Heart Disease: Let’s Talk About the Emotional Side

Posted by Kanaaz Pereira, Connect Moderator @kanaazpereira, Mar 9, 2020

Recovery from a cardiovascular event is not easy; it’s not just the physical pain–the emotional pain can be an unexpected challenge. Depression, anxiety, fatigue, feelings of guilt, emotional distress are common repercussions of heart disease, heart attacks, heart failure or heart surgery.

Talking with people who’ve gone through a similar experience can help make sense of the emotional and psychological aspects of heart disease. Connect is a place where such honest conversations can safely take place, where you can learn to feel better, together. I invite you to share your thoughts and emotions.
How has a heart-related diagnosis/treatment affected your mind and mood? How did you cope with these emotions? What strategies and tips would you offer a friend who’s going through a similar experience?

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

Dana, Volunteer Mentor | @danab | Mar 11, 2020

Hi everyone, i am a survivor also ive been thru some dark days with my ICD pacemaker and all the fears associated with a heart that was pretty sick. My biggest issues started about 2015 when i had a really bad episode of vintricular Tachacardia (sorry for my bad spelling) and honestly for the first time in my life though about how much i did not want to live anymore. But i am well past that now and am doing great with my new Heart i was blessed with 2 years ago. So i know about how dark life can get and for me Prayer was my salvation and God has blessed me so much. But please realize that this forum is a great place to help with all the emotions associated with any of lifes challenges. If i can help please ask.

mayofeb2020 | @mayofeb2020 | Mar 11, 2020

In reply to @danab "Hi everyone, i am a survivor also ive been thru some dark days with my ICD..." + (show)

When I had my TIA in January, I felt the same way too. I can't stand how it had affected my children who had been nothing but super supportive and wonderful to me. I knew it had put alot of stress on them. Then it's the doctor's appointments and new meds. I had been healthy before that. I seldom go to the doctor. I still feel down some days. But I have to be grateful I have such great children. I guess it is one day at a time for me.

exboater | @exboater | Mar 13, 2020

In reply to @kanaazpereira "Hi @thankful @danab @rrowner2 @crashnam @predictable @jigglejaws94 @loli @faith123 @edda @hopeful33250 @balubeje @ronbee @jimana @martishka @shortshot80..." + (show)

I can understand someone’s scarred feelings. When I had my total heart block level three during the night after they put in a temporary pacemaker ,lying in the dark and alone, I was very scared that I wouldn’t make it. Now that all seems like an old feeling.

captainterry | @captainterry | Mar 15, 2020

In reply to @c06784 "I was diagnosed about 12 years ago at 42 years old. Active male, no symptoms. Was..." + (show)

@c06784

I was diagnosed about 12 years ago at 42 years old. Active male, no symptoms. Was in for a checkup and my doctor heard a murmur for the first time, 1 week later get the HCM news. 25mm with obstruction, put on beta blockers and told not to play basketball any more. It was shocking to say the least, but as we all know, it can always be worse. MRI screening has shown that I have 16-20% patchy scarring in septum, so I am in a gray area as to whether I should have an ICD placement. Mayo Doctors estimate 2% chance of 5 year SCD event, so that's what I live with every day. If getting an ICD was like wearing a seatbelt, I'd be all in, but its has drawbacks and risks too, so I have decided for now to not have an ICD implanted. It's funny when you talk to people they say that 2% sounds like pretty good odds. When you see 2% mortality rate due to COVID-19, we have mass hysteria, when the shoe is on the other foot I guess. Oddly, I don't look, act or feel any different than I have my whole life, just have that thought about dying once in a while, happens at odd times.

