I think probably the most challenging and the most rewarding in this job is taking care of these incredible families. Every day I learn something new about parenting from these parents and about perseverance from these kids. The biggest challenges are the biggest rewards, because they go hand in hand, and it’s such an honor to be part of their journey.
Elizabeth Blume, MD, Medical Director, Heart Transplant Program
There are so many rewards and so few challenges. The challenge I think for many people is that they have to learn to take several new medications and they have new rules they have to follow. The rewarding thing for me is that I get to spend time with patients and their families one on one and teach them about all of their new medications, and then I get to watch them grow and learn. When I see patients in clinic after transplant and they can say, “Oh hey, Jen, I filled my pillbox by myself!” or “I have been practicing, and am ready to try to take pills now instead of liquid,” or when they can tell me the names of each of the medications that they’re taking – those little rewards are fantastic for me as a pharmacist. Taking these medications is what’s helping keep their transplant working well. It’s so rewarding to see that my teaching and my time has helped make the transition into life with a transplant a little easier.
Jennifer Gilarde, PharmD
We go home knowing that someone’s day was made easier somehow, whether it’s because they received a kidney transplant, or whether they were having problems totally unrelated to the kidney transplant and they called us to talk about it. We can go home feeling like we definitely made a difference that day, no matter how big or how small. Some days are really big, some days are huge, and our checklists are huge to make sure that all these patients and families are doing well, but that is what we are here for.
The challenging part of it is dealing with a lot of different personalities, and sometimes not being able to predict how things are going to go. We always want to make sure that the patients and families are prepared, for both good days and tougher days. Some days are harder than others, and things happen that are totally unpreventable and unpredictable, and it’s about helping the families get through it… you can just see the relief on the patient’s face and you can really see it on the parents’ faces. They just come in and they’re just whole new people. That’s the best part of our job.
Courtney Loper, RN, MSN, Transplant Coordinators, Kidney Transplant Program
Most children get better, and it’s very rewarding. It’s wonderful to see them go from whatever severity illness they had to living a great life. Our goal is, if you have a picture of 100 kids, you wouldn’t be able to pick out the transplant patients in the picture. We just want them to live a healthy, normal life, and most children do that, so I think that’s definitely the most rewarding piece.
I think the challenges are that there are always bumps in the road. We try to educate families that it’s a rollercoaster at first, but it’s hard. It’s very stressful for the child and it’s stressful for the parents, but we have resources here that can help every step of the way. We really try to do what we can to help them get through all of those challenges. And it’s not a constant thing: most children will have an occasional high and low and then stable out; some kids have a bumpier ride, and we do what we can to help that as much as possible.
Laura O’Melia, RN, MSN, CPNP, Director of Transplant Nursing
These patients are amazing. They can be so resilient, often going through major life changes and many plow on through and live their life. Watching people struggle with the things that are going on for them and figuring out how they can move forward with their lives is probably one of the most rewarding aspects of my job. And once again, we see kids go from feeling very sick and really not being able to do a lot to frequently being able to do things that they weren’t able to do for years. And that is really wonderful to watch.
The most challenging is that the parents and the child (particularly during the time when they’re waiting for transplant) are dealing with difficult issues: the hope of getting a transplant and the worry that it may not come in time. It’s the duality that I think is hard. It’s hard to talk about, it’s hard to think about, and I can only imagine how hard it is to live with.
Lynne Helfand, MSW, LICSW, MPH, Social Worker, Lung Transplant Program
“Rewarding” is easy. Some of these disorders I’ve seen over the course of my career before we had a very successful transplant program: we lost some of these children, or they were disabled and sick for a very long time before we lost them. To be able to say to a family, “Well, your child has this disorder and it’s a devastating disorder that could kill him or her, but we have this life-saving option, and can return them to normal or near-normal functioning,” has been a tremendous, exciting advance in my own career over the years. So that part’s easy. And when you see the kids a year or two out at our annual family celebration day, normal children indistinguishable from their siblings and peers, of course there’s no better reward!
What’s challenging – well, once again, not every patient survives transplantation. So as we embark on this journey with the family, you’re saying you hope for the best, but you have to always say there’s a possibility this won’t work out well. There’s a possibility that serious infection will happen, or the graft won’t work, or there’s another complication, and it’s not always a smooth sail. There are definitely glitches in the road. There are infections that happen, there are mechanical complications, there are repeated hospitalizations. We have to grit our teeth and get the kids through those as well as we can. It doesn’t work out smoothly and easily for every family.
Maureen Jonas, MD, Medical Director, Liver Transplant Program
This job is one that challenges you to be a better person every day. It really makes you take a different perspective on things. The kids and the families are amazing in what they go through and what they want to do to help others, the connection they feel with their community of other transplant patients and with people in general. I think that’s an extremely rewarding part of it. We also really enjoy working with the teams. We have each other for support, and we have the team for support, and I think that’s helpful too. Obviously it’s challenging work, just the nature of it, and you have to be prepared to walk with the possibility of some sad days when you’re in this career, but it’s also very much about celebrating life while you’re here. That’s a great thing.
Kristine McKenna, PhD, Transplant Psychologist
The most challenging thing is that it doesn’t always work and sometimes they die. Some kids don’t make it or have complications that are pretty tough to deal with, and I think that’s the hardest part. I want everybody to just get the surgery and be great and do well, and that’s not always going to happen.
I think the most rewarding is, a lot of the time the kids do bounce back, and even when things don’t go perfectly, they still feel pretty good about it and it’s improved their quality and/or quantity of life.
So I tell families, I wish the survival was better, I wish I offered more than a 50% five-year survival, but I wouldn’t ever offer a kid transplant if I didn’t think it had the chance of improving the quantity and the quality of their life. The rewarding thing is that the kids often get better and it makes it worthwhile.
Debra Boyer, MD, Associate Medical Director, Lung Transplant Program
Each year we have a Family Day, and I see patients that are now in college that I took care of when they were babies! It’s really, really nice to see them. I feel a real connection, almost like they are a part of an extended family in a way. One of the kids that I saw last year, who is now going to college – he was one of the first kids whose mom donated a part of her liver. So many nights, I would sit up with that little baby in a rocking chair, just rocking him and rocking him. To see him all grown up, was just amazing.
Marilyn Moonan, RN, BSN, CPN, CCTN, Transplant Educator
What’s challenging is it’s a very stressful time for everybody. Often they have a fear that they’re not going to get an organ in time, so we have to balance the risk of going ahead with a living donor transplant in liver and kidney versus waiting on the list, so it can be stressful for everybody. But again, communication is the key, just being available to answer questions and provide reassurance as best we can.
What’s most rewarding is just watching the kids grow up afterwards. They get to a point where they come back only once a year, at least for the liver transplant, so you don’t see them that often when they’re doing well, and they’re growing up. It’s nice to see them coming back and leading normal lives and not having to be here that often!
Heung Bae Kim, MD, Surgical Director for Liver, Intestine, and Kidney Transplant Programs, Director of the Pediatric Transplant Center
Most challenging is when they’re sick and they don’t do so well. Pediatrics is a very hopeful field, but we’re used to dealing with dying kids. I think that’s very challenging.
The most rewarding is seeing them grow. They’re beautiful kids! The little pleasures in life that you take for granted, for them, it’s such a big deal! Going to school is a big deal for them. If you can get them back to school, that’s the best gift you can give them. Or get them to eat something – they fantasize about eating! That’s rewarding.
Rima Fawaz, MD, Medical Director, Multivisceral Transplant Program