What You’ll Learn
A 32-year-old IT manager shares the emotional and health journey of being diagnosed with cancer, heart disease, and diabetes–and the lifestyle changes his health and support systems have asked of him.

VIVO: I feel like this is one of the greatest questions you asked me. I will not say I found it easy doing those things. If I have to tell you for one day I am going through this process very easy, I feel like I’ll be lying. I had to adapt to this. Most times it hits me, it’s very painful. But the happiest thing about it is I’m getting used to it. The beginning part was very hard. There was a time I had to tell my wife, “Baby, no, I’m not sure I’m going to continue doing this. I’m not sure you’re going to be telling me down like a baby and trying to make me eat when I don’t want to eat.”

I could remember there was a time I got into a fight with my wife because she took away the coffee machine that I bought and she was like, “Baby, you having thought that it is not good for you, you have to stop having this coffee, stop drinking cappuccino. You have to take this out from the house or nobody going to set eyes on it.” I was going out to Walmart or Starbucks to get some coffee, but it reached a time where I said, “No, I have to stop this.” Because at first I was doing it openly. My wife knew I was doing this, but now I’m doing it in a very different way. I was like a man living behind my shadow. I felt like wherever I was doing that I was uncomfortable. I cannot do it close to my family. I felt like it wasn’t comfortable anymore. I had to stop and know that I have to improve my health, I have to change my routine.

It wasn’t a good one then, but at some point I accept this was the best for me. Right now I’m doing great.

VIVO: That’s great. You’ve mentioned love of coffee and I know getting coffee is one of many social activities, how has your health affected your involvement in social activities?

Interviewee: Taking cappuccino has a lot of caffeine. In a period of time when you take this caffeine it’s hard on the system, because when you have this caffeine, it gets to a point where it has to be sticking on your body systems, like have to be dealing with it. Most times it’s advisable people who take coffees to take enough water, it’s advisable for everybody. Make sure you take enough water that is good for you. This cappuccino and this coffee, most times it gets to a point where it has to affect your immune system in a way where maybe you have low intensity of breathing, or it gets to a point where it has to, most people it has to take them off from sleep. A lot of caffeine isn’t good for the health.

VIVO: Do you drink coffee at all now?

Interviewee: No, no, no, no, no.

VIVO: No coffee.

Interviewee: I stopped. A lot of caffeine isn’t good for the health, when you abuse this product is not good for the health at all. The best you should know about most of these or having to take cigarettes, most of these are very bad for the lungs and it isn’t good. It reduce your immune system, it affect you. But right now I could exercise right now I could jog for about three hours, two hours, having my jogging and come back home looking very strong. Most times you feel your joints. Most times if I have work those days, I feel my joints have some pains, have ache in my back, have ache in most of my joints feel weak. But right now I feel very strong. I don’t feel going on a routine on my daily job and came back feeling very weak. I got a lot of improvements recently from doing exercise and manage my health.

VIVO: And are you currently undergoing any treatments for your cancer?

Interviewee: For sure, for sure, for sure. I have been on medication for my cancer and it has been a very great experience, but I feel like it isn’t easy, but I have been in medication for it.

VIVO: And you still feel like you’re able to go for a jog for a couple hours and feel great?

Interviewee: Oh yeah, for sure. Right now I have my job routine going on for days, for hours where I have to, most times drive myself. And I don’t feel, I don’t feel those weak when driving on a long distance, like about an hour 45 minutes or about an hour, 30 minutes. And have to go to job and get home. And I feel very strong. I feel very comfortable doing my job right now. I’m feeling great.

VIVO: How would you say, because you’ve mentioned your family and you’re now talking about your job, how has this diagnosis affected relationships with friends, family, co-workers?

Interviewee: I feel like this is also a great question you ask right now. I know I have a friend, which I don’t talk to right now. Because I feel like then I was hanging out and drinking, I’m having social life with him. Right now I would say most times I have emotional distance. You may find that loved ones become distraught to you, but most time it is upsetting that you get some illness and you doesn’t find these people around you. But the truth is, there are some friends you have to catch up, like friends you go to the bar with, friends you have to smoke weed on a regular base. It has affected my relationship with my friends.

But when it comes to my family, I feel like most of my family was very sad when I was smoking. They don’t like it. I have my immediate sister, who happens to be a pastor. She doesn’t like seeing me smoking then, but I never give an F about that. But right now I understand what she was telling me. Most times when she see me, she’s very happy about it. The last time she saw me, she was very happy. She was like, “Ah, look at how your skin was glowing. Look at how you looks. I told you then, you should have to stop smoking and stop stressing out, going on club, living some lifestyle that isn’t place for you.” She was very happy to know that my health has improved trying to manage my heart and having this cancer.

It isn’t easy most times to be diagnosed with this sickness. You will lose friends, you will lose relationship most times. Most people avoid talking to you at your working place, but the best is having your family. I feel like when I have my family have my back, they want the best for me, the very best. Not about friends, not about any personal relationship about my co-workers, but my family, because I feel like they want the best out of me.

