How You Can Help Sarah and Others Like Her

June 7, 2013
Sarah Murnaghan has just weeks, or even days, to live unless she receives a lung transplant. Photo courtesy of ABC.com & Murnahan family

Sarah Murnaghan has just weeks, or even days, to live unless she receives a lung transplant.
Photo courtesy of ABC.com & Murnahan family

Over the past week or two, the nation has become enthralled by the story of Sarah Murnaghan, a 10-year-old with end-stage cystic fibrosis. Doctors say that Sarah has only weeks, or possibly days, to live unless she receives a lifesaving lung transplant. The images of Sarah are remarkably gripping as she lies with her friends and parents while on an oxygen machine. Our hearts truly go out to Sarah and her family.

But, the story hasn’t necessarily been centered on Sarah and her wait; rather, news media have focused on the system for organ allocation that is established by the Organ Procurement and Transplantation Network (OPTN). OPTN guidelines for transplantation are extremely intricate and complex, but one area that has drawn particular attention has to do with the age of potential recipients. To make a long explanation short, OPTN guidelines allow Sarah to receive lungs from a child but restrict her ability to receive a transplant from an adult. This drastically decreases the potential for Sarah to receive a lifesaving transplant.

The media coverage and national discussion surrounding the OPTN rules have created a storm of controversy which has prompted a U.S. District Court Judge to order an exception to the current organ allocation rules to allow Sarah to receive adult lungs if an appropriate match becomes available.

The Murnahan family as they wait for a second chance at life for Sarah.

The Murnahan family as they wait for a second chance at life for Sarah.

Unfortunately, a relatively small portion of this discussion has focused on the overwhelming need for Americans to register as lifesaving organ and tissue donors. The fact of the matter is that the supply of transplantable organs is vastly insufficient because not enough people say “Yes” to donation. Right now, there are thousands of families across the United States who are desperately waiting – just like Sarah and her family – for a lifesaving transplant. And, unfortunately, many of these families will needlessly lose their loved ones because they did not receive a donated organ in time. This is a problem that we can – and should –  fix.

So, if you’re outraged that someone like Sarah may not receive a lifesaving transplant, I’d encourage you to look at your license and reflect on whether or not you’re a registered donor. We can’t help kids – or adults – like Sarah unless all of us take the time and effort to make the selfless decision to help others through organ and tissue donation.

Until then, we will continue to read stories about those waiting and see images of kids and adults barely hanging onto life while hoping for a selfless donor.

Read more about Sarah and her wait for a lifesaving transplant at http://bit.ly/11scK3M. Register to be an organ and tissue donor at http://www.GiftofHope.org or http://www.DonateLife.net.

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How the Affordable Care Act Could Affect Organ Transplantation

June 28, 2012

The hottest topic of the day is undoubtedly the United States Supreme Court’s ruling that upholds the Affordable Care Act. The Affordable Care Act has major implications for almost all areas of healthcare and medicine. As you would expect, it will likely have an impact on organ transplantation.

We believe that the Affordable Care Act could give hope to individuals in need of lifesaving organ transplants. Currently, there is a small pool of Americans who struggle get placed on the national transplant waiting list because they lack insurance and are unable to afford post-transplant medications that are vital to the long-term health of the transplanted organ and the individual. Right now, states pay for transplants for uninsured patients through Medicaid. But, a patient’s inability to pay for post-transplant medications can lead to delayed placement (or denial of placement) on the national transplant waiting list.

The Affordable Care Act could bridge the gap that these patients face in funding post-transplant medications by providing affordable health insurance. The act could lead to these patients being added, in a more timely fashion, to the national transplant waiting list.

What do you think? We want to hear your opinions on the Affordable Care Act and how it could affect organ transplantation. Let us know by leaving a comment or posting on the Gift of Hope Organ & Tissue Donor Network Facebook page.


Andy T. – A Life Renewed

May 19, 2011

Hepatitis C is a debilitating illness that can require patients to receive liver transplants. Andy T. is a Donate Life Illinois volunteer who contracted hepatitis C from a blood transfusion due to his life with hemophilia. Hemophilia is a rare bleeding disorder in which one’s blood does not clot normally causing patients to need many blood transfusions.

Andy shares his inspiring story of living with hepatitis and of a life renewed through a lifesaving transplant.

Andy and his wife

I was exposed to hepatitis C during a routine dental procedure while in my late 20s. I was given a precautionary blood transfusion for this very simple medical procedure. Unfortunately, the transfusion was contaminated with hepatitis C, a disease that would ultimately threaten my life.

Hepatitis C slowly attacks the liver. My doctor once told me that I was a man “living with a ticking time bomb” inside my liver. We treated liver disease aggressively for eight years, trying a variety of treatments, including three rounds of Interferon. Each Interferon treatment lasted a full year, and all eventually were unsuccessful. At the age of 56, I was desperate for a cure.

Finally, the combination of my hemophilia and hepatitis C proved to be too much for my liver—doctors told me I needed a new liver to stay alive. My only option was a transplant. After much testing and preparation, I was placed on the transplant waiting list on Dec 24, 2009. I considered it an early Christmas present. My health continued to worsen to the point where I required emergency surgery in March 2010 due to complications from the disease.  

