Preview Mode Links will not work in preview mode

I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

Use the search bar above to search episodes by topic. Search "phawareMD" to discover podcasts with medical professionals.

Get our custom smartphone app (for iPhone™, Android™, and Amazon™ devices). It's the most convenient way to access the phaware™ podcast.

The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

To learn more about PH visit phaware® is a 501(c)3 organization. © Copyright 2015. All Rights Reserved.

Generously Supported in part by Actelion Pharmaceuticals US, Inc., Bayer, United Therapeutics Corporation, Acceleron, CVS Health & PhaseBio Pharmaceuticals.

Nidhy P. Varghese, MD - phaware® interview 336

Aug 4, 2020

Nidhy P. Varghese, MD is an Assistant Professor of Pediatrics and the Medical Director of the pediatric pulmonary hypertension program from Texas Children's Hospital.  In this episode, Dr. Varghese discusses comprehensive care centers and centers of excellence in #pulmonaryhypertension and how that can be helpful for your child.

Hi. I am Nidhy Varghese. I am a pediatric pulmonologist and I'm the medical director of the pediatric pulmonary hypertension program at Texas Children's Hospital in Houston, Texas.

Today, I'm going to talk about comprehensive care centers and centers of excellence in pulmonary hypertension and how that can be helpful for your child.

I don't necessarily mean comprehensive care centers as defined by the Pulmonary Hypertension Association or centers of expertise as defined by the PPHNet, two organizations with which I'm affiliated, but I wanted to concentrate more on the importance of seeking out expert care at expert centers for your child's pulmonary hypertension.

What distinguishes a center as being a center with expertise, a specialty care center for pulmonary hypertension, is the infrastructure that's present. That does not mean just the people who are there, the physicians, but it means also the team and the resources that they have to offer the patient. The team has nursing support that is familiar with pulmonary hypertension, pharmacy support that is well versed with the various treatments that are offered or available pulmonary hypertension, advanced practice providers, exercise specialists or physical therapists. You have dieticians, echocardiographers who know how to do an echo for evaluation of the right-heart, cardiologists, pulmonologists, et cetera. It is a whole cadre of people who work together for the child, keeping pulmonary hypertension at the forefront of that and bringing a multidisciplinary or in other words, comprehensive evaluation of the child that can then lead to more emphasis on looking at long-term outcomes, on interventions in a timely fashion and hopefully really supporting quality of life.

The centers where expertise is located are going to be peppered throughout the country, but that doesn't mean that you can't get care with your local physician or local cardiologist or pulmonologist. However, you can certainly get consultation from some of these experts centers. There are center maps available on the PHA or on the PPHNet website, and they will show you where some of these expertise centers are located.

The importance of a conversation with a PH expert or a PH specialist really can't be overstated. They can really help the local physician care for your child and be aware of other opportunities for newer medications, newer combinations, in addition to getting them evaluated for intervention such as atrial septostomy or a Potts shunt or a lung transplant. These are things that are going to be offered more at the experts centers. Then at a smaller institution or an institution that has less experience with pulmonary hypertension.

To be regarded as a center of excellence, you have to build it. When I first started at Texas Children's, we had a pulmonary hypertension program and that program over time grew and as it grew we added infrastructure of nursing coordination, of nursing support, advanced practice providers, increasing number of physicians. We added in exercise specialists, nutritionists, pharmacists and it created a team that is dedicated to pulmonary hypertension. We're constantly evaluating our own practice. We're doing that through meetings on a regular basis and learning from other people in the country.

We follow a large number of children. There is some expertise that comes to us with experience and we follow some of the sickest children, because we have a lung transplant program affiliated with us. That also gives us additional experience. For those reasons, and the fact that the program has been around for some time now, we are considered a center with significant experience and expertise in pediatric pulmonary hypertension.

When kids are old enough to transition out and that typically happens sometime between the ages of 18 and 25, when kids reach adulthood and we are contemplating options coming from Texas Children's, our preference is to transition children or transition these young adults to other centers where there is significant experience to continue managing them with the cutting edge of therapeutic technology, as well as any interventions that they may need down the line. We seek out other centers with expertise and experience to manage these young adults.

One of the most exciting times I think for our program was when we added a nurse coordinator. That really, I think, marked our transition from a program that was taking care of these kids to a program that was paving the way for these kids. The addition of our nurse coordinator enabled us to seek out medication opportunities for children in a way that we could not before and also to care for patients in a more in depth way of communicating with them, advocating for them and making sure that we were really giving them the best therapy that we possibly could. Having that nurse coordinator added really elevated the program and helped shape it to become what it is today. From that moment on, it really has been very exciting at Texas Children's. We've been adding more physicians, adding more support and really building out this infrastructure and our program has grown dramatically.

I think it's been extremely humbling for us in the program to see the growth and to care for every one of these patients. We are firmly committed to continuing to build our program out with more resources to continue the same standard of excellence for every additional patient who comes to us. A new diagnosis is hard. Getting a diagnosis of a disease is always challenging. When that disease is pulmonary hypertension, there are so many other layers to it.

When I am faced with a new family and we are talking about pulmonary hypertension, I try to do this in stages. So, talking about what is pulmonary hypertension, drawing pictures of what that means for the heart, what is happening in the lungs, and then talking about what that means ultimately for the family's child and the life that this child can expect. But then really trying to bring it back to there are so many therapies that we can offer now.

20 years ago, the therapy choices were limited and therapy choices have been increasing and we've added so many in the past couple of years that kids have options now. With those options, we really do see improvement in quality of life, at least for many of these children. I try to maintain some hope while being still realistic and cautious because this is pulmonary hypertension we're talking about still. But I think that families when they come, they need to have the information that they need to understand that as the PH team, we have some hope and we are hopeful that these medications will work. We are hopeful that there will be more medication options out there that might suit your child better. Because of all this hope, we all continue to do what we do to treat pulmonary hypertension patients and we continue to advocate for our patients.

I want to share that hope that I have for my patients with these families who are taking care of their children. That's one of the big things I try to have families walk away with, but a new diagnosis is always challenging and getting that information I think is crucial. This is one of the things that I struggle with for these families is making sure that they get good information. So many of the families are looking on Google or perhaps talking to other families using social media, et cetera. By the time they get to our center, they already have some preconceived notions. They've already learned about some things and it's not always good what they've learned or what they've heard and that can sometimes be very damaging for the family. Again, I think really getting the diagnosis and getting that discussion of what pulmonary hypertension means.

Having that conversation with someone who has the experience to take pulmonary hypertension along the spectrum. That means diagnosis, complication, death. You're talking to somebody who knows what that looks like, knows what they can or cannot do and has a good idea of a game plan to move forward.

I find it really helps when families are talking to somebody who has very little experience with pulmonary hypertension. That person really is not going to be able to paint them a picture that's as comprehensive as can be painted in a center with expertise.

The key here is not to say that pulmonary hypertension care cannot happen anywhere outside of a an expert center, but that expert centers are here. We are peppered throughout the United States and North America, and we are here to serve as your primary site for your child or as a consulting site for your child.

The thing to take away here is that specialty centers for pulmonary hypertension or these expert referral centers for pulmonary hypertension, we are here to support you, to support your local physician, to support your child most importantly. We can be a resource and we should be a resource for anyone who is not as familiar with pulmonary hypertension, who doesn't have the expertise. We certainly want to partner with people and also to serve ultimately as destinations for these children, especially as their pulmonary hypertension worsens.

I'm Nidhy Varghese, and I'm aware that my patients are rare.

Learn more about pulmonary hypertension trials at Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: #phaware #ClinicalTrials @TexasChildrens @TCHPulmonary