Heart Disease: Let’s Talk About the Emotional Side

Thank you, I joined this group in September of 2018 and when replying to another member last week mentioned depression which my husband experienced following open heart surgery. Hopefully a discussion about emotional wellbeing will help others.

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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'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 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/

In 2017 my husband and I went on a gorilla trecking trip, climbing up the side of a volcano in Rwanda. He was diagnosed with HCM at 42 and 30 years later he was still fit etc, we end up at 8000 ft.with no shortness of breath or fatigue sooo go figure. Fast forward to March of 2018 and he had a complete heart block and ended up with an ICD, Strange how things suddenly change because on October 4 2028 had septal myectomy. So take care and keep an eye on any small change.

I think I must be one of the three blind mice. I don’t think I was depressed at all but did have a sense of awe. The need for open heart surgery came very fast after some tests at Mayo so I didn’t have time to think about it. I had a total arch replacement and an aneurysm repair. Was in the hospital 8 nights and had to go home with oxygen. Still, I felt well, if a bit tired. I was just so grateful to Mayo, the doctors, the kind after care...thankfulness was my main emotion. However I can certainly understand depression about heart surgery, especially for young folk. I was 72 at the time of my surgery. Whatever you feel, I hope it will ease for you. Rehab helps as you can compare notes with others who have been in the same situation. I have another aneurysm that is not quite big enough for surgery. I really don’t worry about it but do keep going for checkups each year at Mayo. I have all the faith in the world for Mayo. Best of everything to all of you heart patients! Carol

Hello @kanaazpereira and the others in this discussion group,

Mt first visit with a cardiologist began when I was a preteen after having had Rheumatic Fever which left me with a heart murmur. At that time, the cardiologist wanted to see me every three months on a regular basis. For a preteen (with a very, very anxious mother), it was a stressful time. As I grew older, I sensed from what other cardiologists told me that this was not a major issue and would probably not be life-threatening.

As I am 70-plus now, I can say that while there is still anxiety when I notice a change in an echocardiogram and/or some other heart-related test, the anxiety has lessened over the years. I follow up with good doctors, maintain a healthy lifestyle of exercise and nutrition and try to keep my stress level to a minimum.

I can understand the stress, however, related to heart procedures, especially that of open-heart surgeries. I always have feelings of stress after procedures related to anesthesia. We have a discussion on Connect about the very real possibility of PTSD symptoms after being in ICU. The link to that discussion, https://connect.mayoclinic.org/group/intensive-care-icu/.

As most open-heart surgeries result in time spent in the ICU, I think that this discussion would be especially appropriate for everyone to look at.

I'm looking forward to hearing what others have to say about stress and heart issues.

@miracleman When I had my by pass surgery after I was back home I did have some depression but I kept my self busy by hobbies I had and taking care of my husband who was sick at the time. Dr. Didn't send me to cardio rehab but told me to exercise by walking 45 min. a day so me and my dog put a whole in the carpet. Do you have any hobbies or crafts you like to do? This really helped me took my mind of my heart surgery . Hope I helped some. Remember this will pass so make some plans of some kind nothing drastic like travel though just to visit friends or get out to grocery store or as my husband like the hardware store .

ANGER was my first response to my latest procedure, anger at what I felt were false reassurances and silence regarding the possible sequelae, minimal pre-testing, and manipulation by those interested in my condition. Even stronger was the anger at myself, for not seeking a second opinion, for putting work pressures ahead of the duty to my personal welfare, the duty to conduct my own research and find out in advance what I might be letting myself in for. At times afterwards I felt that on top of some alarming physical symptoms I must have acquired PTSD.

Now I am much more philosophical. I invested many hours in research and these gradually extinguished the fire. I still can't say that I ought to have submitted to the pressure. I still can't say that my cardiac health has profited from the intervention. But I can at least admit the possibility that, despite the new problems that it brought, it may have.

Welcome to Connect, @c06784,

You'll find many relevant and helpful discussions about HCM, ICD implants on Connect. For instance, you might wish to go through these discussions where you’ll meet other members who’ve shared some incredible insights; please feel free to post your concerns in any of the relevant conversations:

– HCM-ers: Introduce yourself or just say hi https://connect.mayoclinic.org/discussion/hcm-ers-introduce-yourself-or-just-say-hi/
– Pacemaker recipients: Looking for support from others https://connect.mayoclinic.org/discussion/pacemaker-recipients/
– Pacemaker surgery & precautions https://connect.mayoclinic.org/discussion/pacemaker-surgery-precautions/
– Positive Dominant Mybpc3 gene carrier, no HCM/ competitive sports? https://connect.mayoclinic.org/discussion/positive-dominant-mybpc3-gene-carrier-no-hcm-symptoms/