How do families cope with the long wait?
I talk to so many families who talk about how life is on hold while you wait, and we recognize that. We do recognize that, and although your team is not necessarily experiencing that, I promise you that all of us are anxiously awaiting the day that organs become available for your child.

But I think just try to live day by day and do the things that you would normally do. Maybe you can’t go on that cruise to the Bahamas that you were thinking about because you can’t go outside of your region, but you could still go have a picnic if your child is well enough, or you can go to the museum…just trying to live your everyday life as if you weren’t waiting, which is kind of impossible advice, I recognize. At the same time, and not to sound pessimistic, life is short and things can happen. Children do die on the waitlist, which is scary and people don’t like to talk about it, but if you’re putting your life on hold until after transplant in order to start living it, I advise you not to live that way, because you just never know what’s going to happen.

If you’re the praying type, pray. Ask your families to pray. If you’re not, if you’re the meditative type, do that, or write in journals – any of those standard coping things that you do to deal with any kind of stress. Sometimes they’ll work and sometimes they won’t, and it might be day by day what works. I think each family has to find their own routine and their own way to get through it. But live your life.

Emily Holman, MSW, LICSW, Social Worker, Multivisceral Transplant Program

 

How do families cope with the long wait?
It’s really hard! We try to provide as much support for them, acknowledging the stress and the difficulty of waiting. The challenge of keeping them medically safe while they’re waiting is often a big theme. The majority of our patients are waiting in the hospital while they’re listed and waiting for transplant, so we institute weekly family meetings with the patient and the family. We institute a daily schedule for the family, we get Child Life, physical therapy, tutoring; we get all sorts of things in there to fill up their day and try to normalize their day as best we can. And we talk about their stressors while they’re waiting; many of the families have children at home or have to go to work, and we try to help them find that balance to make it work for their children.

Heather Bastardi, MSN, RN, PNP, Transplant Coordinator, Heart Transplant Program

 

The wait is hard. My hope for people is that they feel like they don’t have to put their life on hold when they’re waiting, that they can continue doing the things that are important to them, whether it’s for the kids to be in school or keeping up with their social lives or keeping their travel plans if they have them – but it’s hard, because they never know when they are going to get the call to come for the transplant. We also want the children to be as physically active as they can be because it helps them get through transplant. For kids that are very sick this can be difficult. If their child is very sick, there’s a lot of anxiety that the transplant might not come soon enough. So we try to be as upfront as possible about where we think things are for them. We’ve had families who went camping with their kids, with equipment and all the medications during the time that they were waiting. They were close enough that we knew that we could get them if lungs became available.

Lynne Helfand, MSW, LICSW, MPH, Social Worker, Lung Transplant Program

 

How can families cope with false alarms?
Sometimes children and teens are called in because we think an organ might be available; they actually have to come in, get an IV, get blood drawn, possibly stay overnight, but then come to find out it’s not the right match for them.
Talking it out with the patients and families, rather than masking the issue helps them to understand the reality of the situation. Not just any organ will make them healthy again. We must try to find the best organ for the best chance at success for the patient. I try not to sugarcoat it, because I feel like that might be the tendency, but I’ll say, “You’re right, it stinks. We’re going to keep our fingers crossed for the next time.” And in talking with the patients, I always say, “It’s the doctors’ and nurses’ job to find the best organ for you and they’re going to make sure it’s the best one. If they go and look at it and it doesn’t look like the best one, then they’re not going to pick it for you, because they want you to feel healthy and better afterwards.”

Kirsten Getchell, MS, CCLS, Child Life Specialist, 10 South