Social Workers Help Navigate Path To Transplant

Guest

Mary Burge, heart transplant social worker at the Lucile Packard Children's Hospital

Each year, some 2,000 heart transplants are performed in the U.S., and the number of people on the waiting list is even larger. Between finding the perfect donor to worrying about insurance, the wait can be grueling, but heart transplant social workers are here to help.

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NEAL CONAN, HOST:

This is TALK OF THE NATION. I'm Neal Conan.

Every year, about 2,000 people receive heart transplants in this country. Many more remain on the waiting list. As patients wait for their operation, loved ones worry about medical insurance, the drugs, a long-term place to stay near the hospital, how to maintain a sense of hope and about whether the surgery will work. There are social workers who specialize in these cases to help the patients and their families.

If you or someone in your family had a transplant, call and tell us your story. 800-989 is our phone number. 800-989-8255, if you want to add the last four digits. The email address is talk@npr.org. You can also join the conversation on our website. That's at npr.org, click on TALK OF THE NATION.

Mary Burge joins us from her office at Lucile Packard Children's Hospital in Stanford, California where she is the heart transplant and outpatient cardiology social worker. Nice to have you with us today.

MARY BURGE: Good morning. This is Mary Burge.

CONAN: Part of your job is to help families maintain some semblance of a normal life during what has to be a very stressful period. Tell us about the patient from Oregon waiting for a transplant as part of a large family with four other siblings.

BURGE: This particular family, I have had the pleasure of knowing for the past six years because their older daughter had a heart transplant when she was 6 years old. So this family had some experience of putting a child - helping a child through a heart transplant. So in some ways, it might make it easier, but I think it also makes it much harder as they're trying to go through this experience with another child who is 8 years old.

CONAN: Having done it before, a learning curve. But, boy, it...

BURGE: But an emotional rollercoaster of a unique sort. It's that, oh, here we go again, deja vu all over again, instead of what might be a fresh new challenge.

NEAL CONAN HOST: Is working with children more challenging than older people?

BURGE: Not necessarily. I worked with older people - that is adults over 18 for about 25 years at Stanford Hospital - and I truly enjoy working with both. I think the challenges for a family, however, are quite different when the patient is a child. For one thing, the child cannot assent to the surgery. Children under 18 can't consent, but little ones cannot give their opinion as to whether or not this is a good idea. So this puts incredible pressure on parents.

And this was especially true with our very first young child who received a heart transplant, Lizzy, in 1984 because no one had ever transplanted a child that young before. So that was an awesome responsibility for those parents as well as for the team.

CONAN: And I wonder, how did you try to explain this to a child - to that child, Elizabeth Craze?

BURGE: Well, it was very hard to explain to a 2-year-old what she might be going through. She'd hung around the hospital a fair amount because her older brother had had a heart transplant when he was 16, so hospitals were not foreign to her. But the experience was, of course, quite different. Her parents did a fabulous job in keeping her life as normal as possible.

That particular family also took lots and lots of photographs, beginning when Elizabeth was two - well, they've taken them before, of course - but pictures all the way up to today that she's 30 years old, which they have shared with me. So now I have one great tool - many of them actually - to help prepare new patients and families for the transplant process. I have lots and lots of photo books now.

CONAN: Is there one question that you get more often than others?

BURGE: Oh, let's see. Most people have very similar questions. Not once - well, everyone wants to know when is the transplant going to happen. And I think that makes the fact that we cannot predict when a donor heart will be available for an individual, it makes it especially hard and stressful during the waiting time. I think most people are told by their parents and teachers if there's something you really, really want, you do everything you can to go after it. And this is a situation in which basically you just have to wait.

CONAN: And when a heart does become available, all of a sudden it's rush, rush, rush.

BURGE: It's rush, rush, rush. Yes. Yeah.

CONAN: That's a whole 'nother dynamic.

BURGE: Yes. In some ways I think it's an unthinkable situation in life to consider getting someone else's heart put into your body. People ascribe all kinds of emotions to the heart that they don't, say, to the kidney or the liver. The heart is supposed to be the seat of feelings and love and emotion and spirituality. And changing your heart for the heart of someone else has - is more emotionally charged, I think, in many ways than, say, getting a kidney transplant, which is also very traumatic.

CONAN: We're talking with Mary Burge, the heart transplant and outpatient cardiology social worker at Lucile Packard Children's Hospital at Stanford University. And we'd like to hear from those of you in the audience who've had a heart transplant about your story. 800-989-8255. Email is: talk@npr.org. And we'll start with Suzanne. Suzanne on the line with us from Modesto, California.

