For years, professional wanderlust seemed to be Jeanne Dumestre's calling. She drifted from career to career -- cook, upholsterer, food store manager, nightclub operator -- before she finally decided to give nursing a shot. "When I went to nursing school, I never thought I would stay interested in one area," she says. "HIV/AIDS changed that."
Fifteen years later, Jeanne is more committed to her job than ever, and is receiving well-deserved recognition for her dedication to HIV-positive women in the southern United States. As a nurse practitioner in the HIV Outpatient Program at the Louisiana State University Health Science Center's Maternal Child Clinic, Jeanne provides free care to about 400 women, many of whom are African American and most of whom are poor. Her clinic offers a huge range of services, from primary medical care to psychiatric help, from dental care to gynecological services. "Women are the most complicated group to take care of when it comes to providing proper health care," Jeanne explains, "because their lives are so complex and they are most likely taking care of other people. Women always pay attention to themselves last."
Complicating matters even further, HIV stigma is alive and well throughout Jeanne's area. Some of her patients come from as far away as Baton Rouge -- 90 miles to the west -- simply so they can avoid the risk of being seen near an HIV clinic in their neighborhood. To help foster a welcoming environment in her clinic, Jeanne always treats her patients with respect, empathy and compassion. They've repaid her kindness and dedication with hugs and thanks -- and by putting her on the path to win an HIV Leadership Award.
What made you decide to go into HIV care?
In 1985, when I started my studies in community health nursing (graduate school), HIV/AIDS was really hitting New Orleans. I decided to do some projects/papers on HIV/AIDS. Everyone involved in this work blew me away. I decided that year that I wanted to get involved and work side by side with these incredible dedicated people. Many of them are still coworkers/dear friends.
What is the demographic of your patients?
We have about 3,000 patients, the majority of them are African American, and 30% are women. We do primary care for all our patients, but they are all HIV positive, less then 1% have other infectious diseases, but don't have HIV. One side of the clinic is just maternal/child and those patients are 100% HIV positive; the other side is all men. We have a good amount of children who come to our clinic, they will come for a year and then they will also see a physician in the community. We don't see many new kids now. Most of the children who were born HIV-positive had mothers who didn't get prenatal care. Our clinic is connected to Charity Hospital. It used to actually be in the hospital, but now we are a few blocks away. We take up two floors of a four-story building, but we are rapidly outgrowing our space. We offer a lot of services; social work, psychiatry, pharmacy, dental, obstetrics/gynecology just to name a few.
I take care of only women, ranging in age from 24 into their 70s. We are providing free care paid for with funds from Ryan White that are routed to the clinic, so most of our patients are poor, but they come from all around. There is a clinic similar to ours in Baton Rouge, but some of our patients come to our clinic so that they don't have to be seen going into the clinic in their hometown. Baton Rouge is about 90 miles away from here. It is quite a commute, a lot of my Baton Rouge patients will take a bus or catch a ride. I'm constantly counseling these people, especially the people that are getting sicker, that they have to go to the clinic in Baton Rouge. It's a really good clinic; they just don't want to deal with the stigma. I wonder what will happen if they get really sick; they can't take the bus all this way in any kind of emergency.
If I were to follow you around for a week, what would I see you doing?
Everything moves around a lot, but I know that on Tuesday morning you would see me in a meeting. The rest of the day, from 12 to 7, I see patients, the later clinic is open for people who work, which means the evening clinic usually has me seeing healthier patients. The rest of the week I am supposed to see patients half of the day but I usually go through 3 p.m. I love doing it, but women are the most complicated group to take care of when it comes to providing proper health care, because their lives are so complex and they most likely are taking care of other people. Women always pay attention to themselves last, so I've always had an open door policy -- if you come to your appointments on a regular basis then, if they happen to miss one appointment, but they need a prescription, they can just walk in. If you don't follow the rules, I won't let them do walk-ins. I feel that we need to maintain some collaboration on our flexibility with the clinic rules. I treat my patients as a primary care provider, including writing prescriptions, except for controlled substances. I like it better this way, not even being able to prescribe drugs people abuse, acts as an extra safe guard for my patients because they can't go out and sell it or abuse it. I like having to consult someone else about those drugs anyway. Some patients are extremely persistent and manipulative when it comes to narcotics.
How did you decide on nursing? How has it changed since you first started?
