Chapter Twenty: Health Insurance Horrors

When I graduated from university, I was a bright-eyed and bushy-tailed dreamer about jobs, working, and the world outside of my college campus. This was it. I, Mary H. Wu, was going to find my dream job and make the world a better place. I had all the life and health experiences to show the world my determination, positive attitude, and abilities to surpass and survive anything and everything. Needless to say, I was more than idealistically confident that my GPA of 3.95, polished resume, rubbing elbows at networking events and with the university’s Career Services, diversity in classes I took, and high recommendation letters and references from my professors would nab me a job quickly and easily. I was clueless about what I really wanted to do with my life, but I knew I wanted to do something in social services or politics because of my certainty that I could and would make a difference.

My confidence was quickly deflated when I could not find a job after breathing, living, and eating up Help Wanted ads on the Internet and local newspapers. The number of jobs I applied for, cover letters I crafted, interviews I embarked on, career outfits that I hunted for, and multiple resumes I possessed on my hard drive were countless. I was quickly becoming frustrated, confused, and found myself muttering more than once to myself: “Why the hell doesn’t university prepare you for this crap? “ or “How can all the jobs I apply for expect experience when I have to start somewhere to try to gain the work experience?” To make matters even more frustrating, my Dad was nervously eyeing my progress with asking: “How’s it going? What jobs did you apply for today? Anything look good? Any interviews?”

I was confused by my Father’s anxiety. My Father was never the kind of parent that pressured, hovered, or questioned anything even remotely related to my studies or work. I always placed pressure on myself. For as long as I could remember, his XY-chromosome ways consisted of philosophical ramblings and relaxed attitude that I could take on anything that happened in my own life and that he was there for me and to guide me, but never do anything that I could do well on my own. Then, my Dad really shocked me when he suggested to me one evening while I was moaning and groaning about the inability to find a job: “I was thinking that you should get a government job.”

I wrinkled my nose in disgust as though I just smelled cheese gone bad. I thought of my Dad’s relatives who had government jobs. Most of them were paper pushers or computer slaves. I imagined myself chained to a computer and I shuddered. I said flatly: “I don’t want a government job. I don’t want to be pushing papers. I want to make a difference and help people. I want to work with people.”

My Stepmom pointed out: “You can still make a difference and help people if you work in a government job.”

Now, I was really confused and stunned speechless about them joining forces together that I should get a government job. I eyed them warily and asked: “What’s this about? Why are the two of you so gung-ho about me getting a government job?”

My Dad said carefully: “Well, a government job has the most benefits…like health insurance benefits to cover your medical expenses.”

They both explained bluntly: “You know that you are not going to be on your Father’s health insurance forever. You have to get you a job that gives you health insurance to cover all your medical stuff.”

My chest tightened and I sputtered: “But, that isn’t fair! Just because I have health stuff does not mean that I should be stopped from doing what I love and want to do with my life!”

“I’m not saying that,” My Dad said sharply. Then, he turned calm and quiet and continued: “I’m just saying that you are going to get kicked off my health insurance soon, so it is really important for you to find a good job with good benefits.”

I immediately protested: “But, what about a job that I love to do? Isn’t that important? I am going to spend more than half my life working, so I might as well do something I like.”

“Nothing is more important than your health,” my Dad said with finality.

Then, I retorted back finality: "Don't worry, Dad.  I'll find a way to make it work with a job that I like to do and getting health insurance."  Case closed.

I could not believe that I may have to spend my life doing something miserable for over 7 hours a day just to hold on to health insurance to cover my medical expenses.   I refused for that living nightmare to happen, but it was the first time in my life that I wondered how come everyone just did not have health insurance in the U.S.A. and why did health insurance have to be provided through a job? If health was the most important and precious thing in the whole wide world then why did people have to work and struggle for their own health?

So, the days went by with me looking for a job. I went on endless interviews. I eventually found temporary work through a job agency for this psychotic corporate woman who seemed suave and sophisticated on the surface, but was a massive mess underneath. My job was typical office work of answering phones, typing up email responses, faxing documents, and cleaning up her office. I could handle the office work fine, but was taken aback and stunned when I had to clean her disarray of personal belongings in the office space that included pictured frames, home goods, and hygienic odds and ends. It was the weirdest and strangest experience to work all alone in this office with her. I lasted less than a month. When I told her that I was resigning from the position, she refused to sign my timesheet and pay me, resulting in our professional relationship ending on very unprofessional and nasty terms. I then gained relatively steady part-time work as a receptionist at a tennis club, and was excited and happy when I received my very first paycheck. My Dad beamed with pride, but then snuck in realism: “That is great! But, part-time work is not going to cut it with giving you health insurance! You need a full-time job, and it is best to find it quick because you are about to go off my health insurance.”

