What You’ll Learn
A woman tells the story of her journey as heart transplant patient, highlighting the difference that preventive services in the community can make, the experience as a woman of not being listening to in healthcare, and the complexities of life post-transplant.
Interviewee: I live in Atlanta, George, and I’ll be 70 next week. I’m retired, of course. I was a healthcare administrator before I retired. I worked for a medical insurance company. I have two girls and one granddaughter. I’m enjoying life being retired.
VIVO: What is the best experience you’ve ever had with healthcare and how did it make you feel?
Interviewee: I think the best experience that I personally had was when I was sick and didn’t know what was going on and my daughters had had enough of the doctors telling me it was maybe a little pneumonia or maybe a sinus infection. But we knew that it couldn’t be those things because I was so listless. She decided to take me to the emergency room.
When I walked in the emergency room, the receptionist at the front desk asked me what was going on and I said, “I have no energy. I can’t eat. I can’t lay down and sleep. I have to sit up and sleep. I’m trying to walk, but it feels like someone’s pulling me back.” I could barely walk from the sidewalk into the emergency room, which was maybe 20 feet.
She reached out and pushed a button and all of the healthcare team came out. They literally lifted me off my feet, put me in a wheelchair, whizzed me back past everyone, put me in the bed, and started an IV. They helped me get undressed, started an IV, and drew blood. And within 45 minutes the doctor came in and he had a diagnosis of congestive heart failure.
The doctor that was on call that day happened to be best friend with the top transplant surgeon in Atlanta. He said, “He’s always busy. He has a waiting list to get on his panel but let me make a call.” And he came back and said, “He said put you in an ambulance, take you across the street to the different hospital where he was and he would see you.” So that was the best experience with him ever personally. He’s still my doctor. He will always be my doctor. Even though I have a transplant, I still have congestive heart failure.
With the insurance company I work with, the best experience is they had a team of healthcare specialists that focus on determinants of health. Anything that will determine a negative outcome that will prevent the person from seeing the doctor on time, anything in the community that would not allow them to get the healthcare that they need. So any determinants of health that they saw, whether it was we noticed that this person was going to the emergency room rather than going to the PCP, she’s pregnant and she didn’t seek medical attention until she was eight months pregnant. They have a team that went out into the community, targeted all of these females. And they went and offered them services, whether while I’m sitting here, you want an appointment with the doctor, they make the appointment sitting there with the doctor. If they said that they were hungry, they were able to put them in touch with a place where they could get food, like a food bank, help them register for Medicaid, help them register for food stamps. So that was professionally the best thing ever.
VIVO: In this first experience, when you were going through being diagnosed, what emotion would you say you were experiencing?
Interviewee: I was exhausted by then because it was about three months of being so sick. And I couldn’t eat anything. It was three months of that and being misdiagnosed. I knew that something was going on, and the symptoms that I was having, I did Google it, and one of the things I put in was I heard a gurgling sound. Whenever I would lay down to go to sleep and I would breathe deeply, I would hear this gurgling sound. I put that in and immediately came up with congestive heart failure. So I was in denial. I knew that I saw it, but I was in denial. It couldn’t be me. It couldn’t be me because I had that prior year done a six-mile road race, so it couldn’t be me.
So I was in denial at first, but when he came back and said, “Ms. Hairston, unfortunately you’re in congestive heart failure. Your ejection fraction is only 30% and that’s not enough to sustain life,” I was numb at that point. I didn’t know what to feel. I knew that that was going to be the diagnosis, but I was still very numb, but happy to have a diagnosis. The doctor himself made all the difference. He was the kindest young man that I met in the medical field. He was so kind and so gentle. He explained everything to me. And he said, “We’re going to keep you for a week here because we have to get you medicated, find the right cocktail that would work for you.” And he said, “The first thing we’re going to do is get this water because you have a lot of water. You gained a lot of weight from the water.”
