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Episode #2011
Organ Donation
Brown: Natalie Bullock Brown, host
Gibbs: Debbie Gibbs, guest
Hargrove: Bettye Hargrove, guest
Mushayamunda: Dereck Mushayamunda, guest
Brown: We often hear stories about people whose lives were saved thanks to the generosity of a relative or stranger who chose to donate an organ. Now, if you needed a single organ to stay alive, what would you want others to do? And if you could give an organ to save someone else's life, would you? We'll attempt to dispel some of the myths and fears surrounding organ donation next on Black Issues Forum.
Voiceover: Funding for this program was made possible in part by UNC-TV members.
[THEME MUSIC]
Brown: Good evening everyone, welcome to Black Issues Forum. I'm Natalie Bullock Brown, and tonight we bring you a topic that's not discussed much in the African American community, unless there's someone already in need. We're talking about organ and organ tissue donation, from both living donors and those who have died. And this is an important issue, especially since, according to reports by the U.S. Department of Health and Human Services, 15 African Americans die each week while waiting for a donor organ. African Americans are also in need of 35% of all kidneys made available through donation. By contrast, only about 25% of donors are minorities. Why is the need so great among us, and why are we so absent in the giving tree. These are simple questions with complex answers. Here to shed light are our guests with both personal stories and professional expertise. Before I introduce them, please note that information in this program is for informational purposes, and is not intended for use as diagnosis or treatment of a health problem or as a substitute for consulting a licensed health care professional for medical advice, instruction, diagnosis or treatment. If you have specific questions or concerns, please consult your physician or appropriate licensed health care professional.
I'd first like to welcome to the program Bettye Hargrove. Bettye received a kidney transplant in March of 2002 after enduring years on dialysis. She's here to share her story. Next is Debby Gibbs, public relations manager for LifeShare of the Carolinas, a non-profit organ procurement organization based in Charlotte that serves many counties in North and South Carolina. We also have Dereck Mushayamunda, a family support coordinator who works with donor family members throughout Carolina Donor Services in their Winston-Salem office. Welcome to all of you to Black Issues Forum.
All: Thank you.
Brown: Thanks for being here. I think it's appropriate for us to start off with just a simple explanation of what organ donation is. And I'm going to start with Debbie, if you wouldn't mind providing that for us.
Gibbs: Organ donation is simply transplanting an organ from one person to the other. In fact, the first organ transplant was performed in the United States 50 years ago this past December in Boston between two identical twins. And since then, it was considered experimental, but now it's a common medical practice.
Brown: Bettye, I know that you have been a recipient, and we want to ask you a lot of questions about that experience. Let's start off with your condition. What was the cause or the reason for your need of a transplant?
Hargrove: The cause is unknown, Natalie, but I'm very grateful that someone out there recognized my need and went about filling it.
Brown: How long did it take for you to get a transplant once you found out you were in need of one?
Hargrove: I was just counting. I was on dialysis for seven years, I performed it myself at home for four years-we call that peritoneal dialysis-and then in the third year, I went into a clinic and had a technician to perform it for me. We call that hemodialysis.
Brown: So it took seven years before you got a transplant.
Hargrove: Absolutely.
Brown: Now, was your life in peril? I mean-
Hargrove: Absolutely.
Brown: So if you had not received the transplant at the point that you did, what were your chances of survival?
Hargrove: I was told that there would be no survival. Death would be imminent over a period of time. Dialysizing does cleanse the body to some degree, but there are always harmful bacterias within our blood that remain. So my body was tired and lifeless. I'm basically a very energetic person-
Brown: I can see.
Hargrove: I always still need to stress that to the audience. Be sure and know your body, so that when there is something going on, you can recognize it. I went from being a very energetic person to slowly needing to sit, slowly not eating well, not sleeping well. My body was just tired and lifeless and felt a bit worn out. And I knew that was way out of character.
Brown: There wasn't anything going on in your life-
Hargrove: Nothing. Nothing stressful, nothing that involved deep thinking, heavy anything. It was just an ordinary time for, a normal time of existing.
Brown: Okay, so you waited for seven years from the time you were diagnosed until you actually got the transplant. At what point in that seven years did you find out that a transplant could change everything, that, that you wouldn't have to go-continue on dialysis, that that could really change things for you?
