April 29, 2022
Each time a child undergoes heart transplantation, there is an entire team involved across multiple settings to make sure things go as smoothly as possible. This amazing gift of life doesn’t come without risks and complications, and the pediatric heart failure and heart transplant team at Children’s Minnesota wants to make sure that every primary care clinician knows how to take care of pediatric heart transplant patients before and after surgery. Join this discussion with our Kid Expert, pediatric transplant cardiologist Dr. Adam Putschoegl, to learn what you can do to help your patients with heart failure and heart transplant during each step of their journey.
Transcript
Dr. Angela Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to the Kid Experts, where the complex is our every day. Each week, we bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas, and practical tips will surprise, challenge, and perhaps change how you care for kids.
Welcome to Talking Pediatrics. I’m your host, Dr. Angela Kade Goepferd. The last week of April is Pediatric Transplant Week and to bring awareness to the need for pediatric transplant and particularly how we can support our pediatric transplant patients in the primary care setting, we have joining us today, Dr. Adam Putschoegl, pediatric transplant cardiologist at Children’s Minnesota. Dr. Putschoegl joined our pediatric heart failure and heart transplant program earlier this year, and has been a welcome addition to our comprehensive pediatric cardiology team. Adam, welcome to the show.
Dr. Adam Putschoegl: Thank you.
Dr. Goepferd: All right. So before we get into pediatric heart transplantation, I’d love to learn a little bit more about you. Tell me why this was a path for you or how your training led you into pediatric heart transplant.
Dr. Putschoegl: Yeah, I would say a lot of it was through other physicians I worked and mentors. In medical school, a great pediatric cardiologist led me down that route. And then in my fellowship, I was at Mayo and Dr. John Johnson was the transplant cardiologist there, and I loved working with him in that patient population. And so early on, it just got me really interested and just sort of went from there.
Dr. Goepferd: Tell me a little bit more about the heart failure and heart transplant team here at Children’s and what your role is on that team relative to the surgeons and other people who are involved?
Dr. Putschoegl: It’s really a relatively big team overall. There’s a lot that goes into taking care of our transplant patients, our pre and post transplant. And so working with our nurse practitioners, our surgeons, dieticians, social work, other subspecialists, it’s all really one big team. And so I sort of lead it from a cardiology perspective and being the transplant cardiologist, but it’s really input from everyone.
Dr. Goepferd: Are you involved in preparing patients for surgery, taking care of them after, both? How do you fit in into the process?
Dr. Putschoegl: Yeah, it’s really all of it. I often have to clarify it when I talk to non-medical people because I’ll say, I do transplant like, oh, you’re a surgeon.
Dr. Goepferd: Right.
Dr. Putschoegl: And so it really is talking to the family’s pre-transplant explaining what transplant is, everything that goes into an evaluation, a little bit of what the surgery looks like and then everything in the post transplant care and sort of the lifelong follow up.
Dr. Goepferd: Recently at Children’s Minnesota in 2021, the program received a CMS certification. Can you explain to us what that is and why that’s important for a pediatric transplant program?
Dr. Putschoegl: Yeah. It’s Medicare and Medicaid services and they have to look at our program and make sure that we’re doing everything by the book.
Dr. Goepferd: Mm-hmm (affirmative).
Dr. Putschoegl: And it’s really important to have that because it has to do with reimbursement and insurance coverage and really making sure that we’re doing everything correctly. So it’s really a huge deal to have that recognition, because it just really opens things up for us and what we can do.
Dr. Goepferd: And does that indicate that we have a particular track record of number of transplants that we’ve done or what goes into that?
Dr. Putschoegl: Making sure all of our protocols and everything that’s needed that we can be evaluated as a program is there, number of transplant and the amount of time that we’ve been a program.
Dr. Goepferd: Okay.
Dr. Putschoegl: That goes into that.
Dr. Goepferd: So what types of patients with what types of diagnosis tend to end up in our heart failure and heart transplant program?
Dr. Putschoegl: A big distinction is do they have congenital heart disease? Which a lot of our patients have had of course being in cardiology or do they have some type of cardiomyopathy, like a dilated cardiomyopathy, restrictive hypertrophic. And that’s really the two pathways that people get to us. And so it’s just seeing those patients, whether they’ve been in the hospital because they’ve had a lot of surgery already because of their underlying congenital heart disease or they’re coming into us previously healthy and have this new cardiomyopathy diagnosis.
