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Lung Transplant Saves Cystic Fibrosis Patient

Aired December 25, 2000 - 2:30 p.m. ET


LOU WATERS, CNN ANCHOR: In this, the season for giving, one woman has received the gift of life. Susan Burroughs suffers from cystic fibrosis; the disease is genetic and most of the 30,000 Americans who have it will die before the age of 30. However, Susan Burroughs has surpassed the life expectancy and expects to live even longer.

CNN medical correspondent Rhonda Rowland tells us her story.


RHONDA ROWLAND, CNN MEDICAL CORRESPONDENT (voice-over): Susan Burroughs has lived her life knowing she could die young.

SUSAN BURROUGHS, CYSTIC FIBROSIS PATIENT: There was never a defining moment when I was told that it was a fatal disease. I just grew up knowing that.

ROWLAND: Knowing that the disease she was diagnosed with at age seven, called cystic fibrosis, could not be cured.

The genetic disease would eventually ravage her lungs, making it nearly impossible to breathe. The odds were against her surviving beyond high school.

S. BURROUGHS: I started college when I was 16 years old, partly because I knew I had a disease where I might not live very much longer, and I was on a mission that I was going to accomplish everything that I had wanted to do.

ROWLAND: She wanted to get an accounting degree, get married, have a child.

S. BURROUGHS: I could not live through this life and not be a mom. I wanted to be a mom more than anything in the world.

ROWLAND: Because of her disease, she could not have a child of her own, but she could adopt. Daughter Leah is five. Now, at age 39, Susan is one of the longest living people with cystic fibrosis.

S. BURROUGHS: When I married my husband at 28, I didn't think I would make it to 40; I know I'm going to make it until I'm 40 so, you know, now I'll say, well, now I'll make it until I'm 50.

ROWLAND: But the only way she can possibly make it to age 50 is with a new set of lungs. Her own are about to wear out.

The wait for a lung transplant is long; it's one to three years. During the first half of the year 2000, 3,700 people were waiting for lungs; just over 650 actually received a transplant.

To stay alive, Susan does one-hour breathing treatments three times a day. She uses a special vibrating vest to shake excess mucous from her lungs and takes more than 17 prescription medications.

Daughter Leah knows her mother has CF.

LEAH BURROUGHS, DAUGHTER: A doctor is going to cut her chest and then put her new lungs in and throw her old lungs away in a trashcan so it can't get out.

ROWLAND: But Susan is preparing for the worst. She may not live long enough to get new lungs, or she could die from the operation itself. So she's written letters and bought gifts for the special times to come in Leah's life -- her first date, her wedding, birth of a child.

S. BURROUGHS: And so I had to start thinking about, like when she loses her first tooth and when she goes to school, and will I be there for those things. And she just lost her first tooth, and I was so happy I was here; and I just cried, and I could take that letter and throw it in the trash.

ROWLAND: While she waits for a set of new lungs, she prays and draws on the support of friends.

S. BURROUGHS: I don't think I would even attempt to do this if I didn't think it would be a longer, healthier life. If it's not, I want each and everyone of you to know that I am not afraid to die.

ROWLAND: The day every person on an organ transplant waiting list waits for comes for Susan. A set of lungs are waiting for her at the University of Alabama in Birmingham.

S. BURROUGHS: I'm ready; I'm ready for the transplant. We've been waiting and praying for this for a long time; and I'm ready.

ROWLAND: The wait: one year and two months, ending with a thought-filled ride to the operating room.

S. BURROUGHS: Just please let Leah know that I loved her more than anything in the world. So I just want her to know, if anything happens, that I loved her more than anything and she has the greatest daddy in the world. And Keith is the best one for us than anybody could ever possibly have; and I just -- I hope you'll know that forever and ever.

ROWLAND: The eight-hour transplant operation is ready to begin. Susan's new lungs have arrived -- the gift of another mother who suffered a sudden death.

DR. DAVID MCGIFFIN, UNIVERSITY OF ALABAMA-BIRMINGHAM: As you can see, this is a dramatic operation that we would not be able to do without that decision that those -- that family has made at one of the worst times of their life.

