How does the medical team decide to recommend a child for transplant?
Our patients are usually referred to us from other pulmonologists or cardiologists, and those physicians who refer the patients feel that it’s something that we should consider. Sometimes they’re referred early and they don’t need a transplant for several years; sometimes they’re much sicker and need a transplant sooner rather than later. Once we decide that we think a patient is getting close to needing a transplant, they go through a whole evaluation process. Based on that evaluation process, we decide whether or not a patient needs a transplant. They have to be sick enough to need a transplant, but they have to be well enough to recuperate from a transplant.

Common diagnoses are cystic fibrosis, pulmonary hypertension, pulmonary fibrosis, pulmonary vein stenosis, and certain types of interstitial lung disease: those are our main ones and then there a few outliers.

Dawn Freiberger, RN, MSN, Lung Transplant Program

 

I think it’s always weighing the patient’s risk of dying without a transplant versus the risk of dying with a transplant. The difficulties of lung transplanting, contrasted to some of the other organs, is that the outcomes are not as good: it’s a 50% 5-year survival, as opposed to maybe a kidney that’s even, quote, “dispensable” and you can just go on dialysis if it doesn’t work out. With lung transplant, there’s not really a back-up plan, so you don’t want to proceed with a transplant with all of its risks unless you really feel like the patient’s risks of dying and their quality of life will be worse without a transplant than it would be with a transplant. That’s a team decision, with physicians, surgeons, nurses, social workers, physical therapists, nutritionists, pharmacists: everybody on the team participates in the meetings where we talk about all the patients.

Debra Boyer, MD, Associate Medical Director, Lung Transplant Program

 

It’s mixed. I think some folks are relieved, because they’ve been thinking about it themselves. Other folks are terrified because it means (which it does) that their kid is so sick that they may die. So I think it’s mixed: some families can’t even think about doing it and don’t want to proceed, and others will embrace it as a chance to give their kid an extension of their life.

Debra Boyer, MD, Associate Medical Director, Lung Transplant Program