George B. Mallory, MD - phaware® interview 156
May 22, 2018
George B. Mallory, MD is a pediatric pulmonologist at Texas
Children's Hospital. In 2001, he joined the Baylor College of
Medicine pediatric faculty and founded the TCH Lung Transplant
Program. Since 2005, Dr. Mallory has also been medical director of
the region's only pediatric pulmonary hypertension program. In this
episode, Dr. Mallory discusses his experience with lung
transplantation in children with pulmonary hypertension and cystic
fibrosis.
My name is George Mallory. I'm a pediatric pulmonologist, currently
working at the twilight of my career at Texas Children's Hospital
in Houston, a member of the faculty at the Baylor College of
Medicine.
I've had a really unique perspective on pulmonary hypertension in
children in that I started in lung transplantation almost 28 years
ago, in the era where there were no therapies. And so many of my
very first patients referred at St. Louis Children's Hospital for
lung transplantation when it was brand new, had pulmonary
hypertension. And I still remember ... if I can give you a precious
vignette, just a wonderful story. A 23-year-old from St. Louis with
Down syndrome, who had been evaluated at the world famous adult
lung transplant program across the street, Barnes Hospital, where
the senior surgeon, a great man, but not well educated in Down
syndrome said, "We're not going to transplant this young woman. It
would be a waste of resources."
Well, in 1990 the pediatric world had come to accept that people
with Down syndrome deserved absolutely equal access to healthcare
resources, surgical services. With informed consent, we evaluated
her. She had had a heart defect that either been overlooked or
ignored 20 years before, and she had developed pulmonary
hypertension in the form that we call Eisenmenger's syndrome. She
was a delightful young woman, great family. Missouri Medicaid was
not covering lung transplant at this point. The hospital made a
deal with them, and they ended up, for the next six months ... she
actually got transplanted within a month ... the family sold
pretzels on street corners in St. Louis to try to make money to
help cover the bills. Well, they never got around to raising enough
money. But she got a single lung transplant, one lung, and she
lived 19-1/2 wonderful years. So she was the longest living
recipient of a lung transplant at St. Louis Children's for many
years, and I just thought what a rich irony. It was pulmonary
hypertension before there were any therapies and a very unlikely
person. But I learned a lot from her.
I've had this unique experience of being involved, very involved in
lung transplantation, being significantly involved in the world of
pulmonary hypertension that has changed so much in the last 15
years. We're not doing many lung transplants in childhood for
pulmonary vascular disease at this point, probably no more than 10
to 15 individuals in the U.S. under the age of 18 per year;
whereas, even though we've made all these advances in therapy,
probably 100 to 200 babies, children, and adolescents who are dying
of pulmonary hypertension.
The cystic fibrosis community has made a recent discovery that
probably too many individuals who are dying of cystic fibrosis,
even in this optimistic period, without ever really having a chance
to really think through or be evaluated for lung transplant. I'm on
a committee with the Cystic Fibrosis Foundation, and I'm going to
borrow their terminology. I think it's time to probably normalize
the idea that children with pulmonary hypertension and their
families should be educated in a serial way about what the menu is
if the child's disease continues to progress. It includes new,
still only somewhat tested procedures, like the Potts shunt. We
keep looking for new medications, and I'm very hopeful about that,
but if it is end-stage, lung transplantation is an option that I
think families should be told about.
Some good, loving, responsible families and teenagers who must
assent to it say, "No, thank you." And there are worse things than
dying, but I believe that lung transplantation is an option that
should be considered. I had an opportunity to access one of my well
connected PH mothers who has been involved with many other PH
mothers on social media, and I asked her to help me understand some
of the reasons that she and other parents might consider the least
attractive parts of lung transplantation. And she was very generous
to share. I think she sent out a communication and she got a lot of
feedback. I filtered through that feedback and presented many of
those perceptions. I think there are some very legitimate
concerns.
There are only six or eight pediatric lung transplant centers in
the United States, some of whom are very low volume, and if a child
got listed at one of those programs, some of those programs have a
very high what we call wait list mortality. The chance of getting
on the list may be fairly decent, but some programs are just not
very aggressive at going after lungs, and kids die on the list, and
that's a real eventuality that I think most parents and kids
shudder at.
On the other hand, there were reasons that were provided by other
parents that I really think were a product of misinformation. One
mother said, "Well, you know the average life expectancy is only
one and a half years." That's never been true. In our own program,
we're up to an average life expectancy of six and a half years, but
I've learned that there are some parents who don't understand what
that really means. That doesn't mean that you're guaranteed six
years. It doesn't mean that at six years your lungs are going to
suddenly fall apart. It means that half of the patients are still
going to be alive at six years. And many of those patients are
going to be in excellent health.
Most of our patients recover and get out of the hospital within two
weeks after a transplant operation. They're already starting to
feel well, despite a major operation. They're on a new set of
medications, but the good news is that ... and this was another
misconception ... the side effects of immunosuppression, in terms
of how they make you feel on a daily basis, are actually
considerably more benign than some of our PH medicines, especially
the prostanoids. We are able to reduce some of those medications
over time.
I feel very good about not only the work I've done, but the
stories, the lives that I've seen. And I can tell you and your
listeners that over my almost 28 years in this field, I've probably
been involved in more than 400 pediatric lung transplants, and I
can't think of even five families that told me that they regretted
having made the decision. It doesn't mean there were always great
outcomes, but lung transplantation is an incredible partnership. We
have a wonderful multidisciplinary team in our own center, and I
know there are great teams in other centers.
As I move towards the end of my career, I'm just delighted to
continue to still be involved with pulmonary hypertension, to be
involved with lung transplantation. I hope the good Lord keeps me
around long enough that I can continue to see improvements. Life
expectancy has gotten better in PH. It's gotten better in lung
transplant. We're using more and more techniques and different
medications to enhance the lives of the patients entrusted to
us.
In the most recent era, we're still talking about somewhere between
20 and 50% of newly diagnosed pediatric PH patients are going to
die at 10 years. If it's a child diagnosed today, I want your
readers to know we don't have the curve for patients, because there
are going to be newer medicines. But what that means is, need to
pay attention that we've successfully slowed down the disease. We
haven't defeated it.
And to talk about lung transplant is not to sign a contract. It's
to have your options open. I think that bringing one's child to a
transplant center ... not for fun. Not if it's years and years
away. We're too busy to see a nice cute kid who's doing fine, who
has mild pulmonary hypertension. That would be a waste of
resources. But to be able to look into it, to be well informed,
make sure that you hear what is really considered to be an accurate
reflection of what the state-of-the-art is, you need to know what
could happen, both on the good end and on the bad end, and ask good
questions. I'm always thinking of word pictures. When you go to a
restaurant, you don't to just pick the first thing on the menu. You
want to kind of look at what's there and then maybe ask some
questions and consider it.
My name is George Mallory and I'm aware that I'm rare.
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