SUZANNE: Hi. Hi, Mary.

BURGE: Suzanne, hey.

(LAUGHTER)

SUZANNE: How are you?

BURGE: I'm good. Oh, I was just telling people how I had all these incredible photo books, and now we have someone on the line who actually made one of the very, very best ones.

SUZANNE: Oh, my, what a compliment. Thank you. What you were saying about Lizzy - I just wanted to let everyone know. My daughter had a heart transplant at the age of two at Stanford, and Mary was our social worker, still is. And at that time, I mean it's so traumatic, but she told me about Lizzy. She told me about how she is doing well, and she's an adult. And that's all I needed to hear. If just one person can make it, just, you know, if this can just work, that's all the hope that I needed. And it was so helpful, Mary. And I just wanted to let you know, that was part of the reason I made a book because I thought somebody else needs to see Serafina's story.

BURGE: And many, many people see Sera's story quite regularly because Serafina was one of the very first children to wait for transplant on a Berlin heart left ventricular assist device.

SUZANNE: Right.

BURGE: It's used when a child's heart is truly failing, and there's a chance they might not survive to get a donor heart. So the pictures of Serafina on the Berlin heart are so valuable and helpful.

CONAN: How is Serafina doing?

SUZANNE: She is doing great. She is nine. And she's had almost no rejection, and everything is going well.

CONAN: And you said that Mary was your social worker and still is?

SUZANNE: Well, yes, I think so. Every time we visit, practically, she is there to chat with us, which we enjoy very much.

BURGE: Yes, I am still your social worker.

(LAUGHTER)

BURGE: It doesn't stop.

SUZANNE: I hope not.

(LAUGHTER)

BURGE: No, I hope not. I hope not also. It's great pleasure to see how children that I knew in the early, very scary stages of their illness, how they're turning out. And Suzanne continues to send me wonderful photos of Serafina, including one which I put up in the clinic the other day of Serafina doing a hula-hoop, well, on a boat in the middle of a lake.

(LAUGHTER)

CONAN: Suzanne, thanks very much for the call. And we wish Serafina the best.

SUZANNE: Thank you.

CONAN: Let's see if we go next to - this is Shelly. Shelly with us from Troy, Michigan.

SHELLY: Yes.

CONAN: Hi. You're on the air. Go ahead, please.

SHELLY: Heart transplant is a process, and the social worker is a key part of that process.

CONAN: When did you have yours?

SHELLY: I had mine on February 26 of 2011.

CONAN: Not a date you're likely to forget?

SHELLY: No. Absolutely not.

CONAN: How are you doing?

SHELLY: I'm doing very well right now.

CONAN: Ah. And was it scary?

SHELLY: The whole process is scary. I started with heart disease back in 2000, and I ended up with a heart pump which I had for over two years before my transplant. Went through two different institutions before I finally received my transplant. So yeah, it's - the whole thing is very scary, but the desire to live is very strong.

CONAN: And I wanted to ask you, the desire to live, but this disease is very debilitating. What is it like A) you've got a new heart, you've got all kinds of drugs coursing through your system, and I assume you have been doing a lot of exercise.

SHELLY: I do exercise every day. I'm on the treadmill 45, 50 minutes.

CONAN: No, I meant before you got the surgery.

SHELLY: Oh, before my surgery I had to stop for probably about a year and a half.

CONAN: Yeah. And so what was it like recovering?

SHELLY: It's a challenge. It's - you have to learn that it's baby steps. And you cannot expect yourself to be right where you left off. It's slow-going. It's a great adjustment. But you just can't get discouraged. You just have to keep putting one foot in front of the other and realizing that tomorrow is going to be better.

CONAN: Mary Burge, does that sound familiar?

BURGE: Absolutely. I love what you said, Shelly, about not - teaching yourself not to expect to just pick up the pieces and be exactly the same as you were before you got heart disease.

SHELLY: Exactly.

BURGE: In a way trading one set of problems or challenges for another, but a much better set.

SHELLY: Absolutely. The best outcome possible is with transplant, and we know that walking in, and we know it's one set of problems for another. You just have to go in with your eyes wide open.

CONAN: And what did your social worker do for you, Shelly, that you still remember?

SHELLY: Just absolutely tremendous information, especially on health care. The best way to pay for things, because it's - you're talking major money. I was very fortunate because I was disabled and able to be on Medicare before my transplant, which any social worker knows is key to how things will be paid for in the future. And that was information I did not get from my first institution, but I did get from my second institution. And just the emotional support and connecting you with other patients who have been through the same process is very helpful.

