Heart Attack, Vulnerability and Disability Based Bias

Since I started my blog years ago, my goal has been to reach as wide an audience as humanly possible. To this end I have succeeded beyond what I thought was possible. As of today, over a million people have read my various posts. This gives me great satisfaction as this blog is a labor of love. I have consistently tried to put up two to four posts per month. In this regard, I have not been as successful as I had hoped. Recently, I have been particularly silent and for good reason.

I have been sick. I have not been sick in a routine manner. As is my life long penchant, when I get sick I do it in a big way. In April I developed serious cardiac issues that resulted in an Emergency Room visit. I thought this was an isolated incident. I had developed a very common form of arrhythmia called Atrial Fibrillation. I was prescribed medication and felt significantly better until June. My cardiac issues worsened suddenly and significantly. No way to mince words here--I had a serious heart attack. My heart has been damaged. The extent of the damage is unknown. I could have significant coronary disease or not. Regardless, there is no way around the fact I will be seeing a cardiologist for the rest of my life since I remain in heart failure. While this sounds terrible (and it is) millions of people are walking around with heart disease. Reading the physician reports about my heart is sobering.

Perfusion imaging was abnormal showing a large sized, severe intensity, fixed perfusion defect in the basal to apical and inferolateral walls consistent with a scar. Left ventricle ejection fraction was severely depressed with inferior akinesia"

Mildly increased left ventricle cavity size. Severely decreased left ventricle systolic function. Mild concentric left ventricular hypertrophy... Severe global hypokenesis. 

To comprehend the above, I have gotten a crash course on heart structure and arrhythmia. As noted above, Atrial fibrillation is very common. It is unlikely I will suddenly drop dead. It is also highly unlikely I will get out of a fib without some sort of invasive procedure. I am considering cardiac catheterization and cardioversion. Ah, consider. Based on my most recent visit with the cardiologist, the word consider is misleading. I really have no choice. I cannot remain in a fib. Time will become an issue. Action, invasive action, is needed in an effort to return my heart to normal function. Ah, that word--normal.  I have felt anything but normal accessing health care. I have consistently been patient profiled. I have been profiled in a way that has put my health at risk. I have felt threatened and expressed my concerns to health care professionals. The results have been mixed at best. For example, when admitted to Yale New Haven hospital I was instantly identified as a "fall risk". A nurse put a bright yellow tag on my wrist with black type "FALL RISK". Two bright yellow socks were tied at the foot of my bed that also emphatically stated "FALL RISK". Not one health care professional asked me when was the last time I had fallen. No one asked me anything about falling. When asked why I was identified as a fall risk I was told because I use a wheelchair. Anyone individual who uses a wheelchair is deemed a fall risk. The fact I have not fallen out of my wheelchair in years was not relevant. The fact the yellow arm band "FALL RISK" kept getting caught in my spokes as I moved or transferred to my bed were dismissed. I was told this is standard policy. Concerned about falling during a transfer, I cut off the yellow "FALL RISK" arm band and removed the yellow socks from my bed. This was merely the tip of a very large disability based bias that was ever present.

I was repeatedly told "we have never had a paralyzed patient like you" or "no one has ever asked such questions." My questions were not obscure. What sort of access is present on the cardiac floor? Where is a bathroom I can access? Will diagnostic equipment be accessible? What became evident was not shocking--no protocol existed for people like me. None. I was singularly unique--a fact I was reminded of many times a day. The first room I was admitted to was grossly inaccessible in every way humanly possible. I could barely get to the sink and the toilet and shower were not remotely accessible. My request for air fluidized bed upon admission was met with a simple no. We don't have beds like that. My risk for a bed sore went up exponentially. The academic part of my thinking was not surprised. I know the grim facts about disability and health care. Let me give a few bullet points.

People with a disability receive less routine medical care.

People with disabilities receive less cancer screening, dental care, flu vaccines and pain medication.

People with a disability cardiovascular risks are increased due to obesity and hypertension.

