I'm Aware That I'm Rare: Patricia George, MD
Patricia George, MD, is a PH pulmonologist and co-director of the pulmonary hypertension program at National Jewish Health. She is also one of the original four racers on Team PHenomenal Hope. In honor of September 9th being the European Day for Organ Donation and Transplantation, she discusses lung transplantation and organ donation.
My name is Patty George. I’m the co-director of Pulmonary Hypertension at National Jewish Health in Denver Colorado. I am also the co-founder of Team Phenomenal Hope, which is a non-profit endurance team that races to raise awareness about pulmonary hypertension, dedicates our endeavors to elevating patient stories and raises funds to support patient research and save patient lives.
Today, I’d like to talk a little bit about lung transplantation and the importance of organ donation.
I actually went to study pulmonary medicine and pulmonary fellowship at the University of Pittsburgh because of my interest in lung transplantation, and then became a transplant pulmonologist after fellowship, and then was introduced to the world of pulmonary hypertension and evolved into a PH physician out of lung transplantation. I was always somebody who took care of patients pre and post lung transplant. Now, I focus mostly on the pre, here at National Jewish Health because we’re not a transplant center here.
One thing that I talk about a lot with patients who have pulmonary hypertension, and especially for referring doctors, potential referring physicians to transplant centers, is that obviously pulmonary hypertension is a chronic disease and often progressive disease. When patients are starting to get to that point where they’re on IV therapy, for example, or they haven’t respond like we would hope, it’s always best to refer somebody earlier rather than later to a transplant center.
For a patient to hear, “Oh my gosh, I’m being referred for a lung transplant.”, can seem, I’m sure, frankly overwhelming, like being hit with a freight train of news in the clinic. I try and instill in people a little bit of hope in that. Often times when I was at UPMC and seeing patients pre-transplant, we would be seeing people sometimes who were too well for lung transplantation, but they had a lot of smaller issues that we could work on to help make them healthier, such as maybe helping them lose weight, or to be a candidate for example or get on top of their diabetes or make sure that we treat their osteopetrosis. Whatever it may be, there’s a lot of things that you can do to kind of optimize somebody for lung transplantation. When you see people 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.
It also allows people, as the patients, to think about this well ahead of when they’re really sick. You know, it’s better to have frank conversations about what is lung transplant, what is really involved, do I want to go through all this and all the medications and everything they’re telling me, do I really want this as my life and lifestyle? It’s better to be able to think about that when you’re well and you can do it around the kitchen table rather than when somebody is sick and in the ICU. Often times, by the time somebody gets to being that sick it’s very difficult if they haven’t gone through a transplant evaluation, or even if they have if they’re in the ICU, but if they’re in the hospital and they haven’t already gone through evaluation it can be hard to do that evaluation right.
We would always hope that people would err on the side of an earlier evaluation for a transplant and then you know that, if they got better we would just follow along, and it’s something you can put in your back pocket should the day come when you need a lung transplant. It’s something I think people should consider in terms of early referrals on the physicians side, as well as when patients are referred not to think it’s the end of the world, but just learning about a next possible therapy.
Sometimes when patients go to a transplant center for evaluation and they’re told they’re not sick enough yet for transplant, yet we want to do a transplant before they’re too sick. They’re left with these mixed messages and it can be quite confusing. What does that all mean? We refer to it, as physicians, we talk about it being in the “transplant window.”
What that means is, in lung transplantation, there’s a lot to it and it brings a certain amount of risk. There’s a risk of surviving the surgery and there’s the risk of their long-term mortality. Lung transplant is still a treatment for a disease, not a cure. That’s what we would often say to our patients. Now, in reality if I were to give a PAH patient a double lung transplant, it will cure their pulmonary arterial hypertension. It goes away. It tends to not reoccur in the new set of lungs, but when we say it’s a treatment rather than a cure, what we mean by that is they’re exchanging their current disease of pulmonary hypertension for a new condition of lung transplantation, and that brings with it a lot of maintenance, upkeep, and potential risks of infection, rejection.
For somebody to have a new set of lungs that come from another individual you have to go on anti-rejection medications, which are immune suppressing medications or immunosuppressive medicines. When you go on those they help prevent the rejection but they also suppress the immune system and make people susceptible to infections they normally probably wouldn’t be affected by so people can get pretty sick with infections, whereas normally that doesn’t happen. Conversely, despite our best efforts, patients still often will get acute rejection or the longer they live, the more likely they are to develop an element of chronic lung rejection. As that happens, that also can decrease quality of life over time if that happens to somebody. You know, it makes it challenging.
The average, the median five-year survival is just over five years. It depends on your disease type in PAH patients. It’s actually better than other lung diseases and it depends on the center so each center has their own median survival. What that means is that half of the people will live longer than that and half of the people won’t make it to that point. If you have a patient who comes to you, and they feel sick and they’re on oxygen and they’re on three drug [combination] therapy, but you look at them and you think, “I think that person has a few years at least living at this existence and maybe we could do some things to medically optimize.” If you think that they can exist and thrive, at least to some degree, in their current state they may not quite yet be in the window. They may still be too well, and you don’t want to transplant them too early and potentially shorten their life. That’s what we mean by having to be sick enough.
Conversely, if somebody gets super sick and they’re intubated in the ICU or they’ve been immobilized for a month due to some severe infection or whatever it may be, and they no longer can walk down the hallway for example. Then they’ve become too sick. The risk of them dying in the procedure itself is great. That’s too sick for transplant. We try to find that window where we should list somebody and transplant them so that they’re most likely to live the longest and most fruitful, happiest life post lung transplant.
Organ donation is super important, even if somebody has pulmonary hypertension, if you check the organ donors box on your driver’s license, for example, or make it known you’re an organ donor, they probably won’t take the lungs or the heart given the underlying lung disease, but they may take corneas or they may find a use for other organs that haven’t been affected by disease. Certainly, people who don’t have pulmonary hypertension or don’t have other diseases, it’s really important to be an organ donor.
We talked about some of the challenges of lung transplant, and the risks, but I’ll tell you when it goes well, it goes really well. You see people regain their lives when they’ve gotten to be so sick and then they get a lung transplant. All of the sudden, they literally have a second lease on life. There’s nothing like it in the world and that only happens through the grace of other people who said that it was okay to use their organ after their time has come so it’s important.
I’m Patty George and I’m Aware that I’m Rare.
Listen to “I’m Aware That I’m Rare: the phaware® podcast” at phaware.global/podcast. Never miss an episode with the phaware® podcast app. Learn more about pulmonary hypertension at phaware.global. Team PH & phaware have launched an Unmet Needs Patient Impact Fund program to assist those with pulmonary hypertension in the communities affected by Hurricane Harvey. Help Now: www.phenomenalhope.org/hurricaneharvey #phaware #phawareMD #EODD #OrganDonation