I hadn’t eaten in about a month, yet I was still gaining weight. And so he could see it in my neck. I guess some vein was bulging that I’d never even noticed. And so he started all of that and he was there the whole time. I was scared, terrified of the whole journey, what did that mean. He started with the medication right at that hospital that he could do. And then when the other doctor agreed to take me, they put me in an ambulance to take me across the street. Because once admitted, you can’t get in the car and drive across the street. The ambulance, it was terrifying. And then they took me to the hospital and then he came in with his team, and then they started with the medication and the whole journey. So I was stunned. I was in shock. That’s a better word, I was in shock.
VIVO: Do you have a different view of yourself now that you have this diagnosis?
Interviewee: It did. One of the things that I told my pastor when he would come to visit me… It’s so strange, he would only come very late at night, maybe at 10 o’clock when there were no other visitors, very quietly. And he would sit in the corner in a chair and chat and let me talk. And he asked the same question that you did, and I said, “I grew up with a very strong father and a very strong mother, very strong-willed. They passed that on to all five children. Our strength, we carried around like a banner. We are strong, we can do anything.” I learned that my strength was my biggest weakness because when I first started feeling bad, the first time when I tried to run and I felt like my heart skipped a beat and I had to sit down and my girlfriend said, “What’s going on?” I told her, “I don’t know, it feels weird.” She said, “Let’s take you to the hospital.” “No, no, no, I’ll be fine.”
I regained myself, composure, went home, slept. And then the next day I felt a little better and I went to work. And I worked all the way up to them taking me to the hospital. I went to work on Friday and they took me to the hospital on Saturday where I was diagnosed. So that strength almost killed me, thinking that I can push through anything, I can will this away.
VIVO: But what changed about how you saw yourself once you had that diagnosis? How did you view yourself?
Interviewee: You knowing that something isn’t right doesn’t make you weak. You accepting help from someone doesn’t make you weak. It makes you smart, it makes you intelligent. It makes you aware of what’s going on with your body. It makes you diligent and not only in the things that you do to prevent this from happening again that’s within your power, but diligent and being aware of any little tip that goes on in your body that isn’t norm. And not suppressing that because you think that you’re strong, but make yourself go ahead and call that doctor. My team, they say, “Anything at all that’s not normal, call.”
Even after all of this, once I was discharged, went home, they said, “If you gain five pounds in one day, call. If something’s unusual, call.” It was still difficult for me to do that at first. My daughters, I would call and say, “I have this bad headache.” “How long?” I said, “It’s been two days.” And they were like, “Haven’t you learned yet?”
Now if it’s something unusual, I call, I send an email, and I always say, “I know it’s probably nothing,” in the email, “but this is what I’m feeling.” My specialist always sending back, “First of all, stop apologizing. It could be anything. I know you’re only reaching out because it’s something out of the norm. So I learned that.
VIVO: How would you say receiving this diagnosis, how did it change some of your day-to-day routines or activities or responsibilities?
Interviewee: I take about 28 pills a day. So my routine of being able to jump up in the morning, drink some water, drink my coffee, shower and go is different. I have to make sure that I have everything that I need for the day. Once a month I fix a whole month’s worth of pills in these little trays. So I have to put all of my medicine there. I have to make sure I have enough water in the car with me, make sure I have enough fruit in the car with me because I can’t take it on an empty stomach.
I’m not married, so even traveling alone, prior to this, I could get up and go wherever I wanted to go. But now I have to be mindful that if I’m going to be there for two weeks, not only do I need to take two weeks’ worth of medicine in the trays, but I need to make sure that I have a month’s worth of medicine in another pouch that I have to take on the plane with me.
As a result of being intubated, it damaged my vocal cord… not vocal cords, but my throat, so I have sleep apnea now. So I have to make sure that I take my CPAP machine so that it helps me breathe at night. I have to be very mindful and make sure that I have everything I need.
