Transplants are still too difficult to schedule for PH patients

My first doctor for pulmonary hypertension (PH) introduced the general concept of organ transplant to my parents and me at the same time as my diagnosis. As we learned about a life with PH, she also explained that transplant was the single lifesaving option I’d likely need once I inevitably entered into the disease’s end stages.

A recent article here on Pulmonary Hypertension News outlined many barriers to transplantation within the pulmonary arterial hypertension patient population. It documented transplant referral statistics and offered reasons why many patients don’t survive long enough to benefit.

Seeing this article pop up a while back instantly triggered a range of emotions in me, including rage and confusion. Barriers to transplant have long been a known issue in the community. I know too many stories of peers who died before they had the chance to pursue that single lifesaving option.

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Several factors influence the likelihood of proper transplant referral, including income, education, age, and specific disease characteristics. These were all factors that my family and I were fortunate to have on our side. Yet I still had to engage in months of advocacy before being properly listed to get my new heart and lungs.

In my case, exceptions were required for me to be listed at the appropriate level. Because PH presents differently than other heart and lung illnesses, my team had to present waivers that bypassed the standard listing protocol requirements. That’s part of why transplant becomes so difficult for PH patients.

The transplant process is already an immense undertaking even without these additional barriers. Unfortunately, PH doesn’t fit into the typical qualifications for organs, whether they’re lungs alone or heart and lungs. That can make referral and listing difficult.

From where I sit today, there still needs to be a great deal more education and discussion on how best to serve the highly varied population of PH patients when it comes to transplants. From a logistical perspective, especially given this clear history of struggle, it doesn’t seem unreasonable to expect reform or greater specification within the listing process of the United Network for Organ Sharing, also known as UNOS.

As a former patient, I firmly believe that all patients should have access to transplant education throughout their PH journey. In the same vein, PH providers should have a baseline consensus of when referral to transplant is essential. If the patient qualifies, referral should never be overlooked by those overseeing care. Ultimately, any potential candidate for transplant should be afforded the option of moving forward with the process.

I feel so grateful that the idea of organ transplant was introduced to my family when I began my PH journey. While it may have been overwhelming at the time, it allowed us to prepare, educate ourselves, and push for action on all sides once we knew the time was right.

Life since my transplant hasn’t been perfect, but I also know what a privilege it is to be among the lucky ones who survived long enough for it to be an option. This illness can take a life so quickly, which makes it that much more important that there be reasonable access to all relevant treatment options that exist — especially organ transplant.

Note: Pulmonary Hypertension 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 Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.