I am going on a ski and hiking trip to Utah with my son next week, so, like I said I feel fortunate in many ways. I have 2 sons, one is 23, one is 20, neither have shown any abnormalities yet, I did undergo genetic testing late in 2019, I tested positive for genetic cause for my HCM. My sons have decided to undergo the genetic testing, praying they are negative and can discontinue screening. I think their well-being has always been more frightening for me than my own condition. To me, the hardest thing about this disease is knowing it will not get better, you are just hoping it won't get worse. Get to know your care team, including the people giving you your tests, educate yourself, follow your doctor's plan for you. Guessing everybody has some weird triggers, the only time I have any symptoms is after lunch, oddly, it doesn't matter what I eat, salad, protein, carbs all the same, I get a little winded at that time, so I just know what to expect and plan accordingly. BTW, MyoKardia is working on drug therapies for HCM that has shown some promise for actually improving heart function, check it out at: https://myokardia.com/

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Thanks Brother for the excellent overview. I am active 70, HOCM, with ICD installed 6mo ago. Your "wierd" trigger has been very real to me over the past 12 years. In fact, it is about the only pattern I have observed related to the onset of slight tightness of breath, followed by dizziness/closing in, and occasional 3 to 5 second loss of awareness. None of this has invoked a reaction by the ICD. Usually can happen after lunch or dinner when I get up and start walking to resume my daily activities, just as I was doing before the meal. Not every day, every meal.

I have shared this definite pattern with my four excellent cardiology specialists and don't get any definitive response from them other than " the body sends blood to organs to digest food". If you or anyone establishes a more documented connection to this syncope phenomenon please pass it along.

lailaamin | @lailaamin | Mar 20, 2020

I am one of the patients that food many times cause the onset of my dizziness. It is usually carbs that causes it.There is going to be an article written for the JAMA on this so more doctors become aware. I had my septal myectomy on October 1, 2019 at the Mayo with Dr. Schaff. I am completely free of any of those symptoms I had before. Although postop is not easy, It was the best decision I ever made

eileena | @eileena | Mar 21, 2020

In reply to @miracleman "I've personally experienced the depression following all 3 of my open heart surgeries. Fortunately, the docs..." + (show)

miracleman,
Thanks for sharing your experience. Though I do not recall depression as being part of my recovery from the quad bypass I experienced almost 5 years ago, I do recall working hard to feel better physically. I was given loads of support by my son who became my chauffeur and main cheer leader. I also recall being told I'd go to cardiac rehab and never got the call from the one where my cardiologist, but did get directed to the closest one by the nurse running the gym close to my cardiologist. I did my 36 visits and have benefitted from this.

Perhaps it is time, if you haven't returned to the support at the cardiac rehab gym near you, to go back. AND 11 stents are a heavy load to slogs through. I find your journey to be admirable.

captainterry | @captainterry | Mar 21, 2020

In reply to @lailaamin "I am one of the patients that food many times cause the onset of my dizziness...." + (show)

Thanks. That makes at least 3 of us in this group who have a pattern between, HOCM, eating and symptoms. Any others?

Debra, Volunteer Mentor | @karukgirl | Mar 22, 2020

In reply to @captainterry "Thanks. That makes at least 3 of us in this group who have a pattern between,..." + (show)

It's comforting to think that you may be weird or maybe crazy...and then read on this board I may not be alone in my weirdness. I have noted in the past year or so, if I eat a 'robust' meal, the fun kind of food, mostly carbs or heavy like say a hamburger and fries, or biscuits and gravy with a mimosa, I get pain and/or tightness in my chest, a tight constricting like feeling in my neck, tachycardia, dizzy or like a head rush and feel generally bad. I thought it was just me, but I have seen it mentioned before. Interesting symptom to dietary indiscretion. It doesn't seem to have a preference; breakfast, lunch or dinner. Not every meal or every day.

jimsfree2 | @jimsfree2 | Mar 22, 2020

In reply to @karukgirl "It's comforting to think that you may be weird or maybe crazy...and then read on this..." + (show)

I ate sausage, biscuits and gravy the other morning and then later in day experienced the same symptoms but on top of that am also diabetic.

d1956 | @d1956 | Mar 23, 2020

In reply to @karukgirl "It's comforting to think that you may be weird or maybe crazy...and then read on this..." + (show)

I was diagnoses with HOCM May of 1999, and I notice more palpitations after eating a larger meal. Heart rate increases as well, but no other symptoms. I thought I was crazy weird, relieved to find I'm not the only one.

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