US president Johnson announced that February was Heart Health Awareness month in 1964 “to give heed to the nationwide problem of the heart and blood-vessel diseases, and to support the programs required to bring about its solution.” To this day, we still fight against the number one killer of all people - heart and vascular disease.
February is a peculiar month for me. In addition to celebrating Heart Month along with everyone else, I multiple-times celebrate it as a heart-disease survivor and a member of a heart-diseased family.
Every February 11 I celebrate the anniversary of my open-heart surgery which took place in 2016 (https://livingwithfh.blogspot.com/2016/02/open-heart-surgery-day-1-to-8.html). This year, I even got to travel back to Utah where my surgery was done and meet again with my surgeon. It was such a gift!
After 9 years, and with many ups and downs, my heart has continued to change (you have probably heard the adage “once a heart patient, always a heart patient”). But despite the changes, I continue to live a full life (which is adjusted for me), and I am counting my blessings.
February 20th is the anniversary of this very blog. I started this writing adventure on this day in 2011 out of a complete desert of news and information about Familial Hypercholesterolemia. There was nothing out there to give me a map on how to navigate this condition and how to live with it successfully - because I was determined I was going to live with it at any cost The only semblance of a map was what I had learned from my family and the prospects were not very happy - everyone in my family with FH had had hard lives, marred by lonely sick years, disabling symptoms, many complications, long, lingering suffering, and early deaths. I was determined there has to be another way.
I wanted to document every step in my journey - all the tests, all the ups and downs of the treatments, all the successful and failed attempts at any medication so that others who I knew were out there could have a “real-life experience” reference to know what to expect through their own journeys. I figured that if I could reach at least one person like me, who was looking for their “tribe”, my job and the job of this blog is done. I have not put any advertising and any thought into making this blog more than what it has been from day one, but the handful of people that I know I have reached with my stories are such a gift to me! I thank you all for reading, and for your feedback over the years! I know (you have told me) you find a place of belonging here, and for that I am grateful.
A year after I launched this blog, The Family Heart Foundation (then, The FH Foundation) (https://familyheart.org/) was founded and that truly threw our visibility as FH individuals into the stratosphere and amplified our voices infinitely.
February 28th is also Rare Disease Awareness Day. I have known I have “a rare form of FH” since the age of 8 when I was first diagnosed. Officially diagnosed with HoFH at the age of 40 after my open-heart surgery, I am now officially a “rare disease individual”.
Along with finding out that I am now in this cool crowd of “rare disease people”, finding out that I have a rare disease also helped my family: certifying that I had HoFH meant that both of my parents have FH. Until then, because we never knew about mom’s family history and because her levels were considered borderline (because they were always much lower than mine and lower than my father’s), no one ever suspected her of FH. She was 62 at the time we found out my HoFH diagnosis and she had advanced cardiovascular disease already.
This year, I also celebrate the fact that mom survived her first (that we know of) heart attack a month ago almost to today. She went into the ER with difficulty breathing. Being a lung cancer patient, everyone suspected it was her lungs, but it was in fact a blockage in her aorta that was not sending enough oxygen to her body. She needed a stent right away because the blockage was significant but given her many co-morbidities and her weakened health they advised against it. They kept her in the hospital for a week and treated her blockage with medication, then sent her back home with 6 new drugs among which a statin. She is 71. To me, she is still very young.
FH is not a joke. It is a silent killer and left untreated and ignored it won’t ignore you, I can promise you that. There will be a time when it will speak. And it will be loud, and often not pretty.
Below is a picture of me and mom about 6 days or so after my surgery. She came to babysit me while I convalesced but in an odd twist of fate I had to babysit her, as she got sick with the first symptoms that eventually lead to diagnosing her lung cancer.
This year, as she had her own heart issues, I wished to God that I could have been there for her (she lives in Romania), but technology is all we had to keep us connected.
I am grateful for the genes she gave me. Good and bad. Bad, to force me to learn how to be a fighter and not take one day for granted, and good to be stubborn and strong enough to fight that fight and overcome.
She and I are both moving forward - scarred but more aware. Weak but still fighting.
Everyone should celebrate heart month because, as my sister reminded me the other week, “we all die of heart disease.” It is the only organ that decides when they call it.
Stay healthy, friends and heart warriors, and always know your numbers (cholesterol, blood pressure, pulse, and oxygen) and stay informed. I am living proof that advancements in medicine are working miracles and not only improving but also prolonging healthy lives nowadays and allowing us to build up new memories. Let’s hope this continues!
Happy Heart Month to all!