I pouted and scowled and continued to hunt, but then the dreaded day finally came when my Dad handed me a letter with the announcement that I was no longer on his health insurance policy. My Dad instructed grimly, “I want you to call my human resources department about what to do next.” I never snapped at my Father when he gave me responsibility, but the frustration, anger, and pressure that I was apparently smart enough to ace my university classes, but not ace real life because I could not find a full-time job made me rear my ugly head and snap at him, “Why can’t you do it? Why do you always make me do everything?”

Without missing a beat, he said simply, “So, you’ll learn, know, and experience. You won’t learn if I do it for you. So, do it.”

I grabbed the paperwork with such force and fury that my Dad immediately walked away. I had no idea then that my Father had shoved me headfirst into my very first real world task: Dealing with the U.S. Healthcare System. I skimmed the paperwork and a whole new language and words began to seep into my naïve brain. My days of searching for a job were soon combined with trying to understand what was about to happen to my health due to a loss of health insurance. When I made that very first call to my Father’s human resources department, I did not understand what the big deal was about no longer being on my Father’s health insurance and saw this as a complete waste of time. My brain was more focused on my job search than dealing with this mumbo jumbo about health insurance.

A bored, yet decently polite human resources assistant tried to explain to me as patiently as she could, “Okay, so, your Father’s primary insurance, Pomco, is no longer going to cover your medical expenses.”

“Okay,” I said just as boredly, “What can I do then?”

“So, until you get a job that provides you with health insurance, we can offer COBRA.”

COBRA? Who the hell made up these words? It sounded like a rattlesnake. “What’s that?”

“Temporary health insurance, but you have to pay about $500 per month for it….maybe more, but not less.”

Did I hear her right? I shook the phone, gasped, and exclaimed all at once, “Are you kidding me? I don’t have that kind of money when I do not even have a job! How do you expect me to fork over $500 when I do not even have $1 in my wallet!!!”

“Yeah, but your Dad has that kind of money, right?”

I was speechless. I had no clue what to say to her. The rest of her talking was just white noise to me. My stomach began to turn and twist with panic. My mind began to race.  What was I going to do if I could not find a job that provided health insurance? What was I going to do about my medications? My doctor appointments? My bloodwork? Who or what was going to cover my doctor appointments and medications now that I did not have health insurance coverage? What if I wound up in the hospital again? How would my family or I afford everything if I were to get sick all over again? What if I lost my kidneys all over again? I was starting to feel all sick and scared about not being able to find a job with health benefits and about my health. Talk about a day filled with bad news.

When I got off the phone with her, I contemplated asking my Father for the money for COBRA, but I did not want to. So, this was my first taste of adulthood and handling things on my own. It began to sink in that my Father was forcing me into this adulthood and it was time for me to take responsibility for the medical bills madness and health insurance headaches that he had coped with for so long. It dawned on me: In good old red, white, and blue United States of America, no one could literally afford to get sick.

“Well?” My Dad asked expectedly when he heard me get off the phone.

I forced a smile. “Uh…well….umm, Dad, I just want to ask you how long do you think I can go without my medications and doctor appointments?”

My Dad frowned. “What’s wrong? What did they say?”

I explained everything to my Dad. Just when I thought I was going to be sick to my stomach all over again, he said these magic words: “I almost forgot. You have Medicare. I signed you up for that you when you were just a little kid and first sick. Keep up with the job search and when the time comes for your medications and doctor appointments, we’ll go from there.”

My job search went to backburner as I faced the reality of my health. Suddenly, every single day and twice a day that I had to take my colorful handful of medications were precious. I savored that each pill was keeping my kidneys alive and well. Every precious pill seemed to disappear faster and faster each day when it finally came to that point that I was completely out of medications. As usual, my Dad declined doing anything with my medications and handed responsibility to me on a silver platter: “Okay, call your pharmacy to get a refill on your medications.”

I glared at him. He just ignored me. I was forced to pick up the phone and give the pharmacist the medication numbers (known as the RX numbers) and they said I could pick up the medications the next day. So far, so good. As I trekked to the pharmacy and waited on line, my imagination began to run rampant that maybe this whole “I am no longer covered under my Father’s health insurance” was some conspiracy or Candid Camera ploy to coerce me into taking better care of my health and not take my health or second transplanted kidneys functioning relatively smoothly now for at least a decade for granted. I grinned at this conspiracy and thought to myself: “Okay, I get it everyone! I will take even better and top notch care of these kidneys!” If only my imagination were the truth because when the pharmacy presented me with my large brown paper bag with twisted topped and tall containers of my color-coded and various pills, he said to me after ringing everything up: “Uhm…so, that will be $2,300.”

My smile vanished and I stopped leafing through my dollar bills. My head snapped up and I heard a slight crack in my neck. “What?” I whispered, hoping that I heard him wrong.