When I decided to go to nursing school, I already had experienced several "careers." I worked offshore as a cook, I upholstered furniture and caned chairs, I ran a produce department at a health food store, I started a nightclub with a bunch of friends. I was living briefly in a small town in Missouri. The only job available in the community was working at The Golden Age Nursing Home. I got a job as a nurses' aide. I really loved working there. The director of nurses saw something in me and encouraged me to go to nursing school. I was attracted to nursing because I think is seems like the ideal career for a "people-person." There are so many different areas to explore in the field. It seemed to me that if I were to get bored doing one type of nursing, or working in a certain position, I could easily move to another.
Another factor was that nursing is flexible. I had a small child when I decided to go into nursing and I got divorced shortly after I graduated from nursing school. This profession has given me the financial stability I need to raise my son. When my son was grown, it has given me other opportunities; I can move and travel to other countries. When I went to nursing school, I never thought I would stay interested in one area, and HIV/AIDS changed that. The HIV field is so dynamic. I have been completely fulfilled professionally doing this work. I've never looked back or wish I had taken another turn. Two and a half years ago, I took a course to become a SANE nurse (sexual assault nurse examiner). I am on call 36 hours a month for rapes. If a woman or man is sexually assaulted, they come to Charity Hospital and get a complete exam and treatment for their specific assault. A rape kit is collected and provided to the police if the person chooses to report the crime. I was amazed at how many rapes take place on a yearly basis here. A few of my patients have come through the program, too. It's really increased my awareness.
What do you consider to be the best part of your job?
The best part of my job is working with the people I do every day -- that includes my patients and my co-workers. I have a number of patients that I have taken care of for 14 years and several co-workers that I have worked with for that long as well. Of course, the very best part of my job is when a patient is successful. Whether it is an undetectable viral load, or quitting drugs or smoking, being able to lose weight, or having a healthy baby. I think getting a hug and a thank you from them is the greatest reward.
Do you remember any particularly memorable success stories?
I had a patient who had come to the clinic for 10 years and never took her medicine. She has a son who is HIV negative, and she recently had taken in two other children. She was very proud that she was helping these children out. She was taking care of others, but not of herself and her T-cells were very low. I tried a number of times to explain to her that she was in danger of dying at any moment. At the height of her sickness, she was talking about taking in another child. I told her she wouldn't be able to, because she wasn't taking care of herself. She became extremely sick and I wasn't getting anywhere with her. When she came back from her weakest point, she decided she was going to be committed to her health, and in two weeks, after properly taking her meds, she was at a normal viral load. I feel like this is it for her, she's really come around and will be fine for a long time.
I had another patient who was dying, and she had four kids. I wanted to put her into hospice, because we knew she was dying. She didn't want hospice, and when I had a conversation with her about her immediate future, she decided she wanted to take her medicine. She was so ill that we decided that she needed extra care. We were able to convince her to go into a home for people with HIV. We came up with a plan to have her stay there for six months and they would properly distribute her meds to her. When she went into the home, she weighed 79 pounds, and had one T-cell. Now she weighs over 200 pounds, and she has 700 T-cells and an undetectable viral load. I would have loved to have this woman to talk to the woman that I just told you about who had her breakthrough later. I try to connect up the patients, so that they inspire each other, because I think there are things that my patients can't hear from me. Almost on a daily basis, successes like these two stories keep me going.
What do you consider to be the worst part of your job?
It is always hard to lose a patient. Whether it is losing them because they never come back to the clinic or because they die. It's hard. I always think I could have done better. It's difficult to accept that there is never enough time to do everything that I would like to do with my patients.
What is the biggest challenge a nurse will face?
I think a lot of nurses have a hard time finding a job that they really love. They get disenchanted and leave nursing for another career. There's a terrible shortage of nurses right now, so on top of all the other stressors that nurses encounter, they are often overworked. Understaffing creates a situation where nurses burn out and patient care suffers.
What do you think is the biggest problem people with HIV face today?
STIGMA, STIGMA, STIGMA, STIGMA. Unfortunately, you think the stigma associated with the disease is just a perceived notion, but when patients tell their family members and they find that their families don't want to associate with them anymore you see that the fear is still quite alive. I have other patients who seek out solace in their pastor and feel they are different from the rest of the congregation. Even when I talk about my job to people outside of nursing, I am still commonly asked, "Aren't you afraid?" Even professionals ask me that; it has happened at a nursing organization meeting. You can see the fear of some of the nursing students that come to the clinic. It's sad to me that two decades into the disease people still don't know that you can't get it from breathing the same air or drinking out of the same glass as someone who has the virus.
Does the stigma associated with HIV affect your female patients in any specific way?
