A question for the Chronic Heart Disease Community

Take a moment to describe how you or your loved one currently manage this condition, including any medical treatments. How did you or your loved one and doctor decide on this approach?

Answers from the Community

At this time, I’m on medication. I also had an LVAD put in in November of ‘17. I come upon that by my regular cardiologist from previous heart attacks.

Currently, I’m managed with a CGM and a Tandem pump, which this became a closed loop system. We came to this because of very poor control and thinking that control would be better with this. Also, we’ve added medication as far as Jardiance and Ozempic, and particularly the Ozempic has been awesome. We’re seeing a difference in my sugars. Also, one of the wonderful side effects is a decrease in appetite. And then also, we’ve added cardiovascular medicines because I just had a bypass in December. So these things have definitely helped, particularly the technology, because I think I’ve spoken about how frustrating it is day-to-day. Honestly, these devices have made things so much better.

I currently manage my condition by taking several medications. I also walk. I do a lot of walking. I started walking about five or six months ago, and I think that has really helped me to strengthen my heart. Me and my doctor decided on this approach because it’s the best possible way; manage it with medicines and then exercise and diet also.

My condition is currently managed with three different heart medications. One is Entresto for the muscle. Then I’m on two blood pressure medications along with Lasix and Lexapro. We agreed upon this per the doctor after treatment in the hospital over a year ago for congestive heart failure. I see the doctor at least twice a year, both my primary doctor and my heart doctor to check my heart and make sure the muscle’s still functioning and find out what my ejection fraction rate is.

I use various blood pressure medicines. I use Lasix, Hydroxyzine, things like that. I also take vitamin B6 to help with energy. If I’m feeling really sluggish, I’ve even been encouraged to drink a little caffeine, but I try to stay hydrated. Some of the big things I do are keeping my stress levels low, allowing for flexibility in my life, using relaxation, light exercise, things like that to help me keep going.

Some of the things that I do … one of the things that I did that was a big factor was smoking. I quit smoking. I’m on medicine for stress, but I have tried to reduce the amount of stress in my life, the things that my doctor told me to do. I keep up with my appointments. I go to the doctor when I’m supposed to, which is something I didn’t do before. I take medicine. I take medicine for high blood pressure, anemia, beta blockers. I’m also trying to follow the diet, limit my salt intake. I’m on fluid restriction. All of those things I do.

Mostly, right now, on a day-to-day basis, I monitor my blood pressure. I take a blood pressure medication. And as I said in the previous question, I do wear a Fitbit to help look at my heart rate. As far as longterm treatment, I have a yearly echocardiogram and stress test and I’m managing how it will look in the future. It did make it so that I couldn’t have surgery to remove a tumor in my breast. My breast cancer was really close to my heart, and so I was not able to do a lumpectomy and radiation, so I had to do a double mastectomy and then chemotherapy. So even though it’s not my heart issue, it does, on a daily basis, impact me because of my breast cancer treatment, and my mastectomy. I now have lymphedema because of the mastectomy and removal of lymph nodes, which I might’ve avoided if I had done a lumpectomy and radiation.

My condition is currently managed through a variety of different things, obviously, the doctors. My cardiologist is primarily in charge of my heart care along with my general practitioner also. They’ve set up a number of medications that I have to take. I think there’s 14 that I take each day, 14 different prescriptions and plus supplements and vitamins. And then also, I need to watch my sodium. I can’t have more than 1500 milligrams of sodium a day, and I have to watch the fluids, less than two liters of fluids a day. If I can, I try to do light exercise like walking or bicycling. I do swimming and sometimes, just even walking the hallways in my apartment building. It’s important for my mental health that I take some medication for that, that I take something for my depression and so that I can get through all of this, and then arranging all of my medications every month into pill boxes so that I’m not struggling every day to find out what I’ve taken and what I haven’t taken. That’s a whole project. I have four different pill holders and each one is one week and then I dole out all the medications into those four if I managed to get all of it from the pharmacy. That’s another thing. Got to manage the pharmacy and get all the refills on time, which is hard because doctors prescribe at different times and then insurance won’t give you the next one until that month is over. It’s very complicated. As far as medical treatments, that’s about it. The medications, diet, exercise, mental health and seeing all my other doctors and tests, and then diet, exercise… Which one am I missing? Diet, exercise, medications and I think that’s it. I also have to sleep in a recliner because I have problems breathing if I’m laying flat in a bed. There’s a number of different things. The approach that they’re using is just treating what is right now. So far, there hasn’t been any magic pill that’s been available to cure my heart problems. It’s just taking it as it comes and try to keep from doing any more damage to my heart. That was long-winded.

Talking, going to appointments has helped us to decide on what approach for medications and treatments. She has an asthma action plan that her PCP and I have come up with a plan for, as well as the pulmonologist. She takes Xopenex and FLOVENT inhalers. We came up with the addition of using a power wheelchair with therapy, going to physical therapy at Madonna. And she takes Enalapril and Sildenafil for medications that were discussed with her cardiologist that help her heart and her blood pressure and Sildenafil helps her pulmonary hypertension, it’s a medication for that. Mainly just going to those appointments and therapies and discussing our needs and coming up with a plan.

Currently I’m just on baby aspirin and Atorvastatin for medication. We decided on that, my cardiologist and I, after trying a number of medications that they sent me home on, including beta blockers, which cause extreme, extreme depression, so I had to be taken off of those, and we tried lower blood pressure medications, which I had to be taken off of those because they bottom my blood pressure out so bad I was passing out. Kind of by process of elimination, I ended up on those medications. Then for the stress portion, we’re doing psych meds therapy, independent and group exercise, meditation, other coping mechanisms, and I worked with my mental health team to decide on those. I’m also using diet and exercise, of course, along with the baby aspirin and Atorvastatin, also decided upon with my cardiologist.

I just have to take medication daily, watch my heart rate, drink a ridiculous amount of water so that my heart rate will stay down. I currently watch a heart rate monitor if I exercise, or when I exercise.

Right now, I’m just being lightly monitored. I go and I get a heart scan, a MUGA test once a year, and also an echocardiogram just to make sure that the heart’s not more damaged. I don’t take any pills. I did used to take some pills initially, but when they found my heart problem, it was at the time of a breast case cancer diagnosis, so a lot was happening at that time. I have been able to repair some of the damage and not need daily treatment or medication, so that’s a positive.

The first treatment I received was a triple bypass after suffering a major MI in 1998. Since then, I’ve been on various medications, beta blockers, ACE inhibitors, blood thinners. I’ve had an cardioversion defibrillator device implanted due to my low ejection fraction. And, again, medication changes periodically to make sure I’m getting what best works for me. We decided on these approaches by talking to my medical team, both my primary care physician and my cardiologist.

My treatment is through medications and constant monitoring. Having 10 cardiac stents was the most important getting those stents placed. We had no choice. That was the only treatment. And then, of course, medications that I take on a daily basis.

As far as treatment goes, I’m currently taking medicine. My doctor felt that that was one of the better approaches, as well as trying to get me on a weight loss regimen to help with my condition.