Also, I’m going to Peru in January, but I have to Google and search, are there any transplants performed in Peru? If so, where are the hospitals? Because as a result of this, I can’t eat any raw meat, fish. I can’t eat anything that’s fermented. I can’t eat pomegranates, grapefruits. It’s a long list of things that I can’t eat. When you’re in a foreign country, you don’t think about the… I can’t eat from buffets. So when you’re in a foreign country, you have no idea of how diligent they are in preparing their food. So I could buy something that looks cooked, but it may not have been cooked thoroughly, and I eat it, I get sick. I need to know where there’s a transplant hospital that knows how to treat me. If, for some reason, I lose my medication, where is there a transplant facility that could possibly have these same medications there?
VIVO: You mentioned running. Did your exercise habits have to change?
Interviewee: It did. I don’t run anymore. Now, a lot of people are able to run, but for me, I’m not able to run anymore. But the walking, I have to make sure that I exercise every day, get up and walk and weightbearing exercise. One of the medications that I take, because I was on steroids for so long, it deteriorates the bones. So I have a lot of bone loss as a result of the steroids. So I have to do a lot of weight-bearing exercise. So I have to take that very seriously.
I have to take the salt intake. I can’t eat the salt that you have. I eat out a lot. I have to be very mindful where I eat and the salt that I intake. I can’t put salt on anything if it’s already prepared. Sometimes I go to Italian restaurant and when I order, I may ask them, “Is it possible for my noodles to be cooked in water with no salt? Don’t salt the water.” Because it’s going to be enough salt in the sauce that they put on it. And a lot of times I say, “No salt in the water. And if you can’t, no salt, butter, some olive oil and vegetables and I’m good.” Most restaurants are accomodating. If it’s a chain restaurant, not so much. And of course, you have to wait a little bit longer than everyone else at the table because it’s a special.
VIVO: What about any habits like smoking, drinking, anything like that that changed?
Interviewee: I never smoked. I did used to drink, so I don’t drink anymore. We can drink I think he said maybe one cocktail a week, but I don’t drink at all. I stopped. I don’t drink. I don’t like the feeling that you get from drinking. It relaxes you a little bit. That’s a trigger for me. That relaxed feeling, it reminds me too closely of when I was sick, that feeling. So I don’t drink because I don’t want that feeling.
VIVO: What is the worst experience you’ve ever had in healthcare and how dud that make you feel?
Interviewee: The worst experience I had was the last doctor that I went to, which was my primary care. He wasn’t available, but there was another doctor in the firm that was available. I went to her and she did an EKG. She came back in, this is when I was sick, and she came back in and she said, “Have you seen a heart doctor?” At that point I said, “No, I have not.” She said, “Your EKG is off, so I am going to schedule you to see a cardiologist. I looked at your chest X-ray, and it looked fuzzy. It’s just fuzzy.” She said, “It’s strange, but I’m going to go ahead and schedule you to see a cardiologist, but I think that you may have the flu or something like that.” So she gave me this antibiotics cocktail, the five-day cocktail that they give. I gave her all of the symptoms that I gave the emergency room and I left.
It was a month later that the cardiologist called me to make an appointment for me to come in. But by then, I was already a part of the transplant team. I had already been to the emergency room. I already knew what happened. I did ask them, “Why did she say my X-ray was fuzzy?” He said, “Because your lungs were full of fluid. That’s why you couldn’t lay down and sleep, because when you would lay down, the fluid would go up and block your breathing.” So what she saw was a blur, it was fluid. And she should have known that. She was a primary care physician, she should have known that.
VIVO: How did you feel about that initial experience, and what you heard later from the cardiologist?
Interviewee: I didn’t take it personally as far as me being a female. I didn’t take it as far as me being a Black female because she wasn’t Black female. So I didn’t think that was the reason why she didn’t take me serious. I mean, sometimes with the primary care, they are so accustomed to seeing simple cases that if that’s all they’ve ever seen, they don’t know when they see something alarming. It’s something out of the norm. And so it made me wonder whether you need to look for a primary care specialist that was older. She was a young girl. It made me think, “This isn’t the practice that I need to be with.”
