Hello all. My name is Cheryl and I have heart failure, and my last heart ejection fraction measured was 34%. Woah, did that sound like I am about to sit in an AA meeting? Hahaha! No AA meeting here as heart failure patients cannot drink or do illicit drugs. I am somewhat addicted to Slurpees however; living on the edge, right? Anyway, before I tell you all my dirty secrets, let’s start at the beginning.
March 2009, I turned 40 years old. I was in the best shape of my life; running 6 miles a day, eating healthy as a pescatarian and even shunning the beloved Slurpee. All was well and my husband and I just returned from a trip to Orlando sans children. (photo from our trip) I was happy because I felt healthy and just good: really good. Until “it” happened and my life would never feel healthy again.
It was a Saturday, and after eating my leftovers of dinner the night before (pasta with garlic marinara) I started my regular chores of cleaning and laundry. My adult daughter Brittni happened to be at the house and we were chatting about some projects when I felt as though my chest was burning. Heartburn, my husband concluded, from the mounds of garlic infused pasta I had just eaten. It became increasingly obvious that it was to be the worst heartburn of my life within minutes, and so my husband grabbed his keys and rushed to the CVS across the street to retrieve some antacids for me. Brittni was left to deal with the fall-out that came next. After the feeling of a burning chest I felt a huge need to empty my bowels. After that my face went numb and spread to my lips. At this point I was on the floor because I was afraid I would lose consciousness and fall to the floor. I was sweating, breathing rapidly and losing my ability to think. The worst was still to come: the vice-like grip that wrenched my heart came in waves. It felt something like labor pains; that ebb and flow, except it was my heart muscle. It would squeeze, let off, and then squeeze even harder, with about 5 seconds in between. While this is happening, Brittni is googling my symptoms and came to the conclusion that I was having a heart attack. In true Bryan fashion, as he cannot make a trip to the store without calling or texting me multiple times for details, he calls to ask me what flavor of gas chewable I would like when Brittni yells at him to come home and take me to the ER.
By the time Bryan arrived home 5 minutes later I was in agony. Our hospital is literally in our neighborhood so there was no need for an ambulance. We arrived at the ER with me writhing in pain (embarrassingly so) and were taken back almost immediately. I remember the nurse being really condescending, as she thought I was having an anxiety attack. Within minutes I was given nitroglycerin and just like a light switch was turned off, the pain was gone. After some tests, I was told I was suffering from cardiac spasms. Never even heard of such a thing. I was then put in an ambulance to our Cardiac Specialist Hospital for additional testing. After a cardiac catheterization, I was told that I had heart failure, at 40 years old, in the best shape of my life. Everything since that day has changed the way I feel about my place in this world; made me realize how precious life is; how fragile our bodies are and how everything can change in an instant.
This is how the story of this blog begins. I cannot possibly sum up the last (almost) 8 years living with this condition; other than to say there has been much sadness, futility and anger. But I also found courage and hope; a renewed purpose; acceptance at my new pace, all the while trying to live fully and laughing as much as I can each day. Humor is a necessary part of living with such a condition. I use humor with nurses so they poke my veins with a little more accuracy; with the doctors so they care enough to dig deeper into saving me; and with friends and family members so they don’t see how scared I really am. Part of this burden is that I cannot bear to see them worried, so you make light of it all, and don’t announce every pain or increased effort at just going about your day.
I could not find any other resources to help me with my journey and saw a need on the internet for such a blog. I am doing this blog for me to have a place to say what I mean without filtering it for my loved ones, and also to help those who are facing similar circumstances in the future. There are very few outlets I can think of outside of this medium that allows raw and open discussions about things nobody in polite conversations want to talk about: life with a debilitating disease and even death. This blog will talk mostly about “living” with this condition and the options that come with that. I also hope to document all procedures I endure to prolong my life. Maybe I will receive an LVAD, or maybe a heart transplant. This is still to be determined. But we also must discuss death and demystify the “boogeyman” in the room. I hope that my humor will keep all my thoughts, even the inevitable dark ones, honest but enlightening. I appreciate all who take this journey with me. And for those who are going through the same journey – take heart, as you are not alone.
I am not a heart failure patient but you are a classmate and friend. Your words are very encouraging. Keep your blog going! I think you will help many others HF patients and others “like me” with other illnesses. Knowing your personality all I can say is: you are true fighter!