People with a disability are twice as likely not to access medical care due to cost.

People with a disability are three times more likely to have difficulty finding a physical willing to accommodate their needs.

The barriers I encountered to were not due to uncaring health care professionals. In fact, I was admitted to a world class hospital facility--Yale New Haven Hospital. Yes, I was in a teaching hospital and an Ivy League one at that. Yet I was about to get in education in alienation. It did not take me long after admission to realize I was not going to get adequate care. Once sent to the cardiac floor, put in a standard medical bed, deemed a fall risk, and my request for an adequate bed dismissed I did not see a physician for 12 hours. At 5AM I freaked out. I knew I needed help. I was teaching at Yale's bioethics summer intensive. Better yet in terms of irony, the night before I was admitted I had met with the hospital ethics committee and talked about the Ashley Treatment. I knew some powerful people who would help.

In the pre dawn hours I realized I was in real trouble. I was vulnerable. I was at risk. I had no family who would be willing to help. I was completely alone. In desperation I texted the director of the Yale bioethics program. Please help! Calls were made on my behalf and before the morning was over my care took a turn for the better. A steady stream of people were in and out of my room. Not one but three people were on the search for an appropriate bed and accessible patient room. It would be very easy of me to hang Yale hospital out to dry. The facility is grossly inaccessible. This did surprise but the inertia created by the repeated observation "this is a very old building and hospital" did. Despite the great amount of work on my behalf, nothing has changed to the infrastructure at Yale as a result of my visit. Yale remains one of the most inhospitable campuses for wheelchair users I have ever visited. If it is bad for me as a visiting scholar, I shudder at what under graduates must experience.

The gritty reality I faced at Yale is a nation wide shame and civil rights violation that has cost the lives of an untold number of people. The health care system is not prepared to deal with people with a disability who get sick. Transportation within and to the hospital is problematic. Accessible medical equipment is inadequate or utterly absent. Safe methods of transfer are unknown. Stigma abounds. Wherever a patient such as myself with a disability went problems abounded. No one knew what to do. I was a problem. Accessible exam tables were absent. Accessible bathrooms were non existent. It took dedicated and driven health care professionals to find a patient room with an accessible bathroom. The only reason this effort took place was because word got out I was, gasp, a visiting scholar. Upon admission I was assumed to be just another wheelchair user who had no life, no job, no family. Friends and fellow scholars visited and calls were made on my behalf. Without the efforts of unnamed friends and colleagues my treatment would have been substandard--think comfort care.

I have been badly shaken and my world has been turned upside down. I am fearful for my life. This fear is not based on concern for my heart though I am deeply worried. My fear is the lack of care I will receive. My fear is the negative assumptions made by health care professionals and the complete lack of access within medical facilities. My fear is based on the ignorance associated with my disabled body and the lack of any protocol in place to insure a hospitalization is safe. I ended up leaving Yale without any skin breakdowns but that would have happened had I not been able to use an appropriate bed. A bed I was told was not available upon admission.

I think my future existence can go one of two ways--I have significant heart disease and will continue to get worse. Significant surgery might be needed and my future is limited. At the opposite side of the spectrum, there is a chance this is an isolated incident. Medications will be effective in both the short and long term. I will one way or another get back into a good heart rhythm and look back periodically and think I dodged serious trouble. Of course, there is a middle ground between these polar opposites. Much will be learned once my health insurance kicks in. As for now, I remain uninsured. That will change soon now that I am a resident of the fine state of Colorado. Yes, in the midst of teaching and having a heart attack I moved to the Denver area. New York to Denver was a long drive though there were highlights such a Car Henge in Alliance Nebraska and the Iowa Museum of Aviation. This move is a dream come true. I have always wanted to live out west and now I do. I love the Denver rail system and am struck that I am no longer the one wheelchair user where I go. Better yet, I am ready to write after my long silence so get ready for many new posts in the coming days and weeks.