Why You Need to Talk About Organ Donation and IPF

The death of a loved one is no doubt one of the most painful experiences in life. The grief, the confusion, and the emptiness that follows can sometimes feel unbearable. This is why so many people discuss end of life plans with loved ones even if the morbidity of the conversation seems in itself intolerable.

So with this, what about the situation that involves the question of organ donation?

While the benefits are obvious, the decision to consent at the most painful point of grief is at times the very last thing on a grieving family’s mind.

This story shines a light on a subject that many of us would not think of in our day-to-day life: the need for organ donation. I don’t think I have met a single healthy person in my life who wants to discuss their own mortality in a serious way. This article describes the call of a patient with pulmonary fibrosis for families to discuss the decision to donate much-needed organs after death–before the devastation of loss is already upon them.

As a nurse, I have witnessed the turmoil a family experiences with the time sensitive decision of whether or not to donate is at hand. Merely signing a paper or a driver’s license does not ease the complexity of such a decision.

This is why an open discussion about organ donation needs to occur between loved ones while of healthy, sound mind and body.

With the recent passing of World Organ Donation Day on October 17th, this need was brought to the forefront. In the internet article, 58-year-old Linda Paradis outlined the need for decisions to be made by families prior to the onset of unthinkable loss.

She suffers from idiopathic pulmonary fibrosis and needs a lung transplant to survive this progressive and debilitating illness. A non-smoker and active, athletic woman she survives on 24-hour oxygen and struggles to just make it through the day with breath to spare.

She hopes that if the decision about organ donation is made outside the grief of loss, it will lead to increased availability of organs for transplant.

Idiopathic Pulmonary Fibrosis(IPF)  is a progressive, chronic disease of the lungs. The cause is considered unknown. It is thought to be due to exposure to an unknown substance, illness, and/or injury. With IPF, the lungs become scarred and stiff resulting in a decrease in lung function. Breathing becomes increasingly difficult.

Individuals with IPF experience chest pain, shortness of breath, chronic cough, and activity intolerance.

Treatment includes medication, oxygen, and lifestyle change. In severe cases, the only life saving option is a lung transplant.

This disease shines a light on the need for viable organs for transplant. The demand for organs for donation much out weighs the availability. This is a difficult but necessary conversation that everyone should have.

If not only for the gift of life that could potentially be given to another, but if that need for transplant was needed for a loved one or yourself, more people need to address this sooner than later.


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