The progress in testing for organ rejection hasn’t quite reached me
As a complex patient, it can be frustrating to lack access to advancements
At my most recent post-transplant clinic appointment, my transplant pulmonologist added a new lab to my testing. Prospera, as it’s called, is a way of assessing the risk of active organ rejection in transplant patients.
Prospera isn’t new in the world of organ transplantation. It was initially created for assessing organ rejection in kidney transplant recipients, the most common type of solid organ transplant. Since then, it has been modified to include heart transplants, and it was recently approved for lung transplants as well.
The test, which uses blood samples to assess the percentage of donor DNA in the patient’s blood, was developed to be an early predictor of organ rejection. Higher levels of donor DNA indicate a higher risk of active rejection. Lung transplant recipients are extremely susceptible to organ rejection, so a noninvasive option for regular assessments is pretty monumental. The concept is even more exciting for patients like me who are poor candidates for lung biopsy, which is the current standard for monitoring for organ rejection.
Unfortunately, my recent result wasn’t entirely useful. I’m a complex case with other factors to consider, like infection and scar tissue, which can affect this number. Because of that, the number itself doesn’t mean much. Instead, we can only look at the trend, alongside the rest of my regular testing.
When frustration is routine
Leaving my appointment, I had a lot of mixed emotions. My chest X-ray has significantly improved since last fall, when I was taken off a medication that caused a rare and significant side effect. In general, I’m feeling the best I’ve felt in three years. But I wish this lab didn’t cast such a foggy haze over my own view of my health.
Because my test result was abnormal, I’m left to wonder about the cause of it. Is it organ rejection or just a reflection of the other lung injury I’ve endured? Could this number actually be an improvement from when I was so sick last fall? How does it compare to 2021, when I last felt this well? These thoughts roll around my mind, and I’ll never have the answers I long for.
At this point, as a long-term member of a rare community, frustration feels routine. Being a lung transplant recipient is rare, and being a complex patient further narrows the scope. As advancements trickle down, it feels discouraging to be in the group that may be the last to benefit from progress.
This experience isn’t new to me. Living with pulmonary hypertension for 19 years before having a heart and lung transplant exposed me to similar delays in progress. Especially as a pediatric patient, it often took years for adult medications and other treatments to be approved for use for me and my peers. As a complex patient, I was excluded from several hopeful clinical trials. The few advancements I witnessed always took so long to reach me. When living with an illness where forward motion is desperately needed, this extended timeline of waiting can be painful to be a part of.
There’s no good answer to any of this. In the hierarchy of medicine, this is the way things will always flow. Much of it is for a good reason. Testing on larger, more stable populations is how most things need to begin. It’s a wonderful thing when meaningful progress can begin at all. Still, I’m left feeling stuck between celebration and bitterness.
Despite a lack of previous data, I’m glad we can track this number going forward. I’m hopeful for better capacity to predict organ rejection in lung transplant patients as a whole. There is so much progress that needs to be made within the vastly imperfect world of transplant. And I’m willing to celebrate the very small and slow steps that may get us there — even if I’m the last in line to claim any reward from it.
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.
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