Hargrove: Let me start back in the beginning. I was-I went to the doctor after the feeling of being tired and lifeless, and the doctor told me that levels in my body were out of control, they were rather high. Creatine and Bunn [ph], words that you will hear when you speak about dialysis and dialysis patients. I couldn't think about what was going on. And we ran more tests, went back to the doctor, ran more tests, learned that the doctor, at least the doctor felt it would be a certainty in two years I would need to go on dialysis. In that two year waiting period, I spent that time reading about dialysis, knew nothing about it other than assisting someone with the process at her home.
So it was a new thing for me. New words-it's like going into a foreign country not knowing the language, and really not knowing what questions to ask because you don't know what answers you're looking for. So I'm very grateful for libraries and medical clinics that offered information. My doctor offered information and I just began to read about it, read about what the doctor said I would need to do, what the processes would involve, all of those kinds of things. What to expect, what the doctor needed to do, what I needed to do. I wanted to truly be involved in the process of getting better.
Brown: At the point that you found out that a transplant was possible, how did you feel about the prospect of someone that you knew probably nothing about, would give you an organ, you know, to help you just-to give you life.
Hargrove: Once I got on dialysis I always believed that an organ was coming. I didn't know when, I didn't know where. But the day that I heard it, I was in my seventh year, as I said, and actually there was a woman in the clinic with me who was suffering-very frail, very sickly, and I was praying for me. I wasn't sure how sick she was, or how long she could maintain dialysis. And on that day of praying for her, I became the one who was the organ donation. I got a call from Duke when I returned home from dialysis telling me that there was a kidney there for me. All I needed to do was come. I said, "Can you give me about five minutes? I'll be there!" And so it was. Not quite five minutes, but I was there, so happy to be there. I learned about the donor-
Brown: What did you learn, what did you learn about the donor?
Hargrove: Well, learned that the donor was of a different race, she was a white female, 28 years old, she had been unfortunately involved in an accident, her parents had given the permission to giver her organ to me. I felt very special, very grateful, and very almost all things you can think of, just very blessed. We-on that day, we underwent the process of placing her organ into my body.
Brown: And it seems that you've been doing well ever since.
Hargrove: Been doing great.
Brown: And that's awesome.
Hargrove: That is awesome.
Brown: I want to move onto Debbie because you can-there's a lot of thing in Bettye's experience that I'm sure our viewers are thinking, "Ooh." Feeling a little anxious about. But before we get to that, tell me about your organization, tell us about LifeShare.
Gibbs: Well, LifeShare of the Carolinas is a regional organ procurement organization. We're one of 58 nationwide, there's two in North Carolina, the other being Carolina Donor Services. And what we are is basically the link between the people who need transplants and the donors who make those transplants possible. So basically, we facilitate transplants, we recover organs from 37 hospitals in our region, as well as recovering corneas to give sight to people who are blind, and other tissue like heart valves, that either save or enhance the quality of life for patients who need them.
Brown: And Dereck, what is the relationship between your organization and LifeShare, if there is a link? But what does your organization do as well?
Mushayamunda: We pretty much do the same things, it's just the region divided. LifeShare covers the other part, the Carolinas and South Carolina, and we cover North Carolina and parts of Virginia, we cover 79 counties. And we work with 105 hospitals and four transplant centers. We worth with East Carolina, UNC, Duke, and Baptist Hospital, North Carolina Baptist Hospital.
Brown: So let me go back to Debbie. When you deal with African Americans in particular. Since we often are the ones who are in need of transplant or organ donations at higher rates than possibly the mainstream population, what are some of the challenges that you face working with the African American population?
