First in a series.
Lung transplantation has an image problem. People often refer to transplant as the “last resort” or a “backup plan,” terms that connote failure. I’m no public relations guru, but I’m pretty well-versed in the success that’s possible with a transplant. Fair warning: I get a little heated on this topic. I’ve been on prednisone for almost two years, after all. At the risk of jinxing my own long-term survival, I’m going to try to make a case for this most undesirable treatment option.
Since my heart-lung transplant 23 months ago, I’ve maintained 100 percent oxygen saturation. I’ve recorded FEV1 (forced expiratory volume in one second) values in the 92nd percentile, traveled through seven countries, hiked hundreds of miles, and finished 47 books. I went from struggling to walk a block, to jogging 5 km and rock climbing in a span of three months.
I see “#TransplantIsNotACure” plastered across social media sites. Honestly, who does that serve? It’s not making donors’ families feel better about their choice to give the gift of life. It doesn’t make eligible patients feel better about their choice to be listed for transplant. I’m (clearly) all for talking about the realities of post-transplant life. But guess what? Heart-lung and double-lung transplants cure pulmonary hypertension!
No, a transplant doesn’t cure you of all disease — you get a new one. I take pills around the clock, and I do so more than willingly because it’s a huge improvement from continuous intravenous medication. Though transplant comes with chronic immunosuppression, it also comes with increased functional capacity and improved quality of life.
The benefits are shown in figures such as this: Of the lung transplant recipients transplanted from 2013 to 2015, 81.7 percent reported their functional capacity was such that they required no assistance one year after surgery. That’s from the 2016 Annual Data Report from the Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients.
OK, so you believe me — quality of life improves in most cases. But for how long? A recent post in our Pulmonary Hypertension News Forums includes the statement: “Transplant survival rates are poor, so I am not betting on those.” I’ll admit it, comments like this sting a little.
In a Facebook thread, I read: “Long-term statistics are still abysmal.” Abysmal? Usually, I’m against even entertaining survival statistics, but over the past couple of weeks, I’ve done a deep dive into medical journals to examine these claims.
Next week, I’ll get into the nitty-gritty of those statistics. The short story is that the life expectancy of transplant recipients is comparable to the life expectancy of pulmonary hypertension (PH) patients, and better than those with advanced PH. My main point being, since when do PH patients pay attention to survival statistics? If you have PH and you’re reading this, chances are you’ve already outlived any estimates doctors gave you at diagnosis or that you’ve read online.
I’m writing this series because I see too many PH patients missing out on what physicians call the “transplant window.” That’s the period of time when one is sick enough to need a transplant and strong enough to survive one. The lung allocation system already disadvantages PH patients compared to other disease groups (more on that later). It’s essential that patients familiarize themselves with the transplant process while they are stable. Pulmonary hypertension specialists need to refer patients early for a lung transplant and heart-lung transplant evaluation.
Lung transplant centers need to take pulmonary hypertension patients seriously and perform early evaluation and close monitoring. Dr. Patricia George expands on this in an interview for the phaware podcast series: “When you see [patients] earlier, you’re given the opportunity to really medically tune them up, make sure they’re going to pulmonary rehab, get them as strong as possible, and hopefully make those early interventions.”
She adds that even if a patient is too well for transplant, seeing a transplant team can still be a benefit. Given the opportunity, physicians can address longer-term issues like weight loss or gain before the disease progresses to a critical stage.
Look for more in this series next week!
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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.