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Interviewer: For patients with lung disease, deciding what medical center you'll partner with for a lung transplant is a big decision and there are a lot of factors to take into consideration. But today, we're going to help answer some of those questions you might have.

Dr. Matthew Morrell, he's dedicated his career to ensuring patients who need lung transplants get them and also have the best outcomes possible. He's been at some of the biggest lung transplant centers in the United States, and now he's the medical director of The Lung Transplant Program at University of Utah Health.

Dr. Morrell, thank you for sharing your expertise. And the first question is I learned that sometimes a patient diagnosed with lung failure isn't even told that a lung transplant is an option. That really surprises me. Explain that for me.

Dr. Morrell: Honestly, it's interesting. Not a lot of people or lung doctors in the community even think this is an option. There's a lot of misinformation, miscommunication between providers and patients that are out there. So our goal has really been to reach out to providers, to reach out to doctors, to really educate them about lung transplant as a potential option.

Interviewer: So if a patient has been . . . if that's never been mentioned, or they've been told, "Maybe that's not an option," it might be a good idea to seek out a second opinion.

Dr. Morrell: That's exactly right. So we here at the University of Utah, we're always willing to talk to any patient that has any questions, even those that don't necessarily even have a referral from a lung doctor, their lung doctor isn't in the community. We've seen patients that call up and just want to say, "Hey, I want to speak to somebody that can give me more information about lung transplant," and, "Hey, am I a candidate? What makes a good candidate? What doesn't?"

Interviewer: Yeah. Obviously, you know all those things. You live it every day. Let's say a patient has been told that they are a candidate for a lung transplant, or maybe that's an option they should consider. Based on what you just said, maybe a patient thinks that a transplant would be a good option for them. Does the patient get to pick the medical center where the procedure is done, or is it kind of when I've got a cold, I'm going to go to the nearest InstaCare?

Dr. Morrell: Well, patients, yes, they have the option of choosing where they want to go to get their lung transplant. Insurance sometimes does dictate where they can go, but honestly, if a patient says, "Hey, I want to come to University of Utah," they just talk to the provider, and that provider can make that referral down to us.

Interviewer: So that's great that a patient gets to choose. In a way, that's great, right? But it also comes with a lot of decisions that have to be made, a lot of things that have to be weighed. So what would you say to a patient that's trying to make that decision of choosing a center? What are some of the things they should consider?

Dr. Morrell: Well, honestly, you want to look at the center's history. How long has that center been doing lung transplants? How many patients have they transplanted? How many patients do they transplant a year? Are they doing research in the field of lung transplantation at that institution?

And also, talk to patients that have actually had transplants there. We can give you the names of a couple of patients that have had transplants and you can call them, speak with them, and they can tell you their personal opinion about how that process was for them.

You can speak to a coordinator and get your questions addressed even before even coming to the University of Utah. And when you do come for your initial appointment, it's mostly a meet-and-greet. No pressure. It's just an information gathering. How do you feel? Have you made that bond with that physician? Is that physician someone who you can trust? Is that someone who you want to be your advocate for you going forward as you get evaluated for lung transplant?

Interviewer: One of the challenging things for lung transplantation is you're on that waiting list and you're waiting for that match, that donor match to come. And sometimes, it can just by chance come very quickly, or sometimes it might take a while. Are there things that are done at particular institutions such as University of Utah that could help increase the chances that a lung donor gets a match more quickly?

Dr. Morrell: Oh, absolutely. So we are the only lung transplant program in the Intermountain West. So that means that not only do we see a lot of patients from not only inside of Utah, but the surrounding states, Colorado, Nevada, Oregon, Idaho, Montana, parts of Arizona. We're getting patients referred to us.

On top of that, we have to get donors. If there's a donor that is in another state, that does come to us. So we do have a lot more access to some of these donors versus if you were living in a city like Los Angeles. There are a lot of other centers there. There's a handful of lung transplant centers.