He gave me an awkward half-smile. “Uhh…$2,300.”

I stared at him. He stared back at me expectantly with his hand out to pocket my supposed $2,300 that I apparently had just lying around in my wallet for grins and giggles. I did not say anything and his stare broke away from mine as he asked uncomfortably, “So, you are going to pay for that with credit then…?”

With my mouth dry, I finally mustered the ability to ask him, “Can you ring that up again? I don’t understand how my medications could be that much money.”

The sound of people clearing their throats and groans from the ever-growing line was audible, but all I saw in front of me was this kid who confirmed that I was indeed knocked off my Father’s health insurance. This kid tried to explain to me, “Well, you see, you are no longer under your Father’ health insurance. Without insurance, your Cellcept and Prograf are each almost about a $1000 per bottle and per 30 pills for one month. The other blood pressure medications, antibiotic, and Prednisone come to about $300.”

“Wait! $1000 for 30 pills?!” I practically exploded, not being able to withhold my coolness anymore, “That means that each pill is like $30 something odd dollars. How can one freaking pill that is smaller than my thumb nail cost $30 each?!”

I failed to realize that my voice had gone up about ten octaves. The murmuring noises behind me silenced and this poor cashier kid shrank down low and mumbled, “I’m sorry. I don’t know what to tell you. Uhmmm…well, let me see I can get the manager and we can figure out something with the payment.”

I scrambled through my wallet desperately and finally found the Medicare card that my Father had placed in the palm of my hands before I came here to pick up my medications. I practically tossed the card into the cashier’s hands as if I were on fire. “Wait! I have my Medicare card…try it!”

I was brushed off to the side and the long line continued to cattle-prod forward. When I was nervous, I shook my leg like a dog shaking fleas off itself. I tried to read through tawdry celebrity magazines about their screwed up lifestyles in vein and was finally called up to say that I only had to pay about $500 because Medicare covered only the immunosuppressant medications of Prograf, Cellcept, and Prednisone. The $2000 portion was cut out. Thank goodness I had a credit card.

When I raced back home out of breath, I triumphantly raised my brown paper bag of pill bottles and rehashed the whole scenario with my Dad. He said more so to himself than to me, “Well, I guess the one smart thing I did in my life was sign you up for Medicare.”

Yes, it was abundantly clear to me right then and there that I was indeed no longer on my Father’s handy dandy health insurance and that Medicare Parts A & B was my absolute saving graces. Not to get overly technical, but both Medicare and Medicaid are U.S. government health insurances. Medicare catered to those 65+, the disabled, and ONLY kidney transplant recipients (not any other organ transplant recipients, mind you). Medicaid catered to the poverty-stricken where the government was eagle-eyed on monitoring that income did not exceed a certain amount. My medication mayhem made me intensely curious and a deep urge to understand this U.S. healthcare system and make a difference engulfed me. I started to make numerous phone calls nearly everyday to the Department of Social Services in my area, Medicare, the Transplant Social Worker at the hospital where I received my second kidney transplant, Social Security, and more. I read hungrily from the thick Medicare booklet that my Stepmom mandated me to read. In sum, I forced myself to understand anything and everything related to health insurance and to the U.S. Healthcare System. Everything was utterly confusing and my head was often spinning with information overload after these phone calls and reading sessions.

I was utterly thankful to the heavens above to this Federal-government sent Medicare insurance, but there was a literal price to pay. Four times a year, I paid up to $400 quarterly to hold on fast to my Medicare. I was fortunate that I was able to afford this with my Father’s help at that time who insisted that he paid while I return to the focus to find a full-time job with healthcare benefits, but there were too many people who were not as lucky as me, which meant “insurance-less.” Yet, no matter how lucky I was, I loathed this monetary dependency on my Father. More than that, I dreaded and felt nauseous whenever I faced the last couple pills or so because then I had to revisit the pharmacy and ensue in a verbal brawl with them yet again over forcing Medicare to pay for my immunosuppressant medications. For some reason or another, the pharmacy’s computer system would always alert them that I was “insuranceless or aka: jobless,” as though I was a criminal when I was really a victim of this massively confusing U.S. healthcare system. I bit my tongue until I tasted blood when the cashier rang me up that I still had to pay in the hundreds and close to thousands. To save as much more money as I could and not have to deal with additional health insurance headaches, I did something that I thought I would never do: I went for more than a year without seeing my nephrologist. It was not that I did not want to or could not see him. I knew I could and should have, but even with my Medicare coverage, I also knew that seeing him required me to pay a fat co-payment sum as well as additional money out-of-my-penniless-pockets. It was a helpless and most shameful feeling when I avoided **Dr. Friedman, but I simply lacked the funds and knew that my medications were more of a continued and mandatory requirement that had to come before the doctor appointments.