Dr. Goepferd: And so ages of kids that are getting heart transplants, infants, teenagers, all of the above?
Dr. Putschoegl: Yeah. All of the above. We will even do prenatal consults because we know, especially with some of the congenital heart disease that can be at risk or they might not be a candidate for a certain type of surgical repair so they just need to have a primary heart transplant. So it really can be prenatal to 18.
Dr. Goepferd: And getting any organ transplant is still relatively rare, luckily for kids. I have a personal experience of having had a childhood friend whose brother got a heart transplant subsequently passed away after transplant. But that was the only person I ever knew who had an organ transplant of any kind. Tell me a little bit about outcomes for heart transplant now and what we know about kids, how they do after heart transplant, how long does their heart transplant last? Do they need another one? How does it go for them usually?
Dr. Putschoegl: It should and typically does go really well.
Dr. Goepferd: Okay.
Dr. Putschoegl: Especially early on. We expect 90 to a 100% survival over that first year post-transplant. A big thing we need to tell families it’s not going to last forever like you alluded to. The younger you’re transplanted the longer we expect it to last. So sort of on average, if you’re an infant maybe 20 to 25 years.
Dr. Goepferd: Okay.
Dr. Putschoegl: If you’re a teenager and above maybe more the 10 to 15 year range, on average, but you certainly hear the stories of adults who have had their same transplant for 30 plus years. And if the patients and families do everything they’re supposed to do and that heart is failing, they would most likely be a candidate for a second heart transplant.
Dr. Goepferd: How can we who are not a transplant cardiologist, those of us who are taking care of these kids in primary care settings or other settings, there are good resources or references available for us if we are worried about a kid that has had a heart transplant and we’re not sure the symptoms that they’re experiencing if it’s related to that, where would we go first to find out?
Dr. Putschoegl: I think honestly just calling us. One of us is available 365, 24 hours a day. We’re always there. And we know our patients really well. And so I think that’s often going to be the easiest thing to do.
Dr. Goepferd: So let’s flip to the other side, before a transplant.
Dr. Putschoegl: Yeah.
Dr. Goepferd: So when we identified that a child has damage to their heart, whether it’s congenital or acquired in some way, and they’re waiting for a transplant, how can we in primary care help support the family during that time and help keep kids healthy during that time?
Dr. Putschoegl: Yeah, I think it’s just making sure they’re coming to their regular well child checks, helping with any sick visits that we feel like might not be related to their heart. Some of our kids are going to wait potentially for years depending where they are on the list and so just having that good regular follow up is going to be really important. They’re still going to need their immunizations and all of the regular childhood needs.
Dr. Goepferd: So what’s the quality of life like for these kids as they’re waiting for a transplant? Are they able to participate in school activities? Are they pretty restricted? What can we sort of expect and be able to support them through during that waiting time?
Dr. Putschoegl: Yeah, it depends how sick they are and kind of the urgency of their transplant. But if they’re home waiting and a lot of them will be on something like milrinone, continuously via pick and they’ll have a backpack where they can store it. Ideally they’re going to school and living as much of a normal life as they can. Some may be limited in the amount of physical activity they can do, but just trying to be as normal as possible.
Dr. Goepferd: Do you find that kids who are a part of the transplant program here are pretty integrated in terms of school and other activities?
Dr. Putschoegl: Yeah. I definitely would say that they are. Many of the schools understand that the kids need to be limited and should be able to self-limit and we work with the schools, provide notes for families and just have to make adjustments as needed.
Dr. Goepferd: This is a little bit of an unusual question, but what is kind of the most surprising thing to you about doing pediatric heart transplant work? I mean, what did you not expect about doing it that you’ve learned along the way, or that’s really opened your eyes to something new?
Dr. Putschoegl: One of the big surprises has been how quickly they can recover.
Dr. Goepferd: Sure.
Dr. Putschoegl: We put in this brand new heart and some patients can be home in seven to 10 days.
Dr. Goepferd: Wow.
Dr. Putschoegl: And then sort of the normalcy of the life that they can live. Other places I’ve trained and hopefully here, as I see more patients, they’re doing sports, some have played football, these contact sports.