Gibbs: Well, what we have learned is what some of the barriers are toward donation among the African American community. And we actually did some focus group research through the Coalition on Donation with an ad campaign that we developed for African Americans. And what we learned that lack of information is the biggest barrier that African Americans have to donation. It's just not on our radar screen. Unless you have a loved one who is in need of a kidney or someone who died and was a donor, there's really not a lot of reasons for African Americans to think about it. And that's why shows like yours are so important. Beyond that we also learned that there is a real mistrust of the medical community from African Americans, and that's understandable, considering, you know, the Tuskegee experiment and other experiences that are in our past. Still, there is this fear that if someone declares on their driver's license that they're a donor, or if they sign a donor card, there's a fear that they won't be given proper emergency treatment in the event of an accident. So what we try to do is to dispel those barriers, and to let people know, for instance, that if you are a potential donor, there's not someone at the hospital who's rummaging through your purse, through your billfold, looking for information. You know, when you go to the hospital, no one knows who's a donor and who's not. And the doctor that declares a person brain dead, which is what you have to be to be an organ donor, by law cannot be a member of the transplant team, so you don't have to worry that your doctor has a conflict of interest. And as Dereck mentioned, there's only four-no, five transplant centers in the State of North Carolina. He mentioned four and the other is Carolinas Medical Center. So given that there are only five hospitals, chances are everybody that's black is not going to donate, or at least not going to die in one of those five hospitals. So you really don't have to worry about that. We do know that that's one of the large barriers. And also, one big concern are the appearance of the body for funeral arrangements. So I'd like your viewers to know that bodies are not disfigured. The people who are donors have open casket funerals all the time, if that's the family's desire.
Brown: Dereck, let me get you back in here. I understand that about 27% of living donors are African American, 18% are deceased. What does your organization do to try and get more African Americans to donate, give them the things that Debbie just talked about, the barriers to African Americans actually wanting to donate.
Mushayamunda: We have also developed an African American task force, which comes together and works together to try and explore ways that we can be able to educate more of our people to understand, like what Ms. Gibb was saying, just to be aware of what happens in the process to become an organ donor. And this task force has done some concerts throughout North Carolina and part of South Carolina as well, just to glean awareness. When they have these musical concerts, performed by African American communities, they help, you know, these churches to at the same time let people be aware of how important it is to be an organ donor.
I am also part of a conference in Winston-Salem, black ministers conference, of which I am able to talk to the black ministries as well and sit with them on the forum and discuss some of these issues. And as a result of that we're seeing a lot of our own ministers, black ministers going out and talking to their own congregations about the importance of organ donation. So this has helped a lot, tremendously to make a world of difference.
Brown: That's a great segue to a PSA that we'd like to show. Debbie, if you would, just tell us a little bit about this PSA.
Gibb: This public service announcement was developed by the coalition on donation, I co-chaired it with a woman-Ruth Duckinbel [ph] from Tampa, Florida, and what we tried to do was we went to five different cities across the United States and did focus group research to determine what the barriers were, and then based on that information, we worked with a black ad agency, Matlock out of Atlanta, to develop public service announcement for television, radio, and for print publications. Targeted at the African Americans. And we learned, for instance, we had a soft spot for children. So you'll notice this spot focuses on a young man.
Brown: Well, let's take a look at a PSA that was done by LifeShare.
[MUSIC PLAYS]
Voiceover: Twelve percent of the U.S. population is African American. Thirty-five percent awaiting kidney transplants are African American. Zero lives will be saved if you do nothing about it. Only you have the power to save lives. To learn more, call or visit shareyourlife.org.
Brown: That was a very important message for African Americans emphasizing how important organ donation is to our community. Another important message, or something important for us to understand is how these organs are procured for African American families, for anyone who needs an organ donation. Dereck, talk a little bit about the process. It seems like it would be very difficult for you to, once someone has died, go in and talk to their family members about donating that deceased member's organs. How do you do that?
Mushayamunda: We are notified by the hospital, the hospital calls us when there's an imminent death. And when they believe that this death is going to occur through brain death, so when they know that and they call us, and when I come to the hospital, what I do is to touch bases with the bedside nurse to get some information about what's going on. As well as the attending physician. When they give me all the information that would help me to know the family dynamics in the situation and the _____ dynamics of the patient, then I can be able to put all these things together, or all this information together. When I have all this information together, or when the patient is finally declared brain dead after the brain death testing has been done to make sure that the patient is dead, that's when the doctor prepares to go and tell or break the news to the family that their loved one has died. And they have to use a language that the family can really understand that their loved one is dead, so that there's no misunderstanding as to whether there are any possibilities that their loved one is in a coma.