ROWLAND: First, one old, damaged lung is removed.

MCGIFFIN: Hard to see that people can live with lungs like that.

ROWLAND: One new lung is put in.

MCGIFFIN: The right lung is in now, and blood's flowing into and out of the lung.

ROWLAND: Then the same exchange of lungs on the left side.

MCGIFFIN: The function of this new lung is excellent.

My expectation is that we'll probably have her breathing through that in the morning.

ROWLAND: Susan's husband gets the news; the transplant is over.

KEITH BURROUGHS, HUSBAND: One hundred million butterflies in the stomach right now. But I still feel like -- that, you know, we still have a long way to go, and so I'm trying to stay a little calm. She is just the most incredibly brave person I've ever known in all my life.

DR. RANDY YOUNG, UNIVERSITY OF ALABAMA-BIRMINGHAM: We do hope that, as she gets over her operation, she'll be getting back into a more normal routine and will be able to do things as if these were a normal pair of lungs that she had since birth.

S. ROWLAND: Two months later, even with a new pair of lungs, the doctor visits continue.

But being able to breathe again has come with a price: a scary episode of organ rejection and several changes in antirejection drugs. Four months after her surgery, Susan celebrates with a party to raise money for a cystic fibrosis foundation she created.

S. BURROUGHS: I had spent my whole life fighting for cystic fibrosis and volunteering with them, and now I have a whole new mission; and that's to get out and tell people about organ donation.

ROWLAND: Now, six months after the transplant, Susan's lungs are at almost 100 percent capacity.

S. BURROUGHS: I feel wonderful. I just absolutely feel fantastic. My life has totally changed.

ROWLAND: After surgeons saw her diseased lungs, they say, without the transplant, she had little time left to live. But with one of the most precious gifts anyone could give, the gift of life, Susan can still be a wife, a mother -- enjoy the simple things.

L. BURROUGHS: We can run and go hiking and we can go biking, and I'm glad she doesn't have old lungs and I'm glad she has new lungs now.

S. BURROUGHS: And I'm able to push her in the swing, and she'll say, come, mommy, and let me show you how to run.

ROWLAND: It's a gift she wants for all the others waiting for new lungs so they, too, can create new memories.

S. BURROUGHS: I sat and watched my daughter's kindergarten program yesterday, and I just sat there and cried. And when I went to get Leah off the stage, she said, "mommy why are you crying?" And I said, "Leah, it's just happy tears because I'm so happy to be here with you and I'm so happy to watch you because I almost wasn't here."

ROWLAND: And to be sure she's getting the most out of her new lungs, Susan's taken up the clarinet.

Rhonda Rowland, CNN.


WATERS: All right; and joining us now is Susan Burroughs and her 6-year-old daughter, Leah.

Merry Christmas, welcome.

S. BURROUGHS: Welcome, thank you.

WATERS: How are you -- the clarinet is my instrument.

S. BURROUGHS: Oh, it is?

WATERS: It takes a lot of breath control, there.

S. BURROUGHS: It does.

WATERS: You told Rhonda Rowland that your life has changed since you got your new lungs. How has it changed?

S. BURROUGHS: Before the transplant I was on oxygen all the time. I had to do respiratory treatments four times a day. I had to do tube feeding at night in order to keep enough weight so that I could survive the transplant. So I was always in the hospital; always on IVs. I couldn't even walk to my mailbox, I was so short of breath.

And last weekend I went snow skiing.

WATERS: Snow skiing -- first time in your life?

S. BURROUGHS: Well, no; 15 years ago, you know, I learned how to snow ski. But in the last several years I just haven't been able to because of my lungs.

WATERS: Playing the clarinet.

S. BURROUGHS: And that I -- I do not know music.

WATERS: Well, you've got to work on that umbersure (ph).

S. BURROUGHS: I'm learning that.

WATERS: Leah, your mommy's better now, you think?


WATERS: I didn't introduce your friend there -- that's Samantha (ph). That's a Christmas present, right? Merry Christmas.

What is it like, Susan, living, knowing that you might not live that much longer? What is that like?