VIVO: Do you feel like you lost those friends or those relationships with co-workers because of the habit shifts you made, or because of your heart condition?

Interviewee: For sure, yeah. I have one of my friends, I always used to smoke weed, especially when I have my free time-

VIVO: And now that you guys don’t smoke together, you just don’t hang out anymore?

Interviewee: Yeah, yeah, yeah. We always smoke together we discuss have, whenever we smoke, that’s when we have this discussion. And then, I take Marlboro and he takes maybe another species of cigarettes, once my own finish, he’s going to borrow me some. He’s going to give me some, say, “Oh, half mine, half mine. Take up it’s free. No problem bro. Where we come we are together.” But ever since I stopped smoking together with him and standing beside him, because I don’t even like this smoke right now, so I don’t stand beside someone who smokes. I discover I lost that relationship, for sure.

VIVO: And do you feel like as you were making those habit shifts, for instance when you quit smoking, did you discuss your heart condition with others, or did you say you weren’t smoking anymore?

Interviewee: I feel like there was a time I discussed this with my wife. I told you there was a time when my wife have to take out the coffee machine from my home. I bought it and she was like, “Baby, you have to take your health serious right now. I don’t want you to leave me with these two kids. We are still young. You have to take care of your heart and take it very serious.” I was very stubborn to understand what she was saying. I told you I was going out. I drive out to Starbucks. I have to get some coffees and stay in my car and have it and get away with that.

But I come to a stage where I have to tell her, “Baby, I want to tell you something I’ve been doing, which is a bad habits ever since we married over some years. I never do that to you, but I’m doing it.” And she was like, “What do you happen? Do you cheat? Do you sleep with someone?” I said, “No, I don’t sleep with someone, I want to tell you what happened.” I was like, “I’m still taking coffee.” And she was like, “How?” Then I told her, so she was like, “No baby.” But I told her I’m stopping it. “That’s why I’m telling you, I’m stopping it.” Because whenever I go to some checkup and they have to tell me, “Are you still doing this? I used still doing this,” and I’m lying. And they said, “Why are you not getting better? Why is it not changing?”

And I was worried, at some point I was worried. The moment I stopped, I discovered most of the medication I was taking was working. Most of the treatment, the routine drugs, I started taking it started working. I was very, very happy. For a moment I could say I share it with my wife. I told my wife, say, “Look at this baby, I have to stop this, I have to change from this.” And she was like, “Yeah, that’s good.” And she has been very happy. Moreover has to work, she has to take care of the kids. She has to do so many house chores as my wife, which I thank God I have a very beautiful wife, but at the end of the day she makes sure I doesn’t miss having my fruit salad, having my smoothie, having so many medication like health, all that stuff. She needed me to take my supplement. She makes sure every night she has to give me my drug. If I go to bed, she makes sure I have to eat fruits every morning before I have to even eat my meal.

VIVO: Sounds like a great support system for you. Were there other individuals that you had as support besides your wife that you could talk about this with?

Interviewee: Yeah, yeah, yeah, for sure. I have this friend of mine, Keisha. I have Keisha that I work with and Keisha have also been on, I feel like she grew up on a family that loves, how will I say it, that love to take health very serious. Most times then she have to see me with some broken lips, with some bad habits. Most times she saw me having a dry skin and she asked me, “Why are you having a dry skin?” She advised me, she talked to me, she referred me to some product. She also tell me how to live a healthy life. She have to say, “Most times you have to get some fish oil for your hair, try to look good.” I feel like some moments-

VIVO: Were those dry lips and dry skin, were those a result of some of the medications you were on?

Interviewee: Yeah, yeah, yeah, yeah, when I was smoking I was having a very dry skin most time.

VIVO: And then, how do you think your gender plays a role in this as you navigated your disease? If at-

Interviewee: Come again?

VIVO: How do you think your gender, how do you think being a man plays a role in how you navigated social situations?

Interviewee: Most times it is very hard as a man to listen, but I feel like at some point you have to know this, your life, this about you. It is not about you being a man, it’s not about the gender you are female or male. You have to understand this about health. You have to take it serious.

VIVO: And then, let’s talk a little bit about your experience with your doctors and other providers in the healthcare system. Can you tell me a little bit about how have you felt understood and supported in those clinical settings?

Interviewee: I feel like it’s much easy, because where you have to get out your medications and be conscious of what is going on with you and follow the routine of the medication and checkup. I feel like it’s much easy to go on, is a very much easy to, because you know what you are into. It’s a thing that you devote to your heart, is a thing that you are conscious of what you are doing. I feel like when you are doing this and there’s a lot of change you see there is a lot of change on your body and you are improving.

VIVO: How do you approach conversations with your doctors if you have needs or concerns?

Interviewee: I think most times I book a section, like a meeting. Most times I feel like I could chat to him and most times I could have a meeting with him one-on-one and share how I feel, or is coming up before. If it has to be a serious case, maybe I have to go to the hospital then and go on a checkup. Most times make a list question of to discuss with my doctor, be honest about your symptoms. I don’t joke about that, the way I feel, I try to be 100% honest. I try to tell him my experience with the treatment and the side effects. I also ask a very clarified question to understand things, how it goes. I don’t hesitate to know more.

