A question for the Chronic Heart Disease Community

Who are your biggest supporters specifically when it comes to your or your loved one’s condition? For example, your doctor, friends, family, or someone else? And what are some examples of how they have supported you through this journey?

Answers from the Community

My husband and my child are, just because if I feel like something’s wrong and whatnot my husband and my child tend to calm me down, so that my heart rate does come down. My husband makes sure that I am drinking enough water on a regular basis, even though I am, but he always asks. Then we always, as a family, just watch our sodium intake.

My biggest supporters have been my endocrinologist and particularly, my endocrinology nurse practitioner. One thing she does is I upload my comp information and CGM information and approximately every two weeks, she looks at that and messages me on the portal as far as what I need, excuse me, what I need to do to change my pump settings. She’s been my cheerleader when I’ve been down. I have written her in the portal about how frustrated I am and how I feel that hard work really doesn’t make a difference, that you’re going to die anyway and you’re destined to have complications, and she has been so, so supportive, I think because she is a type one diabetic herself. Also, have a good friend who constantly reminds me of self-love and self-care and is always there. So all three have been my biggest supporters.

My biggest supporters are my partner and my son. And basically they helped me with my medications and making sure I take them, remind me and plus they also work out with me. They come and walk with me and that helps support me through my journey.

My husband’s my biggest support. He picks up when I’m having an off day. He pitches in. He, too, has heart problems, but we help each other out. It’s how we get through it. Some of my doctors are really good. Even my pain doctor helps me with this because he’s really good at coming up with alternatives to just medication.

My family and my friends are my biggest supporters. They walk with me when I need to get out and exercise during the day while I’m at work. And then, of course, at night when I get home from work, they share words of encouragement with me when I’m not feeling too well, and they check on me frequently to make sure that I’m feeling well.

My best friend is my biggest supporter. She’s also my caretaker. She bathes me, helps me when I’m incontinent. She tidies up the house, takes me to my appointments, picks up my medication. She does all of that. The doctor of course, is very patient. I’ll see him frequently. My spouse is supportive, but my best friend is my biggest supporter and she goes out her way to do all that she can for me.

My spouse is really good about knowing when I need to rest. And he is always my champion and my advocate, but also my protector. And he will tell me to slow down and stop before I will. So I’ll just go, go, go. So that’s really helpful. It’s been really helpful for me to have a strong network of friends that I can talk to and connect with, having a great medical team and making sure that they talk to each other. And then for me, my faith is very important and I’ve had close spiritual guidance from three different pastors over the time. And that is also very important to me.

My biggest supporters are definitely my friends and my family. I’ve got a couple of friends that help me out all the time, doing the things that I can’t do and driving me around or helping me pick up things or taking me to doctors, taking me to the pharmacy, taking me for tests, and then taking me to the hospital if I’m having heart failure or chest pain. My father, also. My father’s helped me in a number of ways and it’s been a learning curve because when you first tell people that you have a disease, it doesn’t necessarily mean that they’re listening or paying attention or understand what you need to do to be healthy, and so it feels like it took a couple of years of explaining how bad it was and how hard this was and what I needed to do if I wanted to be healthy in as far as what I ate and what I drink and the things that I could no longer do. You can’t go out and go out with the family every time they go for take out or go to the restaurant and stuff, there’s nothing you can eat. You can’t go out like you used to and go to a concert and have lots of drinks and be up all night. I used to smoke. I obviously had to quit smoking and so you couldn’t do the things that you once did and it took some time, but I think friends were pretty good from the beginning because they also had their own health issues. My family has taken longer. But yeah, my father has helped me out in a number of ways once he started coming around and same thing driving me and financially, and sometimes just listening is great. So I would say the examples are … There’s just so many. Little things that people have done that … My friends bought me some pajamas so that I wouldn’t have to wear the gown at the hospital with your butt hanging out. They bought me some pajamas that had a pocket to put the cardiac monitor in so I could wear pajamas at the hospital instead of gown and bought me some slipper socks and stuff. Always being there if I had to go to the hospital or if I needed to be picked up or taking me anywhere. I think that it’s been exceptional because there’s been so many doctors and hospitals and tests and pharmacies and everything. They’ve been wonderful and I’m grateful and I couldn’t have gotten through it without them.

I think her home health nurse has been a great supporter and help, as well as a good family friend, coming and helping do vitals and medications. And I believe that my stepmom coming once a month to help out when she was younger, as well as now. Wanting to learn how to take care of her and do meds and do vitals has been a great support and helped tremendously in our family.

I think probably my biggest supporter right now is probably my partner. We don’t live together, but he is very, very supportive. Talking and just overall being there for me. My friends are big supporters and my providers, I have an amazing team of healthcare providers, both mental health and other providers, primary care. My cardiologist is amazing. I have an amazing neurologist. I just have an amazing team of providers in general. They’ve given a lot of overall support in the form of talking. I got a visit at the hospital when I was there from a friend. I wasn’t there very long, so I didn’t get a lot of visits, but I did get a visit. I’ve gotten tons of offers of assistance at home if I need it. My provider team has worked together really well to give me kinds of support. It’s just been really great. I’ve really had a lot of support. I’ve been very, very lucky in that respect, especially from my providers. I know talking to other people, they have not been as lucky, especially getting the support from the providers. So, I definitely have been very, very lucky in that respect.

It’s definitely been my mom who also has a heart condition. She has been there supporting me through every doctor’s visit, everything. My dad passed away of a heart condition when I was 15, and so, a lot of this is probably pretty difficult for her to have to watch her child do when she had to watch her husband pass away from the same thing. She makes sure that I have healthy meals, and that I get to my doctor’s appointments, and that I just have somebody to talk to, or cry to if that’s what I’m needing at the moment. Could not have done this without my mom.

First and foremost, my wife’s been the support and the help I need to help recover. Secondarily, my primary care physician who detected that I wasn’t showing the improvements that I should have been and sent me back for more testing, specifically a angiogram, which showed another major blockage that my cardiologist was able to stint this time versus a bypass. Probably the best information I get is through some internet forums with other patients, learning from their experience and being able to share the same frustrations and experiences with others so that I know I’m not in this alone and there is a light at the end of the tunnel and it’s not an oncoming train.

My biggest supporters are my family. Having been diagnosed at such a young age, they encouraged me to do things and continue on. I went to college after my diagnoses, adopted my granddaughter and try to live as normal a life as possible.

My family are big supporters and help when they can. My doctor is also very good at making sure that she’s available if need be. As far as how they help me, if I need help with any housework, or going to the store, driving, they’re there to help me.

First of all, my wife was helping me through all this. My sister who just tries to keep me pumped up and going. I have a doctor who shows that he really cares, he’ll call and then that’s probably it.