A question for the Chronic Heart Disease Community

Imagine if you could travel back in time and meet the person you were when you or your loved one were first diagnosed. What advice would you give them? How would you describe to that person how you feel now?

Answers from the Community

To take better care of myself and to quit smoking.

If I could go back in time, I think I would tell myself to take this disease more seriously, and that diligent care is required, even if you don’t feel bad or at the moment feel like you’re sick. Knowing that, if you don’t take care of yourself, that there are so many complications and so many ways that diabetes can make your life miserable. I think I would tell them that today, with all these complications, cardiovascular disease, neuropathy, neuropathic pain, retinopathy, gastroparesis, and on and on, that this isn’t fun. It probably is taking years off my life. Please change your diets. Get active and honestly, early, see endocrinology because they will help you take the disease seriously.

If I could travel back in time, I would tell myself not to gain as much weight as I have. I was very thin as a younger person, and gradually through the years I started gaining weight. So, that would be my first thing. Plus my father had heart disease also, so I would tell myself, I guess, back then, is to remind myself, “Look at Dad. Look at Dad. He had heart disease. You don’t want to end up like Dad.” Basically, how would I describe how I feel now? Pretty much, that’s it. I manage it with medications, and exercise, and diet, but the advice I would give them is to really keep my weight down, and I think that would have helped my heart. Now in the future, obviously,

I would tell myself to go to the doctor when I first started feeling bad, instead of waiting about 10, 15 days before I actually was seen by somebody. Now, I feel that I can’t do everything that I used to be able to do. I feel that I’m missing out on things with my children. But I’m working my way through it.

I would tell that person that it’s going to be okay, that take control of your own life, set home and your life up as you dream for it to be and treat it like mini vacations. When I’m having a bad day, I kick back and relax. I’ve since moved to lower elevation and I’m by the beach so I just pretend that I’m on a vacation on the days I need a day off.

I would tell that person to live healthier. Don’t take life for granted. Take care of yourself. When your body’s telling you something, listen. Go to the doctor. Listen to what he says. Don’t take for granted life because it could be took away from you in a moment.

I was young when things started happening. My advice would be to not be scared, to ask for help. And then as you get older, if you are a child, make sure that you keep bringing it up to every doctor that you see and speak up for yourself. Find yourself a good doctor who can be your quarterback and manage all the different specialists that you might need down the road. You need one person coordinating all of the care and believe it or not, you can’t do it yourself. And so you need to be certainly a navigator of your own healthcare, but you need to be able to depend on somebody. And if you can establish a long-term relationship with some doctor, that would be really helpful for you as you go on. My primary doctor has been my primary since about 1993, and that has helped me tremendously, and I’m actually going to see him today.

If I could travel back in time and find myself when I was first diagnosed, I would tell myself not to read too much into what the internet said as far as my heart disease, because it said that people with chronic heart disease and who’d had heart attacks and who had heart failure, commonly died within five years; three to five years. So I really freaked out when I started reading that and also that go more in depth with my cardiologist and ask more questions and sit down and write out a plan with him because there’s so much to do and everybody’s overwhelmed with all the different tests and everything, it feels like you’re kind of always rushing around doing, doing, doing, and then talking about medications and then doing the physical and then the doctors asking you questions. It feels like you never get to the planning part. So if I were to do it over again, I would be a little bit more aggressive about advocating for myself and for my care. I also would go and get a second opinion immediately so that I could make sure I was getting the right care and that they were treating the right condition. I would describe to myself that it was going to be hard and that it’s not a sprint, it’s a long walk and so just have to keep sticking with it and try not to get overwhelmed and try not to get depressed and just take every day as it comes and take it hour by hour if that’s what you need to do. But I would warn them that it’s going to be a rough road and it’s going to be a lifelong disease that’s going to affect you for forever. So relax.

I’m a firm believer that knowledge is power. So I wish that I would’ve had more knowledge, I would’ve done more research, I would have had more knowledge to be able to ask the doctors more questions, because with that more knowledge I would be able to form better questions to ask them. Now, I feel like I’m more prepared and more knowledgeable. So I ask better questions during appointments, and I don’t feel as nervous because I know more and I’m more educated about her condition. So I just wish I had more knowledge.

Things were going really good, and I would say that I could have described to myself that things were going to get better and you were going to feel a lot better and the stress level was going to go down a lot, and unfortunately, then COVID hit. And then, the stress levels skyrocketed. The diet and the exercise and everything else is going great, but unfortunately, I can’t say the same for the stress level. I’m having a bit of trouble with the stress level right now, because of COVID, I’m not going to lie. I’m having a little bit of trouble with that. So, a lot of the extra therapy and stuff has been added because of COVID. So, I’m having a little bit of trouble with that. So unfortunately, I would have to go back and tell my prior self that, “The shit’s going to hit the fan in 2020.” And I got to be honest about that. I’m really sorry.

There’s really nothing that’s changed. I’ve always had the medication. The one thing that’s different is that I would’ve been a little bit more assertive with my healthcare provider just to be on top of it, because I think there is a denial on my healthcare provider’s part, because I had just been [transigent].

I would explain and advise them myself that it’s imperative that you change your lifestyle immediately and start being proactive about your health, because it’s going to get pretty bad and anything that you can do to make it better will just ultimately be the best thing for you all around.

Going back to the first MI in 1998, I should have paid more attention following my bypass and stayed on my regiment of healthier eating and exercise. I allowed work to get into the way and didn’t keep up with my exercise routines or my better eating habits. Those would be the information that I’m going to give myself to avoid future problems that I faced.

I would advise the person I was then to take this diagnosis seriously, and to maintain a healthy diet and exercise, and not allow yourself to get overweight and docile.

I would tell myself to take it one day at a time, not get too frustrated with everything that has happened. There’s only so much that I can do and as far as how I’m feeling, I have good days and bad days and that’s what I would tell myself that you will have good days and bad days.