I needed an older person, a more experienced person, someone that had a wider view or was able to see more patients than straight, “I’m coming in for a cold. I have pneumonia. I need to get my vaccinations.” But it did make me feel not abused, but definitely not seen.
When I tell you that I had difficulty coming into your office and I had to stop and rest even to make it there and I had no temperature or anything like that, that should have been alarming to her.
VIVO: You mentioned being a woman. I’m curious if there has been anything unique to your experience because you’re a woman, in your perspective.
Interviewee: I don’t think so. I’ve never felt any prejudice or any indifference because I am a woman. I’m very fortunate. Maybe some others have, but no, I am not seeing that. That’s totally unrelated to congestive heart failure, but years ago when I saw a doctor, he seemed to dismiss certain things because you are a female. I think it was an OBGYN, but that’s not related to the congestive heart failure.
VIVO: Is there anything that is not being said in the healthcare space that you think needs to be said based on your experiences?
Interviewee: I think women as a whole, they need to be listened to. I think that in the healthcare field, I don’t know why they dismiss females. Most of the healthcare workers are men, that I’ve seen. I don’t know if it’s something that’s in home where they’re taught that women are more hysterical, they complain more, they get upset about the slightest things. So they have this notion, and I am only assuming that, it may not be the case, they have this notion that that is the case when we come to see them. So I think that they need to stop dismissing our complaints and not think, “Oh, they’re overreacting to something,” versus, this is a legitimate complaint. I have a full life. I do not want to come and sit and wait for you to see me for an hour. Then you see me for 10 minutes, dismiss what’s going on, and then I go about my day. My life is full, I don’t have time for this. So if I take the time to come in to see you, there is something wrong.
VIVO: What do you think healthcare will look like in 10 years?
Interviewee: I think that there will be a lot more tools for at-home healthcare. I think there might even be tests that you can do at home if there’s something you want to do. I think that that is something in 10 years that may be available, at home, this prick of the finger, put it in this machine. A person can come to the home and do it, and they can tell you a lot about your healthcare.
I think there may be ways to do a genealogy study, to see what’s in your history and what disease may be something if you look into the future and how to prevent it. I think there will be a lot more robotic surgeries that we do now, that the doctors manually do. I think that the doctors will always be needed in the OR, but I think that there will be a lot of more robotic assistance that will be able to get some of these things done quicker. You won’t have to have a lot of the other team members in the OR with you. So more robotic surgery, more at-home testing, and even in the doctor’s office.
VIVO: When is the last time you maybe felt inspired to change something about your health and what caused the inspiration and was it successful in changing anything about your health?
Interviewee: My daughter went out of town a couple of weeks ago. I know at the gym, at the gym when I walk, I only walk with the incline of two. I do that for an hour. When I stayed with my granddaughter while my daughter was out of town, she wanted to go walking to a store because they live in a walkable community, so she wanted to go shopping at a store. When we left, I went to get in the car and she said, “No, grandma, we could walk there.” I knew where the store was, and I knew that it was uphill and it was at least a mile and a half uphill. I’m like, “I don’t think I can do it.” She said, “You can do it.”
We did it. I wanted to stop several times, but she kept saying, “You can do it. Come on, don’t stop.” We walked and we did it for the one and a half mile up the hill, and I did it. So she inspired me to elevate the incline to 2.5 and then to keep going up as much as I can because I did it with her. She inspired me to do it. So it motivated me to have the same drive that I had to please her and to do it and not disappoint her, to have that same desire within me, please myself, inspire myself to do this.
VIVO: How would you compare your health now to your overall health before you were diagnosed? Not immediately before you were diagnosed, but generally beforehand.
Interviewee: Of course, I was much healthier before I became sick. I was younger. I did not have the bone loss, which makes you very achy all the time. So I was able to run a lot, and I did that. So it was much better before diagnosis.
