Even rare disease and transplant patients can give the gift of life

Columnist Sam Kirton addresses some misconceptions about organ donation

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by Samuel Kirton |

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A recurring topic of discussion among the rare disease community is whether people would consider donating an organ. I’ve heard varied comments, such as “No one would want any of my organs,” “My only good organ is my transplanted one, and it cannot be reused,” and “I don’t want to saddle someone else with my health problems.”

Today, I want to respond to these misconceptions.

Before I continue, I want to note that there are only a few universal truths, and as best I can tell, none of them apply directly to organ donation. Here at BioNews, the parent company of Pulmonary Fibrosis News, there are three columns editors: David Boddiger, David DeWitt, and Paige Wyant. I’ve decided that they have a silent mantra of “prove it.” In the time I’ve been writing this column, I’ve learned the importance of including proof for any statements I make. My intent is to provide my readers with factual information from the best, most reliable sources available.

That’s why I wanted an expert to weigh in on the misconceptions I shared above. So I reached out to Lisa Colaianni, who is a donor family advocate at Infinite Legacy, a nonprofit organ procurement organization serving people in Washington, D.C., northern Virginia, and Maryland. Since I had my bilateral lung transplant in July 2021, Lisa has been my contact for the letters I send to my donor family.

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She referred me to Immanuel “Manny” Rasool, the program manager of research and living donation at Infinite Legacy. I asked Manny if recipients of solid organ transplants could be organ donors, and if the organ they received could be donated again. Manny responded via email:

“Yes, there is still a possibility you can be an organ donor if you received a solid organ transplant in the past. And sometimes, if that specific solid organ that was transplanted is still functioning, it can possibly be re transplanted into another recipient. Multiple medical criteria’s [sic] need to be met for this to happen and this is evaluated on a case by case basis.”

Having a rare disease or a previous organ transplant doesn’t automatically prevent you from becoming an organ donor. While a single organ, eye, and tissue donor can save or heal more than 75 lives, according to Donate Life America, not everyone will be able to donate every kind of organ or tissue. But even if we only match with one person in need of a transplant, it’s worth it to help them live a better, longer life.

Evaluating potential donors

Each potential donor is evaluated individually by a team of experts. Multiple organizations, including both government agencies and private nonprofits, work together to ensure safety throughout the process. The Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services, oversees organ recovery and transplantation through the Organ Procurement and Transplantation Network (OPTN). The United Network for Organ Sharing, a nonprofit organization, operates the OPTN under contract with HRSA.

There’s no need to memorize all of this; I only share it to demonstrate how many organizations and contractors are involved in deciding which of a person’s organs or tissues are suitable for transplant.

Let the medical experts determine what you’re capable of donating. By registering as a donor, you could make a world of difference to someone who needs a donation. Corneas could help someone see again. Tissue could benefit a burn victim. Solid organs could save someone’s life.

As motivational speaker and former NFL player Trent Shelton said, “You can’t be everything to everybody, but you can be everything to somebody.”

Please consider becoming a donor

I’m confident that my lung donor is the sole reason I’m here and sharing my writing with you today. My wife, Susan, and I weren’t expecting me to make it to Christmas 2021 because of the progression of my idiopathic pulmonary fibrosis. Organ donation gave me the gift of life.

In honor of National Donate Life Month, celebrated every April, I encourage my rare disease community to let go of misconceptions about donation and consider changing a person’s life.

It’s my intention to maintain my organ donor status, and I’ll continue to take awesome care of my lungs, knowing that they can be evaluated for a future transplant patient. Hopefully, someone somewhere can use some part of me. It’s how I can make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.


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