I see it when women talk about getting together with men. I had a patient who actually had her husband leave her just after she had a baby. She recently put herself back out there and found a new man. When she told her new relationship that she was HIV positive, he sort of blew it off. She doesn't think he really understands that she has it, because she is healthy. This could become a more serious problem for her later on. Lots of our patients don't use condoms because they think they'll never be able to have another relationship if they insist. I also see patients who will stay with an abuser, because they don't think they will ever be able to find anyone else.
What do you think is the biggest risk factor for HIV?
Drugs and alcohol are co-factors; people get drunk and do things they wouldn't do under the influence, like having unprotected sex. We still get three to four new patients a week, and most of them are heterosexually infected, especially the women. The lack of education across the gamut is another important risk factor. A lot of adolescents may have been educated, but they aren't going to have safe sex. They don't understand that this illness isn't something that goes away, and you don't have to do it a lot, just one unprotected sex act can change your life. People know to be afraid of it, but they can't put that fear into practice. I'm so focused on taking care of people with HIV that the prevention aspect of it doesn't really get done, except in terms of educating my HIV-positive patients about practices that will prevent spreading the disease.
What would you change about prevention?
I'm not sure. I am so focused on treatment (and prevention efforts are mainly safer sex type messages with my patients). Across the board, there needs to more early education about sex and substance abuse implemented in school and churches. I think a good way to get the message out would be through more billboards and television spots. It is so frustrating when one of the women I care for brings in a new boyfriend who is uninfected and refuses to use condoms. I talk to him and he thinks because he takes vitamins or because he's "strong" that he won't get HIV. There are also some men who say they don't care if they get the virus because they love her so much. Aarrrrggghh!! That kind of attitude drives me crazy.
How do you keep up with news about HIV?
I read a lot. My reading is focused on new medications, documented side effects, information from conferences, anything on new research from drug companies or universities. Everyday, there are two or three new things to read that come up.
What change would you like to see in today's HIV care?
Better financing for care. It's terrible that in some states there are waiting lists for care or for medications. There's a segment of the population that needs intensive education when they first start out on medications and, because of tight financing, there just isn't enough money to finance those types of programs. There also aren't nearly enough programs available for substance abusers that are HIV infected. I won't ever begin to talk about what's needed in the third world, because that subject is overwhelming.
What do you think would be accomplished by better financing for HIV care?
If people are able to get meds, then more people will be successful with their first regimen, and there will be less resistance. If substance abusers get treated, they will be more successful with their HIV drug treatment. When patients are able to get off drugs, they are less likely to spread the disease. If we could get a handle on treatment and prevention in the third world ...then, of course, world peace!
What do you provide in terms of education or counsel for a patient who is just diagnosed?
I feel very fortunate that we have social workers, mental health workers, health educators who all see the newly diagnosed patient on the first day. The patient often sees all of these people before they get to me. They're usually pretty overwhelmed and saturated with information at that point. I often just tell them that the most important thing is that we work together. My role is to provide information for them to make informed decisions. I usually give them my pager number and tell them that I know that they likely will have a lot of questions once they leave the clinic. One of the worst things I can imagine is that they would worry or wonder about something until their next visit. I tell them that it's totally okay to call me about any question they might have. I also tell them that, if for any reason they don't feel like they are communicating with me or just plain don't like me, they should tell the nurse and transfer to another provider. It won't hurt my feelings. I feel strongly that the patient provider relationship is extremely important in treatment success.
What do you provide in terms of education or counsel for a patient who is about to begin treatment?
I like to show them their pills. I have a little box with one of each pill so they can see what they really look like. I talk about the different combinations. I give them books or brochures to read about taking meds, and information about adherence and resistance. Then they have them come back in a couple of weeks. Dr. Rebecca Clark (the physician I have worked with since I began working in the inpatient area) recently wrote a wonderful book written especially for women with HIV, A Woman's Guide to Living With HIV Infection (Johns Hopkins Press). She has generously purchased enough copies so every woman who comes to our clinic can have one. It's written pretty simply, and it is incredibly comprehensive. It's great to have a resource like that because the patients know and trust her. I feel absolutely privileged and lucky to work with Becky. She is the best!!
If you are living with HIV, or were infected with HIV, at what T-cell count would you begin treatment?
I think I would follow the current recommendations unless I knew exactly when I had been infected. In that case, I would get post-exposure prophylaxis immediately again, according to the current recommendations. I'm sure I would want to take a once-a-day regimen. I think all the meds are great. It's all about adherence and what a person can tolerate. Who knows, I might get really intolerant with what I chose. I might even volunteer to be randomized to a study (if one appealed to me) just because I think that the studies are important.