VIVO: And you said you are in Chicago, you’re in an urban area. What challenges have you experienced in accessing healthcare as a result of being in an urban area?

Interviewee: I feel like the challenges, the challenge I have was not being aware of my health at first. It was a little bit difficult to know the best treatment for me, places to get my drugs, the pharmacies or hospital to visit.

VIVO: So it almost like there were so many options, it was hard to pick?

Interviewee:: Yeah, yeah, yeah, yeah, yeah, for sure.

VIVO: That makes sense.

Interviewee: But I feel like when I get into it was very easy for me to discover so many health products that I need.

VIVO: And then you’ve told me a lot about your mental health and how you have prioritized that and the incredible benefits it’s had for you. Can you tell me, are there any other ways that you cope with both the emotional and physical challenges of living with a congenital heart disease?

Interviewee: I feel like most times I feel like I don’t want to die. I feel like I shouldn’t-

VIVO: How do you handle that?

Interviewee: I feel like I shouldn’t get to this level where I have to pass through this. I see myself as a strong person, and I also try to console myself, because I have seen so many patients in the hospital. I have social life, also joined so many groups that have had issues just like this.

VIVO: So like support groups?

Interviewee: These are also things, yeah like a support group, referred by the doctor. We have the Chicago Cancer family, which are also involved into this to retain, to know that you have some valuable instance, just like the head of the HIV medication patients having their groups, so such most of these category groups shadows. You have to be aware of what you are going in the process. You have to be shared, you have to understand that this is not you in the journey. There are other people in the journey, so it helps especially.

VIVO: That’s great. And I want to talk a little bit about the future, and I want to hear, how do you envision your future within relation to your health and your lifestyle?

Interviewee: I feel like there are things I couldn’t go back to do anymore. I have seen a lot of improvements, and I don’t want to look bad the way I was looking some years ago. I feel like I’m improving. I feel like I’m comfortable. I feel like I’ve been doing a great job about my health. In the future I would like to have more medications to help my immune system. Eating a very healthy food, following my diet, having my protein that can help me improve my heart’s other risky complication issues. Engaging in the physical activities on a regular basis, having exercise that can help me improve my heart functioning, and also reduce stress from my emotion days of being on any activities. I feel like I would love to have a very calm life and live a very healthy life.

VIVO: Do you have any goals for yourself for the next few years?

Interviewee: Yeah, for sure, for sure.

VIVO: Would you be willing to share one of them?

Interviewee: One of my goals I would like to share is I would like to open a group. I would like to have a group where I could teach people for free about how to take care of their hair. I feel like I could start maybe from Facebook or Instagram, open a channel or a page where I have to post milk and diet for these diagnosed people, or medication to follow. During most of these process of being diagnosed with this disease, I feel like I have to make people to be aware of what they are eating. I feel like I have to make people to be aware of the life they live.

VIVO: A great goal, I appreciate you sharing that. We’ll wrap up our time here, but I’m curious, knowing that you would like to open up a group where you can inform and inspire people, what piece of advice would you give someone who recently received a diagnosis of a congenital heart disease?

Interviewee: I would have to tell you to be positive at the process. I feel like one of the things that helped me to improve so much is that I believe I have a very positive mind, so whatever medication I’m going to take is going to help my body system. And I believe in it and I was doing it with faith. The doctors and whosoever can tell you whatever they want to tell you, but you have to know that you have to manage the stress, take out negative impacts from your head. It’s very important.

You have to take your medication very serious, very, very serious. You have to go to the checkup on a regular basis. You have to make sure you see a doctor when you discover it and when you feel any symptoms from your health or immune system, you have to make sure you go on a regular days for checkup, you have to book an appointment. You can feel free. I tell people, “Always having a very open mindset to tell how you feel, to express yourself. Share with someone what you’re going through. Don’t close your mouth. Share your experience. Share how you feel, share your pain with someone.” It’s very great to know that.

VIVO: That’s great feedback and great advice. I appreciate your input and your time. I wish you the very best in your health journey and I hope you do start that group. Thank you so much. Thanks for your time. I wanted to real quick confirm two things for my notes. You told me you were diagnosed at age 29, and how old are you now?

Interviewee: I’m about 32.

VIVO: 32. And then, I have in your screener that you have an atrial septal defect. Is that true as well?

Interviewee: Yeah, but I feel like I’m almost going done with that.

VIVO: Very good. Thank you so much, and I hope you have a great rest of your week.

Interviewee: Thank you so much. I appreciate the time with you, thank you.

VIVO: Absolutely. Bye-bye.

Participant Profile

• Male heart disease patient with atrial septal defect
• Also undergoing cancer treatment
• 32 years old, diagnosed with heart condition at age 29
• Lives in Chicago, Illinois
• Married with two children
• Working professional (specific occupation not mentioned)
• Notable lifestyle changes: quit smoking and coffee consumption
• Participates in heart disease support groups
• Key challenges: social relationship adjustments, medication adherence