The Hallelujah chorus supposedly rang out when Medicare Part D was established. It promised and shed a glimmering hope that there was now coverage over all kidney recipients’ medications. I attended a seminar to understand and digest this Medicare Part D creation. At this seminar, I was the youngest and surrounded by people in their 50s to 70s. I vehemently took notes and asked questions while the moral majority of fellow audience members looked dazed and bewildered with the pie charts and pamphlets. I was disappointed to learn that Medicare Part D was useless to me because there was an additional premium sum that had to be forked over along with the Medicare Parts A & B quarterly $300+ sum that I was paying. There were many different premium sums that matched with their suitable partner prescription plans under Medicare Part D. If it turned out that a prescription plan I had chosen under Part D did not meet my needs, I could not change that plan until a year later. To me, that meant a year full of possible wasted money. I looked around me in a room full of people over thirty years older than me. It was a startling awareness that me understanding all this was actually much easier than many people who were in their 70’s. It seemed unfair and disgusting to me that these people who were in the role of grandparent had to fight for health and tackle understanding something new to try to live out the rest of their years rather than enjoy their health and what years they had left. I felt so badly and angry for all of these elderly people, and yet extremely fortunate that I was at a place in my life that I could understand what was happening with health insurance.

After the seminar, there were ongoing murmurs of confusion and the same thoughts returned to me that if health was the most important thing in life, then why was it something that has to be struggled with and fought for in the U.S.A.? Without health, there was nothing—nothing to do or enjoy either alone or in the company of the people we loved most. However, even with that knowledge and after all my reading, researching, and phone calls, the healthcare in the U.S. was a battlefield filled with one exploding minefield after another that befuddled and scared the sick. There were co-payments, premiums, co-insurances, primary and secondary insurances, deductibles, pre-authorization, prior-authorization, medical necessity, pre-determination, and even more words that made up a language and system that only succeeded and resulted in anxiety and aggravation when a person who was so sick already had more than enough to deal with.

Right out of university, health insurance horrors in the U.S. and being kicked off my Father’s health insurance were my first big reality checks of real world and life outside of the safety and lush green university campus. I continue to deal with Medicare and health insurance headaches because I have to and not because I want to, and the harsh truth that was shed on me after all these years of dealing with the U.S. healthcare system is, yes, money does not buy happiness, but money certainly does make life and living a whole hell of a lot more comfortable and livable in good old red, white, and blue U.S.A. And, so I continued to fight to take care of my kidneys as best I could with Medicare and search for a full-time job. I was discouraged and depressed with juggling both jobs and craved to return back to school where everything was predictable and safe when my Dad had to stop me again from wallowing in one of my self-pity moods by asking me: “What do you think the point of a job is, Mary?”

I stared at my Dad as though he asked me a complex and unsolvable mathematical equation. I finally admitted: “Well, at this point I think a point of a job is so I can get my stupid health insurance to see Dr. Friedman again, get the costs for my medications in the double digit rather than triple digits, and make money.”

My Dad shook his head all disappointed in me and said, “No. The point of a job and work is to contribute positively to society.”

I sighed. “Dad, that sounds all nice and dandy, but let’s face it that I need a job to make money and get health insurance. I’ve been searching for months and getting nowhere. What if I never get a job? Why can’t I get a job? School made real life seem so easy and welcoming, and I guess they are all just lies. I just want to be a kid again. Life was easier.”

My Dad chuckled. I expected him to throw another morsel of wisdom, but somehow my Dad knew when to keep quiet and just let me get lost in my own thoughts.

I finally got my foot in the door about a month or so later when I received the news that I had been waiting for since I graduated from university that I would work full-time at a nursing home as a recreational therapist/activity leader. I had applied when I just finished university, but they had chosen someone else before me. I was their second person in running and so since the first person they chose did not work out, I was the one who had to step up to the plate. When I received the news about my first full-time job, I could not contain my excitement of jumping around and pumping my fists in my air as I exclaimed to my Dad and Stepmom: “FINALLY!! A full-time job! I got it! I got it! I’m going to get money and health insurance and all those things! YES! Everything is FINALLY going according to plan with first finishing school and then a job! Best of all is this job combines everything I want and need—a job that I like with helping people AND health insurance.  Nothing tops that!!  WOOT!!!”

My Dad laughed jovially along with me, but could not resist but say in this lectured tone: “Life does not always go according to plan. We’ll wait to see what happens with this job.”

I nodded agreeably with a wide grin, but inside, I thought to myself that after all these years of my world and life being shaken up and rocked with my health, my life was now going to go accordingly and nothing and no one would stop that from happening. And, so the newest chapter of my very first full-time job with blessed health insurance that I needed and fought for was about to begin.