work harder than normal and become enlarged, which leads to heart failure.

Avihu Z. Gazit, MD, a Washington University pediatric critical care physician, was the first to treat Owen at St. Louis Children’s Hospital. Initial tests showed that the right ventricle of Owen’s heart was extremely large, compressing the left side of his heart and creating severe high blood pressure in the lungs, an often fatal condition with no known cause.

Typically, pulmonary hypertension is first treated with medication, Gazit says. However, Owen’s condition was so severe that in addition to medication, he was placed on a ventilator in an attempt to force oxygen into his lungs. Physicians thought Owen may eventually need a lung transplant.

“We hoped the ventilator would allow us to get him well enough that he wouldn’t need to be put on a heart-lung machine,” Gazit says. “But 24 hours later, we knew that wouldn’t be the case, and we had to make the decision to go forward with the heart-lung machine called ECMO (extracorporeal membrane oxygenation ). We knew that his chances of survival were getting smaller and smaller.”

ECMO gives the heart and lungs time to recover and respond to medical treatment prior to a lung transplant. However, it comes with a high rate of complications, including bleeding, blood clots, infection and stroke, and carries a high mortality rate in patients who go on to have a lung transplant. Complications become more severe the longer a patient is on the machine, especially after 10-14 days, Gazit says.

After 16 days on ECMO, Owen’s heart had recovered but his lungs had not. Since there were no lungs available for transplant, Owen’s physicians knew they didn’t have a lot of time. So the team, led by Charles B. Huddleston, MD, professor of surgery and a cardiovascular surgeon at St. Louis Children’s Hospital; Stuart C. Sweet, MD, associate professor of pediatrics and a lung transplant surgeon; Gazit; and R. Mark Grady, MD, associate professor of pediatrics and director of the pediatric pulmonary hypertension program, decided to put Owen on the artificial lung, even though it had never been used on a child so young.

After getting emergency approval from the U.S. Food and Drug Administration and from Washington University’s Institutional Review Board, Huddleston moved Owen from ECMO to the artificial lung in an innovative procedure without the need for a cardiopulmonary bypass.

The Novalung artificial lung is a small box about the size of a lunchbox that is attached through a shunt created between the main pulmonary artery and the left atrium of the heart.

“This case was very interesting and challenging from a physiological standpoint,” Gazit says. “We had to determine what to do with Owen’s lungs – do we support him and wait for a lung transplant or do we work to improve the lungs to get him off of the artificial lung? We had to think about this every step of the way to form an approach.”

Occasionally Owen had to be taken off of the artificial lung to have parts of the circuit changed. Initially his blood pressure and oxygen levels dropped significantly, but over time, his ability to sustain adequate oxygen levels improved. Another indicator for improvement was the increased blood flow through Owen’s lungs rather than through the device.

Owen was on the artificial lung for 23 days when he accidentally kicked off one of the device’s connectors. This resulted in Owen having a stroke and required swift action. However, when Owen was taken to the operating room to reconnect the device, Huddleston found that Owen's lungs had healed enough to allow adequate blood flow on their own.

“Owen was able to come off of the artificial lung,” Gazit says. “We had no idea that we’d be able to get him off of the device before a transplant. It showed us that everything we did was the right thing."

“It is important to mention that our success is the result of a major collaborative effort,” Gazit says. “Owen survived because of the dedication and hard work of our nursing staff, respiratory therapists and perfusionists.”

A year later, Owen continues to take medication for pulmonary hypertension and so far has been able to avoid a lung transplant, says Stuart C. Sweet, MD, medical director of the Pediatric Lung Transplant Program at St. Louis Children’s Hospital.

This experience with the artificial lung gives the medical community an option to manage young children with similar illnesses and support them prior to a transplant, Gazit says.

“We would like to be a part of or lead a trial,” he says. “It requires a multi-institutional effort and we really hope that all of the large lung transplant centers will join us in this effort.”

Tuesday, June 14, 2011

Off-Camera, My Mom’s Fight With Cancer

Jennette McCurdy, 18, co-stars with Miranda Cosgrove in the hit Nickelodeon series “iCarly.”

The following essay by Jennette appeared on the
Wall Street Journal Online.



There are people who believe that young actors on a TV series have it easy and that they never have a tough moment in their lives – not a single trial or obstacle. I don’t blame the people who think this because we, as young actors, spend our days making families laugh and using smiley face emoticons in nearly every tweet we send. Underneath the carefree façade, you may be surprised to know that some of us actually do have to face some tribulations.

