My name is Maureen Daniels and I am/was a dilated cardiomyopathy (DCM) patient for over 30 years. I developed cardiomyopathy at age 37, in 1985, and at that time, there was little specific drug treatment. I lived with the disease for 30 years, and was very blessed, as I was declining, to get a heart transplant in January 2017. Today I feel great and am doing fine. I also had two other siblings who developed the disease, and after genetic testing, we know that it was a genetic defect that caused DCM in my family.
It’s been my experience, and I think possibly my siblings also, that DCM affects not only our hearts, but also our emotions and mental health. One thing I noticed in my siblings during the onset of cardiomyopathy was some of the same emotional and mental effects that I had experienced too. I have not read much on this, but I had developed some depression before I was diagnosed with DCM. I had even seen a psychiatrist and been on medication, which I later stopped due to side effects, just a couple of months before my diagnosis. I also experienced some more of this over the years as the disease continued, though I worked full time, traveled in that work, etc.
Since I have seen the change in my emotions and mood when I was sick and now that I am well, I wonder if the depression, or sad mood, is part of the onset of symptoms that our body senses when it is not well. I felt frustration and loss at not being able to do all I wanted/needed to do, and worry about what that meant. I felt guilty that I was somehow not doing enough to feel better. Now that I know it wasn’t my “fault” for not enough stress control, lowering my expectations, not saying no enough, etc. (All these coping skills are important to practice). But it may not have changed the outcome a lot. And I am more relieved now to know this, but I wish I had known this years earlier.
What I have done over many years now is work on controlling fears, focusing on the present (mindfulness), exercising as I am able since that lifts mood, prayer and faith, connecting with family and friends who are supportive, and not isolating myself. It helped to have accurate information about my disease, status, and medication from my doctors and nurses, and not projecting into the future. I still work on learning and accepting my limits. I know I am doing the best I can.
What I share is just my story, but I do hope it might help others as well to realize that the invisibility of this disease and lack of awareness of its effects keep us and others from understanding its impact. We can learn to be kinder and gentler with ourselves and to live each day as well as we can, trusting God to help us as we need it.
*Medical Disclaimer: All DCM patients are different. Information presented on the DCM Foundation website is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Please consult your physician, cardiologist, or other qualified health providers with any questions you may have regarding a medical condition and/or before doing any activity.
Thanks Maureen – your information is really helpful and inspirational
Thanks for sharing Maureen yor journey is very insightful. I was diagnosed with cardiomyopathy and its genetic 5 weeks ago.
Thanks, Sallyann, for sharing and i hope that you have good medical care and support also. This disease does not have to control your life, and while you may have limitations, I hope you can find a balance that gives you plenty of fulfillment and joy.
very inspirational story. Nadal now with all the new medicines and technology we should all be able to live longer
i really.needed to hear this as i am experiencing a return of symptoms after 32 years. I am trying to be positive about the next steps but not sure how i will make that happen. thanks for your story of encouragement.
Is there someone who I might be able to chat with online regarding what and where I might be able to seek advice about the issues and effects of my mental health.
Thank you in advance.