Heart Disease: Let’s Talk About the Emotional Side

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.

Hi @thankful @danab @rrowner2 @crashnam @predictable @jigglejaws94 @loli @faith123 @edda @hopeful33250 @balubeje @ronbee @jimana @martishka @shortshot80 @ryman @lmclaugh @eileena @ronaldpetrovich @billmichalski @twptrustrek @success101 @texas7777 @soloact @mikeyp @jms7 @tresjur @yoanne @charlottemaxine @grandmar @exboater @bill54321 @lioness @soph @texas14 @bpickartz @sheim @timdines @badmac @lynnkay1956 @lamborama @lailaamin @mbcube @degarden_girl @kdh1 @crhp194 @Drew944 @anniejam @twocents @ch246cf10 @imhart @mrsjaxx727,

It’s not easy to find a place where you can have a honest, non-judgmental discussion about the emotional side of heart disease. I invite you to do that here. Whether you are someone diagnosed with a heart disorder, or have undergone heart-related procedures, or are caring for someone with heart disease, I’d love to welcome you to this conversation.

How did you manage the emotional experience of being a heart patient? Perhaps you’re trying to understand emotions that you’ve not felt before? How has this affected your everyday life? Do you have any suggestions or tips that might be helpful to a new patient? Pull up a chair, grab a cup of coffee, tea or a beverage you like, and let’s connect.

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/

I've personally experienced the depression following all 3 of my open heart surgeries. Fortunately, the docs and nurses warned me that it was probably going to happen and to just ride it out knowing it would go away. I think it lasted about 6 weeks with me. So, after the next 2 open hearts I knew to expect it. In talking with many people who have gone through open surgeries, I've found that this is not often discussed prior to the surgery. I'm going through it right now after having my 11 stent placed in my heart in January. It's different than the "after open heart depression" but nonetheless, still very real.
I'm just trying to "ride it out" hoping it will pass soon. I fortunately have a very loving, supportive wife that has been my sounding board.

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

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

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.

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.