On March 2, I was rushed into surgery. On our trip to the hospital, my wife turned to me and said, “If you ever receive a liver, I will not even cry. I am just so ready for this to all be over.” After a four-hour surgery the doctor spoke to my wife and daughter. He said he had some bad news and some good news. His bad news was that my health was in a steady decline due to the disease. The good news had two parts. The first part was that the emergency surgery was successful and had saved my life. The second part was that Gift of Hope, the organ procurement organization in Illinois, had called the hospital with news of a potential match for a donor liver. This was the best news my family ever could have received.

The medical team quickly left to evaluate and recover the donated liver. While I lay in recovery, my medical team took the most important trip of my life. After a few hours, they called and said it was a match. I was going to receive a new liver and a second chance at life!

What has this gift meant to me and my family? It is difficult to put into words. This year I will be able to walk my daughter down the aisle as she gets married to the man of her dreams. My other daughter was just nominated as the Young Teacher of the Year at her school. I am able to look forward to seeing both of them complete their master’s degrees. And, last but not least, my wife and I look forward to celebrating our 35th wedding anniversary next year.

Andy's Daughters

I now have the opportunity to share my story about the “Gift of Life” through organ and tissue donation. I am thankful every day of my new life for this amazing gift. I am healthy for the first time in years and have the energy to really live life again. No longer am I tired, sluggish, chilled, confused, or generally not feeling well.

I wake up looking forward to the day and wanting to live life to the fullest. I try to find opportunities to say “thank you” to everyone and every organization involved in health care and organ donation and, especially, to the family that made the decision to save my life though organ donation. My faith is now stronger than ever, and I am committed give back to those who have given to me.

– Andy

Register your decision to give life through organ and tissue donation at DonateLifeillinois.org!


The Gift of Perspective

March 7, 2011

Jeff Govednik is an avid volunteer for Donate Life Illinois. His resolute passion for spreading awareness of organ and tissue donation is the product of a life changed by the gift of sight through cornea transplantation. Jeff is a shining example of how organ and tissue donation changes the lives of those who are so fortunate to receive a lifesaving or life-enhancing gift. We are fortunate that Jeff graciously agreed to share his story to celebrate March as National Eye Donor Month.

Initially, I thought that my eyesight was just getting a little weak. I had problems playing baseball and lost a few golf balls. I also strained while reading or driving. With time, my eyesight gradually worsened. Upon visiting the optometrist to get a pair of glasses, I was told that I needed to see a specialist.

I remember the first time I heard the word “keratoconus.” The doctor explained to me that Keratoconus is a degenerative disease of the corneas that causes patients to gradually lose the ability to see detail. My doctor was able to slow the progression of the disease for a time, but eventually it evolved to where I was unable to see with my left eye. It became apparent that a cornea transplant was the only treatment that could restore my vision.

It was a sobering moment when my doctor called the Illinois Eye-Bank. I was no longer worried about sports or long weekends. I was now scared that I would lose my job as a pharmacist. Would I be able to participate in all of the hobbies that I enjoyed? How would my life change?

 

Cornea recipient's vision before and after transplant.

My first cornea transplant was in 1999, and my second was in 2009. I was given more than the gift of sight—I was given perspective. I now savor every sunset, value every walk and appreciate every bike ride. Did my life change? Absolutely. Can I do everything that I did before? No, but I gained an appreciation for the things that I could do. I am still a pharmacist, and I am able to continue pursuing my love of sports.  

When you register your decision to be an organ and tissue donor, you do so much more than save lives. You are giving the gift of future experiences. This is a gift so great that it is truly incomprehensible. My donors touched my life as well as the lives of all those around me. Through cornea transplantation, I was given the gift of sight as well as the gift of perspective.

Please, take 30 seconds to register your decision to be an organ and tissue donor at DonateLifeIllinois.org.

Sincerely,

 Jeff Govednik

To learn more about cornea transplantation and the gift of sight, visit the Illinois Eye-Bank Web site. You can also join their NEW Facebook Fan Page.

 

Re-Direct the Passion

January 18, 2011

 

The news that Arizona will stop financing certain transplant operations under the state’s version of Medicaid has drawn significant criticism. The public continues to voice its outrage. Legislators have made it political. And doctors say the decision amounts to a death sentence for some patients who have little chance of survival without transplants and who lack the hundreds of thousands of dollars needed to pay for them.

In a vacuum, these arguments hold great merit. And be very clear: We, likewise, sincerely believe that the decision to stop paying for lifesaving organ transplants is both misguided and tragic.

At the same time: Even if the state’s decision is reversed—and hopefully it will be—many people will still die waiting for transplants because there simply are not enough organs available.

It strikes me as sadly ironic that people – many of whom either refuse to register to be a donor or simply haven’t taken the time to register their decision to save lives – are so passionate about the issue before us.

We are not powerless. We should fight the law. More importantly we should fight for the 110,000 people across the country who are waiting for lifesaving organ transplants—and do our part to give them hope for a better outcome by increasing donor registrations.

So re-direct the passion. Make the decision and take 30 seconds to register to be an organ, eye and tissue donor at DonateLifeIllinois.org.

The power to save lives is very much in our hands.

David Bosch, Communications Director, Gift of Hope Organ & Tissue Donor Network


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