And so there's a lot of competition when a donor becomes available to try and match that to a recipient versus us. We're it in the Intermountain West. So if you get evaluated and get placed on the list, your chances of getting a transplant are pretty good.

Interviewer: Another consideration with lung transplant is rejection. But technology and techniques are improving. Tell me about some of the things that are done at University of Utah Health that help reduce that risk of rejection and help treat rejection.

Dr. Morrell: We are very aggressive once a patient gets a transplant in terms of keeping an eye on someone's lung function, on their blood work. We have patients coming pretty frequently after surgery for follow-up when rejection is the highest. So if rejection is going to happen, we catch it firsthand and we deal with it.

We're involved in some of these research trials for some of these new medications to treat rejection. So if rejection is going to happen, we catch it early, we handle it, we treat it, we resolve it. And for those patients that may have rejection that is more difficult to control, we're using the cutting-edge research technology to cure rejection, to overcome it, and to improve survival.

Interviewer: Another component of lung transplantation is the average life expectancy after a lung transplant, which kind of shocked me. It's about five years. I thought it was a lot longer than that. But are there some things that you can do that actually will help stretch that out?

Dr. Morrell: We are very vigilant at catching problems if they do happen. We have access to nutritionists, a physical therapist that if someone has something that could affect their overall survival, we have access to state-of-the-art therapies even outside of lung transplant here at the hospital that can really help and improve survival.

Interviewer: What I'm really getting about lung transplantation, the skill of the team that is doing the transplant is super important. But with lung transplantation, it sounds like the work that's done before the transplant, and even the work after the transplant, is really important. And that a patient should feel as though when they're at an institution, that if they have an issue, they're going to be able to contact somebody, and that they're going to hear back from the department. I mean, it sounds like that could be a matter of getting more years out of your transplant or not.

Dr. Morrell: Exactly. There's always a nurse coordinator here on call 24/7. There's a pulmonologist on call 24/7. And along that pre-transplant side of things, as you mentioned, I want to add that we encourage patients to come early for their evaluation so we can take a look at you. And if there is a problem, if there's something we can work on, if you're a little bit overweight, we can address that, get you to lose weight. If you need some exercise, some rehab, we get you plugged into that too. If your heart needs to be looked at, we get you into the cardiologist.

We want to have that time to really optimize you, to get you in the best shape you can be prior to your surgery, prior to your transplant, to really have you be that patient that exceeds that average survival, that you're that patient that 25 years out from transplant, you're loving life, you're active, you're traveling, you're living life to the fullest, and you're as healthy as you can be.

Interviewer: So the average time of survival is five years, but you just mentioned 25 years.

Dr. Morrell: Oh, yeah.

Interviewer: It can go much longer than that.

Dr. Morrell: Oh, yeah. That's the average survival. You take everyone that's had a transplant.

So sometimes in transplant . . . and again, not just here, this is everywhere in the world. Sometimes patients are super sick at the time when they go on that list. They may have some medical problems that ultimately recur after transplant, and sometimes they die within that first year.

On the opposite end of the spectrum, we have patients that are over 20 years out. It's so rewarding to me to see these patients that are doing so well. It's wonderful. That's why I do what I do.

Interviewer: Are you pretty good at being able to determine when a patient gets a lung transplant kind of what the average survival rate might be for that particular patient?

Dr. Morrell: Yeah, I think we get a general sense when someone does come. We take a look at somebody, we know their medical history, we go into very, very good detail, and so we do know risk factors. "Hey, I say because of X, Y, and Z, because of your previous chest surgery, because you're on this medication, this specific one, that you do fall into this high-risk category. You may be somebody that we really have to hope for the best for after transplant. If we choose to put you on the list, complications may happen."

When patients come for their evaluation, we don't want to commit them to a transplant early. We don't want to potentially shorten your survival by saying, "Hey, we're going to do a transplant even though you're not quite sick enough for a transplant." We do these early referrals that allow us to work on some of these modifiable risk factors that can influence survival.

