I Understand What it is Like to Not be Heard

Today is the one year anniversary of my second open heart surgery.  A surgery I vowed vehemently that I would never do again. A surgery that is so painful it can’t even be put into words. I have spent most of my life fighting and advocating for others… my daughters, my family, my friends, and my clients. It recently occurred to me that maybe I should start spending some time advocating for myself, speaking my truth, and raising my voice. That maybe it would help others navigate this journey we call life. So, I have decided to commemorate this anniversary by starting my own blog and speaking passionately about those things that make my heart beat, or keep it from beating.

Most people don’t understand what it’s like to live with an illness or medical condition and to be dying, literally, yet nobody’s listening. Not your family, your friends, or your doctors. Often times we may have cancer, heart issues, mental illness and fighting a battle every single day, struggling just to make it through the day. Yet no one is listening. You are routinely told “you look great”, “you are fine”, “we find no evidence that there’s anything clinically wrong with you”, etc.

Your struggle is invalidated EVERY SINGLE DAY!

I have lived this for the last six years. It started in the beginning of 2010. Suddenly I started experiencing physical exhaustion. I routinely road my bike for 10-15 miles every day, but was finding great difficulty riding two miles per day.  I would easily become winded.  I could not go one moment more. I went to my primary care physician and my endocrinologist. Both of them assured me “you look great, push through it, you are getting older. It’s Important that you exercise”.

I continued to persevere even though every fiber in my body was telling me something was drastically wrong.

This went on for six or seven months until I ended up in the ER in severe cardiac distress.  Of course my EKG was normal, but my blood pressure was abnormally high. Luckily the ER attending DID listen to me and did a CT scan of my chest. There he found a large aneurysm on my ascending aorta. I was discharged from the hospital without ever being admitted as he saw no immediate reason for concern. I attempted for weeks to get my primary care physician to listen. I was routinely dismissed and told that it was nothing of concern, don’t be worried, just continue to live your life.

The frustration of knowing something is critically wrong, yet being met with deaf ears is infuriating and isolating. It is as if you are standing alone on a small island in the middle of the Pacific.

I took matters into my own hands and advocated for myself. I found a cardiologist that was willing to do an echocardiogram on me. It was discovered that I had a birth defect in my heart. One that has existed for 45 years yet went undetected. A heart catheterization was performed and it was found that my heart was in severe failure. Within several weeks, and two days after my 46th birthday, I was laying on an operating table having a 13 hour open heart surgery. I was put in hypothermia. Portions of my aorta and my heart were replaced.

All of this for someone who three weeks prior they could find no medical reason for my daily struggles – a condition that has existed for 46 years!

I survived that heart surgery, but had a complication that has haunted me relentlessly ever since…24 hours a day, 7 days a week, 52 weeks a year, for over 5 years!. Every heartbeat resonates throughout my body. It starts from my stomach, sends a thrill up my chest, pounds against my sternum, and vibrates up my esophagus to the top of my head. This happens 60 to 80 times per minute. To say that this is a challenge to live with would be an understatement. It’s difficult to sleep at night; it’s difficult to focus during the day. It’s a challenge some days to make it through the day. If I am upset or get excited the vibration becomes even more pronounced and more frequent. So you spend your days trying to remain as calm as possible. You try to distract yourself.

You are repeatedly told by medical practitioners that it’s no big deal. You try to convince yourself that you can live like this. For five years I persevered through this daily torment.

In July 2015, I again get the sensation that something is terribly wrong. I start having difficulties walking to the point that I can’t walk across my house without pain. I repeatedly seek the counsel and wisdom of my doctors. A few miscellaneous tests are conducted, and again I am dismissed and told that there is nothing medically wrong. I am instructed to “push through” the pain in my legs and to “dismiss” the feeling of uneasiness and mortality being in my near future.

Seven times I return to the physicians begging them to listen to me, begging them to be more proactive. Again, I am dismissed and told that “there is little to no likelihood of anything being clinically wrong with me”.

I make one final attempt. I visit my physician and beg for her assistance. I plead that I’m dying and I need her help to figure out what is wrong. Clearly, she just thought that I was some crazed 51-year-old woman or a hypochondriac that is becoming a pain in her backside. The next day I have an “event”. I lose vision in left eye for several minutes and I have difficulty speaking. I can think my thoughts, but I can’t speak them. I go to the ER and they discover I’ve suffered a TIA or mini-stroke. I’m told that I can try to address it on an outpatient basis or if I want, I can be admitted to the hospital. I explain to the ER physician that something is terribly wrong and that I’ve been begging my medical support team to listen for five months. He agrees to admit me and run several tests. From there the shit storm begins… every single day reveals a new piece of the puzzle. It starts with my carotid being 100% occluded…that’s right…my carotid is 100% blocked for 6 inches. From there it is discovered that both of my legs are loaded with emboli. My husband and my advocates continue to push for answers.  They were relentless. It was their tenacity that saved my life. After much prodding, additional tests were completed that revealed that I had a large thrombus sitting on my heart. I am kept in neuro ICU as they attempt to dilute the clot with intense IV medication. I am woken every hour for days, weeks, as they attempt to determine if I’ve suffered another event. I am on death watch.

