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Friday, July 21, 2017

Mundane Observations About Living in Denver

Yesterday I wrote about having a heart attack and how vulnerable I was hospitalized as a man with a disability. Since I was released from Yale New Haven Hospital and my lease in Syracuse expired I spent a few days saying final goodbyes. Leaving the city of Syracuse was easy. Leaving the close friendships I had formed was not. Driving from Syracuse to Denver in three days was a blast. I love long cross country trips. I am fascinated by interstate culture and the vastness of this nation. If you ever find yourself in rural Nebraska I highly recommend visiting Car Henge in Alliance. If in Iowa, the Iowa Museum of Aviation is another trip worth your time and energy. This says nothing of Iowa City, a picturesque and vibrant college town. 

One may ask, rightfully so, what have I changed in my life post heart attack. The answer is a lot. I have had to abandon some real food and drink loves. For those that know me, Coke is not a soft drink but rather “Holy Water”.  No more Coke for me. Caffeine is not good for the heat. This is obvious as when I do have the random cup of tea I can feel the beat of my heart change. This is an unpleasant sensation. No more hard alcohol. No Sailor Jerry rum. No sailing at night as I watch a mindlessly bad movies. Sailor Jerry also just happened to go hand in hand with Coke and pretzels. Of these three staples—coke, rum and pretzels--rum was easiest to give up. I never cared about the booze but rather the flavor when rum and Coke were mixed together. I do have a Coke on occasion (at most once a week). I even tried a Coke Zero and a Diet Coke. I do drink very small amounts of alcohol. It is not the alcohol I am drawn to but the ritual. I enjoy a drink and salty snack at the end of the day. I now have one or two small glasses of port before bed time. I do mean small as I follow the American Heart Association and Heart Rythym Society Guidelines to the letter. The real struggle has been the elimination of salty snacks. Growing up one of many nicknames I had was “pretzel peace”. I love pretzels. I love salty foods too. They are absent from my diet. The impact of lower salt and little alcohol has had a profound impact on my body. I no longer have chronic edema in my legs. My knees look big and my legs appear to be spindly. This makes transfers of all kinds much easier. 

Other changes are related to living at altitude. I use sun screen daily.  The sun in Denver seems ever present and is intense and hot. Without sun screen I would become lobster red. I am also drinking up a storm. I have given up my penchant of living on the edge of dehydration. I drink water all day long. I use cream on my skin many times a day. Denver air is dry and arid. The humidity level is very low. Moisture is sucked out of my body in a way that is startling and vastly different from life lived at sea level.  

The move to Denver has been most interesting from a cultural perspective. Downtown Denver is awesome. I am minutes away from the light rail line station near my apartment and a mere 35 minutes from the downtown. The rail system as near as I can tell is 100% accessible. The elevators are as clean as can be expected and unlike a city like Boston and the gritty Northeast in general homeless men do not use the elevator to get high or use it as a toilet.  The busses are merely okay. The drivers stop but seem to have an aversion to using the tie downs for my wheelchair. I can only assume they are accustom to those who use large heavy and power chairs. I have been repeatedly told "You are only going a few stops. You don't need to be tied down." This is great in theory but if the bus is in an accident I will become a projectile. What has struck me the most about the Denver area is the number of people with visible disabilities out and about. I see blind men and women daily. Typically they form a  guide dog team but I have observed many cain users as well. I find the dog human partnership in this regard fascinating in part because of the intense bond formed. What I find of great relief is not being alone. I see people using wheelchairs daily. Earlier this week I got onto the train at Union Station with another wheelchair user. She was a young woman in a power chair. She could not have been more typical--tight black pants and bright yellow top with a snarky line. What set her aside in my mind was the fact she was non verbal and used an iPad to communicate. I silently thought to myself this is going to be a disaster when the train operator wanted to know her destination. Without a hitch, he looked down at the iPad and established her destination. This was strikingly ordinary and uplifting. Maybe being green is not so hard.

What I have not done is explore too much. My main focus has been on unpacking. To this end, every box has been emptied. As a neat-nick living with boxes scattered everywhere and a cluttered kitchen is more than I can tolerate. Everything has been put away but don't ask where it is. In the immediate future I plan to explore the medical marijuana industry. Medical marijuana is legal and abounds in Colorado. The Denver Post has an entire section on cannabist culture. Sadly, it appears cardiologists take a dim view of medical marijuana. I asked about any heart related benefits of medical marijuana and the question was not well received. As a model of patient compliance I quickly let matter drop. 

I will readily admit I am very concerned about the future. My health insurance status remains unclear. I cannot move forward without health insurance. It is priority one as no one can afford heart related health care without vigorous insurance. Forget about invasive tests, medications alone can bankrupt a person. Next generation blood thinners represent a huge advance in health care but the cost is outrageous. A seven day supply of Eliquis costs well over $100. For the time being I can afford this medication thanks to the coupons I was given. Yet when the coupons expire I have no idea what will happen. What I do know is that I am at long last about to burst forth with a series of posts. I also have begun reworking long term projects that have languished for a while. If anything positive comes from a heart attack it is the knowledge that life is far too short. It is time to get things done. That time is now.

Thursday, July 20, 2017

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.