Dr. Goepferd: Wow.
Dr. Putschoegl: And just no one necessarily knowing unless they’re told or see a scar and ask about it, just getting to that normal, I think can be pretty impressive.
Dr. Goepferd: When we hear about children needing an organ transplant of any kind, particularly a heart transplant, I think we first and foremost are worried about them surviving, but then to think about them not just surviving it, but really thriving in all the ways that we want all of our kids to thrive. That’s really quite outstanding.
Dr. Putschoegl: Yeah. And that’s why we do it. Get them as normal a life as possible.
Dr. Goepferd: Anything else that you think would be really critical for those of us outside of the heart transplant team to know about these patients as we’re caring for them?
Dr. Putschoegl: This same thing we tell our parents, if there’s something going on with a kid and there’s any concern, just let us know. We always joke the top three things on our differential post transplant for any issue is going to be rejection, rejection, rejection, especially earlier after a transplant. Those are the big things as they get further out from transplant, rejection becomes hopefully less of an issue and it’s more the coronary artery vasculopathy that can develop-
Dr. Goepferd: Okay.
Dr. Putschoegl: … because the heart ages. It’s just sort of a gradual narrowing of the coronary arteries. And so chest pain, dizziness, syncope can be big red flags or something like that. So it’s to really take those things pretty seriously.
Dr. Goepferd: When you said rejection, rejection, rejection is the first thing you think of and you said immediately after, define that immediately after. What’s the window that we’re really honing in on for rejection?
Dr. Putschoegl: Yeah. I mean it can really be up to three years.
Dr. Goepferd: Okay.
Dr. Putschoegl: But I mean really first six months to a year.
Dr. Goepferd: Okay.
Dr. Putschoegl: And we’re seeing our patients regularly and getting imaging so hopefully we can catch it early if we need to, but it’s always got to be there through the lifetime of our patients, especially teenage years and compliance becomes an issue and they’re not taking their immunosuppression. We can certainly think about it then.
Dr. Goepferd: Folks who are going to experience more long term complications like you described with hardening of arteries and things like that, what’s the timeframe for that? Or is there one?
Dr. Putschoegl: We’ve seen coronary artery vasculopathy develop within six months.
Dr. Goepferd: Okay.
Dr. Putschoegl: But typically it’s more in the five to 10 year range where you see that.
Dr. Goepferd: Okay.
Dr. Putschoegl: Same with post-transplant cancer or PTLD tends to be years down the road. Some of those complications just from chronic immunosuppression that can crop up.
Dr. Goepferd: Yeah. That’s a good framework I think for us to have in mind when we are caring for kids. One of the things when it comes to pediatric heart transplant, it’s very specialized field. Before we have this program that we have at Children’s Minnesota, kids in this region would travel all over the country to get heart transplants and some probably still do. If we have a family in our care who has a child who might be heading for a heart transplant, what’s the best way to connect them with you and your program to get questions answered and learn more about outcomes and things like that?
Dr. Putschoegl: Referral to us, we’re always email, phone call away. And we can even start with a phone call with families if we need to, especially if they’re further away, telemedicine or telehealth visit and those sorts of things.
Dr. Goepferd: Yeah. I think that’s something is helpful for families just to have that touch point, knowing that they’re going to be entrusting this team with a really significant undertaking with their child’s health. So it’s good to know that you’re open to talking with primary care providers, jumping on a telehealth visit with families, whether they might be coming from far away or just not able to get into clinic.
Dr. Putschoegl: Yeah. I mean, that’s a big thing for us. Just reach out to us. We love this. We love doing this. So we’re happy to talk about it anytime.
Dr. Goepferd: Well, we’re so happy that you joined us here at Children’s Minnesota. We’re lucky to have you among our kid experts. And I appreciate you taking the time to talk to me about heart transplant today.
Dr. Putschoegl: Yeah. Absolutely. Love being here.
Dr. Goepferd: Thank you for joining us for Talking Pediatrics. Come back each week for a new episode with our caregivers and experts in pediatric health. Our executive producer and showrunner is Ilze Vogel. Episodes are engineered, produced, and edited by Jake Beaver. Lexi Dingman is our marketing representative. For more information and additional episodes, visit us at childrensmn.org/talkingpediatrics, and to rate and review our show, please go to childrensmn.org/survey.