VIVO: What did your typical diet look like?
Interviewee: I ate anything I wanted to eat. I knew that I had to be careful about what I ate as far as caloric intake, but I could eat anything that I wanted to eat. If I had too much junk food, I knew that I needed to go to the gym and run it off. So it was much better. The whole life was much better prior to. And I hate to say it because it makes me feel ungrateful that I’ve received this gift of life, but it is true, my life was easier prior to transplant. I didn’t have to be concerned with all of the things that I do now.
VIVO: What did it look like for you to try to manage the stress of life and family and work-life balance? What did that look like prior to the diagnosis?
Interviewee: I’ve had a great life, I’ll be honest with you. Any stress was normal stress of life. Work, I loved what I did. I loved it. It was a great job. I had a great team. The stress only came from the production part of it, but overall it was great. I don’t have that much complaint about it. The stress, of course, there was always stress, but it was easy to manage when you leave work. I have a great family. I have great friends. I travel. So that would balance the stress in work-life.
VIVO: You said family and friends were some of your primary supports during this time when you received the diagnosis.  Can you tell me any stories of what their support looked like?
Interviewee: My primary support is still of my two daughters and my son-in-law and my granddaughter. So that four team, we’re extremely close. The youngest daughter and her husband, they were deciding to move from one apartment to another when I received the diagnosis. The doctor did tell them after three months, if my heart did not heal a little bit, that I would have to get a transplant. They told my daughters, both of them, I could not live alone because they had to insert a pacemaker defibrillator, and I could never take it off. They would let me take it off for five minutes a day to take a shower, but there would need to be someone standing there that would be able to get it back on me should I pass out. So I couldn’t live alone.
My daughter and son-in-law decided, “We were getting ready to change apartments anyway. Mom, we’re coming home, and we’ll take care of you.” And they did. They moved here and they stayed for five years to take care of me. We were close. They went to every appointment with me. There was either my oldest daughter and granddaughter or my youngest daughter went to every appointment with me. They were there every day around the clock during transplant. All of the doctors, all of the nurses, everyone knew my kids and they couldn’t believe the support that I had.
VIVO: Whate are some challenges that you’ve encountered in managing your health?
Interviewee: Everything is challenging about it, from remembering all of the drugs, remembering to take them on time, deciding what type of system I wanted to put in place because I have to take medication at 9:00 AM, 12 noon, 7:00 PM and 9:00 PM, so four times a day, and managing a system that would remind me to take it. It is not like I need to take vitamins at night. It’s not that in order to maintain the optimum level of therapeutic dosing in my system I have to take that anti-rejection medicine at the exact 9:00 AM 7:00, 9:00, 12:00, 7:00 at night exactly. As my doctor told me, not 8:59, not 9:01, 9 o’clock.
I have witnessed people that did not take it on time and eventually went into rejection and they passed. So that is a challenge to come up with a system. I have come up with a system that works for me. There are still challenges sometimes that if I’m in a store shopping and the alarm goes off, “Take your medicine,” that I’ll say, “I’ll take my medicine.” And because I’m 70, I can be doing something and turn around and do something else, and like, “Oh, what was I doing,” and forget. So I’ll hit that seven o’clock snooze button. No, I’ll turn it off and say, “I’m going to take it, but let me finish doing this,” and I totally forget about it.
That is a challenge to make sure that I do that. It’s a challenge to make myself get up and go exercise every day, which is a huge challenge because of the ache, the pain that I feel when I get up. My back and my legs hurt a lot. So it is to make myself get up and go to that gym every day. Usually after I walk for about 30 minutes, it feels better, but it’s not comfortable walking. So those are challenges.
VIVO: What about any financial challenges or changes that this has had for you?