In March 1995, my mother was diagnosed with Stage IV mammary ductal cell carcinoma, also known as breast cancer, and required a bone marrow transplant, chemotherapy, breast surgery and many radiation sessions. While my mother was in isolation, the doctors told her to call her family because they didn’t expect her to be there the next day. My mom has told me that one of her worst fears upon hearing this news was that her younger children wouldn’t remember her – I was 2 years old at the time and my brothers were 5, 7, and 11.

Miraculously, my mother made it through.

Her doctors said it defied their understanding of medicine. Of course, our entire family was relieved and grateful beyond measure. However, as any cancer survivor knows, every check-up after recovery is a nerve-racking experience. Every time the results came back clear, a sense of reprieve washed over us all.

When she finally reached the 15 year cancer-free mark, I doubt it crossed any of our minds that her cancer would return. But it did.

In February 2010, my mother had sinus surgery and her doctors found breast cancer cells in her sinuses. After several scans, they also found cancer in her skull, lymph nodes, ribs, sternum, thoracic and lumbar spine and pelvis.

And just a few weeks ago, they found cancer in my mother’s brain and she has started another round of chemotherapy for the cancer in the rest of her body.

I can’t imagine how difficult it must be for my mother to tolerate all she has gone through and continues to go through – the pain, the worry and the battle. She wakes up every day hurting and goes to sleep hurting even more. My mother, the constant optimist and effervescent, sprightly woman I know her to be, is caged along with this hideous beast they call cancer.

Cancer takes its toll on the patient’s whole family. I went into a state of shock when I learned her cancer had returned. Of course, I grew up knowing her medical history but I was so young when she was first diagnosed that my age had protected me from really knowing what this meant. But not this time.

When the shock faded, all I felt was anger. I was irritable and easily agitated. I was mad that my mother had to go through such a terrible thing again. I was confused as to how it could come back after 15 years of living cancer-free and perplexed that the doctors hadn’t found it sooner.

When I’m around my mom, I try to act like nothing’s wrong. She does a great job of that herself. She can barely stand, yet she gets up before me in the morning so that she can make me a mug of hot chocolate. I don’t know how she does it, but she claims it’s what makes her happy.

The protective wall I’ve created for myself does come down sometimes. I have so many questions, but I’m scared of the answers, so I tend to avoid them. I feel like if I don’t know the answers, then they somehow aren’t real.

I am thankful that I’ve recently been able to discuss my mother’s cancer with her more openly. Though the conversation may be difficult, I understand how important it is to have that opportunity to discuss this with her because it provides a better sense of understanding and compassion.

If you are a young person struggling with a parent’s cancer, I recommend talking to them as much or as little as they are able. You don’t want to make your parent uncomfortable, but give them the chance to say everything they feel they need to say. Sometimes, parents can have a difficult time judging just how much information you may or may not want to know. After all, you are their child, and parents always put their children’s emotions before their own.

If you’re reading this and you were one of those people who thought, “young actors have perfect lives,” I hope that you will think differently now. We do have challenges. We do cry. We are experiencing difficult things. But we will continue to smile and crack jokes because, as entertainers, even if we’re privately struggling with painful trials, our job is to make others forget theirs.

Thursday, June 9, 2011

June Patient of the Month: Blake Adams

Before he was even born, doctors knew Blake's kidneys were failing and diagnosed him with chronic kidney dysplasia. In an effort to save some renal function, he was delivered via emergency c-section 10 weeks early, and doctors discovered he had only one functioning kidney, as his right one never developed. Soon after birth, Blake underwent surgery to have a tube implanted to drain his blocked kidney, and five weeks later he endured a second surgery. After spending seven weeks in the NICU, Blake was able to go home with his parents.

Because of his kidney disease and a bit of reflux, Blake was not growing like he should, so he was hospitalized again a couple months after turning 1. A tube was inserted so he could receive additional nutrients during the night, which has been very beneficial for Blake's growth. In 2008, he began receiving daily hormone shots to further assist his growth, and he has now almost reached a normal height for his age. Earlier this year he underwent a procedure to connect his kidneys to his bladder; and although it was successful, the small amount of kidney function that he had plummeted. Doctors say a kidney transplant is essential to his survival, and he was added to the transplant waiting list in May.

Blake is such a happy, active inquisitive little boy! His parents want him to have a normal life, without limitations because of his illness. He spends as much time as possible running, jumping, playing t-ball and swimming, like any other boy his age.

To learn more about Blake or to make a donation in his honor, visit his web bio on the NFT site.


Monday, June 6, 2011

National Cancer Survivors Day

Yesterday was National Cancer Survivors Day®, an annual worldwide celebration of life held in hundreds of communities throughout the United States, Canada and other participating countries. Participants unite in a symbolic event to show the world that life after a cancer diagnosis can be meaningful and productive.

Did you celebrate someone special on Cancer Survivors Day? If so, we would love to hear your story.