CONAN: Well, Shelly, continued good luck.

SHELLY: Thank you.

CONAN: We're talking with Mary Burge. She's a heart transplant and outpatient cardiology social worker at Lucile Packard Children's Hospital in Stanford University. You're listening to TALK OF THE NATION from NPR News.

And this email from Lois in Grand Rapids: Four of my brothers and sisters were struck with idiopathic cardiomyopathy. Two of them died before transplants were a viable option, two received transplants. The first to receive the transplant developed a number of problems and eventually died of non-Hodgkin's lymphoma. However, the second brother to receive a transplant is still alive and well after 17 years. We know the value of the transplant program and particularly appreciate the help of the transplant teams, including the coordinators and the social workers.

And Mary Burge, I think that word - you've used it before too - team - you're a part of one.

BURGE: That's one of the things that I like immensely about my job, is feeling that I'm working as part of a team with cardiologists, surgeons, physical therapists, occupational therapists, a child psychologist, child life specialists, nurses, transplant coordinators - we all have our own roles, and that's very - that's very satisfying.

CONAN: Let's go to Susan. Susan with us from Mt. Vernon in Illinois.

SUSAN: Yes.

CONAN: Hi. You're on the air. Go ahead.

SUSAN: The only thing I can say, if it wasn't for the transplant teams that we have in so many big cities that can help us, that have, you know, gone through what many of the other people have gone through, I don't know what we would do, because heart transplantation has come a long way since me. And it saved my life with the Lord - with the Lord of - you know, the help of the Lord also.

CONAN: Mm-hmm. And...

SUSAN: And I'm grateful for all the heart coordinators I had, and especially one young lady. She's near to my heart, and we're still friends, and I think we will be until the end of time.

CONAN: And when...

SUSAN: If I have a problem, I can simply just call her, and she helps me out, picks me up and makes me feel good.

CONAN: That's your social worker?

SUSAN: Well, it's a heart coordinator, yeah. And we've become - since me being in the hospital (unintelligible) with her, she was always there at my beck and call. And let me tell you, she has pulled me through a lot. And like I said, we're very close friends to this day and probably always will be.

CONAN: And when was your surgery?

SUSAN: It was done on January 17, 1983.

CONAN: 1983, so some time ago.

BURGE: Whoa.

SUSAN: Yeah. (Unintelligible) well, this coming January 17 of 2013, I will be 30 years out.

CONAN: Mary Burge, you said whoa, that's early.

BURGE: That's wonderful, yes, yes. I was part of the Stanford heart transplant team at that time, and it's wonderful to hear from people who have survived that long. That's just great. You must be doing everything right, Susan.

SUSAN: Yes. I go and stay on my diet, and I exercise. Now, I'm 30 years out. Once in a while I cheat, but I pretty well know how far to go and then quick cheating, you know.

(LAUGHTER)

SUSAN: And all I can say is I do my exercise. I try to eat right the best I know how. And all I can say is the good Lord and with the team at St. Louis University that helped me, I've come a long way. And I always tell my kids, I plan to live to be 100, but only the good Lord tells me when that can be possible.

CONAN: I understand. When you do cheat, Susan, what's your failing?

SUSAN: Well, I think once in a while I'll - I like to eat out, and I like to grab fast foods. Well, I can go so far up to the limit, and I know when to stop...

(LAUGHTER)

SUSAN: ...because, you know, really fast food is a terrible thing to put in your body. But I think anyone that's human, when they're out on the run, they'll grab something, you know, at a fast food place, which is really a no-no. But I don't do it too often. I - like I said, I know when my ankle starts slowing or something, or I'm thinking, no, I shouldn't do this, I start feeling guilty, you know, I'm thinking, now, the good Lord's given me second chance; I better watch what I'm doing, and I back off.

CONAN: OK. Stay away from the fries too.

SUSAN: Yeah. Oh, I haven't had a French fry in - I will cheat and have a hamburger. But when it comes to French fries, I guess I sickened myself out on them when I was a teenager running round all the time grabbing hamburgers and French fries. So I stay back off of them.

CONAN: Well, happy birthday again next January.

SUSAN: Well, thank you.

CONAN: And Mary Burge, thank you so much for your time today.

BURGE: My pleasure. I've enjoyed it very much.

CONAN: Mary Burge is the heart transplant and outpatient cardiology social worker at Lucile Packard Children's Hospital in Stanford. She joined us by phone from her office there. Tomorrow, the Para Olympic games, plus our favorite film buff, Murray Horwitz, will join us. It's the TALK OF THE NATION from NPR News. I'm Neal Conan in Washington.

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