Interviewee: Oh my God, everything is so expensive. It’s interesting. The other day, someone said, “Why don’t you talk to Medicaid about applying for… ” I’m not at the AMA threshold in order to receive Medicaid, but they said that there is a spend down Medicaid, which means your threshold, you’re not at the poverty level, which I’m not by any means, but with the cost of the medication that I’m on and how much copays I have to see when I see the doctor, as often as I have to see it, they spend that against your salary and what’s left they use that to base whether you need some assistance.
And so I did that, apply for that, and so I’m waiting to hear about that. So financially, that is a stress, especially this time of year when everything is due. I have to have a total bone scan, DEXA scan every year. I have to have my eyes examined every year. I have to have my ears examined every year, because when you’re waiting for a heart, because the heart isn’t pumping the blood the way it should, I didn’t know this, that your ears, the blood in the eardrum, that is the last place that your heart will pump the blood to.
So if there’s some other organ that needs it, your heart will not send it to the ear, not at the amount that it needs. So you do have a lot of hearing loss as a result of that. So I have hearing loss, so I have to do that. I have to get a heart cath every year. I mean, every six months I have to have all of the PCPs, GYN, everything is due in this last quarter. So that’s like $2,000. And my medication is $200 every time I get a refill. So it is very expensive, and that’s a challenge.
VIVO: Do you feel like being in a more urban place like Atlanta, has that had its advantages or disadvantages to your entire healthcare experience?
Interviewee: It definitely has its advantages. One of the things that I’ve been looking at recently is any other assistance that I can receive. But because I live outside of the city limits, I’m in the suburbs, there are not a lot of senior citizens’ assistance at the suburbs. If you live in the city of Atlanta, they will do anything for the senior citizens there. So that is a problem.
VIVO: Have there been any changes in your social engagements or activities that you would regularly do before their diagnosis?
Interviewee: Changes? A lot of girlfriends have moved away. Because we’re all about the same age, they moved closer to their friends. A couple of them moved out of the country and went other places to live. So socially that has changed. It’s more isolated. I’m more isolated. Of course, I had my daughter here for five years. I had someone here all the time. But now that I’m alone, that is certainly a challenge.
VIVO: How do you cope with that?
Interviewee: I get out as much as I can. One thing that I realized is that going out every day, you spend 70 to $100 every day. If you walk out the door, you’re spending money. I’m going out so that I’m not here. So I go to the gym, I exercise. So I said, “Let me walk through the store. I don’t need anything. I don’t need anything. I’m going to walk to see people, to talk, “Hey, how are you?” and you spend money.
So I recently started saying, “I have to stop doing this.” And so I had to think of something that I could do that was cost-effective for me, so I decided last month, every week I’m going to start visiting a different coffee shop because I love coffee. And so that’s been fun. I told myself, “On a budget I can get one crafted coffee a week,” and find a new coffee shop and sit there and read my book. I love to read, so I’ll sit there and read my book. I’m on my phone, social media, looking at people, chatting.
VIVO: What maybe advice would you give to someone who has more recently been diagnosed with a heart disease? To a woman specifically?
Interviewee: Listen, definitely listen to every change in your body. Be aware of every change in your body. I am a volunteer for support, a mentor for the Heart Transplant Society for Atlanta. So I mentor people whenever they need it. One of the ladies that I’ve been mentoring for two years, she received her heart about two weeks ago. And one of the things she was having a difficulty was the fluid intake, you can’t have the salt in things. And she said, “I can’t stop eating regular food. And I was saying, you can’t eat out on this journey while you are waiting for your heart. You cannot. You have to eat at home. And that was the hardest thing for her.
As a woman, you always want to cook the way you’ve always cooked, eat places you want to. And so encouraging her that she could do what the doctor said that you have to get off 20 pounds in order to be listed for a heart transplant. She didn’t know she could do it, but we, I would talk to her all the time, send her recipes, send her alternative salt recipes, and she did it. And she’s getting her heart.
VIVO: Is there anything else that you would like to share about your journey or other advice that you would want to give?
Interviewee: No, listen to your body. It does send you all the necessary alarms that something is right. Even if it’s a very small abnormality, it is you