What's the key to a great healthcare provider/patient relationship?
I think the key is honesty, not being a dictator and being able to laugh together. I use humor as much as possible. Accessibility and availability are extremely important. I have to be available to my patients, because the earlier I can take care of a problem, the better the outcome.
One of my favorite "innovations" is my James Brown animated doll. I have a sign that reads "I feel good if you feel good: You can turn on James Brown if you've done any of the following: Lose weight if you need to, gain weight if you need to, achieve an undetectable viral load, stop abusing drugs, alcohol or cigarettes." If a client has done any of these, she can push a button that makes the James Brown doll sing and dance to his signature song "I Feel Good." We often dance together and end with a hug and a big congratulations. Clients now remind ME that they get to turn on James Brown.
How do you feel about patients who take a proactive role in their own treatment?
I think it's great!
Do you have many patients that are proactive?
I don't have many patients who are proactive to a great extent. A few of my patients have e-mail and they will e-mail me with questions, which I think is pretty neat. Some ask about new meds, or about changing meds, how they can deal with lipodystrophy, or they will volunteer to talk to other people or groups about their illness.
What is the most important thing you have learned from your patients?
The idea that you can never give up. There are some patients that I have been working on medication adherence or drug addiction or managing their diabetes for nearly a decade until they finally "got it". Never give up. Never give up.
Is such a job highly demanding and stressful? How do you maintain a positive outlook and avoid burning out?
I am an optimistic person. I always look on the bright side of things. I like to find good outcomes to things if at all possible. I love to be playful at work. Sometimes, I will wear a something funny like a tiara for a day. Or put up a funny sign or picture on my exam room door or in my exam room.
One of the best things I did early on to prevent burnout (this was in the early days when everyone was dying) was to be involved with a group called Samaritan Ministries. We put on four day, three night retreats at least twice a year. It was for people infected and affected by HIV/AIDS. We had nurses, patients, mothers, siblings and sometimes children. These retreats usually served about 40 people at a time. It was a spiritual retreat, but not espousing any specific religion. We did a lot of creative work; art work, performing, healing services, yoga, you name it. It was fantastic. The retreat team met throughout the year to create the next retreat. I wrote the grants for funding, so they were free to all participants. The team consisted of several HIV-positive nurses, a nun, a few priests and sometimes a minister. I did this for about seven years (from around 1988-1995) and even though it was a lot of work, it was very healing and therapeutic. I never felt burned out during those years. The clinic where I work also used to have workshops a few times a year that would often be renewing.
The past three years have been really stressful. I have to say I have become "crispy around the edges." Our clinic has sustained a lot of cuts and threats of closing. We have had a lot of personnel cuts and changes and, on top of all of that, I have been going through the home renovation project from hell. We moved out of our home almost three years ago for what we thought would be a four-to-five month project. We are still living in a small apartment across the street from our house. It's been such a nightmare, I started a "therapeutic Web site" to document the prolonged destruction.
If you weren't a nurse, what other profession would you be interested in working in?
Hmmm ... a veterinarian ... dog trainer ... lounge singer ... Peace Corps volunteer ... Mardi Gras float builder, because I love dogs, music, people, traveling and helping others.
Is there anyone who you would like to dedicate this award to?
All of my patients. They are the reason I come to work every day, and they have enriched my life. The person who nominated me; the people I take care of, because I wouldn't be here without them; the two nurses I mentioned (Harlee Kutzen and Carole Pindaro), because otherwise I wouldn't be in this field.
What did you want to be when you were a child?
My mother always instilled in me that I could be whatever I wanted to be so I never really thought much of any one thing because I always knew that whatever I wanted to be, I could do it. When I was a teenager the first thing I remember that I wanted to be was John Lennon's wife (even though I knew he was married!).
What kind of work did your parents do?
My father was a dentist (he died when I was in nursing school). My mother taught sewing and did a lot of volunteer work (she is 86). I have two older sisters. We're pretty close.
Who have been the most influential people in your life, professionally and personally?
Professionally, a lot of the nurses I met when I began working in this field. Harlee Kutzen, Carole Pindaro and a few nurses who have died of AIDS-related causes: Michael Callais, Tom Boswell, Paul Holthaus. Ted Wisniewski (also died from AIDS), the physician who started our clinic was a one-of-a-kind visionary. He was an amazing man. They are all examples of highly dedicated, compassionate and professional people who took the time to mentor me. In terms of personal influences, it is hard to pinpoint, but I think my mother was a big influence on me as described before ... but I also think it took a village ...