But if we have time beforehand, we'll say, "Hey, you know what? Things look good right now, but let's have you come back in six months and if you start getting sicker, if you start needing more oxygen, and if your lungs start limiting your activity level, you may kind of be pushed into that gray zone where we say, 'Okay, now is the time. Now is the time when we need to get you on that list because based upon my assessment, you may not live without a transplant longer than a year. So now may be the time to get you on the list to really improve . . .'" The goals of transplants are improve longevity, improve quantity of life, and also improve quality of life.

Interviewer: If you want to learn more, just Google "lung transplant at University of Utah Health." There are a lot of great resources on that page there, including types of lung disease and the transplant surgeries that you might need for those. There's "The 10 Things to Know About Lung Transplant," patient stories about their transplant experience at University of Utah Health. Again, just Google "lung transplant University of Utah Health" to get those stories.

Dr. Morrell, thank you very much.

Donating your child's organs when the unthinkable happens is not normally something parents ever think of. If you've been following my recordings, you know that a dear friend lost her teenage daughter recently. We had been very close to her daughter since she was a baby. And it was amazing that even in this difficult time, my friend thought of others. Her daughter was an organ donor. She improved the lives of at least six other children by this selfless act.

Before I was a pediatrician, I worked in organ transplant as one of the original 12 organ placement specialists for UNOS, the United Network for Organ Sharing. My job was to take information on those who had been declared brain dead, enter it into the computer, and find matches. That means finding those people waiting on the transplant list, who were genetically similar enough to the persons whose organs were being offered and coordinate with the transplant teams on both sides to get lifesaving organs from one person to another.

People can declare if they want to be organ donors on their driver's licenses or in their wills. But what happens when a child passes? Parents have to make that decision under the most difficult of circumstances. The process starts when a child is admitted to the intensive care unit and the doctors there suspect that the child will not recover from their injuries. They will discuss if the parents are interested in donating their child's organs if their child is declared brain dead.

Brain death happens when the brain essentially stops being able to do what it normally does — think, feel, and tell the body what to do. It cannot be reversed. While the heart can continue to beat and machines can keep a patient breathing, the brain is no longer working. A child may appear to be sleeping, but they're not. They're kept alive by machines and medicines. When the machines are turned off, the rest of the body will die, just as the brain already has.

Specific exams are done by specialists to confirm brain death. Someone is never declared brain dead without all of those tests being done to confirm that the brain is no longer functioning. Once brain death has been declared, someone from the local transplant team, called the organ procurement organization, will come and meet with the family. They are usually medical personnel with special training in how to handle this most sensitive situation. They will be able to answer questions and help the family through the process.

Once parents give consent, the paperwork begins, and that is where what I did comes in. When donors and recipients are matched, organ placement specialists will help with transportation to get the organs to where they need to go. Once everything is coordinated, the donor is taken to the operating room where the organs that were placed are then removed from the body and the machines are turned off, and thus, the patient has now become cardiac dead. Their heart stopped beating and they are gone.

The donor patient can have a full open casket funeral if desired. The organ procurement team works closely with funeral homes to make sure this can happen. For privacy, the recipients of the patient's organs are not disclosed to the donor family. But the organ procurement team does let the family know how many organs were able to be transplanted into waiting recipients.

While nothing can make the pain of losing a child suddenly better, families often say that knowing that, during the tragedy of their loss, they were able to give the precious gift of life to another and that helps the healing process begin. Their child will live on through those they have helped.

Knowing their friend was an organ donor started the conversation with my boys. They both told me that they would like to be donors if anything happened to them. They know their father and I are both registered donors as well. If you would like to be an organ donor, you can sign up at UNOS, UNOS.org/register-to-be-an-organ-donor. I would like to dedicate this podcast to all who have made the choice to donate and save another life. Thank you.