S. BURROUGHS: Well, you know, I'm 40 years old now and I spent my whole life -- when I was diagnosed at seven years old they told my parents I would live five more years, and so -- and the age of survival for cystic fibrosis keeps increasing year after year and I've always been a just a little bit ahead of those odds.

But as I started pushing 40, and the doctors said I only had a couple of years to live, that was tough. That was hard; and that's why we decided that the lung transplant was my only way to live a long life and...

WATERS: So does that make you a symbol of hope for the millions of CF sufferers in this country, or are you the exception? This is a very expensive thing, I would think.

S. BURROUGHS: I think -- it's a new treatment for patients with cystic fibrosis. They've only been doing lung transplants about 12 years, but they really only have been doing single lung transplants.

And for cystic fibrosis patients, we have to have a double-lung transplant, which is real hard to find good double lungs. And I think as more and more cystic fibrosis patients are successful, more and more people are getting on the list. And I think I certainly -- when people see me snow skiing, they're going to say, hey, I'll give up all these treatments and this oxygen if I can do things like that.

WATERS: Well, you're now 10 or 11 years past the expected length of life for a cystic fibrosis patient. With the lungs, now, what are they telling you?

S. BURROUGHS: They can quote 90 percent survival after one year and 50 percent survival after five years. And that's all they'll really tell you because lung transplants are so new, basically. Hearts and livers and things have been around a lot longer. So -- but, honestly, I feel like even though they say 50 percent, I feel like my longevity could be a lot longer than that.

WATERS: And what went into your decision? I know one of your grand wishes in life was to be a mother, to have a child. And you adopted Leah, I assume six years ago...


WATERS: ... maybe longer than that. What went into that decision?

S. BURROUGHS: For adopting Leah? Well, with CF, it's genetic disease, and I knew that if I -- there was any possible way I could have a child, I did not want to pass the disease on. So adoption was the only option for us. And six years ago, I was healthy enough where I could take care of a child. Now, as time has gone on in the last couple of years, it has been a little bit harder because my disease has progressed. But it was really important to me to be a mother.

WATERS: Well, what was the consideration about Leah's future knowing that your expectancy was uncertain?

S. BURROUGHS: Well, she has the most wonderful father a child could ever want. And I feel like that so many children out there that are adopted don't even have the opportunity to have any love between a mother and a father, you know, at all. And if I gave her six great years, then I would give her a great base to start her life out on. So it was a little bit selfish on my part, and I know that. But I also knew that if something happened to me, she had the most wonderful dad that could lead her and guide her.

WATERS: Who are you waiving at over there, Leah? Are you happy for your mommy? You saw your mommy cry and you asked about her tears?


WATERS: Yes. Why was she crying?

L. BURROUGHS: Because she didn't -- she -- because that was just happy tears because I was singing.

WATERS: You were sinking?

S. BURROUGHS: Singing. She was singing.

WATERS: Oh, singing. Are you having more fun now?

L. BURROUGHS: Yes, very fun with my mom because she has new lungs and not old lungs, because I love her new lungs.

WATERS: Yes you do, yes. And you love your little Samantha there, too, don't you?

What can folks do for this foundation that you are working with to -- if they are inspired by your story to help you with other CF patients?

S. BURROUGHS: Well, the foundation I started because so much time and energy is spent for research for cystic fibrosis. And while that's very, very important, the kids are dying, and because they're not getting the medication and the treatments that they need. A lot of families can't even get to the doctor. They have to get taxis to get to the doctor. And the foundation provides medical assistance and insurance assistance for all the patients and families with cystic fibrosis that qualify. So we appreciate any donations that anyone's willing to give. WATERS: All righty. What's your life's dream now?

S. BURROUGHS: To watch my daughter grow up. That is it. If I can be here to watch my little daughter grow up, that's it.

WATERS: I think she wants that also. Merry Christmas, Susan.

S. BURROUGHS: Thank you, thank you.

WATERS: Wonderful story. Leah, merry Christmas.

L. BURROUGHS: Merry Christmas to you.

WATERS: Thanks for coming and being on TV.


WATERS: Hang on to Samantha there, OK.


WATERS: OK, good luck.



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