When you are able to get some spare time, what are your hobbies?
I enjoy caring for my dogs, we have four Petite Basset Griffon Vandeen, we recently lost two elderly Giant Schnauzers. Yes, you counted right, two years ago we had six dogs!!! I have shown all of them in conformation shows and half of them in obedience shows. I belong to a Mardi Gras crew and help design and make the costumes and do other sewing projects. I enjoy various arts and crafts, as well as exercise; bicycling, race walking, going to hear music. I have been relearning the ukelele, and teaching my grandson to play too.
Do you have a partner and/or children?
Husband, William McLean (he's a social worker who quit a few years ago to clean houses! Following his bliss.) I have a 28 year-old son and 6-year-old grandson.
Where did you grow up?
New Orleans. I have lived here my whole life except for about 18 months when I briefly moved to Missouri. I called it "my pastoral year" I was married to my first husband and had my son there. I had a big vegetable garden, there were cloth diapers hanging outdoors, I was making quilts and canning tomatoes. It was nice when I was there, but got boring pretty fast. I missed New Orleans and didn't like the cold weather.
What do you like about New Orleans?
I'm about 2.5 miles from the French quarter right in the city, and I wouldn't live anywhere else. The availability of anything you could possibly want keeps me here. Whether it is something to do, entertainment, music, shopping or restaurants, everything is available. There are so many great restaurants here its hard to burn enough calories to account for all the good food. Cuisine is a tradition in New Orleans -- there is a unique style of cooking, Cajun influenced, lots of seafood, fried things, gumbo, jambalaya -- they are associated with New Orleans. Everything is my favorite, I couldn't even say a favorite restaurant, there are new ones all the time.
This city feels European to me in a lot ways -- the influence of the French Quarter, its amalgamation as a cultural melting pot, there are people from Cuba, Honduras, Vietnam. There are a lot of traditions, this is a very Catholic city -- Good Friday is a state holiday, as well as Mardi Gras, which is hundreds of years old. I like living close to work. It's nice to be able to do that, because I know a lot of people who commute in an hour a day.
What the best vacation you've ever had?
I love renting a house on the beach in Florida with my friends summer after summer after summer. It's always great. We did it for quite awhile, close to 20 years, with the same group of friends. We did it again last summer. Our activities mostly involve laying on the beach, taking walks, we have a talent show or play charades or games. There used to not even be a TV set, there is, unfortunately, one now and it is almost always on. It's good for watching for hurricanes.
Two weeks in Scotland on my honeymoon was pretty special. It was 14 years ago, but I still remember it well, we rented a car and drove all over the country and we would pull over and go on little hikes. My husband is Scottish, so we had to go to Duart Castle, which is the castle of his clan. It was lovely, it was kind of gray and chilly. The clan chief had just died, so we couldn't go inside, because they stopped all the tours, but we sat with the castle dog and ate a picnic outside.
What's the biggest adventure you ever had?
Geez, every day seems like an adventure -- there have been so many. A few are: traveling through Central and South America for five months (thirty-plus years ago) and hiking the Macchu Picchu trail; volunteering to go to Honduras after Hurricane Mitch and going to the Miskito region working with the Indians there; doing a pelvic exam on a monkey (as part of a research project I was involved with).
What are you currently reading?
A book called Liquor by Poppy Z. Brite, it's set in New Orleans and is about a restaurant that specializes in having liquor in everything they serve. I really don't read many books for pleasure lately. I find that most of the time I am just keeping up with HIV literature. When I go to the beach, I usually read a novel. I have read all the Harry Potter books and read weekly to my grandson. I look forward to having more time to read again when I retire.
What kind of music do you listen to?
I love music. I like pretty much everything but my taste leans towards our local music, Professor Longhair, Earl King, The Meter's, The Nevilles, The Beatles, traditional Jazz. I go out to hear music once a week usually and sometimes more. I go through spurts of listening to specific albums. I really went nuts over the soundtrack for DeLovely. Lately, I have been listening to a lot of music coming from Austin and California country/swing.
The purpose of this profile is to get a sense of you as more than just a nurse. Is there anything else you would like to share about yourself?
I'm actually planning to "retire" in 18 months (because I will be eligible to retire and I desperately need a break). I am going to continue to work two days a week in the clinic so I can keep seeing some of the patients I have been caring for over the last 15 years. I can't completely quit. I always thought there would be a cure and I would have to find other work (part of my ever-optimistic outlook). It's disappointing to me that this did not pan out.