Brown: Right, let me just interrupt you for a moment. I'm sure that one of the things that African American donors, or potential donors are concerned about is that my family member may not really be dead, and you're just trying to take his life just so that you can get these organs. How do you-it sounds like you go through a long process to just make sure that you can assure the family that your family member, we have not taken advantage of anything, this was going to happen.
Mushayamunda: That's right. That's the reason why we have to have all these tests done. Most of the hospitals have at least two tests done to make sure that the patient is completely dead so that there's no function at all. The brain is completely dead, the patient has died. So that when we talk to the families, they are really aware that their loved one has died. And when I get to the point of approaching the family, I first of all ask the family, what have they understood from what the doctor has told them, so that I can hear the family say, "The doctor told us that our loved one has died." Sometimes that's the way we find out that sometimes some families say, "Well, the doctor told us that there's nothing else they can do," but they did not use, maybe the doctor did not use that word "dead," so as a result of that, the family still thinks there's still some hope. There's still a miracle, something can happen. So we try to make sure that it has been forth to the family clearly, so that when we talk to the family, we work with the family throughout the whole process just to explain the brain death, how it occurs, and what happens to the brain when the brain has been injured. So that the family's aware of all the things that have happened. Then we can come to the point where we say to the family, "Here is the information that we want to give to you that you may make an informed decision as to what your loved one would have wanted to do, or what you would want to see coming out of this tragic situation."
Brown: Let me get back to you, Debbie. Is there a difference in what-clearly there's a difference between a deceased donation and a living donation. How often does a living donation-excuse me-occur among African American donors? And just give us a brief synopsis of the difference.
Gibb: Well, basically the difference between living and deceased donation is what Dereck described-is deceased donation where someone has died and by law, hospitals do have to call whatever their organ procurement organization is with that information. And so what we try to do is to talk to people so that they can make decisions before there's a tragedy and hopefully tell their loved ones their wishes, and then they can act on them knowing that they are carrying out what their loved one would have wanted, versus having to second guess whether or not they're making the right decision. Now, living donation in the United States has now surpassed deceased donation. There are more living donor transplants performed in the United States than there are donations or transplants performed from deceased donors. For African Americans, living donation is particularly important because, for instance, nationwide, we're 35% of the waiting list for people who need kidney transplants. In North Carolina, 63% of the waiting list is African American. Now, it's due in large part to the fact that African Americans are four times more likely than whites to suffer from high blood pressure or diabetes, both of which cause kidney failure.
So what the African American community can do to help to do something about this disparity with this large number of people who are waiting for kidneys in particular is to consider living donation. People live very well with just one kidney and you can, for instance, decide that if you have a loved one, a family member, or a good friend, a church member, who you know is on dialysis and who would benefit from a kidney transplant, you can talk to that patient or visit one of the five transplant centers in the state, and see about donating a kidney. People will say, "Well, suppose I need that kidney later?" Well, the truth of the matter is that if your kidneys are going to fail, you don't lose just one, you lose both of them. And so before they would allow someone to donate a kidney, the person who is the potential donor does have to be in very good health to make sure that there aren't any risks to their own health and that there is going to be a satisfactory outcome.
Brown: That is just so much to understand about organ donation, but we appreciate so much all of you being here today. Bettye, thank you for telling your story, and Debbie and Dereck, thank you for your expertise. We're just so grateful to our guests for coming out tonight, and we hope that you've benefited from tonight's discussion. Once again, information in this program is for informational purposes, and is not intended for use as diagnosis or treatment of a health problem, or as a substitute for consulting a licensed health care professional for medical advice, instruction, diagnosis, or treatment. If you have specific questions or concerns, please consult your physician or appropriate licensed heath care professional. To learn more about becoming an organ or a tissue donor, or about the work of our guests, visit us online at www.unctv.org/bif, or call us at 919-549-7168. Thank you for joining us tonight. For Black Issues Forum, I'm Natalie Bullock Brown reminding you to be encouraged, no matter what. Good night.
[THEME MUSIC]
Voiceover: Funding for this program was made possible by contributions to UNC-TV from viewers like you. Thank you.
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