It is difficult to explain what it’s like being on death watch. The hours tick slowly by. Waiting for something to happen. Praying that something will not happen. You start to analyze your-life. The choices you’ve made, the experiences you’ve encountered. The thoughts become overwhelming. Facing your own death is extremely difficult. At some point you have to detach. It’s almost like you’re having an out of body experience. The feeling of eminent doom is overwhelming. Doctors are skeptical when they look at you; after all, I looked totally “healthy”. But then they would read my chart and a sense of gloom would cover the room like a blanket.

One doctor told me “you’re the best looking patient on the floor, yet you are the sickest -no one would know you’re sick by looking at you”.

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Being wheeled into my second open heart surgery.

 

I cannot put into words the feeling of frustration and hopelessness when you know something is drastically wrong but you’re being routinely dismissed by medical professionals and others just because “you don’t look sick”. In the months that preceded my trip to the ER I told my husband and several of my close friends that I was dying. I was not overdramatic; it was just a statement of my truth. I could feel my body shutting down. Yet no one would listen. No one seemed to care. And the fact was, I was right. Slowly pieces of my body were succumbing to the plague that riddled them.

Things became very critical and it was necessary for me to undergo open heart surgery for the second time. This was my only hope, my only chance I had for survival.img_4283 I wanted to survive. Once again, one year ago today, I would undergo my second open heart surgery. My chest would be split open and my heart exposed for all to see. My prize for being ignored was I got to spend my Thanksgiving in the cardiac ICU fighting for my life. There was no turkey, stuffing,  sweet potatoes or pumpkin pie on my Thanksgiving Day. Instead,  I was intubated with chest tubes, arterial lines, catheters, and pacing wires invading my chest, arms, and neck.

As I slowly gained consciousness, I recognized the pain in front of me. I had met it before. There is not enough dilaudid to make meeting that pain any easier. The pain is like an avalanche roaring toward you. You can’t run from it when you see it coming. It overtakes you and buries you, smothering you and sucking the oxygen out of you. It was hard to wrap my head around the fact that I was being forced to endure this life altering event again. The pervasive thought was that this did not have to happen.  My heart would be physically repaired, but the mental and physical pain, anguish, and devastation would linger.

The frustration of screaming, and no one listening, would remain. The loneliness of being stranded on the island would leave scars.

Today, in my reflecting, it crossed my mind that my experience is not much different than those that struggle with mental illness, especially those that have an eating disorder or anxiety. An eating disorder is a mental illness with physical manifestations. My constant “vibration” which plagues me 24 hours a day, is not unlike the invasive thoughts that plague those struggling with an eating disorder or hound those that suffer anxiety… 24 hours a day, seven days a week. Relentless. Daunting. Paralyzing. The fact is…

You cannot always determine whether someone is struggling with mental or physical illness by looking at them.

Patients and families with sick children repeatedly seek the counsel and wisdom of medical professionals in the hopes of saving their life, but are routinely told “they look fine”, they don’t look sick, their labs are fine, all tests are normal, this is just a phase, let’s just observe over the next few months, etc. The daily struggle and frustration of trying to get someone to help, someone to listen, when you know your body or your child’s body is shutting down is difficult to put into words. You just want to scream and yell “I am dying! Why won’t anyone listen to me?”. This is much like the situation that Candy Miller in Texas encountered when trying to secure medical assistance with her daughter, Lacey Smarr. She took Lacey repeatedly to medical professionals and hospitals searching for answers, for guidance, for life-saving treatment. She even suggested her daughter may have an eating disorder. No one truly listened. After all, she looked fine. The next day, the day after her 15th birthday, her daughter suffered a cardiac event that would take her life. An event that could have possibly been prevented had someone taken the time and the energy to truly listen.

When we listen and take a thorough medical history we can hear the answers that we cannot see.

Please be clear, I am not blaming medical professionals for not “seeing” the illness in front of them. I am not blaming them for not being educated about eating disorders or mental illness because in all reality they may not even know they need to be educated, What I am blaming them for is not listening to the families and patients that come to them seeking their wisdom and their guidance, that are looking for intervention and support. I am blaming them for not truly taking the time to listen and understand the history. If you take the time to take a comprehensive medical history from your patients and truly listen to them the answer is there. It is slapping you in the face. It cannot be ignored. Much like my own experience with my heart, the answer was there. I even provided the answer, but no one took the time or energy to listen.

There is no greater frustration or pain than being routinely dismissed and invalidated when you know something is horrifically wrong and you are facing your death. Just because a patient does not look sick does not mean they are not ill, that they are not in a critical health crisis.

Today, I’m going to start speaking through this blog in the hopes that I may be heard. I will continue to support and fight for family and friends, but I am also going to start advocating for myself and speaking my truth. It turns out, that I have a lot to say. This has been exacerbated by the fact that the vibration that has plagued me since the first heart surgery has become even more pronounced, more invasive. I am not going to lie. The recover from this second surgery has been extremely difficult.  There have been many setbacks and challenges.  They continue today. The bottom line is, this did not have to happen. Had someone taken the time to really listen to me, to hear me, this may have all been avoided. So today, I implore you to speak. Please know that there are others out there, like me that understand what it’s like to not be heard. Please know that I am listening and if you continue to speak, maybe others will hear your voice.

 

For information about heart conditions, please contact the American Heart Association.