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Participants at the 8th annual Science & Leadership Symposium — a joint effort by Mayo Clinic’s Women’s Heart Clinic and WomenHeart: The National Coalition for Women with Heart Disease – gained insight into their disease Oct. 10 through 14 in Rochester, Minn. They also met and networked with their new heart sisters from across the country, and made plans to go back into their communities and raise awareness of heart disease in women.
Here are some of their stories:
* A 24-year-old who received a heart transplant at 15
* A 42-year-old who says the symposium “heals your soul”
* Another 42-year-old who wants women to take care of themselves first so they are well enough to take care of others
* A 51-year-old whose heart disease is still somewhat of a mystery
* And a 48-year-old who wants to encourage young women to take care of themselves now.
This post was submitted by Mayo Clinic Rochester communications consultant, Traci Klein.
I was an active mother of four running my own successful business. Like most of us putting my needs last until my body told me in no uncertain terms it was done. After having a PFO that I never knew I had closed, the unrelenting chest pains continued. I was sent up to Mayo in Rochester. There the well oiled machine took over. They were amazing, efficient, yet still maintained their caring attitudes.
After many, many days and tests. … I thought they too would not find out what was wrong with me. But they didn’t give up. The last test showed I was positive for Endothelial Dysfunction with Syndrome X. My doctor that informed me was very kind and told me little was known about this disease.
I have spent the past five years researching and gathering any information I could find. I watched my health and life slowly get decline as the disease progressed. Local doctors were no help, most thought it was a made up disease. I was treated like a hypochondriac when I would go to the ER. Just before my first recognized heart attack last year, I had a friend take me in because I just could not break the pain cycle. This was a few days before my heart attack, after waiting and told I was probably just having a panic attack. It didn’t matter to them that I had my Mayo papers with me. While lying there for a couple hours, I over heard the attending doctor on the phone with the on-call cardiologist, he actually told him he really didn’t feel I had anything wrong with me that having someone there to hold my hand would not fix. That same concerned doctor patted me on the back as I was leaving and told me, “well you’re lucky, at least you can’t die from it”.
I want desperately to get the information out to all my heart sister who feel there is no hope or maybe I am imaging this … after they have ER visits like mine. I know most of us wait and wait hoping the pain would break so we don’t have to go to the ER. It is horrible that we have been made to feel this way. How many have died waiting too long? Where do we start to educate, we who have the diseases, but are not given the respect and common courtesy other in our position are given by the healthcare providers, or go straight the top and educate them so they understand and don’t have to be afraid of us because we are unique?
All I know is it is frustrating, as you can tell by my ramblings. Thank you for your time reading this and all the hard work you are doing to make change happen. I don’t know how I can help, but I want to be there for the next younger me that comes along and hopefully I could give her the understanding and comfort that eluded me.
Thank you again,
Christie